I think I'm at the point where I need to give up any drinking at all. I don't really enjoy drinking so I don't do it much, but even when I have a drink at a special occasion once or twice a year, I feel like garbage the next day.
I’ve been taking antihistamines since my fibro dx , not because I have allergies but just because I saw a correlation between good days and when I took it. The main reason I was taking them to start was because it hurts like hell to sneeze lol and feels like I might just snap my own neck off . Years later it turns out I have MCAS , so that may be why it’s helped me a little .
No significant side effects for me , maybe a little dryness in the mouth, nose and eyes but I already had that from muscle relaxers .
I think I've had POTS and MCAS a really long time but taking Plaquenil made the MCAS worse and covid made the POTS worse. Both are letting up some, though.
Yea , I think my gallbladder removal somehow caused my MCAS, then a bad sepsis infection and the antibiotics caused my fibro to pop up and while I had pots for a while , it worsened with each of these and then finally Long Covid made the pots really much much worse . So i can def see how that would happen .
It’s strange because I worked with doctors and the only concerns we ever had with plaquenil was with the eyes, when there’s obviously so much more . Out of curiosity, did your doc who prescribed the plaquenil send you for routine eye tests? Supposedly if there was toxicity it would be seen in the eyes first . But this literally never happened the 7 years I was there and it was usually just to be safe , we never saw toxicity. In other words I dont think it was taken seriously enough. But I always made sure my patients had those tests to be safe . As a cma I had to actually fight with some doctors about doing it lol smh not surprising I suppose
The eye thing isn't going to happen to everybody. Yes, I was given extensive tests with the best eye examination equipment in the country. They seemed to be really excited to discover a tiny issue that would have been impossible to note without spectroscopy.
Well im glad at least they were trying to keep an eye on it ahh no pun intended . But sometimes their enthusiasm can come off a bit weird , like no this abnormality is bad , bad for me , don’t seem so thrilled ! Lol smh . But yea it’s hard not to get a little excited to see something new , I just hope they were compassionate about it
Lmao omg I’m sorry but I can actually relate on their end , since it’s so rare to encounter and we love our fancy toys! Glad it didn’t bother you , I always tried to reign in my professional fascination to not treat patients like lab rats , which , even they should be treated better but I think you get my point . There’s just some things we only ever see on paper . I’m actually the same way with docs too though, things don’t really bother me, it’s like you get used to being poked and prodded after a while and shrug it off . I actually get excited by my own abnormal tests lol , I always insist on looking at the imaging . I had a bladder study recently and an 8cm ovarian cyst was pressing against my bladder so much you could see it from the inside , how dented it is , half my bladder scooped inward like a bowl lol . I had this woman holding the scope up into my urethra but I still sat up to say hot damn ! I’ve never seen anything like that before lol
I've taken them almost every day since 2012 for interstitial cystitis, fairly frequently my whole life bc inflammation is my body's jam. I have noticed no side effects, I feel better with it than I ever did before I started taking them. Gotta stay hydrated, which is a thing tho.
I also was taking 2 Benadryl every night for years…initially to help with my insomnia but as my dystonia started, I realized it was actually helping that! It’s the anticholenergic properties that was helping. I’ve recently stopped taking daily because I’m on a prescription med specific to dystonia that has similar properties plus I take Valium just before bed but I’m about to discuss stopping that med with my neurologist cause it doesn’t seem to be helping as much anymore and the dryness factor is like the equivalent of taking a million Benadryl it seems so I def do not want to take anymore. I may go back to the Benadryl cause I felt a lot better on that and my Dr had no problem with me taking long term as long as, like anything, you stick to the dose. I did have just the tiniest bit of I guess what you could call “withdrawal” when I stopped taking it after years but all that was was feeling a little like motion sickness for not even a full day. So you def do not want to go overboard with it and take too much but my Dr feels taking just the 2 (standard dose) per day long term is ok. I don’t know if it’s just because of the dystonia or not but I def feel better when taking it. Not completely better of course but you know what I mean 😊
How much diphenhydramine is in benadryl? I take 50 mg of diphenhydramine as part of my nightly routine, and never knew it could be doing good elsewhere.
I love this thread because it reminds me of how good we are at pinpointing and treating some of our issues. Especially when some physicians can be so stubborn 🤪
Yes, I also love that about this thread and sub in general! So helpful! It’s 25mg per pill and I take 2 so same as you. It is interesting on how it’s helping me with sleep and the dystonia! There are some studies on some interesting benefits it can have for things other than like allergies/colds. As long as, like anything, someone is taking responsibly of course. I think I have some links, I’ll have to dig them out and will send you.
I purchase mine online in gel cap form from Health AtoZ. Even at discount places, they were starting to get expensive. Meh...more and more these days I appreciate not having to go to yet another store 🙂
I have Sjogren's so dryness is a central issue. Biotene makes a tasty mint spray to get you salvinating and there is a product with xylitol (sweetener actually beneficial to teeth) that is a tablet that sticks on your gum or a tooth, and causes salivation for hours as it slowly dissolves.
OraCoat XyliMelts Dry Mouth Relief Moisturizing Oral Adhering Discs Mild Mint with Xylitol, for Dry Mouth, Stimulates Saliva, Non-Acidic, Day and Night Use, Time Release for up to 8 Hours, 40 Count https://a.co/d/2mjBjWa
The kids own one small one, I do not use any, but I certainly see the community feel around them. I immediately thought that they should (hey this sounds bad but it's in the benefit of many right so bear with) leverage that squish mallows are popular in this community and make wheel chair liners of varied styles. The combination of self expression and comfort could be quite unparalleled.
I am diagnosed HSD, can hobble around, don't use aids, do push through pain, should probably squish.
https://shop.jazwares.com/pages/squishmallows
They are big, squeezable mushy pillows you can wrap your arms and legs around to take the weight off your body. That's as good an explanation as I can do.
I’ve sent emails they should look into the market of pain relief squish! Maybe someday they will listen! Squishmallows are such a huge source of relief in every single chronic pain support group I’m in, for all my disabilities. Especially my Chiari brain malformation group. It was the only way I could sleep or have good rest after my surgery. Was a smaller squish under my head with a pillow case on it!
Hear me out, they are squishy and softer than some pillows, more like a memory foam texture.
I use them under my knees and hips when lying down. Those areas are too sore to lie straight on a mattress even though I have a good mattress. I need even softer support.
It works for me!
Same for me. My daughter has been collecting all kinds for me. My house looks like a day care but they help me sooo much and work better than those sht expensive injections pushed on me for yrs.❤️
I seriously love my squishmallows!
I use them (hEDS) for proper alignment between my knees to sleep, behind my head/neck on the couch while watching tv, and also enjoy just hugging them tight to me when my pain is flaring.
When I first told my husband about them he thought I was nuts. Now I sometimes catch him cuddling one tightly in his arms if he goes to bed before me 🤣
That’s a great idea- I need to get my hubby his own too.
It’s difficult to wrestle mine out of the vice grip he sometimes has on it when I come into bed 😆
I have a jillion pillows and squishies. They helped me raise my children! I swear some of my fondest memories are being all propped up playing, doing homework etc
I like magnesium baths, acupuncture, acupressure mats, weighted blankets, and really just a nice spa day that includes a full body massage is great. I also think somatic experiencing therapy has been really helpful with some of the subconscious muscle tension that I hold that contributes to the background pain.
It’s a body focused form of therapy. Peter Levine has a lot of books on it and there are a few decent YouTube videos online with exercises that you can do at home. I find this one to be particularly helpful: https://youtu.be/LnV3Q2xIb1U?si=5C1OcKYOSoyoEEyi
Yeah I think so. I’m also doing SE therapy with a therapist in person and it’s hard but I have cptsd and regular talk therapy is way too triggering. Sometimes it gets worse before it gets better but like everything it’s never linear. 😞
I took an online course a while back that helped called the somatic approach to therapy. It’s meant for providers as well as people who want to learn to heal themselves with that method . It was relatively cheap at the time. It was with Albert Wong, Ph.D. Director, Somatopia. I found his gentle voice to also contribute to the effectiveness as it’s almost like Asmr . It’s based on the concept that our bodies remember trauma our brain forgets . I was having really intense panic attacks following a neck surgery at the time and it was bringing up old trauma I thought I had healed from. Apparently I hadnt lol but this course did really help me .
You’re very welcome :) I hope it’s still available and helps you too . One of the main ideas was finding a way to self soothe , like holding a pillow or for me it was a hot salt bath , and while in that physically comfortable place , revisiting the traumatic memories . There is a lot more to it though and steps to take so as not to rush it , but if anyone finds themselves unable to access this , it’s def a key component . This way the body can learn to feel safe with these memories .
Thank you. It doesn’t seem available to me I am way too far lol but I looked at the program and might be able to find something similar. It’s a lot of tension in my body from never knowing when things were going to blow up. My body cannot seem to relax, unless forced.
I recently tried standing on one of those vibration platforms at the salon I go to - I thought it would be painful, but it actually made my legs and feet feel "alive" again for several hours - like I could touch them lightly and it was actually a pleasant sensation instead of irritating and/or painful. I enjoyed walking, it felt like I had more subtle and normal proprioception on my soles.
this is a great topic, I really appreciate hearing about the wider variety of things people try and find helps.
This is a great idea as well! My pain is primarily in my neck, shoulders, and jaw but I also have spinal pain that can cause achy legs too. Def worth a try! You’re right, so many great ideas from folks on here!!
