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Neurology (Expert Forum)
Is this REALLY Fibromyalgia?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Is this REALLY Fibromyalgia?
by Rick2004, Dec 04, 2003 12:00AM
I am a 27 year old male. Two years ago, I started having muscle twitches all over my body. In addition, almost all of the muscles and tendons in my body were extremely sore. My doctor put me on Zoloft(thinking I had anxiety, which I think was cause by worrying about this!). After six months, I took myself off the drug, because it did not help. Earlier this year, my doctor ran all kinds of blood work, and said that everything looked fine. He thinks that I have Fibromyalgia (based on my tender spots). From what I have read, this is extremely rare for men to get. The muscle aches and pains are always worse in the morning and evenings and especially worse in cold weather. Recently, the doctor put me on Zanaflex, but that does not seem to help either. I have sore spots all over my body: my scalp, ankles, fore arms, knees, thighs, and back all feel sore, as if I just ran a marathon! In addition, after moderate levels of exertion, my arms really begin to shake. I have never been really strong, but I have not noticed any muscle weakness. The muscle twitches still occur all over my body, but not as frequently as they did two years ago. Sometimes, I feel tingling in my hands or feet. Also, I have extremely dry eyes, and my jaw pops (TMJ?). I always wake up in the morning feeling stiff. Finally, I don't know if this matters, but I have been on an antibiotic for the last few years (for acne). My question is, based on the blood tests coming back clean? Does that rule out diseases like Lupus and Lyme disease? Is it possible that this is MS or ALS? What should I do next? Please help!!
Doctor's Answer
by CCF-Neuro-M.D.-CS, Dec 08, 2003 12:00AM
You did not tell me what blood tests were checked, therefore, I can not tell you if Lupus or Lyme was excluded. I would recommend that you have a consult with a neurologist. The neurologist can examine you and determine if further neurologic testing is needed. The symptoms you are describing do not sound like MS or ALS. Tests which may need to be done include sedimentation rate, C- reactive protein, anti-nuclear antibody, Sojgren's antibodies, muscle enzymes, thyroid measures, and Lyme titers. If the neurologist's evaluation is normal, then I would recommend a consultation with a rheumatologist. Good luck.
There are 5 to 6 million people in in the United States alone who suffer from FM and those are the ones who are documented. A large percentage of these documented people are women, but there is that small percentage of men who have it as well.
Fortunately, there is a ton of information on the Web about this disease and a lot of support groups. If this, in fact, is what you have, you can get in touch with an organization called The Fibromyalgia Partnership. Just type it in and press "Go". It'll take you right to the sight. It's an organization that is an excellent resource for an amazing amount of accurate information given by University research groups, Arthitis & Rhuematism Foudation and other Doctors that have devoted their lives in the study of how to manage this disease to keep people out of constant pain. They work with people all over the world connecting them with doctors in their areas and providing exercise tapes and books written by credible docotrs.
I, unfortunately, I contracted it at a time when everyone, including the Medical Profession thought it was all "in my head" and a lot of people like me were medically neglected for years and we are suffering the consequences, but you have a chance to get a line on this and manage it before it gets out of control.
Whatever it turns out to be, be a proactive patient. You have a right to be taken seriously and given the best treatment possible. Find a doctor whose familiar with wahtever you final diagnosis is and make sure he/she listens to how you feel and be partners when it comes to your well being.
Take it really easy on yourself, okay? Best regards
There are a few tick transmitted diseases you should definitely have your sister evaluated for as soon as possible. One of these is Lyme Disease. Testing is extremely unreliable. There are over 100 strains of the disease and the tests are based primarily on the strains found in Lyme, CT. Unfortunately, this is not representative of the rest of the US but has basically be forced upon us. In addtion, the standard tests are very poor due to the fact the main labs doing the testing have been allowed to delete the most common bands which will show up on a Western Blot. This has been done due to the fact that certain groups have a financial interest in developing a vaccine (despite currently saying the disease is easy to diagnose and cure). These strains have been removed from the tests despite the fact only a tiny portion of the US population has ever been vaccinated. In those that were, about 1/3 developed the disease. Avoid the Elisa, it is as accurate as flipping a coin. The only lab I'd recommend is out of CA and it is called Igenex. This lab will test all 32 bands of the Western Blot where most labs only test for about 13.
One tick transmitted disease is Babesia. Many people report feeling like their body is "vibrating". Both Babesia and Lyme cause memory problems. The course of either illness may be slow building or sudden and severe.
You may have never even seen a tick on yourself but that does not mean you could not have been bitten. Approximately less than 50% of those who have been bitten know there was a tick on them. Ticks numb their victims when they bite so you do not feel them on you. You can see less than half of your body and most of the time it is covered by clothing. Plus, if it was a deer tick it could have been almost impossible to see even if it was on exposed skin. They are often only the size of a pin head - very easy to miss. You do not need to be in the woods to pick up a tick. Simply walking across your own lawn or standing under a tree (squirrels and birds carry ticks - ticks hone in on CO2 and will drop out of the branches) is an exposure to ticks. Pets which go outdoors are prime carriers of ticks into homes.
Tick transmitted diseases can be very difficult to eliminate despite current and very inaccurate thinking that they are easily cured. Even if the disease causing pathogen has been destroyed the victim may still have damage caused by the initial infection.
My sister has late stage Lyme Disease. She was hit very hard by the disease very early and came very close to dying because no one would believe that she was so sick - esp from a tick bite in southern Missouri. Her temperature was never high - in fact it is now almost always about 1 to 1.5 degrees below normal.
I would advise that you go to the www.lymenet.org as well as www.lymeinfo.net and read what you can find there that might be helpful.