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Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).

Forever Fibro

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Old 07-11-2019, 06:08 PM   #1
Razorbackfan
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Default Forever Fibro

I have had fibromyalgia for years. The only thing I take for pain is advil or a muscle relaxer. Does anyone ever feel like your doctor forgets you have fibromyalgia. I feel that way a lot with my doctor. Its really hard to know what to address when you have multiple things going on and symptoms that can overlap each other. I take it one day at a time. What is your favorite pillow to sleep with at night?
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Old 10-29-2019, 11:39 PM   #2
Katkeyper
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Quote:
Originally Posted by Razorbackfan View Post
I have had fibromyalgia for years. The only thing I take for pain is advil or a muscle relaxer. Does anyone ever feel like your doctor forgets you have fibromyalgia. I feel that way a lot with my doctor. Its really hard to know what to address when you have multiple things going on and symptoms that can overlap each other. I take it one day at a time. What is your favorite pillow to sleep with at night?
Hi - I'm new here, but not new to FM. I feel your pain in getting doctor's to understand. A pain specialist diagnosed me officially 15+ years ago, but my neuro didn't believe in FM at the time. I asked him to send me to someone who did! That changed my life a lot at the time. More medical issues have been added to my plate since, and I'm resistant or allergic to most medical treatments. I have a new Neurologist who is very familiar with FM and my growing symptoms (neuropathy, headaches, dystonia, autoimmune...etc.).

Do you have any nerve pain, tingling, numbness or burning in your feet or hands? If so, ask about getting tested for Small Fiber Neuropathy and also for TS-HDS, an antibody associated with SFN. I'd also find out what neurologists in your area do treat for FM so you can get the treatment - and respect - you deserve for your condition(s).

Maybe you are already doing this, but one thing that has helped me...I typed a list of my symptoms, when condition/symptom started, and any diagnoses (with dates if remembered). Kept it very high level. After the usual, "what are you top symptoms today," I'd ask them to please take 2 min. and scan my list in hopes they can connect the dots for bigger or underlying issues. I try to group like things together and put the "craziest" ones at the top. Mine is two bulleted columns on one page in 10pt type. It's working. I finally have doctors paying attention to it.

After a gazillion pillows, I found the Original Mattress Company pillow to the be best for me. It was a freebie with our bed order.

Best of luck - be your own advocate!
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Old 11-02-2019, 03:59 PM   #3
caroline2
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I was told back in 1999 by an endo that I had Fibro when I went to him for thyroid HELP. I have been going to docs for about 10 yrs for depression which I believe was thyroid all along. This was all after menopause in my 50's.

No labs could help me with thyroid and docs kept giving me A/D drugs and then the one endo said Fibro. I have had a tough time believing this fibro stuff as it's so much that the docs can't help. WE have to be our own docs on this one I believe.

Turns out it was thyroid that needed help and a D.O. I was seeing for years for my back issues put me on Armour, no labs, nadda, and depresion lifted in 4 days.

I've lost a lot of trust and faith in docs except for Dr Google and Fibro/CFS support groups and forums. To this day I don't know about that Fibro dx. This all started in my 50's and I'm 81. I know I deal with bodywide Osteoarthritis.
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OA onset at 18, now 79. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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