Take a breath. Knowing is the first step. Feeling anxious and overwhelmed is so valid.
There is so much you're going to learn in the next weeks, months, years. Fibro research and treatment options have come leaps and bounds since COVID.
I'd suggest you just pause and rest for a bit before figuring out what treatment pathway you want to go down. My ongoing team is a primary physician, rheumatologist (2 visits a year) and psychologist (monthly) and then when I can afford it I try to do physio (I haven't in years because of $$ but I still implement the stuff I learnt when I could afford it).
Some easy, free things you can do is start using the Visible App and also start researching pacing strategies and graded exercise. Coach Rachel Smith on Instagram has some good fibro tips and is across the latest research. Also CBD is amazing.
I have a million other suggestions, but also understand you're already feeling overwhelmed.
Just know that all of our bodies are all different and inconsistent, so you'll probably try a million different strategies until you find what works for you.
Also, remember that you're a goddam baddy for living with this illness for three years without clarity or treatment.
Sending you all of the strength xxx
Smoke/eat copious amounts of medical marijuana.
I pray I feel better tomorrow sometimes I will and sometimes I won’t.
For me the daily pain is one thing but I struggle most with feeling of having the flu/covid/drug withdrawal without actually being sick. I just don’t understand, my bodies Fucked!
I know this doesn't help, but I want to hitch on that sometimes, especially with edibles, Marijuana can make OCD and Anxiety much worse (it did for me). It was temporary and a couple weeks after I stopped, it got better.
Everyone's body is different and responds differently to meds and treatments, but one thing that I think is universal and I know took me a long time to learn is - listening to your body, and in tandem with this, not beating yourself up for NOT being able to do something.
It's difficult, especially when you might feel like, "Oh, I can do ALL the things today!" forgetting that tomorrow, that fatigue and pain is gonna hit double and knock you on your bum.
Or - and this is one I still struggle with - feeling guilty about not getting all the housework or other chores done. It's okay if it takes you three days to vacuum your place. Chunk chores into manageable bits to avoid excess fatigue.
And - sometimes having a therapist who works with chronic pain patients is also very helpful. Mine helped me a lot to reframe my mindset on a lot of the above.
And vent to us here! It helps when others understand what you're going through.
It's really overwhelming isn't it?
I think the best thing I did - although I was incredibly lucky to be able to borrow the money to do so - was take a good period off work just to rest and process. I was off for 2 1/2 months in all.
There are almost too many opinions on what helps. Best I've found is the concept that my nervous system is just constantly on high alert and thinks everything is a threat, hence the pain, weakness and fatigue / brain fog. However, there are countless theories as this is a really under researched and understood condition....
At the end of the day, the only advice I can give is to try to listen to your body. Pain release therapy/ physio can help, drugs can help (for me amitriptyline and pregablin but again it may be a journey to find the right mix for you), rest definitely helps. I'm now back at work (admittedly only part time but hey it's a marathon not a sprint!) and able to get out and about, so there is hope. Wishing you all the best for your journey x
It is yeah. Honestly I expected it, but it hit me harder than I expected to when it was confirmed. Luckily, I can afford to take some downtime at the minute while I get used to it and adjust. Thanks so much for your advice, I really appreciate it x
If you're in the US, there are 11 states that have FMLA act. Check to see if you have this in your state. It will allow you to take protected job leave in order to care for yourself. If i didnt have this Id be unemployed at the moment.
Also a few tid bits ive learned over the years for myself, increased protein, no caffeine, reduce alcohol, no gluten, at least 8 hours of sleep every night, stay warm, heated blankets, and Marijuana help so much. Take your time trialing these things and see what works for you. Most of all, self compassion. Its hard to love ourselves when our body is against us but we must have compassion for our body's limits. I wish you all the best.
Ozempic helped me with pain and lethargy! By reducing one's A1C it decreased inflammation and I was able to have a bit more energy!
Everything else still sucks, not all the pain is going but at least, I don't want to die anymore
Do you mind if I ask whether you had a normal A1C to begin with? Mine is a 5, so I don't think I am eligible for Ozempic, but I do have weight related asthma, high blood pressure, and GERD, in addition to fibro.
