Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
About 5 months ago I lost all energy and started having unusual pain throughout my shoulders, back and hips. I also have had trouble rembering and at time finding the right words. I went to a Dr who pulled my bloodwork and it showed I had elevated numbers for Epstein Barr Virus and low Vitamin D. I changed my diet, took a vitamin D supplement, but I still haven't made improvement. I don't have a lot of patience so I have been searching for answers and going to numerous Dr's. I don't test postive for any inflammatory autoimmune disease, my vitamin D when last checked was back up...but I still don't feel better. When I last saw my primary care doctor, she thought my bloodwork looked okay, and said she would refer me out to a rheumatologist and neurologist, because she thought it might be fibromyalgia. She recommended starting cymbalta because she said if it was fibro that this would be the first line of treatment. I was hesitant to do this. While extremely frustrated, I don't feel necessarily depressed. As I have gone through this period of my life, it has sent me to my bible and prayer to get through and I feel very good spiritually and at peace, so I wasn't sure an antidepressant would be the best fit. I started for two days, and something in me just made me quit. After that I saw a hormone therapy Dr, who looking at the same blood work as my Primary care Dr, said your thyroid is shot, you should feel awful. She put me on Nature-throi and said it could take months but I would feel better. I am on my second week and I know I have to be patient but still no better with burning in my hips, radiating down into my legs with numbness. I'm sorry for the long post but now I am finally getting to the point, lol! I did receive a call from my referral for both the neurologist and rheumatologist. Ironically they wanted to schedule me on the same day, July 5th. I went ahead and scheduled so I would be on the books in case this thyroid is just another step in the wrong direction and I still don't feel better by that time. The question is would anyone recommned one over the other because I'm not sure which one to see? Has anyone had better luck with a neurologist or rheumatologist? Also, with my symptoms do you think I am going down the right path in thinking that this could be fibromylagia? Also, has anyone taken a natural approach that has helped? I have changed my diet cutting sugar and carbs, and I try to make myself do some yoga and stretching and go for a walk everyday and keep moving, but it hasn't seemed to help yet. My husband keeps saying to rest, but when I'm stationary the burning and aching just make me restless, so even though I'm tired my normal pattern is to get up and get moving. Any helps, tips, advice would be greatly appreciated. And after reading through your posts I am so sorry for all of your pain. God bless you all!
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
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Well..my thyroid might be a problem. I have a high TSH but normal T4. TSH increases when your thyroid isn't producing enough thyroid hormones...if only the TSH is high, it could be early or subclinical. Will wait and see if they want to do anything about that or just recheck it at some point. Either it'll even out or my T4 will drop. Meanwhile it's hot and I'm working with Karen, and I have no...
I would recommend seeing both doctors. I have thyroid disease and my thyroid still doesn't respond to meds 7 years after trying several thyroid meds. I have fibromyalgia and small fiber neuropathy, which my neurologist sees me for, but I also see a rheumatologist b/c they will determine if you could be showing the symptoms of an autoimmune disease despite what your bloodwork shows. I have been diagnosed as having lupus despite my blood turning out fine.
I would highly recommend seeing both doctors and if you want an immediate help on the thyroid I would ask your doctor about taking a pill over the counter called Thyromend by Douglas Labs. I buy it on Amazon and I immediately felt it, and it helped give me enough energy to clean my house. LOL. I don't notice a diff in pain but I am always cold and it has helped that. According to my natural doctor by supplementing for your thyroid you will lower the risk of getting small fiber neuropathy, which believe me is horrible pain.
I'm glad you turn to God! That has been my stronghold and strength through it all.
I pray that you get some answers coming up and they can find something to help you. You'll find a lot of us take a few meds, others just supplements such as myself. I hope this helps.
Susie
FYI - Only certain classes of medication are effective for the type of pain caused by Fibromyalgia. They are anti depressants. The three primary medications used are Cymbalta, Lyrica and Savella. Gabapentin is an old school choice but it can be very effective.
It takes time and a lot of tinkering to find the right dosage and combination of meds for each Fibromyalgia patient. There is no set "formula" that works for all of us. And, the longer a chronic pain cycle continues, the harder it becomes to manage for stop. When starting a new medication, stay well hydrated with water. Allow a minimum of three weeks to notice a change in your symptoms.
These days Rheumys and neurologists see Fibromyalgia patients. It is a disorder of the central nervous system. In some people, it can be caused by high levels of stress, an accident, childbirth, surgery or emotional abuse. The mechanism that causes it is not understood. I'd see both doctors and then decide if one or both of them could be helpful. Get copies of your recent blood work to save some time and money,
Fibromyalgia is a diagnosis of exclusion. When every other possible source of chronic pain has been ruled out, Fibromyalgia is the culprit. It has its own diagnostic code. Fibromyalgia is recognized by the National Arthritis Foundation, The Centers for Disease Control and the World Health Organization among others.
Good luck and take care.
Speaking of. You asked if the pain ever goes away. No, I don't think so. But others have reported going into remission. I had a good year once back in 2011 where my pain, fatigue and IBS was so minimal that I often forgot I even had fibro. I really wish I could get that back!
And about your medications. What works for some people doesn't always work for everyone else. Antidepressants can work well for some here, but others not. I can't take antidepressants because of nasty side effects. My doctors have tried all kinds with me, and no dice. But I do take gabapentin and it works well enough. I also take 300 mg of CoQ10 and that seems to help with fatigue, muscle pain, and some memory problems. Whenever I run out of CoQ10 I notice I flare more.
I also used to swim 2-3 x a week but since moving to Maui (from Oahu) where we are farther from the beach, going to the beach isn't as easy anymore. When we lived on Oahu, we were always about 10 mins drive to the beach and swimming was a practical morning or afternoon routine (I was often back home in one hour)... now we live up a mountain and a beach outing often eats up an entire day. We have a community pool down the street but it's for laps only and I often feel uncomfortable when it gets crowded plus people have a tendency to stare and then there's the whole locker room ordeal that gives me anxiety. But some exercise is better than none when coping with fibro. So I try to make the best of my options.
My mom has been battling thyroid issues for 30 yrs so I wish you luck in that department. She will be fine for a few months to 1 yr then it will go nuts again and they have to find a new dosage. Recently her body needed a new thyroid med altogether (the usual kind stopped working) and she was having trouble getting it here.
I swim all summer. If you want to take a class it should be limited to a water aerobics class specifically for arthritics. NOT, a regular class. I follow a very slow paced regimen in my pool at home. Some days, I'm not able to do much. I'm grateful for anything that I can do.
The key to living with Fibromyalgia is learning to say no, mean it and not feel guilty. And, pacing yourself. You can still live your life but at a much slower pace. Delegating and respecting your limits are very important. Take care.