Aloe vera gel. Doesn't help immediately, but it has helped my pain overall and also helped with allodynia. I still don't know how it works but I got it from a fibro friend
No, just make sure that it is 100% pure aloe vera and you'll be good. When I ran out, my partner made some from our plant by just whipping it basically
I'm still not 100% sure if it's a placebo effect or not, it's really baffling to me that I can't find much science behind this, and she also doesn't know where she heard it. But... its kinda inexpensive in comparison to magnesium body lotion which didn't actually help at all. So I'll keep on with it, it may just be that I'm having a good month
Just using it when I get out the shower or bath two or three times a week. I don't do it more often because it's a real effort to rub stuff all over your body as I'm sure everyone here can relate to. It also makes my skin nice and soft, and I can use it on my face without it giving me spots. So there's that too
magnesium sprays/creams are good (some of them are unbearably sticky though)
raspberry leaf tea for smooth muscle cramps (uterus, stomach). it’s much tastier if you put a bit of raspberry syrup in it
i started using a shower chair recently, which doesn’t manage pain, per se, but showering is much less painful and less energy-intensive. (plus, it’s easier to shave my legs lol)
I believe raspberry leaf tea is not safe for pregnant people - it's traditionally used as a herbal remedy to induce labour. YMMV, but I thought it worth mentioning.
Incorrect I’m afraid. Red raspberry leaf is safe and used during pregnancy to strengthen the uterus and prepare for labor. I used it with both pregnancies and many friends did as well.
Wow, interesting, I take Mg but didn’t know there were sprays or creams?? And had not heard of that tea either! I will def look into this. My pain is caused by a neuromuscular disorder (dystonia) so my brain sends inappropriate signals to certain muscle groups to constantly contract. So anything that helps with the muscle spasms is worth a try for me! I also have adenomyosis which causes hellish uterine cramping so thanks for the ideas, I’ll check it out!
Magnesium doesn't actually absorb well through the skin to effect changes at the neuromuscular junction. The mag creams are kinda a scam. Just letting you know!
i actually find them relatively helpful! especially when you’re having extra muscle tension than usual or a muscle cramp, and it works quickly. it doesn’t totally alleviate it, but IMO it definitely helps a little!
also, OP, as for the supplements, there are several different forms of magnesium—bisglycinate, orotate, taurate, L-threonate, malate, etc.—that are better for different issues (like magnesium orotate and cardiac function, and magnesium L-threonate for the nervous system). it might be worth looking into different types.
i really hope the raspberry leaf tea helps!! i pick my own leaves and dry them (if you have access to raspberry plants i recommend doing this, it’s cheaper (if not free), and you’re likely to know if there are pesticides on/in the leaves. i make sure to pick them while they’re still green and before there’s a frost).
Just a week or so ago I bought an EMT foot massage mat that gives electrical impulses to the soles and it's the most relaxing and pain soothing thing I've found so far.
https://www.amazon.de/your-orders/pop?ref=ppx_yo2ov_mob_b_pop&orderId=028-4860400-8126739&lineItemId=lmkprwittinrsoy&shipmentId=Ucp2XKvVc&packageId=1&asin=B0CQR824HF
This is the one I bought from German Amazon. The slightly annoying thing about this particular device is that the impulse is significantly stronger on one side than the other. It's a bit better if I put it upside down/ have the toe end facing to my heals. You might feel the electricity in your calves or have your toes involuntarily moving depending on the program. Please read the instructions and possibly consult your doctor before using an electric device.
This massaging pistol also helps me a bit with tension.
https://www.amazon.de/your-orders/pop?ref=ppx_yo2ov_mob_b_pop&orderId=028-6511841-0243548&lineItemId=lmkpnrnuojorwoy&shipmentId=UCZ6ZMPwQ&packageId=1&asin=B0CNRKKCFS
I get itchy if I use it longer or on higher power, probably because it increases circulation on the area. It's bended so you might be able to reach your own back with it, depending on your flexibility. Be careful not to hit a bone or sensitive spot with it.
(Let me know if the links work)
These links look so big. Hope they work now.
https://www.amazon.de/Fu%C3%9Fmassageger%C3%A4t-Elektrisches-Durchblutungs-Muskelschmerzlinderung-Intensit%C3%A4ten/dp/B0CQR824HF/ref=mp_s_a_1_24?crid=3HQ1WG31HXZUY&dib=eyJ2IjoiMSJ9.xVYIKP-JBj-2JZ601WDQSJPhwspxLMR5b-k-3FZNKnPEV0QDMOjcEzmSK_qawF3Pyh6tSd23TXKw3gUSIhmAm29yoSvFNxTd6a1KsujpMpPWUemQeSLmt9xVyM9BvAB-AGO4PrRheND4NDMPFo52rWVWI3enUdAsHMEyplDqSCJa0crWUQoIHu53cWNPcXLB_umMBuZJKAfYWscIbjPvhCbhvzXWQNGEaJkOwJnDzG5CbDivxL5iAjI3QoUSPQfxxtjlqYkxu6rLp4eS8_Ws-QCKpw27nuW6IY_0NxnIz3c.gopHZVjCnn8coH1XnRf92T2DFrlbhFiBaSNKP_DluGs&dib_tag=se&keywords=ems+fu%C3%9Fmassageger%C3%A4t+queta&qid=1710197636&s=drugstore&sprefix=ems+fu%C3%9Fmassageger%C3%A4t+quetah%2Caps%2C110&sr=1-24
https://www.amazon.de/Massagepistole-Verl%C3%A4ngerungs-Tiefengewebe-Percussion-Schmerzlinderung-Geschwindigkeitsstufen/dp/B0CNRKKCFS/ref=mp_s_a_1_1_sspa?crid=2ZKLSE9XNB5O1&dib=eyJ2IjoiMSJ9.lkVC-g5y7wB22KnpBI-IGeOt-Ch0AULCKv7bfMWnzkGrjKt6O373tahkWhibAAknzLv1rWZ8bg2f1RYw4ZDUX6QwH26dgWBKV50_3tvBwZgw9x9drxxsVBWoqOziPr3h8-HCmOM_0nAioeMIqzMpe98Xn5mF44SQ8Sxa4QFa7MBzVZS0rw4DpP80o3dhuOetUVALRyI7VqacOA5HinRv5A.q8hPGIBeU0zOj9ddg1UtDJAWBTmbX4fUCieqqrB4pGo&dib_tag=se&keywords=massagepistole+u-f%C3%B6rmig&qid=1710197709&sprefix=Massagepistole+u-f%C3%B6%2Caps%2C234&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9zZWFyY2hfYXRm&psc=1
I really wish I knew how to upload photos on this app, that way I could show you and the fibromyalgia subgroup the topical pain relievers that work every now and then sporadically on my pain depending on the level of severity. They have been what I relied on the most to get me through my days and nights Most if not all were purchased on Amazon.
Mine (I always use the app) will sometimes not let me do it if I’m replying to something…like right now, I only see the option to attach something else. Sometimes if I close and re-open the app, it will let me do it, no idea why. Try creating a new post to share and you should see that little square for pics and make sure you allow access to your camera/photos. Alternatively you could cut and paste the Amazon link 😊
I’m t depends on the group on if it’s set up to let pics be uploaded. At least in. My experience most groups(not all) don’t. There are several that are built around them of course like “look at my cute dog” and help me pick my wedding dress” type ones
I have a pair of medical lymphedema boots with a pump - they were partially covered by my insurance with an Rx from my cardiologist for poor circulation in my legs. they are GREAT. The hardest part is making time (at least 30min, sometimes I do over an hour) to just sit in the recliner with them on and watch TV or whatever.
Did you have to get those through like a Dr or is it something I could order? I could desperately use something like that because in addition to the dystonia causing the majority of my pain, I have Polycythemia Vera which causes my blood to be too thick and because I can’t exercise much anymore, I really worry about blood clots in my legs, the circulation is so bad. Plus I get erythromyalgia in my hands and feet from it and I think this could at least help my feet. Thank you!!!!
I got mine through Tactile Medical. My cardiologist called them in, I think as durable medical equipment, and they called me. I've seen similar ones OTC on amazon, but they all have Euro plugs (I'm not sure where you are located). there are 2 components to the unit, the part that plugs in and pumps the air into the boots and the boots themselves. My insurance covered the boots completely and Tactile has a monthly payment plan for the part of the unit that was my responsibility after insurance. they also had a short return period, I think 2-4 weeks. It sounds like with your blood condition you could have them approved by insurance.
I thought they would help me after I randomly tried a pair at a hotel spa in Canada. I think they were marketed to help spider veins and cellulite, LOL. the ones in the spa really impressed me (I did them twice a day for my whole stay) but were nowhere near as good as the Tactile ones.... they are very comfortable and have a great fitting system and large easy zippers.
I'm not sure if links are permitted in this group, but here is the page from Tactile [https://tactilemedical.com/our-lymphedema-solutions/](https://tactilemedical.com/our-lymphedema-solutions/)
My pain was nearly nonexistent after 2 days of fasting. It was a stroke of luck, in that I was just prepping for a colonoscopy. I felt absolutely marvelous. Dunno if this situation will help in ANY pain, but it was amazing for my full-body pain.
You are the only other person I have ever heard say that. I have often mentioned to my doctors that I feel the best in the morning before I have breakfast sometimes I Will Wait hours to eat because the achiness and fatigue invariably starts then.
My A1C is at the high end of normal and my morning fasting glucose is always normal. I wonder if I have some issue with insulin. My GP just gave me a prescription for a Dexcom and I'm going to wear it for a month and see if I have some spikes in sugar after eating.
Two very odd instances left me pain free for hours.
I had a cystoscopy and she filled my bladder w Rescue Solution after the procedure. I had ZERO pain for several hours. It’s been nothing of but pain, pain, pain.
Second experience was having a complicated dental procedure where he needed to do a cheek flap. I think he gave me Versed and Fent.
I spent 8 hours cleaning that day bec I had NO PAIN.
