Fibromyalgia Symptoms HOME

PianoPlayer - I'm sorry that you are having such a difficult time. As you have discovered, there are still a lot of healthcare professionals out there who think Fibromyalgia (FMS) is a figment of our collective imaginations. FMS is recognised by the Center for Disease Control and the National Arthitis Foundation.

The orthopaedic doctor you saw needs to reprimanded for his rude behaivor. I would be writing a letter of complaint about his mannerism to your healthcare insurer as well as the hospital system he is associated with.

The doctor you need to see is a theumotologist. They are best suited for diagnosing and treating FMS. You need to see one as soon as possible. It is possible that you have another issue that is mimicing FMS (like thyroid). If you have any recent bloodwork, get copies and take them with to save time and expense. You should also be tested for Vitamin D levels and gluten sensitivity. Checking Vitamin D is done with bloodwork. Many people with FMS are deficient. The gluten test is done using a stool sample for accurate results. It is possbile to be sensitive to gluten without having full blown celiac disease. Either of these will cause widespread pain.

You can call your local hospital physician referral service and ask them for a rheumotologist
and/or a pain specialist (I have both) with an interest in FMS. If you are in the US, go online to the National Fibromyalgia Association website and register. Then you will be able to see a list of fibro-friendly physicians in your area.

FMS only responds to certain classes of prescribed medication. OTC remedies are a waste of time and money as they are not effective for FMS pain. There are now three main prescription medications used to treat FMS - Lyrica, Cymbalata and Savella.

One of the reasons you may be so sore is due to a lack of deep sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain waves. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of ppain. Anitriptyline is usually prescribed for sleep issues associated with FMS. I also want to add that the longer a chronic pain cycle continues the harder it is to manage or stop.

AS for your mother's attitude towards your illness, it is not unsual. Let's face it, a broken leg is something everyone can see and understand. I'd recommend that you consider buying "Fibromyalgia for Dummies" when you have a firm diagnosis. There is no cure for FMS but it can be managed. You need to be well educated on the subject so you can effectively counter any idiotic remarks made by well-meaning friends and family members.

I have had accupuncture done. Initially, the common response is to be in a lot more pain than when you started. Then things start to slowly get better. Some people can not get past the
first part of the treatment. It requires ongoing treatment as it is not going to take the pain away forever and completely. I had to stop as I could no longer afford the out of pocket expense.
I thought it was worthwhile and would consider doing it again.

The burning sensation you describe may very well be nerve pain. I have degenerative disc disease and experience that type of pain in my legs. Gabapentin is usually prescribed for this issue.

As far as your doctors go - I'd get rid of all of them and start over. It is apparent that they don't want to listen to you. I'd go in there and tell them exactly how you feel about their lack of care and compassion. Tell them/insist that you want to be evaluated for Fibromyalgia. If they still don't listen, fire them and find someone new to look after your healthcare.

Good luck and I hope that something I said is useful to you. Take care and God Bless.

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My physiatrist said the following to me:

"Don't ever let anyone try to convince you that Fibromyalgia is what a doctor diagnoses you with when they can't find anything wrong with you. It's just not true."

She went on to explain that the diagnostic tests used to rule out other diseases only scratch the surface. There could be imbalances that the tests aren't able to detect. In addition to that, there are fundamental differences in the way the cells of our body work. They have been able to view these difference under the microscope, they aren't just theories.

I would strongly recommend calling your local hospital referral service like Fantod suggested. FMS is real and it's not going anywhere. It has been around for hundreds of years and is only now starting to gain recognition. It's been called many names, including "the lazy man's" disease. You are anything but lazy. You are tough and you are young.

Do as much research as you can, google your symptoms, knowledge is power!

I wish you luck in finding a doctor who understands FMS. You aren't alone PianoPlayer, we're all in this boat together. : )

You doctor is correct in telling you that Diclofenac can ruin your stomach, especially given you age. Go to your local pharmacy and see if they have it in an over the counter topical solution, It's called Voltaren here. I bought it on advice of the pharmacist and showed it to my physiatrist. She was very happy that I had found it but warned to only apply it twice a day and try not to use it too much, just when the pain gets to be too much; you can build up a tolerance to it. Maybe something you could rub on your wrists before playing the piano, it works quite quickly. Just be sure to wash your hands after applying it.