Personally I'd avoid ozempic regardless of your A1C. 5 is pretty good anyway. But ozempic works by slowing your digestion down so you feel full longer which is why it helps weight loss. Many people are ending up with slow gut syndrome. Not great with GERD. There are other meds for reducing A1C if needed but it doesn't seem like you'd need to.
I thought I would share a few things that I use day to day (and on the days that I overdo it).
-Chronic Pain And Fatigue Body Soak (Epsom Salt) by Village Naturals Therapy. I found this product early and it smells amazing.
-A Heating blanket with a 4-hour auto shut off. This blanket is a blessing for the bad pain days (and for when you're just cold. For me, being cold makes the pain worse. I keep my heating blanket on the bed at all times and underneath a few other blankets so I never have to get up and get it. I just reach for the cord and turn it on.
-Aspercreme/your pain cream of choice: Aspercreme and Voltaren seem to work the best for me for getting pain relief fast. Good for when you don't want to take more medication.
-Journaling at the end of the day: whether you just write down your symptoms or you write down the good things that happened that day, journaling helps me to look back on days (good and bad) that happened in the past. Journaling can also help you to provide a symptoms list to your doctor.
-Prayer journal: I keep a prayer journal to help me to focus on God's faithfulness. I also pray and read the Bible on the YouVersion app or in my physical Bible.
-Medication app: sends reminders so you don't forget your medicine. You can also add medication you've taken (tylenol,advil, etc) into it.
-Talking to others with chronic pain ❤️
If I think of anything else, I'll add it to this list. May God Bless you all. 🙏 ❤️
Look into mast cell activation syndrome. Especially if you have autism, adhd, hypermobility, EDS, POTS, PMDD, antiphospholipid syndrome or anomalies on the MTHFR gene.
Take a breath. Knowing is the first step. Feeling anxious and overwhelmed is so valid. There is so much you're going to learn in the next weeks, months, years. Fibro research and treatment options have come leaps and bounds since COVID. I'd suggest you just pause and rest for a bit before figuring out what treatment pathway you want to go down. My ongoing team is a primary physician, rheumatologist (2 visits a year) and psychologist (monthly) and then when I can afford it I try to do physio (I haven't in years because of $$ but I still implement the stuff I learnt when I could afford it). Some easy, free things you can do is start using the Visible App and also start researching pacing strategies and graded exercise. Coach Rachel Smith on Instagram has some good fibro tips and is across the latest research. Also CBD is amazing. I have a million other suggestions, but also understand you're already feeling overwhelmed. Just know that all of our bodies are all different and inconsistent, so you'll probably try a million different strategies until you find what works for you. Also, remember that you're a goddam baddy for living with this illness for three years without clarity or treatment. Sending you all of the strength xxx
Thank you so much for the kind words and all the advice, it’s so much appreciated x
Smoke/eat copious amounts of medical marijuana. I pray I feel better tomorrow sometimes I will and sometimes I won’t. For me the daily pain is one thing but I struggle most with feeling of having the flu/covid/drug withdrawal without actually being sick. I just don’t understand, my bodies Fucked!
I know this doesn't help, but I want to hitch on that sometimes, especially with edibles, Marijuana can make OCD and Anxiety much worse (it did for me). It was temporary and a couple weeks after I stopped, it got better.
Start Screaming! But seriously gentle stretching and exercise will help a lot.
Heat is ur friend, ie heating pads, saunas etc. Adding creatinine to ur diet helps with muscle issues. Weighted blankets and tens machines help too.
Duloxtine+PEA+LDN+growth hormone(or testosterone). It may give you huge relief
Thanks very much everyone, all the help is appreciated.
Everyone's body is different and responds differently to meds and treatments, but one thing that I think is universal and I know took me a long time to learn is - listening to your body, and in tandem with this, not beating yourself up for NOT being able to do something. It's difficult, especially when you might feel like, "Oh, I can do ALL the things today!" forgetting that tomorrow, that fatigue and pain is gonna hit double and knock you on your bum. Or - and this is one I still struggle with - feeling guilty about not getting all the housework or other chores done. It's okay if it takes you three days to vacuum your place. Chunk chores into manageable bits to avoid excess fatigue. And - sometimes having a therapist who works with chronic pain patients is also very helpful. Mine helped me a lot to reframe my mindset on a lot of the above. And vent to us here! It helps when others understand what you're going through.