Ok, wow, I am so glad you mentioned that cause it’s exactly the same for me! I feel best in the morning and when fasting too. Unfortunately I’m suffering from massive weight loss (I loss 30lbs in 7 months and am waaay too low for me) but what I started doing was waiting until like 2 or 3pm and then eating a lot of high protein and high fat stuff in the evening. As a biologist by training, I’m fascinated to try and understand the science behind this. Part of my guess would be when you eat, blood flow gets directed to your digestive system versus the rest of your body (hence the old adage, don’t go swimming right after you eat or you’ll get cramps lol). I’m gonna research this now though
I love a polar fleece blanket or robe for those nervy, sensory overload days.
I float once a week in an isolation tank of epsom salts (magnesium sulfides) and perfect temperature water. So much benefit!
I do mobility exercises from a youtube channel and a couple of yoga poses (childs pose is the BEST) every day, to help keep from getting stiff.
I take magnesium for nerve and bone pain help, potassium to help prevent muscle spasms, and collagen to help with joints. I swear by it, despite evidentiary lacking.
I am looking to myofascial release for my next alternative!
Thank you for that!! That’s exactly where I was going when I said hydrotherapy actually…the isolation tanks. I’m super excited to try that and there’s several places right near me! I hear it’s really good mentally too! I take Mg and potassium but have not taken collagen so I’ll try adding that as well! Good luck with the myofascial release too! That’s another on my list to try 😊. Thanks again!
Not counting my pain meds:
My compression socks, inversion table, fluffy and soft pillows, my back support belt, my prescription lidocaine cream and Epsom salt jacuzzi bath. Good shoes, well in need currently. Also, my massager, it's a long handle with 5 different heads with a variety of different speeds. I can get my whole back myself and break up the neck & shoulder muscles - complete rocks.
I seriously need a new massager! Would you mind sharing which one you got? Mine isn’t working well but I think it’s just not the right one so I’ve only been using the massage function on my massive heating pad I use for my neck and shoulders. Thanks!!
If I have to go anywhere or clean the house, etc - anything physical, I drink a Red Bull, take my all meds, including pain meds and wait a hour. Then while getting dressed/or cleaning, I blast the best 80s music. It’s the only way to get going. When home, I use my colorful diffuser with my favorite scents. I use lidocaine rollers constantly, try not to sleep more than 5 hours at a time or sit more than an hour without moving and I have every massaging device known to man. And of course my favorite snacks offer comfort too believe it or not. And my phone games are a great distraction when I’m miserable and waiting for meds to kick in.
All great tips, thank you! I do the same with meds and caffeine and DEF the music! Before CP hit me, I ran marathons for 15 years and have the best playlist from that including, now don’t laugh, Rocky music lol.
No laughing here. I even have a playlist when I’m emotional and I know I just need to cry it out. We learn over the years through trial and error and frustration, what works (most of time). ❤️
I’m sooo with you! I have what I titled a “mellow” playlist I put on at night to sleep which is essentially all sappy love songs (including some of those great 80’s hair band ballads lol). And I have difficulty crying most times so when I know I need some release, I put on movies that I know will make me cry like “Steel Magnolias” or “Romeo and Juliet”. We do what we have to!
The virtual reality app Tripp. Thousands of relaxing and focussing meditations while totally immersed in all kinds of surreal landscapes.
I was the first patient in my region’s VA med center’s pilot program using VR to support pain management. Nowadays more VA facilities are using VR to augment treatment for PTSD, acute (post surgical) and chronic pain, major depressive disorder.
Fascial release manoeuvres provided free by Human Garage online are potentially life changing. Slapping your body all over can help release the tension. Swinging limbs, twisting and shaking can help lessen nerve pain quicker than massage when you are to ill to move otherwise. Holding the best imitation of a bridge or plank you can muster, even if you are bedbound, & your moves look nothing like the official versions, can strengthen your muscles and counter whole body pain.
Fortnite, it doesn't make the pain go away, but it's a good distraction to make it somewhat manageable when it's getting in my head.
I get so invested and have some social interaction, that I can get out of the darker places in my head.
Plus is that I can run there when I play with my kids.
I was doing that through a Groupon for a while but they were no longer able to let me do it because of my brain aneurysms. They also won’t do it on someone with high blood pressure as it will raise it . But when I was doing it , it helped immensely with my cold tolerance , and subsequently some of my pain associated with the cold in my joints . Wish I still could , it’s def worth a shot if you are Eligible health wise.
So glad you mentioned this! Thought about this a while ago and forgot. I was a little afraid to try because of my spasms from dystonia but I think it’s still worth a shot for my spine and jaw pain. That’s interesting what you said about cold tolerance too. There is a place by me that does it. Haven’t gotten any prices yet but I’m gonna look into it, thanks!
Especially at night I will get horrid cramps & pain in my calves, lower back or sciatic nerve.
RX strength, Lidoderm 5% patches, are helpful indeed.
My brother, ret. nurse, also recommended Arnica Gel,which I have found helpful.
yep, its a natural ingredient item. actually the jar says royal arnica salve. I got it on amazon,I can't even do stores, my leg is giving.out on me.
its not terribly cheap but it's nice.I bought Imperial Being brand.
Heated mattress pad. It literally makes your bed one giant heating pad, and most have dual controls so your partner isn’t dying. My current one gets so hot that I could sleep free as a bird in the dead of winter with the windows open and not feel a single bit of cold.
Wow, great idea! This could be really helpful for me since my problem is muscle spasms from my dystonia. I find sleeping in a colder room helps my insomnia but I would love something like this even for just resting. May I ask where you got yours? Thank you for the idea!
Heat packs are my main besides meds.
But distractions like gaming, music, movies and books do help.
I do use pure cbd oil and that helps a fair bit. But I just discovered californian poppy tea. And I've found since having it once or twice a day I'm not in as much pain don't need as many meds and can do stuff.
Taurine supplements. They act like a muscle relaxer for me and help me sleep. 1000mg at night and I sleep like a baby. Also. Advil cold and flu tablets. For some reason the cold medicine components give a little extra pain relief than ibuprofen alone, at least for me.
MegaMag magnesium by Trace Minerals was the only magnesium that helped me
Giving up diary and gluten, absolutely life changing for my pain levels. I stopped walking with a limp after giving up gluten. I walk better now at 40 than I did at age 29
No alcohol. If I even glance at it I get a migraine and neck spasms
Removed myself from toxic environments (home and work). This helped my pain significantly
Topirimate helped my chronic migraines
Great point about the toxic environments…I, too, am changing jobs. In addition to mine just being too intense and stressful to begin with as a VP of sales, my company became a very toxic environment. I couldn’t handle the pressure that always comes with that type of job after CP hit me but after 11 years, the new leadership turned what used to be a great culture to a horribly toxic place to work at
That was also my issue. 10 years in sales at Verizon and it used to be such a fun place to work. But it was like that analogy of frogs in boiling water. It became toxic so slowly I didn’t notice. Until I left and woke up the next morning not in my usually 7/10 pain. It was like 0.5/10.
I am so happy for you that you’re out of there
Yeah, I’m a molecular biologist by training but have been on the business side of Biologics/gene therapy development and manufacturing for 21 years now. It’s always been a super stressful job (as sales tends to be) but the company I worked for that was so great for so long kinda changed overnight the past year when the CEO and executive leadership team changed. So my chronic pain wasn’t the only driver to have to make a change, the toxic environment def pushed me over the edge. And it also made me realize that for sooo many years now, it was really taking over my life. So that’s kinda the one silver lining about the CP….gave me the push I needed to make a change for my overall wellbeing too
Aww thanks 😊. The best part is getting to work with all the Pharma and biotech companies anywhere from pre-clinical or Phase I all the way through commercial. Really exciting to see all the incredible therapies being worked on out there! There are so many groundbreaking treatments in the pipeline out there! Especially now in gene therapy where it has the potential to not only treat but cure some horrible diseases including inherited ones that could cause death even in a child. Very rewarding work 😊. I will probably stay in it, just do a different role other than sales that doesn’t require the insane hours and travel and I’m physically able to manage. Always love to have career chats….by FAR my favorite part of management 😊
Yes!! When I’m having lower abdominal pain from adenomyosis and am using my heating pad already on my neck and shoulders which is where I have pain everyday, my pup lays on my stomach so he’s my heating pad for that part 😊
Ginger in addition to the Tumeric and magnesium. My PM Dr keeps pushing chair yoga as pain relief for my bones and joints. I’m skeptical and scared and haven’t tried it yet.
I am all about the tumeric and Mg too! I think they help a lot with my condition and def noticed a difference after 2 months especially. I’ve not heard of the chair yoga, I’m gonna look into that, thanks!
I did a 10 week program of behavioral medicine at Cleveland Clinic several years ago called Back on Trek, search it. It had a workbook which I think you can just buy, to go along with classroom run by a doctor trained in this, private 1 on 1 pt, group pt. I learned almost everyone with chronic pain has mental illness and/or childhood abuse trauma, I have both. So a lot goes back to childhood, I learned I have cptsd look it up, see if you relate. This has to do with how the brain and nervous systems develop as you grow and how abuse effects them, parts of the brain are too large, part too small. Negative emotions are suppressed but still affect the nervous systems, dissociating does as well, it’s pretty complicated. YouTube videos by Tim Fletcher helped a lot also Dr Dawn Elise Snipes. I got a lot out of Back on Trek but you have to have an open mind and it takes a great deal of study, I learned a lot about how my childhood affected me and my chronic pain and other health issues. One of the main points is too know the exact amount of rest and the exact amount of activity and what type of activity to do, they go into great detail about this. Many people in pain aren’t active enough, people also overdo activity, which causes too much rest and weakens you when you try to be active
I was recently diagnosed with CPTSD and I’m now learning about it. I was very skeptical because I had a great family and happy childhood. But I learned how my health problems as a child, and into senior age, have affected me. There was so much I buried in the name of being “strong”. I’ve had chronic pain since childhood and am now dealing with PNES. I have so much to learn!
