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Old 03-13-2018, 04:35 PM
 
Location: Log "cabin" west of Bangor
5,487 posts, read 6,424,991 times
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It took a long time for my wife to be diagnosed...because she had a triple-whammy- FM, Lyme, and Shingles, all at once. After the Lyme and Shingles were cleared up, she went on Lyrica (pregabalin) and Gabapentin and that helped...but she didn't like taking it. Eventually she weaned herself off them. She still has pain, but deals with it...spicy food seems to help a bit.

(Aaaaannnnnddd, cue the appearance of a poster promoting unfounded 'homeopathic' 'remedies'...)
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Old 03-13-2018, 04:57 PM
 
465 posts, read 217,649 times
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Fibromyalgia (like many diseases) is a set of symptoms, with many causes. What kind of testing have they done for your RA? Cytokine testing? Hypercalcemia? Vitamin D?
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Old 03-13-2018, 07:25 PM
 
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Vitamin d , creatine,lupus,Lyme titters,ama and a couple of others. I have had a series of repeated blood work, but nothing triggered positive, except vit d and creatine.

I can't believe I had to steer myself to see specialists. None of the doctors understood my symptoms. Fatigue, sore joint muscles/tendons, soreness and tenderness, and the daily crashing in bed, because I could not stand the urge to stretch all day long.and the bouts of GERD.

Well, can only see how things go for the next few months.thanks for the responses.
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Old 03-13-2018, 08:34 PM
 
Location: too far from the sea
17,971 posts, read 17,131,123 times
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Quote:
Originally Posted by kapikap View Post
Vitamin d , creatine,lupus,Lyme titters,ama and a couple of others. I have had a series of repeated blood work, but nothing triggered positive, except vit d and creatine.

I can't believe I had to steer myself to see specialists. None of the doctors understood my symptoms. Fatigue, sore joint muscles/tendons, soreness and tenderness, and the daily crashing in bed, because I could not stand the urge to stretch all day long.and the bouts of GERD.

Well, can only see how things go for the next few months.thanks for the responses.
I've had fibromyalgia twice. No one really understands it and it's different for everyone. "They" say that it usually follows an emotional crisis combined with muscle strain. (Mine was a divorce and having to pack and move the contents of an entire house into storage. I came out of it black and blue with aching muscles, dizzy--two months of packing!)

From my personal experience, I agree with a few previous posts about getting a vitamin and mineral test. Also, the rotation diet--most people with fibro have undiagnosed food allergies. These allergies cause the fatigue, brain fog, even the inflammation. Really, either get tested by an allergist for foods and other allergies or try to figure it out for yourself by using a rotation diet. I turned out to be highly allergic to all dairy products! I had no idea.

When I first got sick, I was fortunate to find an actual fibromyalgia specialist. He held a group appointment because the advice was the same for everyone: 20 minutes of aerobic exercise every day. I was so sore and weak that my exercise had to be done in a heated physical therapy pool. They gave me a few exercises that I could do lying down on the floor at home too. That worked! I could walk and there was no pain at all.

Next time I got fibro it was after being sick for the entire winter. I must have been so worn out that the fibro came back. Went back to the swimming pool and again, it worked. I did see a rheumatologist for something but he was clueless about fibro.

These are just some ideas. Fibromyalgia is a general term for a collection of symptoms that are poorly understood. (For my second bout of fibro I found that I was deficient in an amino acid called L-Glycine. Quite by accident! I think I would have gotten better with the aerobic exercise but I got better overnight by taking the supplement which was supposed to help with the sleep issue.)

Good luck. It's no fun having a illness that no one understands.
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Old 03-13-2018, 09:15 PM
 
Location: Middle of the ocean
27,429 posts, read 17,619,243 times
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I hope you are seeing an RA specialist. That's the one who manages my symptoms the best and was the most knowledgeable.
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Old 03-14-2018, 05:48 AM
 
185 posts, read 102,369 times
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Quote:
Originally Posted by kapikap View Post
I am being treated for fibromyalgia, it is a diagnosis so far ,visiting the rhumetologist for 6 months now.

