Fibromyalgia: Anyone out there with the same diagnosis?

Posted by dknnkn @dknnkn, Apr 29, 2012

Hello! I was just diagnosed this Friday with Fibromyalgia. Is there anyone out there with the same condition. I am a 37 yr old female that was pretty active until I took a drastic decline with severe increases in pain in August. Initial blood tests were pointing towards lupus, but after a thorough exam---fibromyalgia it is. My rheumatologist started me on a 2 week trial of savella. Thanks so much for any insight you may have for me 🙂

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

I have had Fibro 21 Yrs and rather than try to describe it, I urge ppl to read articles about it on Google. I would like you all to know, if you don’t or can’t find ways to avoid making your pain worse and to control your pain it will grow until eventually it is a monster. I highly recommend meditation. Hum deep in your throat while meditating because that turns in the Parasympathetic Nervous System which is the calming, relaxing division of the Central Nervous System. Gargling and bearing down turn it on also. Think positive thoughts. Avoid the news. Do Foresting and Grounding (barefoot on Mon-sprayed grass). Exercise gently and limit the length and intensity. Increase fiber and filtered water a lot in your diet and take a probiotic. Ditch sugary foods, processed foods, bad fats (seed oils), caffeine, alcohol, dyes, MSG, dairy, soy, gluten, bread yeast. Learn to make gluten free wraps (2 c GF oatmeal blendarized with 1 1/2 c water add a tiny bit more water if needed.

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Oops non-sprayed grass.

Take CoQ10 and Resveratrol. CBD at bedtime. Epsom Salt soaks. Prayer. We all need a very good relationship with God who loves us beyond our understanding or imagination! Count on it!!

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@davej

Does fibromyalgia have the same symptoms as a bad case of inflammation in the hands?

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I think it does for certain people. My sister’s friend gets these symptoms. Please stop 🛑 eating inflammatory foods.

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Just found your discussion. I have had fms for 40 years and have found that environmental factors greatly affect the nervous system and immune system. Try making your home environment chemical free. Switch to unscented personal care, laundry and cleaning products for a start. Then tackle your electromagnetic exposure. Simple things like making your bedroom as close to camping as possible is a good idea. In other words, unplug all devices from your bedroom, which means no smart phone on, no tablet or desk top on or charging, not even a plug in alarm clock. Invest in a battery operated analog alarm clock. The reason that people feel so good when they are in the wilderness is not just the visible beauty, it is the absence of all these stressors on our bodies---manmade chemicals, electricity and all its associated devices, noise and artificial lighting. Which reminds me, conventional filament lightbulbs are much kinder on the nervous system than the energy saving ones. Put me in the vicinity of a plug air freshener or a big screen TV and I am in agony. Surgeons ask that their staff not wear cologne and cancer doctors tell patients (off the record) not to use fabric softener anymore. Gravely ill patients cannot tolerate heavy scents or chemicals in their hospital rooms. I know docs that had to stop being a surgeons because the disinfectants that they use in the operating room made them too ill to work there anymore. Everyone that knows this is too afraid to come out publicly and say this in fear of being called crazy. Heh, guess what, most docs already treat fms patients as if their complaints are somatic (in their head) anyway. So what have you got to lose by some simple, inexpensive changes to your home environment? Good luck.

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Good Day hopeful2~
What a wonderful 'rap' you gave us all...much appreciated! As well as being right on the $!
My sweet hubbie of over 47 years passed away last year..from PD with LBD....BUT...he did have fibro for 38 years before he ever got PD. Back then it was thought to be Epstein-Barr syndrome....scoffed at a lot..".all in his head"...most of all the doctors we sought out didn't know a thing about the illness or how to treat it, at all. We feel he got it from being exposed to the toxins associated with cat litter effluents....as he tested positive for feline taxo??/?....not good....exercise was helpful as he was a student of yoga and meditation..we ran 100's of miles together before this all started. We did improve upon our already rather strict diet, compared to western pallets. Didn't seem to matter much...around 2 in the afternoon...every single day, without fail..he would start to 'feel' it coming on....chills..then tremors all over his body, now in extreme pain. This would go on for hours...then we discovered Percocet...he could do a half and get some relief, but didn't like the drug at all.....BUT...the biggest help he got was from Amitriptyline...that med seemed to quiet the beast down so he could enjoy his life..took 2 pills a day for the rest of his life....it's inexpensive and tolerated well..and saved his sanity...check it out....blessings....

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Hi
I too have been diagnosed with fibromyalgia which is a diagnosis of exclusion,
My body aches all the time, my neurologist has placed me on Cymbalta, which I am not sure if it is helping me or not. I have to push myself to exercise and I find that to be helpful,water aerobics might be something you could try.
I am hopeful that with so many people diagnosed with fibromyalgia that they will find something out there to help.
Good luck with your doctor, it sounds like she is on the right path.