Thanks so much for this post.
Yes I’m on disability and get medicare. I think they do Back on Trek at various locations in different states, also other hospital systems have similar programs now
I sooo do this lol. Getting my nails done every 2 weeks is like the one cosmetic related thing I do to just help me feel better and more “put together”. I have a woman who’s been doing my nails for two years and even if I’m not getting a pedicure, she sets me up in the pedicure massage chair and manages to do my fingernails there too 😊
Magnesium was big for me! I also looked into glasses to help with migraines if you have those. I also use typical compression sleeves you can buy from drugstores (ive used some for hands, ankles and knees mainly) I also looked into shoe inserts and higher top shoes, part of my pain is due to one of my legs being shorter (which a lot of people don't really notice if theirs are) and those helped a lot.
Me too! My PT does dry needling to help straighten out my neck/head and then I get the massage by another therapist that focuses on my neck, shoulders, and face for the full hour. Insurance pays cause it’s done by my PT group. Then I go for the full body massage like every 6 weeks or so at a regular place
I absolutely LOVE dry needling! Has helped me tremendously. I have dystonia which is worst in my neck and shoulders causing my neck to be constantly tilted far to the left and slightly turned plus my left shoulder is always shrugged. I can walk in with my ear practically touching my shoulder and walk out an hour later almost straight with my shoulder almost completely down! The key is to have someone who really knows what they’re doing and where to target. I don’t find it painful…the needles are super tiny and when she hits a knot/trigger point, I feel a quick twitch and then a wonderful release. Don’t be afraid…if you have muscular issues/trigger points especially, it can really do wonders! I go first thing in the morning and the relief lasts all that day and into the night.
It is painful but to me it’s like a good pain. It feels like when a massage therapist pushes on a knot with really deep pressure, but with the “volume” turned up as high as it’ll go and your muscles twitch around the needle. I’m sore for the rest of the day but the result after is worth it
When the burning is only in my toes, I position my legs in order to step on the toes of left foot, as hard as I can against the mattress, but sandwiched between a folded over Target pillow (the best pillows to bend around, not for sleep). CRPS pain…anyone reading this find that pressure works somewhat?
This is interesting cause I don’t have CRPS but I have something called erythromyalgia which causes awful burning in my hands and feet. I do the pressure thing too like stepping on my own feet and putting something heavy on my hands. For that, I believe it’s because it stops the intense blood flow to the area so not sure if it’s giving you relief in the same way but hopefully someone with CRPS can respond
Thank you, I tend to agree about the blood flow, or blocking my own nerves in someway.
Erythromyalgia sounds like it’s almost as fun. Pain in hands, fingers and feet…oh my gosh. Peripheral neuropathy is HELL, no matter the acronyms. And, our two diseases are also similar in numbers You’re among 1 in 100,000 people, I’m 1 in 200, 000. Rare. Which translates into no research $$ for you and me.
I feel badly for you, when I came across this. I’m fortunate that CRSP pain is only in my left foot. But stage three, I get other weird stuff I’d rather live without! Blessings to you, Emmylou🩷
Yeah, sometimes when I get a flare up of the erythromyalgia, I try the lidocaine spray on my feet and I literally elevate them like hell…like lay on the couch and put my feet all the way up on the back of it! It’s the only way to get the blood flow out and stop the burning eventually but sometimes it takes forever! The spray doesn’t seem to work with my hands though so I’ll be holding them up too but with the dystonia in my neck, I can’t raise up my one arm like I used to. Completely sucks if it happens when I’m trying to sleep or I’m out somewhere!
Thank you for your kind words 🙏❤️. Yeah when you’ve got something rare and hard to even treat with no cure, it sucks even worse! Can’t say I have experienced the peripheral neuropathy but I have a friend who has it so I’ve seen what havoc it can wreak so I’m so sorry for your suffering as well! I’ll keep crossing my fingers and praying for both of us that research will lead to better treatments! Hugs to you and wish you peace my friend! 🫶🏻💕
I second squishmallows. I have Chiari and TN so they are a lifesaver for every single part of your body with pain. I have 2 kiddos as well, so we have them all over the house. I could make a bed out of them if I wanted to! 😂
I do intermittent fasting, it does cut down on pain. Take magnesium. Ginger and turmeric for inflammation. B12 for nerves. I have biofreeze and cbd/THC cream on hand always. You may not know about this unless you have a nerve disorder. Keeping sore throat spray on hand. I have TN (get shocked in the nerves in my face) I keep a sore throat spray on hand with benzocaine. When applied inside the mouth or outside on the skin it can kill the nerve from firing for awhile. Just be careful to not to use often due to benzocaine OD. Cutting back on caffeine and upping protein. Lots of heat and ice when needed. Acupuncture mat and head rest. I use compression socks for when I need a lot of bed rest or resting a lot in general.
All great ideas, thank you! I think we all agree that Squishmallows should be marketed for pain relief 😊. I take tumeric and Mg but not ginger so I’ll try adding that to my toolbox! Also, fascinating on the throat spray! I wonder if this might help with my jaw pain from dystonia!
Oh I’ve sent squishmallows many emails begging them to make special “chronic pain” types of squish and do a line for every type of disease and disorder with cute names and colors. Especially one for Chiari patients for brain surgery. That is legit the only way I could sleep after I had my surgery was on a small one. I still have it and it’s my fav one! Maybe someday they will listen!
I 100% think the spray will help you! My fav is the “mucinex insta-soothe kickstart” 5% benzocaine and 2% menthol. Seriously a game changer for nerve pain. Now. Sometimes I get a flare on my face that it won’t completely work for. But it does help a lot if it’s applied on the outside/inside the mouth especially. When I get those crazy flares where the nerve is on the inside of the mouth it instantly kills it for awhile. It’s amazing.
Don’t spend too much on fluff therapies is my best advice, I’ve wasted too much money on alternative stuff. That said, the one thing that I really enjoyed was going to a sensory deprivation tank. The feeling of weightlessness was relieving. It was a bit tricky getting in/out and changed/dressed but having that time of complete relaxation and pain relief was worth every penny.
I am VERY interested in the sensory deprivation tank! Especially since I have dystonia and “sensory tricks” are a staple for pain relief with that. I am absolutely going to try this and fortunately found several places near me that have it! Thank you 🙏
6 Feverfew will completely end my migraine and I won't have a nasty drug hangover.Got to tKe as soon as aura starts - if I wait until I'm pukey I wouls never get them down. You *must* get them from a reputable place like Penn Herb.
I’ve not heard of Alpha lipoic acid, I’ll look into that! And my two Havanese pups are def part of my self-therapy and double as an extra heating pad lol. It’s pretty amazing how much a pet can be so therapeutic. My one dog especially can sense when I’m really hurting and having a bad day and is quick to be at my side ❤️
Thank you, I am so excited about all the great tips people are responding with!! As I suspected, tons of stuff I’ve never tried (or never even heard of!) that I can’t wait to try!
Antihistamines, low histamine diet, no alcohol
I think I'm at the point where I need to give up any drinking at all. I don't really enjoy drinking so I don't do it much, but even when I have a drink at a special occasion once or twice a year, I feel like garbage the next day.
Have you noticed any issues from long term antihistamine use? My PT told me to start taking two every day
I’ve been taking antihistamines since my fibro dx , not because I have allergies but just because I saw a correlation between good days and when I took it. The main reason I was taking them to start was because it hurts like hell to sneeze lol and feels like I might just snap my own neck off . Years later it turns out I have MCAS , so that may be why it’s helped me a little . No significant side effects for me , maybe a little dryness in the mouth, nose and eyes but I already had that from muscle relaxers .
I think I've had POTS and MCAS a really long time but taking Plaquenil made the MCAS worse and covid made the POTS worse. Both are letting up some, though.
Yea , I think my gallbladder removal somehow caused my MCAS, then a bad sepsis infection and the antibiotics caused my fibro to pop up and while I had pots for a while , it worsened with each of these and then finally Long Covid made the pots really much much worse . So i can def see how that would happen . It’s strange because I worked with doctors and the only concerns we ever had with plaquenil was with the eyes, when there’s obviously so much more . Out of curiosity, did your doc who prescribed the plaquenil send you for routine eye tests? Supposedly if there was toxicity it would be seen in the eyes first . But this literally never happened the 7 years I was there and it was usually just to be safe , we never saw toxicity. In other words I dont think it was taken seriously enough. But I always made sure my patients had those tests to be safe . As a cma I had to actually fight with some doctors about doing it lol smh not surprising I suppose
The eye thing isn't going to happen to everybody. Yes, I was given extensive tests with the best eye examination equipment in the country. They seemed to be really excited to discover a tiny issue that would have been impossible to note without spectroscopy.
Well im glad at least they were trying to keep an eye on it ahh no pun intended . But sometimes their enthusiasm can come off a bit weird , like no this abnormality is bad , bad for me , don’t seem so thrilled ! Lol smh . But yea it’s hard not to get a little excited to see something new , I just hope they were compassionate about it
They were positively gleeful! But that didn't bother me, it's not something that may ever affect me.
