Welcome, Sounds like you will be an asset to the forums. Feel free to ask anything you need to know. There will always be someone, who can help.
There are many different views as to the cause and cure of Fibromyalgia. I personally believe main stream medicine.
There are some here that delve deeper into the cause and the continuation of its symptoms and ways to treat it.
There are those who use the Homeopathic way.
Just ask and ye shall find. Start your own thread with your main question and answers will come. We have some very knowledgable people with primary and secondary FM on here. Good Luck
I am new at this site and forum. I am an RN and was told I have fibromyligia secondary to Lupus. I have had ongoing and increased pain, sever anemia, and blood and iron infusions every 2-3 months. Even though I am an RN and can answer other peoples questions I need someone with new information to talk to.
helpinghandsofrn
Fibromyalgia is an illness diagnosed by excluding all other possibilities. I am glad to say that I am a very healthy woman but I have fibromyalgia.
I have a medium to severe case of fibromyalgia, depending on wether I am having a flare up or not.
Lyme disease is very close in nature to the symptoms of Fibromyalgia. When people say they have been tested for Lyme disease, I cringe because there are many tick born diseases that fall under the catagory that need to be tested for. Rocky Mt. spotted fever for one. Ehrlichia, Deer tick lyme disease, and others.
plus Bartonella, B Quintana,and B Henselae commonly known as cat scratch illness should be tested for. Parvo virus, EBV and the Mycoplasmas.
Have a health profile blood test and a chem profile. This will tell you if you have infection, any organs are malfunctioning or if you are deficient in minerals or vitamins.
Then you have a pretty good idea what is going on inside you, if all this is negative, and you still are experiencing symptoms, you have to look at what may have triggered your symptoms. Sometimes a severe illness such as EBV or the flu can trigger FM. A car accident or an emotional event.
For me it was EBV.
Here is a link to a "webinar" given by doctors at a Fibromyalgia & Fatigue centre, that I found the link for on this site. It is a fabulous explanation of the variety of symptoms and causes relating to this multi-faceted condition.
"Treating Fibromyalgia and Chronic Fatigue: Effective Options for a Hopeful Future was presented on Thursday, April 3, 2008" (link below).
http://secure.eloqua.com/e/er.aspx?s=949&lid=1&elq=1F18BF171BCB4DFE84752A3A78012279
Here is a link to a written presentation taken from the highlights of this discussion, very informative and interesting.
http://secure.eloqua.com/e/er.aspx?s=949&lid=2&elq=1F18BF171BCB4DFE84752A3A78012279
You will have to copy and paste these links into your browser.
I have been dealing with this thing since 1993 and have never come across such an informative and all-encompassing item.
It's hyperthyroidism. Any of the autoimmune disease can cause fibro-like symptoms but if these diseases are present then it's not primary fibro. People can get secondary fibro symptoms as a result of disease process.
Hi, Kim again. What is Grave's....never heard of it? Can you give me some info?
What bothers me is that I notice when I communicate with men who have fibro or CFS symptoms... they seem to get more attention from their physician than the females do ! They also get more testing done.
Anyone else notice tihs ?
I think most of us have been through this. I also believe it is an easy way out for the doctors. You might want to consider further work-up regarding lyme disease. Bell's Palsy is classic for lyme disease. So are your other symptoms.
PlateletGal, I completely agree with you. I see this happening a lot too. People list diseases they have been diagnosed with but still stay it's fibro. Fibro is a disease of exclusion, meaning all other diseases have been ruled out. All testing is usually normal. So if there is a diagnosed disease process like Grave's or others then the symptoms are secondary to a disease process. This is not primary fibro.
I'm not sure how you were misdiagnosed with fibromyalgia, when you actually had graves disease. I think this is happening too frequently and I wish that the medical profession would do something about it.
I don't have fibromyalgia (at least not primary)... but I can tell you that I do read the research on fibromyalgia and I do believe it is a very real condition.
I do believe doctors use that when they can not figure it out, or do not have the time to figure you out.
I have been there one to many times. I finally have a doctor who listens. Let's see everything I had that was blamed on fibro, or it is all in your head.
graves disease/hyperthroidism (had TT)
sialadenitis (removed submandibular gland & two lymph nodes)
eagle syndrome (removed calcified ligament)
over medicated on thyroid medicine
If i would have accepted that diagnosis, especially with graves, I would be dead.
Weakness and muscle pains are definitely common in CFS patients. Has your doctor ruled out autoimmune conditions, including Celiac disease ?
Hi there, Kim here. The reason i had the MRI as far as I know is to check for MS symtoms...leisions. I was also tested for Lyme, but i live in Ontario Canada and the blood test is not accurate here, so they think that might be something to look at. I also had Bell's Polsy years ago, and i guess that can lead to MS, not sure. Dont feel i have ms, i look after ms patients and this just all seems so odd. I honestly think the docs are messed up here, and have no clue, wish i could see a doc in Toronto, i live in a very small town...makes things difficult.
Hi Kim,
If I didn't know better I would think that I wrote your words. I can sooo relate to you and how you are feeling. Its a very lonely place to be. I have been diagnosed for 2 years now, and feel worse all the time. Im praying that the world of doctors can find a cause to all of this madness and get us all some help. Hang in there and only take things on that you can do, and even then---do it 5 minutes at a time. There are days that I only get the dishes from yestarday finished. I do want you to know that you aren't alone in suffering, we are all there with you.
Blessings and hugs,
Suanne
Fibro & CFS are very real conditions. There is a test on spinal fluid that apparently can make the diagnosis, but it is still in the research phase. I hope that you will continue to post and check out the health pages (look to your right) and you can find out diagnostic tests and treatments... recommended by the experts.
I too have been battleing with drs for far too long....did ur dr say y they were doing the brain MRI-what were they looking for?...I have chiari and a brain MRI will detect it...however if yr dr is not a chiari specialist...u will feel like u r at square one.....I was given the anti dep also...I also have all the tender points for fibro, my mom and sisiter alaso have it....I pray ur brain MRI is clean....and that u find what is causing u such misery......
Keep me posted.
Good luck
Godspeed
"selma"