I have pain in most all joints and a stiff neck. I also am suffering arthritis an 2 radiculopathies. I also have restless legs and arms, can't stop stretching and rotating my wrist and ankles.insomnia in addition.

Could I possibly not have fibro ,but something else? Multiple blood work does not point to another direction. No Lyme lupus or thyroid issues. Trigger points are positive in multiple locations.

Can fibro be confused with something else? My doctor is an old timer, and knows his stuff. Very involved withy health.

The reason I ask if it can possibly be something else, is because I am a male. I have been getting checked out by many different specialist, and have finally getting treated for something.

I am excited to find a diagnosis for my fatigue and pain, but not excited of what I am looking forward to. 6 different meds , to take daily ,is not fun.
How old are you? I have a condition called Polymyalgia Rheumatica AKA "PMR". It is unusual for males and nearly unheard of for those below age 60. It is most common with those of a specific genetic mutation from northern European ancestry. Generally, the pain is more severe when you get up in the morning or after sitting for an extended time. PMR does not swell the joints and is in fact an auto-immune disease where your white blood cells attack your blood vessels and joint linings and cause inflammation.

PMR cannot be diagnosed with a blood test but there are two tests used to check for inflammation, Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP). (BTW Fibro does not cause inflammation)

Usually a 15-20 mg dose of prednisone will quickly relieve the symptoms, sometimes within hours. In my case it took 25 mg and two days.

This is not medical advice. Please consult your doctor.
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Old 03-14-2018, 06:05 AM
 
185 posts, read 102,369 times
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PS:

I am a white male and 66 years old.
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Old 03-14-2018, 07:34 AM
 
Location: Milwaukee
2,932 posts, read 1,651,620 times
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Default Follow the Money

. . . physicians who are opposed to the fibromyalgia diagnosis say the new drugs will probably do little for patients. Over time, fibromyalgia patients tend to cycle among many different painkillers, sleep medicines and antidepressants, using each for a while until its benefit fades, Dr. Wolfe said.

“The fundamental problem is that the improvement that you see, which is not really great in clinical trials, is not maintained,” Dr. Wolfe said.

Still, Dr. Wolfe expects the drugs will be widely used. The companies, he said, are “going to make a fortune.”
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Old 03-14-2018, 10:46 AM
 
1,326 posts, read 526,801 times
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Try a gluten free diet. https://www.painnewsnetwork.org/stor...h-fibromyalgia
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Old 03-14-2018, 12:45 PM
 
3,323 posts, read 3,259,105 times
Reputation: 8423
Quote:
Originally Posted by kapikap View Post
I am being treated for fibromyalgia, it is a diagnosis so far ,visiting the rhumetologist for 6 months now.

I have pain in most all joints and a stiff neck. I also am suffering arthritis an 2 radiculopathies. I also have restless legs and arms, can't stop stretching and rotating my wrist and ankles.insomnia in addition.

Could I possibly not have fibro ,but something else? Multiple blood work does not point to another direction. No Lyme lupus or thyroid issues. Trigger points are positive in multiple locations.

Can fibro be confused with something else? My doctor is an old timer, and knows his stuff. Very involved withy health.

The reason I ask if it can possibly be something else, is because I am a male. I have been getting checked out by many different specialist, and have finally getting treated for something.

I am excited to find a diagnosis for my fatigue and pain, but not excited of what I am looking forward to. 6 different meds , to take daily ,is not fun.
Of course you could be misdiagnosed. Fibromyalgia is a wastebasket diagnosis (meaning after you've ruled out everything else, you call it fibromyalgia). There have always been these kind of wastebasket diagnoses, usually applied to women, like "neurasthenia". There is no test for fibromyalgia. The typical patient is an overweight female.

If you're grossly overweight, know that fat is an endocrine organ, secretes estrogen, and can cause inflammatory joint pain. Getting lean can make all those aches and pains go away.

I think that a second opinion is in order, just to be sure. Have a consult with another rheumatologist, preferably a younger one at a major academic medical center. Bring all your tests with you.

Hope you feel better.
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