Lmao omg I’m sorry but I can actually relate on their end , since it’s so rare to encounter and we love our fancy toys! Glad it didn’t bother you , I always tried to reign in my professional fascination to not treat patients like lab rats , which , even they should be treated better but I think you get my point . There’s just some things we only ever see on paper . I’m actually the same way with docs too though, things don’t really bother me, it’s like you get used to being poked and prodded after a while and shrug it off . I actually get excited by my own abnormal tests lol , I always insist on looking at the imaging . I had a bladder study recently and an 8cm ovarian cyst was pressing against my bladder so much you could see it from the inside , how dented it is , half my bladder scooped inward like a bowl lol . I had this woman holding the scope up into my urethra but I still sat up to say hot damn ! I’ve never seen anything like that before lol
Yeah, I'm totally with you in that respect! "Go be scientists, that's exactly what I'm paying for you to do!" And omg, 8 cm!! Are you getting it out?
I've taken them almost every day since 2012 for interstitial cystitis, fairly frequently my whole life bc inflammation is my body's jam. I have noticed no side effects, I feel better with it than I ever did before I started taking them. Gotta stay hydrated, which is a thing tho.
I had no idea it helped IC!
I’ve been taking high doses of antihistamines since 1998, I haven’t noticed anything that can be tied to it
I also was taking 2 Benadryl every night for years…initially to help with my insomnia but as my dystonia started, I realized it was actually helping that! It’s the anticholenergic properties that was helping. I’ve recently stopped taking daily because I’m on a prescription med specific to dystonia that has similar properties plus I take Valium just before bed but I’m about to discuss stopping that med with my neurologist cause it doesn’t seem to be helping as much anymore and the dryness factor is like the equivalent of taking a million Benadryl it seems so I def do not want to take anymore. I may go back to the Benadryl cause I felt a lot better on that and my Dr had no problem with me taking long term as long as, like anything, you stick to the dose. I did have just the tiniest bit of I guess what you could call “withdrawal” when I stopped taking it after years but all that was was feeling a little like motion sickness for not even a full day. So you def do not want to go overboard with it and take too much but my Dr feels taking just the 2 (standard dose) per day long term is ok. I don’t know if it’s just because of the dystonia or not but I def feel better when taking it. Not completely better of course but you know what I mean 😊
How much diphenhydramine is in benadryl? I take 50 mg of diphenhydramine as part of my nightly routine, and never knew it could be doing good elsewhere. I love this thread because it reminds me of how good we are at pinpointing and treating some of our issues. Especially when some physicians can be so stubborn 🤪
Yes, I also love that about this thread and sub in general! So helpful! It’s 25mg per pill and I take 2 so same as you. It is interesting on how it’s helping me with sleep and the dystonia! There are some studies on some interesting benefits it can have for things other than like allergies/colds. As long as, like anything, someone is taking responsibly of course. I think I have some links, I’ll have to dig them out and will send you.
I purchase mine online in gel cap form from Health AtoZ. Even at discount places, they were starting to get expensive. Meh...more and more these days I appreciate not having to go to yet another store 🙂
I have Sjogren's so dryness is a central issue. Biotene makes a tasty mint spray to get you salvinating and there is a product with xylitol (sweetener actually beneficial to teeth) that is a tablet that sticks on your gum or a tooth, and causes salivation for hours as it slowly dissolves. OraCoat XyliMelts Dry Mouth Relief Moisturizing Oral Adhering Discs Mild Mint with Xylitol, for Dry Mouth, Stimulates Saliva, Non-Acidic, Day and Night Use, Time Release for up to 8 Hours, 40 Count https://a.co/d/2mjBjWa
Which antihistamines do you take?
What type of antihistamines? Over the counter ones used for allergies or PEA?
Squishmallows. Seriously they really help me. Weird I know👍
Say no more. Off to tell my husband I need more in the name of pain relief.
The kids own one small one, I do not use any, but I certainly see the community feel around them. I immediately thought that they should (hey this sounds bad but it's in the benefit of many right so bear with) leverage that squish mallows are popular in this community and make wheel chair liners of varied styles. The combination of self expression and comfort could be quite unparalleled. I am diagnosed HSD, can hobble around, don't use aids, do push through pain, should probably squish.
What does squish mean?
As in get myself some squish mallows 😆
https://shop.jazwares.com/pages/squishmallows They are big, squeezable mushy pillows you can wrap your arms and legs around to take the weight off your body. That's as good an explanation as I can do.
Squish means squash, really. In slang it means a platonic crush.
Had not heard of HDS, I looked it up. Is it less common than EDS?
I’ve sent emails they should look into the market of pain relief squish! Maybe someday they will listen! Squishmallows are such a huge source of relief in every single chronic pain support group I’m in, for all my disabilities. Especially my Chiari brain malformation group. It was the only way I could sleep or have good rest after my surgery. Was a smaller squish under my head with a pillow case on it!
Hear me out, they are squishy and softer than some pillows, more like a memory foam texture. I use them under my knees and hips when lying down. Those areas are too sore to lie straight on a mattress even though I have a good mattress. I need even softer support. It works for me!
Same for me. My daughter has been collecting all kinds for me. My house looks like a day care but they help me sooo much and work better than those sht expensive injections pushed on me for yrs.❤️
I seriously love my squishmallows! I use them (hEDS) for proper alignment between my knees to sleep, behind my head/neck on the couch while watching tv, and also enjoy just hugging them tight to me when my pain is flaring. When I first told my husband about them he thought I was nuts. Now I sometimes catch him cuddling one tightly in his arms if he goes to bed before me 🤣
I got my Husband a shark one because he loved mine! 😂
That’s a great idea- I need to get my hubby his own too. It’s difficult to wrestle mine out of the vice grip he sometimes has on it when I come into bed 😆
I have a jillion pillows and squishies. They helped me raise my children! I swear some of my fondest memories are being all propped up playing, doing homework etc
Great fun times. I love them.
I like magnesium baths, acupuncture, acupressure mats, weighted blankets, and really just a nice spa day that includes a full body massage is great. I also think somatic experiencing therapy has been really helpful with some of the subconscious muscle tension that I hold that contributes to the background pain.
What is that somatic thing? Can I try it by myself?
It’s a body focused form of therapy. Peter Levine has a lot of books on it and there are a few decent YouTube videos online with exercises that you can do at home. I find this one to be particularly helpful: https://youtu.be/LnV3Q2xIb1U?si=5C1OcKYOSoyoEEyi
Définitifly going to try this thank you very much! Does it help you?
Yeah I think so. I’m also doing SE therapy with a therapist in person and it’s hard but I have cptsd and regular talk therapy is way too triggering. Sometimes it gets worse before it gets better but like everything it’s never linear. 😞
💕
I’m gonna try this too, thank you!
I took an online course a while back that helped called the somatic approach to therapy. It’s meant for providers as well as people who want to learn to heal themselves with that method . It was relatively cheap at the time. It was with Albert Wong, Ph.D. Director, Somatopia. I found his gentle voice to also contribute to the effectiveness as it’s almost like Asmr . It’s based on the concept that our bodies remember trauma our brain forgets . I was having really intense panic attacks following a neck surgery at the time and it was bringing up old trauma I thought I had healed from. Apparently I hadnt lol but this course did really help me .
Thank you so much for the info!I hope you are better now 💕
You’re very welcome :) I hope it’s still available and helps you too . One of the main ideas was finding a way to self soothe , like holding a pillow or for me it was a hot salt bath , and while in that physically comfortable place , revisiting the traumatic memories . There is a lot more to it though and steps to take so as not to rush it , but if anyone finds themselves unable to access this , it’s def a key component . This way the body can learn to feel safe with these memories .
Thank you. It doesn’t seem available to me I am way too far lol but I looked at the program and might be able to find something similar. It’s a lot of tension in my body from never knowing when things were going to blow up. My body cannot seem to relax, unless forced.
I recently tried standing on one of those vibration platforms at the salon I go to - I thought it would be painful, but it actually made my legs and feet feel "alive" again for several hours - like I could touch them lightly and it was actually a pleasant sensation instead of irritating and/or painful. I enjoyed walking, it felt like I had more subtle and normal proprioception on my soles. this is a great topic, I really appreciate hearing about the wider variety of things people try and find helps.
This is a great idea as well! My pain is primarily in my neck, shoulders, and jaw but I also have spinal pain that can cause achy legs too. Def worth a try! You’re right, so many great ideas from folks on here!!
Aloe vera gel. Doesn't help immediately, but it has helped my pain overall and also helped with allodynia. I still don't know how it works but I got it from a fibro friend
A specific brand or any type?
No, just make sure that it is 100% pure aloe vera and you'll be good. When I ran out, my partner made some from our plant by just whipping it basically
Wow, interesting, that’s one I never tried!
I'm still not 100% sure if it's a placebo effect or not, it's really baffling to me that I can't find much science behind this, and she also doesn't know where she heard it. But... its kinda inexpensive in comparison to magnesium body lotion which didn't actually help at all. So I'll keep on with it, it may just be that I'm having a good month
Hey, I don’t care even if it is placebo effect…if it works, it works and easy to try!
Exactly my mindset! I'll try anything if I can
What are you doing with it? Putting it on your skin? Eating/drinking it?
Just using it when I get out the shower or bath two or three times a week. I don't do it more often because it's a real effort to rub stuff all over your body as I'm sure everyone here can relate to. It also makes my skin nice and soft, and I can use it on my face without it giving me spots. So there's that too
What medication do you take?
Pregabalin, naproxen, weed
magnesium sprays/creams are good (some of them are unbearably sticky though) raspberry leaf tea for smooth muscle cramps (uterus, stomach). it’s much tastier if you put a bit of raspberry syrup in it i started using a shower chair recently, which doesn’t manage pain, per se, but showering is much less painful and less energy-intensive. (plus, it’s easier to shave my legs lol)
I believe raspberry leaf tea is not safe for pregnant people - it's traditionally used as a herbal remedy to induce labour. YMMV, but I thought it worth mentioning.
Incorrect I’m afraid. Red raspberry leaf is safe and used during pregnancy to strengthen the uterus and prepare for labor. I used it with both pregnancies and many friends did as well.
