Please Help

[Carisa96JO]

I have been going to many different doctors trying to get a diagnosis I am all most for sure that it is fibromyalgia. But I am getting really frustrated because every doctor I go to says that I am just deppressed and that is not the case at all. Does everyone who has fibromyalgia get told that a lot and how do I get them to beleive that I am not deppressed, and that my symptoms are VERY REAL!   Also I have one more question is fibromyalgia Genetic?

[PlateletGal]

The majority of CFS patients are having sleep issues, including sleep apnea. I've listed information on this in our health pages under "Diagnostic & Blood Tests to Help Diagnose CFS". Here is the link:


http://www.medhelp.org/health_pages/Fibromyalgia/Diagnostic--Blood-Tests-to-Help-Diagnose-CFS/show/376?cid=39

[PlateletGal]

A clarification on my statement where I said that fibromyalgia was not genetic:

I believe that people can be genetically predispositioned to chronic illnesses, but I also know that mycoplasmas can alter our DNA !  So I have to agree with Amy Proal, Dr. Marshall and the other physicians who are now supporting this theory. Here is a link on the subject:

Bacteria vs. genetic predisposition: the spread of chronic disease in families

http://bacteriality.com/2007/10/31/family/

[Gracie0315]

You didn't say where you live but there are doctors who are more enlightened than others. And it might be wise to seek their counsel. But let's be clear here: chronic pain and fatigue is going to make ANYONE depressed. And if you've been living for this for - say - years (like I have). I couldn't agree more about the Lyme disease test. I also STRONGLY suggest that you get a sleep study which should be covered by your insurance company. Sleep apnea is a huge contributor to fibro symptoms.

By now I'm sure you've read that current treatment is a combination of medications and lifestyle changes. Some folks are on complete disability. The current medications have significant side effects and they may or may not work for you. The process is trial and error.

So find a rheumatologist - preferably one associated with a university medical center. Read up on the current medications like Lyrica, Cymbalta, Ultram, etc. and call your insurance company to see if they will be covered by your health insurance. By the way, the drug companies do offer cards that will reduce your prescription price at the pharmacy. Regardless of sleep apnea testing or not, focus on developing good sleep habits. (That was my number one "self-improvement" decision.) When you are in pain, this is particularly difficult. Mostly, try not to allow yourself to be bullied by a doctor. Your doctor is not serving your needs. Find a new one. And before you spend your money on a visit, ask if he/she treats fibromyalgia patients. Good rheumatologists do - they recognize this as real.

p.s. current thought is that it is not genetic.

Hang in there!

[patsy10]

Yes I think many of us get labeled as depressed, anxious etc....I know I did.  Many doctors feel they must give a diagnosis so when tests come back normal well then we must be "depressed".  "I don't know what is wrong with you"  would be a much better answer  IMO.

[kariered]

If you really think you may have FMS, then go with your gut. Go to the bookstore and buy some books about it, if you haven't already. Any book authored by Devin Starlanyl will be a good one.

Dr's can really help or really hurt FMS patients. There are still many who don't believe FMS exists. Just getting a diagnosis can drag on for months or years.

My fiance was diagnosed at the Fibromyalgia & Fatigue Center in Dallas. He had been to at least 5 doctors trying to get some type of diagnosis and relief. It was not a good experience. The first time we went to the FFC, he was diagnosed right there on the spot.

When you call to make an appt with a new dr, ask them how they feel about FMS-sometimes you can get a good feel by the response of the person who answers the phone. If that person doesn't know, ask to speak to a nurse.

[PlateletGal]

... and definitely have a lyme test. But I must warn you that lyme testing is often unreliable. The preferred lab for lyme testing (and I often see the lyme patients in MedHelp in the lyme forum talk about it) is:

Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/)

Your insurance may or may not cover testing.... that is the only challenge.

[PlateletGal]

If you know you aren't depressed..... then ignore these physicians and consider firing them. If you do have some signs of depression (which can go along with being ill and being ignored by the medical community), then consider getting counseling to help you with your depression symptoms. At least this way, your counselor can help decide if you are so depressed that your symptoms are due to depression.

Fibromyaliga is not genetic. However, the majority of fibromyalgia patients are testing positive for pathogens... including mycoplasma infections (L-form bacteria). And the evidence is mounting that Th1 diseases are communicable. If you have a bacterial infection, this can be spread to people that you are close to. I believe this is why researchers/physicians frequently see entire families who are chronically ill.  I know that there was a study done in Europe on patients in a hospital who received blood from donors who had CFS. Apparently all of the patients had CFS symptoms months later.

So this is my .002 cents worth on the subject. For additional information, you can check out:


http://www.immed.org/illness/fatigue_illness_research.html


Also, to find a physician in your area who frequently diagnoses and treats fibromyalgia (or CFS), consider googling, "Co Cure's Good Doctor List"

Best,

~PlateletGal