well done! they need a clapping emot...I applaud you!

Hi, my name is Jen. I was diagnosed in the fall of 2001 when I was 17 and still in high school. I had been sick, I could not turn my neck, and passed out so I went to the Dr. To be tested for a ton of different things. Eventrally I was sent to a Rhematologist at Valley Children's Hospital and was diagnosed with fms after being tested for an array of things including lupus. Basically there are several different pressure points in your body. There are 18 specific spots or tender points that they push on to see if you are sensative in those areas. I personally had increase sensitivity to 17 out of 18 the most he had seen. In the end that Dr. Told me that there was nothing that he could do for me. Five years ago there wasn't as much information about FMS as there is now. Unfortunately, there are no traditional medical tests that can diagnose fms which is why it is nicknamed "the invisible disease".

I am now 22. I have sleep apnea (which is when you stop breathing when you sleep) this stops me from getting into my deep sleep to repair my muscles which leads to fatigue and chronic pain in my joints mostly my knees, hips, and shoulders. I also have ibs (irratible bowl syndrome). I have an mri scheduled for tomorrow because I passed out two months ago and I now have ringing in my ears. All in all, there isn't much medically speaking that can be if you are diagnosed. What I have learned is to make life style adjustments. Getting lots of sleep, eating healthy, exercising, and staying positive. I have my good days and my bad days..

I am here to help. So please feel free to pm me.

Hi Jen. I just found out that I have this dreaded stuff and I'm in the early stages of learning about the diet thing, lack of sleep, and so many other pains and physical and emotional issues. Oddly enough and I'm thankful to the Lord for it, I've always worked out and tried to eat right. That is why it took years and years of having pain before I finally gave in and went to the Dr. I would like to hear of any food do's and dont's or any other help you or anyone can provide. My motto many years ago when I first figured something was wrong was. "Fight Back". It's all you can do.

I have had Fibromyalgia for about 6 years now but only found out about it after seeing many specialists a year ago. I also have a rare form of lupus.
The Fibro has become much worse as I have aged. I have to struggle with the pain daily. I am just attempting to learn how to live with chronic pain and not let this disorder get the best of me. Since learning what I had I was able to pinpoint exactly when the Fibro started and it was right after I had been very ill will the flu and bronchitis. All I can say is educate yourself if you have this disorder and don't give into it.

i am in the process of finding out what's going on with me, i have been having numbness, tingling, burning in my feet, legs , hands, arms cheeks and upper lip and random spot on my body hurt . i don't sleep good, i have headaches and tmj iam nauseated and lightheaded, i wake up tired and stiff every morning. i went to see a neurologist,he took some labs and myCRP,sensitivity is high and my uric acid is 10.8 but i don't have gout.my protein is 8.2 my albumin is 5.2 my calcium is 10.9 .just all over fatigue. the neurolgistis sending me to see a rheumatologist. i am just so tired of being tired.

Hi kmkat,
Glad to hear you are going to see a rheumatologist and hopefully he will diagnosis you. It took me along time to finally find out what was wrong with me. I was tired of being tired and not getting any answers. It can be very frustrating. Just hang in there.

I have been suffering from terrible back pain for many years.Had a motorcycle accident when a man I was dating wanted to show off his "skills".Big Crash going very fast.I was two years getting surgery after surgery on my back and legs.I started to drink everyday because it helped me get thru the day.I stopped in 2001.Found out I had Hep.C.I was fine for several years but started losing weight,sick,listless,apathy,depressed.My pain seemed to double.I lost my job.Couldn't sleep.I f I slept more than 20 min.s I would lock up and had to have help turning over.It seems my hair hurt.
My friend Dana also had Hep C but then found out she had Fribro.She is positive I have it too.We match almost point to point.
I went from the life of the party to having to drag myself out of bed just to eat.My Dr. did put me on Prozac and methadone for the pain awhile back.It has enabled me to at least have a few good hours.
I thot I was going crazy ya'll!!! My heart aches for those that have gone to Dr after Dr knowing darn well something is wrong but being blown off.
I need a chart to take to my Dr to show him just where it hurts.I have one of those Dr.s that pat your head and ignore what your saying.Grrrrrrrrrr

You can download pain charts on the net fill then and take them to doctor.

I've been diagnosed with fibro but have no one to talk to about it. Hope someone can help. . . my bouts with pain & especially muscle weakness seem to come in cycles and they occur after a few days of feeling "off." Like I've got the flu without a fever. The pain, tiredness, headaches then last for several weeks. Is this common? I have doubts that the fibro diagnosis is correct given the attitude of the dr. who diagnosed me.

In 2005 I started having pain issues. While trying to figure out what was wrong with me I found a mass in my breast and was diagnosed with breast cancer. After having a bilateral radical mastectomy I had two rounds of chemo and one of radiation. During my treatments I had some unusual side effects but all cancer patients react differently so I thought nothing of it. After I completed all my treatments, I continued to have problems with widespread pain, headaches, sleep problems, IBS, TMJ and depression. I suffered from neuropathy during my chemotherapy but the doctors assumed that it would stop within 8 months of completing my treatments. After seeing a host of doctors for all of my problems, I was sent to a rheumatologist and he suggested FMS. I'm having trouble finding a doctor who will help me. I have alot of stress in my life as my husband and daughter are ADD and bipolar, and my son is autistic. Does anyone know if there is a way of finding a dr who actually believes in FMS and can help me find some answers?