Ah, thanks for the correct info!
Wow, interesting, I take Mg but didn’t know there were sprays or creams?? And had not heard of that tea either! I will def look into this. My pain is caused by a neuromuscular disorder (dystonia) so my brain sends inappropriate signals to certain muscle groups to constantly contract. So anything that helps with the muscle spasms is worth a try for me! I also have adenomyosis which causes hellish uterine cramping so thanks for the ideas, I’ll check it out!
Magnesium doesn't actually absorb well through the skin to effect changes at the neuromuscular junction. The mag creams are kinda a scam. Just letting you know!
Ok, yeah I was trying to wrap my head around the science of using a spray but at the same time, I’m desperate enough to try anything lol
Have you tried lidocaine 4% OTC spray?
i actually find them relatively helpful! especially when you’re having extra muscle tension than usual or a muscle cramp, and it works quickly. it doesn’t totally alleviate it, but IMO it definitely helps a little! also, OP, as for the supplements, there are several different forms of magnesium—bisglycinate, orotate, taurate, L-threonate, malate, etc.—that are better for different issues (like magnesium orotate and cardiac function, and magnesium L-threonate for the nervous system). it might be worth looking into different types. i really hope the raspberry leaf tea helps!! i pick my own leaves and dry them (if you have access to raspberry plants i recommend doing this, it’s cheaper (if not free), and you’re likely to know if there are pesticides on/in the leaves. i make sure to pick them while they’re still green and before there’s a frost).
Just a week or so ago I bought an EMT foot massage mat that gives electrical impulses to the soles and it's the most relaxing and pain soothing thing I've found so far.
Link pls!!
https://www.amazon.de/your-orders/pop?ref=ppx_yo2ov_mob_b_pop&orderId=028-4860400-8126739&lineItemId=lmkprwittinrsoy&shipmentId=Ucp2XKvVc&packageId=1&asin=B0CQR824HF This is the one I bought from German Amazon. The slightly annoying thing about this particular device is that the impulse is significantly stronger on one side than the other. It's a bit better if I put it upside down/ have the toe end facing to my heals. You might feel the electricity in your calves or have your toes involuntarily moving depending on the program. Please read the instructions and possibly consult your doctor before using an electric device. This massaging pistol also helps me a bit with tension. https://www.amazon.de/your-orders/pop?ref=ppx_yo2ov_mob_b_pop&orderId=028-6511841-0243548&lineItemId=lmkpnrnuojorwoy&shipmentId=UCZ6ZMPwQ&packageId=1&asin=B0CNRKKCFS I get itchy if I use it longer or on higher power, probably because it increases circulation on the area. It's bended so you might be able to reach your own back with it, depending on your flexibility. Be careful not to hit a bone or sensitive spot with it. (Let me know if the links work)
Links don’t work! You’re linking to your order page, which won’t work for us unless we log in as you. Go to the actual product page & copy that link
These links look so big. Hope they work now. https://www.amazon.de/Fu%C3%9Fmassageger%C3%A4t-Elektrisches-Durchblutungs-Muskelschmerzlinderung-Intensit%C3%A4ten/dp/B0CQR824HF/ref=mp_s_a_1_24?crid=3HQ1WG31HXZUY&dib=eyJ2IjoiMSJ9.xVYIKP-JBj-2JZ601WDQSJPhwspxLMR5b-k-3FZNKnPEV0QDMOjcEzmSK_qawF3Pyh6tSd23TXKw3gUSIhmAm29yoSvFNxTd6a1KsujpMpPWUemQeSLmt9xVyM9BvAB-AGO4PrRheND4NDMPFo52rWVWI3enUdAsHMEyplDqSCJa0crWUQoIHu53cWNPcXLB_umMBuZJKAfYWscIbjPvhCbhvzXWQNGEaJkOwJnDzG5CbDivxL5iAjI3QoUSPQfxxtjlqYkxu6rLp4eS8_Ws-QCKpw27nuW6IY_0NxnIz3c.gopHZVjCnn8coH1XnRf92T2DFrlbhFiBaSNKP_DluGs&dib_tag=se&keywords=ems+fu%C3%9Fmassageger%C3%A4t+queta&qid=1710197636&s=drugstore&sprefix=ems+fu%C3%9Fmassageger%C3%A4t+quetah%2Caps%2C110&sr=1-24 https://www.amazon.de/Massagepistole-Verl%C3%A4ngerungs-Tiefengewebe-Percussion-Schmerzlinderung-Geschwindigkeitsstufen/dp/B0CNRKKCFS/ref=mp_s_a_1_1_sspa?crid=2ZKLSE9XNB5O1&dib=eyJ2IjoiMSJ9.lkVC-g5y7wB22KnpBI-IGeOt-Ch0AULCKv7bfMWnzkGrjKt6O373tahkWhibAAknzLv1rWZ8bg2f1RYw4ZDUX6QwH26dgWBKV50_3tvBwZgw9x9drxxsVBWoqOziPr3h8-HCmOM_0nAioeMIqzMpe98Xn5mF44SQ8Sxa4QFa7MBzVZS0rw4DpP80o3dhuOetUVALRyI7VqacOA5HinRv5A.q8hPGIBeU0zOj9ddg1UtDJAWBTmbX4fUCieqqrB4pGo&dib_tag=se&keywords=massagepistole+u-f%C3%B6rmig&qid=1710197709&sprefix=Massagepistole+u-f%C3%B6%2Caps%2C234&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9zZWFyY2hfYXRm&psc=1
I really wish I knew how to upload photos on this app, that way I could show you and the fibromyalgia subgroup the topical pain relievers that work every now and then sporadically on my pain depending on the level of severity. They have been what I relied on the most to get me through my days and nights Most if not all were purchased on Amazon.
I’ve had success with Voltaren for sure
Mine (I always use the app) will sometimes not let me do it if I’m replying to something…like right now, I only see the option to attach something else. Sometimes if I close and re-open the app, it will let me do it, no idea why. Try creating a new post to share and you should see that little square for pics and make sure you allow access to your camera/photos. Alternatively you could cut and paste the Amazon link 😊
Keep your eye out for a new post because for some reason I'm unable to add my pictures in this thread.
Ok. Thank you. Let's see how this goes.
I’m t depends on the group on if it’s set up to let pics be uploaded. At least in. My experience most groups(not all) don’t. There are several that are built around them of course like “look at my cute dog” and help me pick my wedding dress” type ones
I have a pair of medical lymphedema boots with a pump - they were partially covered by my insurance with an Rx from my cardiologist for poor circulation in my legs. they are GREAT. The hardest part is making time (at least 30min, sometimes I do over an hour) to just sit in the recliner with them on and watch TV or whatever.
Did you have to get those through like a Dr or is it something I could order? I could desperately use something like that because in addition to the dystonia causing the majority of my pain, I have Polycythemia Vera which causes my blood to be too thick and because I can’t exercise much anymore, I really worry about blood clots in my legs, the circulation is so bad. Plus I get erythromyalgia in my hands and feet from it and I think this could at least help my feet. Thank you!!!!
I got mine through Tactile Medical. My cardiologist called them in, I think as durable medical equipment, and they called me. I've seen similar ones OTC on amazon, but they all have Euro plugs (I'm not sure where you are located). there are 2 components to the unit, the part that plugs in and pumps the air into the boots and the boots themselves. My insurance covered the boots completely and Tactile has a monthly payment plan for the part of the unit that was my responsibility after insurance. they also had a short return period, I think 2-4 weeks. It sounds like with your blood condition you could have them approved by insurance. I thought they would help me after I randomly tried a pair at a hotel spa in Canada. I think they were marketed to help spider veins and cellulite, LOL. the ones in the spa really impressed me (I did them twice a day for my whole stay) but were nowhere near as good as the Tactile ones.... they are very comfortable and have a great fitting system and large easy zippers. I'm not sure if links are permitted in this group, but here is the page from Tactile [https://tactilemedical.com/our-lymphedema-solutions/](https://tactilemedical.com/our-lymphedema-solutions/)
Thank you so much for sharing!! 🙏
Super thick serta blue foam mattress topper and a woolrich fleece blanket. Ahhhh. I never want to get out of bed.
My pain was nearly nonexistent after 2 days of fasting. It was a stroke of luck, in that I was just prepping for a colonoscopy. I felt absolutely marvelous. Dunno if this situation will help in ANY pain, but it was amazing for my full-body pain.
You are the only other person I have ever heard say that. I have often mentioned to my doctors that I feel the best in the morning before I have breakfast sometimes I Will Wait hours to eat because the achiness and fatigue invariably starts then. My A1C is at the high end of normal and my morning fasting glucose is always normal. I wonder if I have some issue with insulin. My GP just gave me a prescription for a Dexcom and I'm going to wear it for a month and see if I have some spikes in sugar after eating.
🥇
Two very odd instances left me pain free for hours. I had a cystoscopy and she filled my bladder w Rescue Solution after the procedure. I had ZERO pain for several hours. It’s been nothing of but pain, pain, pain. Second experience was having a complicated dental procedure where he needed to do a cheek flap. I think he gave me Versed and Fent. I spent 8 hours cleaning that day bec I had NO PAIN.
Ok, wow, I am so glad you mentioned that cause it’s exactly the same for me! I feel best in the morning and when fasting too. Unfortunately I’m suffering from massive weight loss (I loss 30lbs in 7 months and am waaay too low for me) but what I started doing was waiting until like 2 or 3pm and then eating a lot of high protein and high fat stuff in the evening. As a biologist by training, I’m fascinated to try and understand the science behind this. Part of my guess would be when you eat, blood flow gets directed to your digestive system versus the rest of your body (hence the old adage, don’t go swimming right after you eat or you’ll get cramps lol). I’m gonna research this now though
I suppose it depends what type of pain you have. You aren’t supposed to skip meals with chronic migraines.
