Have your flares changed over the years?

Posted by mprimus @mprimus, 16 hours ago

Hi all! I'm new here but not new to Fibro world. I was DX in 2005 at 30. Early on, pain and weakness and insomnia were the biggest issues. I tried rx meds early on but the side-effects were too much. I've been going at this homeopathically for most of the last 15 years. Pain decreased significantly. Flares would last a couple days tops. All in all, it was mostly manageable, with a few bad flares a year. Then I got Covid in late 2020 and I feel like steadily the flares have been changing but I have also have been going through peri-menopause since 2014-ish. Not sure which or if both have caused the changes, since 2021 mostly, but fatigue and weakness is much more severe and fibro fog has been ridiculous. Flares have been steadily lasting longer and if something else is going on (upper respiratory, stomach flu, etc) then that will often trigger a flare as well, lasting a few weeks. I am all about self-care and mindfulness: EFT/tapping, meditation, journaling, yoga, vagus nerve massage...everything I can do to keep myself out of fight/flight, which has been harder over last few years . I've had lab work run recently: no thyroid issues, low D vit, and borderline low B so have started supplements for both (B complex and D+K). I eat 80% plant based, mostly gluten free, no sugar substitutes and have started tracking my meals with ChatGPT, lol, to see if there is any other deficiencies going on. I use ashwagandha and magnesium at night for sleep and just started Holy Basil during daytime (Rhodiola Rosea made me jittery and with heart racing symptom stopped that after a week) The weirdest and "newest" symptoms have been increased anxiety which has gotten nearly debilitating and what feels like a racing heart rate but yet pulse will measure normal (started before and has lasted after stopping Rhodiola). I also get quite low blood pressure during flares like 90/45, especially upon waking until late afternoon. Been trying to keep electrolytes up as well, as that may be a factor?? Have been dehydrated a couple times over last year and had to go on IV drip, so wondering if this is a contributing factor as well? Sorry for rambling. Helps me by listing everything out too but I'm really starting to feel like an ongoing science experiment lately, with trying new things but not a lot of improvement. It's been especially frustrating when I get 1-2 good days and then I'm back in bed/couch for days. Also wondering if climate is affecting things. We travel fulltime, mostly RV but international as well and have noticed that heat is a big no-no. Even desert heat, like AZ is causing a lot of issues. Any way, if you resonate with any of this and got to the end....thank you and please reply. Blessings to all! - M

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mprimus, God Bless you. I have had fibro for 30 years and yes, my flares have worsened with age. Having COVID really ramped up Fibro.

I do have both Thyroid Diseases with it and arthritis pretty much all over and low Vitamind D3 which I take
supplements for. Make sure your B12 is not low.

I take tons of supplements as I cannot tolerate anything for Fibromyalgia except, Flexeril 5 mg. I try and move
as much as possible and stretch. Eat a lot of protein and stay hydrated. Get out in the sunshine as much as you
can.

I can plan events, but, that doesn't mean I will be able to attend and people understand that.

A gentle massage helps. My massage therapists uses Voltaren Gel when she massages me. Epsom Salts baths help. Bed Buddy Heat packs on Amazon help. I take Tylenol for pain as I cannot take NSAIDS. However, one doctor tried me with Mobic for 4 months, lowest dose and I got relief and then the side effects started and I had to come off. I do the best on short prednisone tapers when taken for bronchitis or to break the migraine cycle. I am pain free! I also do better when I am on an antibiotic for infection. Antibiotics reduce inflammation as well. You can't live on Antibiotics nor is longterm Prednisone good for you as it can affect your joints greatly.

Yesterday was a pajama day with rest. Sometimes if I can stretch out and nap for a few minutes, the pain will lessen.

My Primary has tried every medication for Fibro that others can tolerate....I can't. The side effects are horrific.

I am praying for you. My faith in the Lord is what keeps me going. I am so sorry you have this debilitating health issue. Research is back and forth on whether Fibromyalgia is autoimmune. I believe it is. Chronic Fatigue Syndrome tends to go along with it as well.

Blessings & Prayers....

REPLY
Profile picture for covidstinks2023 @covidstinks2023

mprimus, God Bless you. I have had fibro for 30 years and yes, my flares have worsened with age. Having COVID really ramped up Fibro.

I do have both Thyroid Diseases with it and arthritis pretty much all over and low Vitamind D3 which I take
supplements for. Make sure your B12 is not low.

I take tons of supplements as I cannot tolerate anything for Fibromyalgia except, Flexeril 5 mg. I try and move
as much as possible and stretch. Eat a lot of protein and stay hydrated. Get out in the sunshine as much as you
can.

I can plan events, but, that doesn't mean I will be able to attend and people understand that.

A gentle massage helps. My massage therapists uses Voltaren Gel when she massages me. Epsom Salts baths help. Bed Buddy Heat packs on Amazon help. I take Tylenol for pain as I cannot take NSAIDS. However, one doctor tried me with Mobic for 4 months, lowest dose and I got relief and then the side effects started and I had to come off. I do the best on short prednisone tapers when taken for bronchitis or to break the migraine cycle. I am pain free! I also do better when I am on an antibiotic for infection. Antibiotics reduce inflammation as well. You can't live on Antibiotics nor is longterm Prednisone good for you as it can affect your joints greatly.

Yesterday was a pajama day with rest. Sometimes if I can stretch out and nap for a few minutes, the pain will lessen.

My Primary has tried every medication for Fibro that others can tolerate....I can't. The side effects are horrific.

I am praying for you. My faith in the Lord is what keeps me going. I am so sorry you have this debilitating health issue. Research is back and forth on whether Fibromyalgia is autoimmune. I believe it is. Chronic Fatigue Syndrome tends to go along with it as well.

Blessings & Prayers....

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@covidstinks2023 thank you for taking the time to reply. I am sorry you are going through so much, yourself. May I ask, what supplements have you found help? I know that can change, atleast it does with me. What helps now might not in a few months. I find antioxidants can help me like mushroom powders and green drink mixes, if I need an extra boost. I have been really focusing on nutrition because I find I get an upswing in energy after late afternoon, like the nutrients I had earlier in the day are giving me a boost and help clear the fog. Sleep, for the most part is gd but if I don't sleep well, all bets are off lol. I understand feeling better with Antibiotics and prednisone but definitely not a longterm solution. I agree as well with the autoimmune piece. Have a beautiful day! - M

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