You have an awful lot on your plate by the sound of things, and stress is particularly bad for Fibromyalgia. My advice is to educate yourself about Fibro as much as you can. When looking on the internet though, try to avoid any sites that are trying to sell you something. There are numerous sites out there giving false info. The best ones are government health sites, and support groups etc.
Unfortunately a lot of doctors don't know much about fibro, so may actually welcome the fact that you know a lot about your own condition. Try to see what the latest research is saying etc. The newest info around now nearly all points to FMS being a disorder of the Central Nervous System.
Find out what treatments are out there and maybe ask your doctor what they think about them.
Write down a list of your symptoms. I found it very hard to tell my doctor, partly because I didn't want to come across as a hyperchondriac, and unfortunately for me talking about my myriad of symptoms used to make me feel that way. But also because I would forget everything I wanted to say as soon as I hit the surgery. fibrofog!
Then I hit on the idea of writing everything down in letter form, and that was met in a really positive way. Something that they can keep in your notes.

This has all worked really well for me, but I think it helps to adopt a certain attitude that you are not trying to tell the doctor his/her business, but just trying to help them understand how it affects you.

While I would not look to any sites advertising books as a place to gather info, I do look up customer reviews for books on the subject. A healthy diet seems to be very helpful.

I had a very good doctor who had a great understanding of fibro, but she left the practice and I changed my next two doctors after she left, before I found someone I was happy with. I don't know if you are in a position to do that, but I wish you the best of luck.

I have only just turnt 30 and 4 years ago was diagnosed with Fibro. I have it through my neck and back. I have almost all the symptoms that go along with it, numbness in arms, cronic pain, irratble bowl, stiffness when sitting or sleeping, constantly pulling muscles, triggerpoints allthrough back, neck and cheast, light headedness. The worse of all is the headcahes. they range from thumping pain at front of head to an intense burning sensation one one side. They are everyday and they drive me nuts. I also get severe dehydration (not sure if that a symptom or not) it gets to a point where my body shakes uncontrollably and I have to skull around 2-3 litres of water to stop it. Have found two probs with having FMS- any new problem I get my doctor automatically puts down to my fibro and I have now devolped a severe anxiety problem.
For those who are undiagnosed, hold in it takes ages to get diagnosed for this and you and everyone will start to think there is nothing wrong with you and you are just a hyperchondriac. After 2 years of constanting testing from neurological to repeat fasting tests and arthritis tests I was fnally diagnosed. Having a name for my problem helped alot. I went to a suport meeting but found everyone there had basically trown their hands up and was waiting to die. Fibro is managable, it takes alot of inner stregth and will power and experimenting with your bodies limits. I also do not take medication, I do it on my own!
If anyone has questions (non medical of corse) I will be happy to help.
DONT LET FMS RULE YOUR LIFE!

My doctor told me that I possibly have the symptoms of FMS. I have been suffering with pain that is getting worse since I was a child. I'm curious to know if anyone else experiences pain and tightening in the feet, ankles, and stiffness in the calves of the legs. I also was a teacher and had to give up my career due to the chronic pain and some confusion, like a fog in my brain. I noticed that when I spoke to my students my tongue would go numb at times making my speech slurr. I had a lot of trouble concentrating and the chronic pain made it very difficult to deal with teaching middle school students. I really do miss them though, but the chronic fatigue and insomnia would not allow me to get back to work anytime soon. I have to be able to give the kids 100% of me as their teacher or I don't feel I should be there. At this point I am working with yoga and trying to eat healthier. I'm losing weight and beginning to become more flexible from the yoga. It has really helped me mentally and physically. The meditation and stretching does take the mind to a more relaxed state, relieving stress and anxiety. Back to my original question, do other people with FMS experience ankle pain mostly when walking where the foot stiffens and so does the back of the calf.

Thanks and I look forward to your answers

Have you been seen by a neurologist?

I have been seen by many doctors in the past, including a neurologist. I had an MRI of my brain a few years ago when the pain was so bad I couldn't get out of bed for a week. I also had a nerve test and nothing showed up. Depending on what the rheumatologist tells me, I will be going back to a different neurologist.

I have a friend who was diagnose with FMS it was 2005 that he was told he has FMS. Presently he is doing great because he had a TOTAL LIFESTYLE CHANGE, he just sleeps well, exercise and eat natural foods, He also goes regularly to the doctor. I'm proud to say he does it all naturally...

Hi everybody - my pain consultant has just given me something great for really bad days - Lidocaine patches. These are stick on patches about 6 inches by 4. You put them on where the pain is rally bad - in my case usually my hips or shoulders - and they slowly release Lidocaine for 12 hours pain relief. They were developed originally for post -herpactic relief (e.g. after shingles) and you General practitioner may well not have heard of them. Well worth seeking out - I can, for instance, sit through a theatre production for the first time in years if I patch my back before I go.