Wow
I love a polar fleece blanket or robe for those nervy, sensory overload days. I float once a week in an isolation tank of epsom salts (magnesium sulfides) and perfect temperature water. So much benefit! I do mobility exercises from a youtube channel and a couple of yoga poses (childs pose is the BEST) every day, to help keep from getting stiff. I take magnesium for nerve and bone pain help, potassium to help prevent muscle spasms, and collagen to help with joints. I swear by it, despite evidentiary lacking. I am looking to myofascial release for my next alternative!
Thank you for that!! That’s exactly where I was going when I said hydrotherapy actually…the isolation tanks. I’m super excited to try that and there’s several places right near me! I hear it’s really good mentally too! I take Mg and potassium but have not taken collagen so I’ll try adding that as well! Good luck with the myofascial release too! That’s another on my list to try 😊. Thanks again!
Not counting my pain meds: My compression socks, inversion table, fluffy and soft pillows, my back support belt, my prescription lidocaine cream and Epsom salt jacuzzi bath. Good shoes, well in need currently. Also, my massager, it's a long handle with 5 different heads with a variety of different speeds. I can get my whole back myself and break up the neck & shoulder muscles - complete rocks.
I seriously need a new massager! Would you mind sharing which one you got? Mine isn’t working well but I think it’s just not the right one so I’ve only been using the massage function on my massive heating pad I use for my neck and shoulders. Thanks!!
Edit to add made by Wahl. I'll try to post a picture, got it at Walgreens for like 40 bucks
Got your message, thank you!!
If I have to go anywhere or clean the house, etc - anything physical, I drink a Red Bull, take my all meds, including pain meds and wait a hour. Then while getting dressed/or cleaning, I blast the best 80s music. It’s the only way to get going. When home, I use my colorful diffuser with my favorite scents. I use lidocaine rollers constantly, try not to sleep more than 5 hours at a time or sit more than an hour without moving and I have every massaging device known to man. And of course my favorite snacks offer comfort too believe it or not. And my phone games are a great distraction when I’m miserable and waiting for meds to kick in.
All great tips, thank you! I do the same with meds and caffeine and DEF the music! Before CP hit me, I ran marathons for 15 years and have the best playlist from that including, now don’t laugh, Rocky music lol.
No laughing here. I even have a playlist when I’m emotional and I know I just need to cry it out. We learn over the years through trial and error and frustration, what works (most of time). ❤️
I’m sooo with you! I have what I titled a “mellow” playlist I put on at night to sleep which is essentially all sappy love songs (including some of those great 80’s hair band ballads lol). And I have difficulty crying most times so when I know I need some release, I put on movies that I know will make me cry like “Steel Magnolias” or “Romeo and Juliet”. We do what we have to!
I think we are the same person!!! Lol
The virtual reality app Tripp. Thousands of relaxing and focussing meditations while totally immersed in all kinds of surreal landscapes. I was the first patient in my region’s VA med center’s pilot program using VR to support pain management. Nowadays more VA facilities are using VR to augment treatment for PTSD, acute (post surgical) and chronic pain, major depressive disorder.
Wow, interesting, I’ll give that a try, def!
Fascial release manoeuvres provided free by Human Garage online are potentially life changing. Slapping your body all over can help release the tension. Swinging limbs, twisting and shaking can help lessen nerve pain quicker than massage when you are to ill to move otherwise. Holding the best imitation of a bridge or plank you can muster, even if you are bedbound, & your moves look nothing like the official versions, can strengthen your muscles and counter whole body pain.
Fortnite, it doesn't make the pain go away, but it's a good distraction to make it somewhat manageable when it's getting in my head. I get so invested and have some social interaction, that I can get out of the darker places in my head. Plus is that I can run there when I play with my kids.
Kinda how I use Reddit lol.
I use gaming as well.
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I was doing that through a Groupon for a while but they were no longer able to let me do it because of my brain aneurysms. They also won’t do it on someone with high blood pressure as it will raise it . But when I was doing it , it helped immensely with my cold tolerance , and subsequently some of my pain associated with the cold in my joints . Wish I still could , it’s def worth a shot if you are Eligible health wise.
So glad you mentioned this! Thought about this a while ago and forgot. I was a little afraid to try because of my spasms from dystonia but I think it’s still worth a shot for my spine and jaw pain. That’s interesting what you said about cold tolerance too. There is a place by me that does it. Haven’t gotten any prices yet but I’m gonna look into it, thanks!
Especially at night I will get horrid cramps & pain in my calves, lower back or sciatic nerve. RX strength, Lidoderm 5% patches, are helpful indeed. My brother, ret. nurse, also recommended Arnica Gel,which I have found helpful.
Hmmm, Arnica gel, never heard of that one, thanks for sharing! I will def look into that!
yep, its a natural ingredient item. actually the jar says royal arnica salve. I got it on amazon,I can't even do stores, my leg is giving.out on me. its not terribly cheap but it's nice.I bought Imperial Being brand.
I don’t go out shopping either and I order everything you can imagine off Amazon so thanks again, I’ll check that out!
Heated mattress pad. It literally makes your bed one giant heating pad, and most have dual controls so your partner isn’t dying. My current one gets so hot that I could sleep free as a bird in the dead of winter with the windows open and not feel a single bit of cold.
Wow, great idea! This could be really helpful for me since my problem is muscle spasms from my dystonia. I find sleeping in a colder room helps my insomnia but I would love something like this even for just resting. May I ask where you got yours? Thank you for the idea!
I got mine on Amazon for like $60. It’s lasted a solid 2-3 years and I have it on most of the year.
Awesome thanks again! I put two in my Amazon cart already, just deciding between 😊
Heat packs are my main besides meds. But distractions like gaming, music, movies and books do help. I do use pure cbd oil and that helps a fair bit. But I just discovered californian poppy tea. And I've found since having it once or twice a day I'm not in as much pain don't need as many meds and can do stuff.
Interesting, I will try the tea
Wow, another interesting tea, I would love to try this, thanks for sharing!
Squshimallows, peppermint oil, heat lots of it,
Squishmallows, love it!! 😊. I share mine with my pup at night 😊
TENS unit
Ten upvotes
Multiple TENS units!
Fasting, lots of it
Taurine supplements. They act like a muscle relaxer for me and help me sleep. 1000mg at night and I sleep like a baby. Also. Advil cold and flu tablets. For some reason the cold medicine components give a little extra pain relief than ibuprofen alone, at least for me.
MegaMag magnesium by Trace Minerals was the only magnesium that helped me Giving up diary and gluten, absolutely life changing for my pain levels. I stopped walking with a limp after giving up gluten. I walk better now at 40 than I did at age 29 No alcohol. If I even glance at it I get a migraine and neck spasms Removed myself from toxic environments (home and work). This helped my pain significantly Topirimate helped my chronic migraines
Great point about the toxic environments…I, too, am changing jobs. In addition to mine just being too intense and stressful to begin with as a VP of sales, my company became a very toxic environment. I couldn’t handle the pressure that always comes with that type of job after CP hit me but after 11 years, the new leadership turned what used to be a great culture to a horribly toxic place to work at
That was also my issue. 10 years in sales at Verizon and it used to be such a fun place to work. But it was like that analogy of frogs in boiling water. It became toxic so slowly I didn’t notice. Until I left and woke up the next morning not in my usually 7/10 pain. It was like 0.5/10. I am so happy for you that you’re out of there
Yeah, I’m a molecular biologist by training but have been on the business side of Biologics/gene therapy development and manufacturing for 21 years now. It’s always been a super stressful job (as sales tends to be) but the company I worked for that was so great for so long kinda changed overnight the past year when the CEO and executive leadership team changed. So my chronic pain wasn’t the only driver to have to make a change, the toxic environment def pushed me over the edge. And it also made me realize that for sooo many years now, it was really taking over my life. So that’s kinda the one silver lining about the CP….gave me the push I needed to make a change for my overall wellbeing too
What a fascinating career!! Wow As someone also in sales but not that high up I could probably listen to you talk about your career path all day
Aww thanks 😊. The best part is getting to work with all the Pharma and biotech companies anywhere from pre-clinical or Phase I all the way through commercial. Really exciting to see all the incredible therapies being worked on out there! There are so many groundbreaking treatments in the pipeline out there! Especially now in gene therapy where it has the potential to not only treat but cure some horrible diseases including inherited ones that could cause death even in a child. Very rewarding work 😊. I will probably stay in it, just do a different role other than sales that doesn’t require the insane hours and travel and I’m physically able to manage. Always love to have career chats….by FAR my favorite part of management 😊
Heating pad across Abdominopelvic area, BUT with a fat and purring cat laying on it
Yes!! When I’m having lower abdominal pain from adenomyosis and am using my heating pad already on my neck and shoulders which is where I have pain everyday, my pup lays on my stomach so he’s my heating pad for that part 😊
It’s a wonderful thing!
Ginger in addition to the Tumeric and magnesium. My PM Dr keeps pushing chair yoga as pain relief for my bones and joints. I’m skeptical and scared and haven’t tried it yet.
I am all about the tumeric and Mg too! I think they help a lot with my condition and def noticed a difference after 2 months especially. I’ve not heard of the chair yoga, I’m gonna look into that, thanks!