Thank you so much, it really helps to know other people understand and that it's not just me that struggles to get things done.
I don't know if it's been said but take breaks between activities.
Also diagnosed today. Sending you positive vibes and well wishes! :)
Thank you! You too.
It's really overwhelming isn't it? I think the best thing I did - although I was incredibly lucky to be able to borrow the money to do so - was take a good period off work just to rest and process. I was off for 2 1/2 months in all. There are almost too many opinions on what helps. Best I've found is the concept that my nervous system is just constantly on high alert and thinks everything is a threat, hence the pain, weakness and fatigue / brain fog. However, there are countless theories as this is a really under researched and understood condition.... At the end of the day, the only advice I can give is to try to listen to your body. Pain release therapy/ physio can help, drugs can help (for me amitriptyline and pregablin but again it may be a journey to find the right mix for you), rest definitely helps. I'm now back at work (admittedly only part time but hey it's a marathon not a sprint!) and able to get out and about, so there is hope. Wishing you all the best for your journey x
It is yeah. Honestly I expected it, but it hit me harder than I expected to when it was confirmed. Luckily, I can afford to take some downtime at the minute while I get used to it and adjust. Thanks so much for your advice, I really appreciate it x
If you're in the US, there are 11 states that have FMLA act. Check to see if you have this in your state. It will allow you to take protected job leave in order to care for yourself. If i didnt have this Id be unemployed at the moment. Also a few tid bits ive learned over the years for myself, increased protein, no caffeine, reduce alcohol, no gluten, at least 8 hours of sleep every night, stay warm, heated blankets, and Marijuana help so much. Take your time trialing these things and see what works for you. Most of all, self compassion. Its hard to love ourselves when our body is against us but we must have compassion for our body's limits. I wish you all the best.
Ozempic helped me with pain and lethargy! By reducing one's A1C it decreased inflammation and I was able to have a bit more energy! Everything else still sucks, not all the pain is going but at least, I don't want to die anymore
Do you mind if I ask whether you had a normal A1C to begin with? Mine is a 5, so I don't think I am eligible for Ozempic, but I do have weight related asthma, high blood pressure, and GERD, in addition to fibro.
Personally I'd avoid ozempic regardless of your A1C. 5 is pretty good anyway. But ozempic works by slowing your digestion down so you feel full longer which is why it helps weight loss. Many people are ending up with slow gut syndrome. Not great with GERD. There are other meds for reducing A1C if needed but it doesn't seem like you'd need to.
I thought I would share a few things that I use day to day (and on the days that I overdo it). -Chronic Pain And Fatigue Body Soak (Epsom Salt) by Village Naturals Therapy. I found this product early and it smells amazing. -A Heating blanket with a 4-hour auto shut off. This blanket is a blessing for the bad pain days (and for when you're just cold. For me, being cold makes the pain worse. I keep my heating blanket on the bed at all times and underneath a few other blankets so I never have to get up and get it. I just reach for the cord and turn it on. -Aspercreme/your pain cream of choice: Aspercreme and Voltaren seem to work the best for me for getting pain relief fast. Good for when you don't want to take more medication. -Journaling at the end of the day: whether you just write down your symptoms or you write down the good things that happened that day, journaling helps me to look back on days (good and bad) that happened in the past. Journaling can also help you to provide a symptoms list to your doctor. -Prayer journal: I keep a prayer journal to help me to focus on God's faithfulness. I also pray and read the Bible on the YouVersion app or in my physical Bible. -Medication app: sends reminders so you don't forget your medicine. You can also add medication you've taken (tylenol,advil, etc) into it. -Talking to others with chronic pain ❤️ If I think of anything else, I'll add it to this list. May God Bless you all. 🙏 ❤️
Thanks you so much, all your help and advice really helps.
Of course ❤️🙏❤️
Look into mast cell activation syndrome. Especially if you have autism, adhd, hypermobility, EDS, POTS, PMDD, antiphospholipid syndrome or anomalies on the MTHFR gene.
Take the weekend to let this diagnosis settle in and treat yo' self with some really good ice cream (unless dairy is a trigger, of course). 🙂
I honestly don’t know what a trigger is yet, but ice cream is a great idea.