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Hi, I was diagnosed with fibromyalgia in April 2019. Looking at all the symptoms & body systems it covers, I believe I’ve had it all my life. In my early tween years, my sins hurt so much, it felt like my bones were shattered glass, always stabbing & slicing through my calves. I stopped growing at 12. What had been put down as growing pain was now just not listened to. I’ve had a host of other issues, but you don’t need to be bored! (Let me know if you want me to list all of them. I will.) I see a neurologist instead of a rheumatologist. The “best” in the area was rude, never let me finish a sentence & only wanted to get to his next patient. His attitude was awful. I have never back talked to a doctor, but this ma needed it. The “rooms” we were in were tall cubicle walls with accordion walls going across—in other words, zero privacy. I’m standing there in my little paper top & I stopped the doctor by calling his name. I said, don’t look at your notes. What’s my name? Don’t help him, Ms ——(can’t remember her name now). Long story short, he was horrible. After my next neurology appointment, I might look up a different rheumatologist. My neurologist just tosses prescriptions at me. She doesn’t seem to have any real idea of what to do with a fibromyalgia case. I also have an acoustic neuroma (benign inner ear tumor), and thought since fibromyalgia pain is from your nerves, a neurologist would make more sense than a rheumatologist I was given Lyrica (pregabalin) for my pain & I also got Cymbalta. Lyrica stops pain for some reason. It began as an epileptic med. Cymbalta is an antidepressant. Antidepressants and anti anxiety meds are usually given to fibromyalgia patients, since stress, nerves, anger, etc can all cause pain, keeping your muscles tense. I’m still tense with an antidepressant, anxiety meds & Lyrica (along with diabetes & cholesterol meds). The only time I’m not in pain is when I’m asleep, but I don’t sleep well because my muscle spasms, zaps, zings & pain never stop. I hope you start feeling better soon, though if it’s fibromyalgia, meds just dull the pain. I wish you well.

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@ls1313

Hi, I was diagnosed with fibromyalgia in April 2019. Looking at all the symptoms & body systems it covers, I believe I’ve had it all my life. In my early tween years, my sins hurt so much, it felt like my bones were shattered glass, always stabbing & slicing through my calves. I stopped growing at 12. What had been put down as growing pain was now just not listened to. I’ve had a host of other issues, but you don’t need to be bored! (Let me know if you want me to list all of them. I will.) I see a neurologist instead of a rheumatologist. The “best” in the area was rude, never let me finish a sentence & only wanted to get to his next patient. His attitude was awful. I have never back talked to a doctor, but this ma needed it. The “rooms” we were in were tall cubicle walls with accordion walls going across—in other words, zero privacy. I’m standing there in my little paper top & I stopped the doctor by calling his name. I said, don’t look at your notes. What’s my name? Don’t help him, Ms ——(can’t remember her name now). Long story short, he was horrible. After my next neurology appointment, I might look up a different rheumatologist. My neurologist just tosses prescriptions at me. She doesn’t seem to have any real idea of what to do with a fibromyalgia case. I also have an acoustic neuroma (benign inner ear tumor), and thought since fibromyalgia pain is from your nerves, a neurologist would make more sense than a rheumatologist I was given Lyrica (pregabalin) for my pain & I also got Cymbalta. Lyrica stops pain for some reason. It began as an epileptic med. Cymbalta is an antidepressant. Antidepressants and anti anxiety meds are usually given to fibromyalgia patients, since stress, nerves, anger, etc can all cause pain, keeping your muscles tense. I’m still tense with an antidepressant, anxiety meds & Lyrica (along with diabetes & cholesterol meds). The only time I’m not in pain is when I’m asleep, but I don’t sleep well because my muscle spasms, zaps, zings & pain never stop. I hope you start feeling better soon, though if it’s fibromyalgia, meds just dull the pain. I wish you well.

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regarding muscle spasms that wake you up from sleep; i now take 2 methocarbamol (muscle relaxer) pills, and it makes a big difference. i don't wake up as often during the night with the pain of leg and foot muscle spasms. hope it gets better for you.

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I was diagnosed with Fibromyalgia in 2006. I felt like I had severe flu every afternoon, inflammation with it was awful, IBS, burning stabs in the night.....
-I left my well paid career and took a non-stressful job.
It took a while but started improving.
-cut out sugar and night shade vegetables.
It is so much better. I can tell within hours if I eat sugar.
I still have issues but much easier to live with.

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@pgbarnes99

I was diagnosed with Fibromyalgia in 2006. I felt like I had severe flu every afternoon, inflammation with it was awful, IBS, burning stabs in the night.....
-I left my well paid career and took a non-stressful job.
It took a while but started improving.
-cut out sugar and night shade vegetables.
It is so much better. I can tell within hours if I eat sugar.
I still have issues but much easier to live with.

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Welcome @pgbarnes99, Thank you for sharing your experience with Fibromyalgia and what you have done to help the symptoms. I think you hit the nail on the head that diet is so important for a lot of different health conditions. I definitely need to watch my sugar intake to help with my PMR and keep it in remission.

You mentioned you still have other issues but they are much easier to live with. Do you mind sharing a little more about the other issues or what you were searching for when you found Connect?

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