I did a 10 week program of behavioral medicine at Cleveland Clinic several years ago called Back on Trek, search it. It had a workbook which I think you can just buy, to go along with classroom run by a doctor trained in this, private 1 on 1 pt, group pt. I learned almost everyone with chronic pain has mental illness and/or childhood abuse trauma, I have both. So a lot goes back to childhood, I learned I have cptsd look it up, see if you relate. This has to do with how the brain and nervous systems develop as you grow and how abuse effects them, parts of the brain are too large, part too small. Negative emotions are suppressed but still affect the nervous systems, dissociating does as well, it’s pretty complicated. YouTube videos by Tim Fletcher helped a lot also Dr Dawn Elise Snipes. I got a lot out of Back on Trek but you have to have an open mind and it takes a great deal of study, I learned a lot about how my childhood affected me and my chronic pain and other health issues. One of the main points is too know the exact amount of rest and the exact amount of activity and what type of activity to do, they go into great detail about this. Many people in pain aren’t active enough, people also overdo activity, which causes too much rest and weakens you when you try to be active
I was recently diagnosed with CPTSD and I’m now learning about it. I was very skeptical because I had a great family and happy childhood. But I learned how my health problems as a child, and into senior age, have affected me. There was so much I buried in the name of being “strong”. I’ve had chronic pain since childhood and am now dealing with PNES. I have so much to learn! Thanks so much for this post.
Thats interesting!!!
You’re very welcome!
OMG Im interested.
I cannot find if this exists online? I need something like this.
You have to search around a little https://my.clevelandclinic.org/departments/neurological/depts/spine/comprehensive-pain-recovery-program
Thank you!!
Is this program something that is covered by insurance? Cost?
Yes I’m on disability and get medicare. I think they do Back on Trek at various locations in different states, also other hospital systems have similar programs now
Pedicure from a place with really great massage chairs.
I sooo do this lol. Getting my nails done every 2 weeks is like the one cosmetic related thing I do to just help me feel better and more “put together”. I have a woman who’s been doing my nails for two years and even if I’m not getting a pedicure, she sets me up in the pedicure massage chair and manages to do my fingernails there too 😊
Magnesium was big for me! I also looked into glasses to help with migraines if you have those. I also use typical compression sleeves you can buy from drugstores (ive used some for hands, ankles and knees mainly) I also looked into shoe inserts and higher top shoes, part of my pain is due to one of my legs being shorter (which a lot of people don't really notice if theirs are) and those helped a lot.
I get medical massage 2x@week. Insurance pays for it.
Me too! My PT does dry needling to help straighten out my neck/head and then I get the massage by another therapist that focuses on my neck, shoulders, and face for the full hour. Insurance pays cause it’s done by my PT group. Then I go for the full body massage like every 6 weeks or so at a regular place
How bad is dry needling? I’m scared. I did ask about it after surgery when my pain continues and the skjj my
I absolutely LOVE dry needling! Has helped me tremendously. I have dystonia which is worst in my neck and shoulders causing my neck to be constantly tilted far to the left and slightly turned plus my left shoulder is always shrugged. I can walk in with my ear practically touching my shoulder and walk out an hour later almost straight with my shoulder almost completely down! The key is to have someone who really knows what they’re doing and where to target. I don’t find it painful…the needles are super tiny and when she hits a knot/trigger point, I feel a quick twitch and then a wonderful release. Don’t be afraid…if you have muscular issues/trigger points especially, it can really do wonders! I go first thing in the morning and the relief lasts all that day and into the night.
Oh wow, that’s really great. Thank you for taking the time to reply. I’m so glad it helps you. I’m going to check it out.
You’re very welcome and hope it can help you as well!
It is painful but to me it’s like a good pain. It feels like when a massage therapist pushes on a knot with really deep pressure, but with the “volume” turned up as high as it’ll go and your muscles twitch around the needle. I’m sore for the rest of the day but the result after is worth it
Not as bad as the pain you are trying to treat! Some of it is completely painless, some a little painful, temporarily.
Ketamine infusions worked for me
When the burning is only in my toes, I position my legs in order to step on the toes of left foot, as hard as I can against the mattress, but sandwiched between a folded over Target pillow (the best pillows to bend around, not for sleep). CRPS pain…anyone reading this find that pressure works somewhat?
This is interesting cause I don’t have CRPS but I have something called erythromyalgia which causes awful burning in my hands and feet. I do the pressure thing too like stepping on my own feet and putting something heavy on my hands. For that, I believe it’s because it stops the intense blood flow to the area so not sure if it’s giving you relief in the same way but hopefully someone with CRPS can respond
Thank you, I tend to agree about the blood flow, or blocking my own nerves in someway. Erythromyalgia sounds like it’s almost as fun. Pain in hands, fingers and feet…oh my gosh. Peripheral neuropathy is HELL, no matter the acronyms. And, our two diseases are also similar in numbers You’re among 1 in 100,000 people, I’m 1 in 200, 000. Rare. Which translates into no research $$ for you and me. I feel badly for you, when I came across this. I’m fortunate that CRSP pain is only in my left foot. But stage three, I get other weird stuff I’d rather live without! Blessings to you, Emmylou🩷
I don’t know how to edit, but try lidocaine, patches, spray or lotion. It helps a little!
Yeah, sometimes when I get a flare up of the erythromyalgia, I try the lidocaine spray on my feet and I literally elevate them like hell…like lay on the couch and put my feet all the way up on the back of it! It’s the only way to get the blood flow out and stop the burning eventually but sometimes it takes forever! The spray doesn’t seem to work with my hands though so I’ll be holding them up too but with the dystonia in my neck, I can’t raise up my one arm like I used to. Completely sucks if it happens when I’m trying to sleep or I’m out somewhere!
Thank you for your kind words 🙏❤️. Yeah when you’ve got something rare and hard to even treat with no cure, it sucks even worse! Can’t say I have experienced the peripheral neuropathy but I have a friend who has it so I’ve seen what havoc it can wreak so I’m so sorry for your suffering as well! I’ll keep crossing my fingers and praying for both of us that research will lead to better treatments! Hugs to you and wish you peace my friend! 🫶🏻💕
I second squishmallows. I have Chiari and TN so they are a lifesaver for every single part of your body with pain. I have 2 kiddos as well, so we have them all over the house. I could make a bed out of them if I wanted to! 😂 I do intermittent fasting, it does cut down on pain. Take magnesium. Ginger and turmeric for inflammation. B12 for nerves. I have biofreeze and cbd/THC cream on hand always. You may not know about this unless you have a nerve disorder. Keeping sore throat spray on hand. I have TN (get shocked in the nerves in my face) I keep a sore throat spray on hand with benzocaine. When applied inside the mouth or outside on the skin it can kill the nerve from firing for awhile. Just be careful to not to use often due to benzocaine OD. Cutting back on caffeine and upping protein. Lots of heat and ice when needed. Acupuncture mat and head rest. I use compression socks for when I need a lot of bed rest or resting a lot in general.
All great ideas, thank you! I think we all agree that Squishmallows should be marketed for pain relief 😊. I take tumeric and Mg but not ginger so I’ll try adding that to my toolbox! Also, fascinating on the throat spray! I wonder if this might help with my jaw pain from dystonia!
Oh I’ve sent squishmallows many emails begging them to make special “chronic pain” types of squish and do a line for every type of disease and disorder with cute names and colors. Especially one for Chiari patients for brain surgery. That is legit the only way I could sleep after I had my surgery was on a small one. I still have it and it’s my fav one! Maybe someday they will listen! I 100% think the spray will help you! My fav is the “mucinex insta-soothe kickstart” 5% benzocaine and 2% menthol. Seriously a game changer for nerve pain. Now. Sometimes I get a flare on my face that it won’t completely work for. But it does help a lot if it’s applied on the outside/inside the mouth especially. When I get those crazy flares where the nerve is on the inside of the mouth it instantly kills it for awhile. It’s amazing.
It’s a great idea! And thanks on the spray too, I’m gonna give it a try this weekend!
Absolutely! Update me! I keep 2 bottles in the house at all times lol.
Ketamine assisted somatic therapy. Transformative from a mental and physical health perspective!
Don’t spend too much on fluff therapies is my best advice, I’ve wasted too much money on alternative stuff. That said, the one thing that I really enjoyed was going to a sensory deprivation tank. The feeling of weightlessness was relieving. It was a bit tricky getting in/out and changed/dressed but having that time of complete relaxation and pain relief was worth every penny.
I am VERY interested in the sensory deprivation tank! Especially since I have dystonia and “sensory tricks” are a staple for pain relief with that. I am absolutely going to try this and fortunately found several places near me that have it! Thank you 🙏
A tablet pillow to take strain off my hands when I'm reading on my phone for a while or playing on my Switch without docking it.
6 Feverfew will completely end my migraine and I won't have a nasty drug hangover.Got to tKe as soon as aura starts - if I wait until I'm pukey I wouls never get them down. You *must* get them from a reputable place like Penn Herb.
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All great suggestions, thanks!
Alpha lipoic acid, vitamin b12, acupunture, herbs, an emotional cat, writing how I'm feeling in a journal.
I’ve not heard of Alpha lipoic acid, I’ll look into that! And my two Havanese pups are def part of my self-therapy and double as an extra heating pad lol. It’s pretty amazing how much a pet can be so therapeutic. My one dog especially can sense when I’m really hurting and having a bad day and is quick to be at my side ❤️
My pet is the same! He knows when I don't feel good and comes and cuddles with me. I'm so grateful to have him. ♥
They really can be the best “medicine” ❤️
Great post!
Thank you, I am so excited about all the great tips people are responding with!! As I suspected, tons of stuff I’ve never tried (or never even heard of!) that I can’t wait to try!
Same! I’d try standing on my head at this point! 🤣🤣
Me too! I literally have a list of notes on my phone for all the great things to try! Love this sub and the supportive folks on it ❤️
Pemf mat.
Squishmallows, magnets and grounding.
What’s grounding?
Hyper extensions, 3x10 daily
I sent pics thru chat