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PS]]I did try acupuncture, unfortunately it was not very effective for me. I have heard that it does work for some people though. It doesn't hurt so it's worth a shot. : )

Massage was very beneficial, especially for the neck and upper back/shoulders...ok the whole back...legs too, arms, hands! Oh, the top of the head! You get the point right? lol

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I just wanted to give you some more info on FMS being real. These quotes are from an article Fibromyalgia pain, isn't all in patients' heads new brain study finds" at fibrohugs.org:

"The fMRI (functional MRI) technology gave us a unique opportunity to look at the neurobiology underlying tenderness, which is a hallmark of fibromyalgia," says Clauw. "These results, combined with other work done by our group and others, have convinced us that some pathologic process is making these patients more sensitive. For some reason, still unknown, there's a neurobiological amplification of their pain signals."

For decades, patients and physicians have built a case that fibromyalgia is a specific, diagnosable chronic disease, characterized by tenderness and stiffness all over the body as well as fatigue, headaches, gastrointestinal problems and depression. Many patients with the disease find it interferes with their work, family and personal life. Statistics show that far more women than men are affected, and that it occurs mostly during the childbearing years.

The ACR released classification criteria for fibromyalgia in 1990, to help doctors diagnose it and rule out other chronic pain conditions. Clauw and Crofford's editorial looks at the current state of research, and calls for rheumatologists to take the lead in fibromyalgia care and science.

But many skeptics have debated the very existence of fibromyalgia as a clearly distinct disorder, saying it seemed to be rooted more in psychological and social factors than in physical, biological causes. Their argument has been bolstered by the failure of research to find a clear cause, an effective treatment, or a non-subjective way of assessing patients."

I hope this helps to reassure you. : )

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I have had accupuncture for ages, and yes it works on some people, on me, it works very well.The first time I used accupuncutre was for a back injury back in the 80's, and no I did not have fibro then. Three visits and my back problem was corrected, I had pulled a muscle and it hurt terribly.

Now I use accupuncture for my fibro along with an alternate of chiropractors and I must say I prefer accupuncture over chiro.

Does it hurt, NO NO AND NO, these needles are so fine you do not know they are in your skin, and besides they put the needles in the first layers of the skin, so no it doesn't hurt.

But it does hurt your pocket book, if you have to pay.....

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Fibro is not a catch all diseas, it's a real thing and if you have it, when you say it hurts it does.

I sometimes, will have to sit for long period of times, because I cannot move because it hurts alot. Hubby and daughter know I'm sick, but they have their moments of not believing me. What can you do, only do your best.

Good luck to you sweetie and yes, follow everyone's post.

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I tried chiropractic care, it made me more sore. My physiatrist said that it is very common for people with FM to not respond well to chiropractic adjustments.

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You should be glad that your doctor wants to rule other things out. It might be that you don't have fibro, and if that's the case, what you do have, could possibly be treated, and maybe cured. That is a good thing. He obviously believes you are having pain, or he wouldn't be running all the test.

If a diagnosis is rushed and you are labeled as having fibro, then your real diagnosis may never be known. Be patient, as long as your doctor is trying to diagnose you and trying to treat your pain then he is doing his job.

If you are not happy with your doctor you may want to find a new one, but don't just look for a doctor who is willing to diagnose you with fibro right off the bat. The only way to diagnose fibromyalgia is to rule out everything else first, since there are no medical test to prove fibromyalgia. Fibromyalgia therefore should be the last possible diagnosis you should look at. It is also the last thing in the world you want to have, since there are no true treatments for it.

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Keep in mind, I am only going by this single post of yours and don't know your complete history with your doctor, test done, and such. Also I am biased since I pushed my doctor into giving me a diagnosis of fibromyalgia based on what I read on the internet, and it was a misdiagnosis. So not to threadjack, I will be starting a topic on my own situation

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If you truely believe you have Fibro, you need to see a rhematologist, they are really the only Drs who are qualified to make a fibro diagnosis. Fibro is still very unknown to a lot of the medical community so someone who has studied it and treats it regularly is your best bet.
Make sure you get a copy of your MRI to your rheumatologist when you make an appointment, because they try and rule out everything else before deciding that fibromyalgia is the diagnosis. There are many disorders which often get confused for fibromyagia so it is important that everything else is ruled out.
As far as pain, my rhemuatologist recommended Tylenol Arthritis as an over the counter med, he said that usually works better then advil or aleive.
Hang in there, the key to a correct diagnosis and treatment is finding the correct Dr.

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Hey Piano Player!

Sorry to hear you're going through what so many Fibromites do - crappy doctors! My sister has FM and it took her a long time to get officially diagnosed. Hang in there. I will ask her about the burning under the skin, but that doesn't sound familiar to me. I belong to the community at fibro free life and we just posted something on MRIs and have a lot of useful info on acupuncture. i hope you'll join us, i guess i can't put the link but its called "Fibro Free Life"

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