Is this REALLY Fibromyalgia?

[Rick2004]

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!!

[CCF-Neuro-M.D.-CS]

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.

[jayzee]

The blood tests coming back clean don't really rule out many of the neurological problems.  They may rule out some types of cancer.  For Lupus a CBC test may give an indication, but more specific further tests must be done.  Lymes doesn't usually show any abnormalities on a CBC test.  ALthough I have read that in almost 90% of the people the "seg" portion of the test is slightly higher.  As for MS and ALS showing on a blood test I am not sure.

[mls2go]

Hi Rick, I've had Fibrmyalgia since I was 37 years old.  I am now 51. It is a connective tissue disease and can leave your muscles feeling sore and very painful and change your lifestyle completely if gone unchecked and unmanaged.  Fibromyalgia has been very difficult to diagnose over the last 20 years. The only clear way to diagnose it right now is to do the "Tender Points" check, but there's a catch here too.  See, there are supposed to be 18 points on your body the doctor has to press for soreness in order to conclusively diagnose for Fibromyalgia.  If you test positive for something like 10 to 14 points, then the chances you have Fibromyalgia are quite high.  However, you must take other tests to rule out Lupus, MS and Lyme Disease. I cannot urg you enough to get the proper diagnosis as Fibromyalgia can be just as dibilitating as MS and the other diseases mentioned above.

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

[jayzee]

I have a friend who was diagnosised with Fibromyalgia about 7 years ago.  Her main symptoms are the sore muscles all over, and the extreme fatigue.  She can only work part-time now because in the late afternoon she suffers from extreme fatigue.  I am not sure if the symptoms are the same in everyone, but Rick2004, you didn't mention any fatigue in your symptoms.  How about joint pain?  The jaw pops, tingling in hands and feet, twitching, and dry eyes can be a number of things.  Lymes, and Sjogren Syndrome come to mind.  Sjogren's is like Fibromyalgia, it is not very common in males but does occur.

[JMC - Missouri]

I think you should seriously consider the possibility of an infectious disease. Ticks carry a large number of diseases that can cause problems which range from mild to fatal. Very few doctors, including those specializing in Infectious Diseases, are very knowledgeable of the dangers of these diseases, the effects they have and how to properly treat them. In fact, for these very reasons the treatment of tick transmitted diseases are still very crude and researchers have a long way to go in finding the best treatments.

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.

[Go Figure !]

Hi, I am a 23-year old male. I too was told that I had Fibromyalgia about eighteen months ago having gone to see my General Practictioner and a Rheumotologist a couple of times complaining of sporadic pain in my muscles and joints. Both of them ran a succession of blood, urine and x-rays tests which all showed up negative. Since then I have developed tingling and twitching muscles all over my body as well as the pain. Recently my hands have become very numb and stiff perticulurly my right hand. Today it is so bad that I can barely use the hand. Sometimes if have been gripping onto something or lifting something heavy my hand also shakes very badly. Looking at the symptoms of the other diseases that have been mentioned here I don't think I have any of them, but I have no fatigue symtoms and I have no trouble sleeping I am wondering have I been diagnosed properly. I have an appointment to see a neurologist and my G.P and my rhueotologist have both said that I should take an anti-depressent called Lexapro to help ease the symptoms. I was on it for a few months last year and my symptoms did improve although they didn't go away and I don't know whether it was the tablets or some other factor that helped. It does seem to be worse in the morning although it can be bad at any point of the day. The symptoms seem to get worse the more anxious I get or if I am talking to strangers or under pressure at work and things like that. I have been told to swim regulurly and to do things like Yoga to help which I am doing. I have also tried complimetary therapies like massages, acupuncture, osteopathy and homeopathy: all to no avail. Does anybody have any comments to make on my symptoms or my diagnosis. Also is there anything else I can do to help myself other then what I am doing and is there any other medication I can take to help.

Any Help would be much Appreciated!

[dawnrenee]

I was diagnosed with fibro about 3 years ago. However not only do I have the exteme pain and fatigue In the last 3 to 6 months I have developed lightheadedness (sometimes so bad that I do not feel comfortable driving.)  Now I am having sweats.  If the room is the least bit stuffy, I get very ill and I break out in a cold sweat which causes chills.  This happens several times a day and night.  It will even wake me up from my sleep(what little I am able to get)  I went off my meds to see if I was having a reaction.  I been off all pain releivers for the last week and I hurt so bad I can not function and the sweats and dizziness is still there.  Are these latest symptoms related to fibro or does the doctor just assume they are?  It seems like every time I go to the doctor, they tie it to stress or fibro.  can anyone give me advise on where I can go and what test should be ran to rule out other things?