Expert: Suzan Jackson - 6/5/2009

Question
I'm posting in multiple categories because I'm unsure of who to ask. There's a lot to read but its all important... Please help me. My aunt thinks I might have fibromyalgia.

I'm 21. I eat right. I don't do drugs and I drank a total of two weeks after my birthday to get an idea of what everyone's talking about. I eat healthy and walk my dogs two or more times a day totaling 2.5 hours of walking.

Since I was 10 I've been having health issues. I was diagnosed with IBS and a blood sugar problem we'll call Hypoglycemia. Since I was 10 I've been having daily to weekly occurrences of icy cold hands with what feels like to me is a fever at the same time. Along with this I constantly have issues with temperature and get cold all the time. The other thing is that I get this sudden sharp pain almost always starting in my right forearm that then travels throughout my body. This pain feels similar to growing pains and can last a few minutes or hours. I have yet to discover the source of this pain. Also since I was 10 I get a slow drain of energy or an out of no where sudden draining of energy where I turn pale and feel weak. This you might say is my hypoglycemia but I have recently started to think that this might not be the correct diagnoses.


Why do I think this? Because I eat healthy, eating meals doesn't always make me feel better, the doctor was unimpressed with my glucose tolerance test told me to just eat snacks throughout the day but at the time I could barely walk or function. Also 4 months ago I went to the emergency room because I couldn't level out after two days of hell. They did nothing for me but told me to see my doctor. The unstable event lasted a whole week that's 5 days after going to the ER. At my doctor I was told to go on a carefully watched diet of low glycemic index/complex carbohydrates. I followed it perfectly and it was the worst two months (medically) of my life. The whole time I was nauseous, weak, confused ext ext pretty much all the typical symptoms of hypoglycemia but I was on the perfect diet to fix my hypoglycemic issues.

During those two months I started to hate food and my life. The inability to function took me away from everything and the only thing I could do was just lay there watching T.V. hating every minute of every day. I started drinking soda again after 8 years to try to give a quick sugar rush. I also started eating more desserts and hard candies which I also hadn't eaten in 8 years. Putting sugar back into my diet brought me back to where I had been before. Not that I hadn't eaten sugary foods in 8 years I just hadn't had soda, hard candy or fast food.

The problem is, is that things have gotten much worse since my car crash a year ago on May 17-08. I have back spasms now and constant fatigue with full body pain. It wasn't until that doctors visit 4 months ago that I got something for the pain. (I don't like taking pills) About 1 month ago I started working out and walking my dogs everyday. I needed structure in my day and thought that exercise would help the back pain. This I couldn't do without my Tramadol. It doesn't make me feel normal it just alleviates enough tension/pain that I can do more. My pain scale is at a 7-8 without the pills and at about a 6 with them. I'm also supposed to be on muscle relaxers but they make me too sleepy during the day and the effect last too long into midday hours if taken at night. I started up a diet journal about a week ago to see if I could track my symptoms and watch to see if certain foods triggered symptoms. Since then I discovered another alarming symptom which I only experience when sleeping. I never paid attention to it because I was sleeping. At night I wake up with parts or the entire right side of my body (not enough time to get a full spectrum of areas) feeling very heavy, numb and it tingles. Similar to if you slept on your arm wrong and cut off the circulation. But that's not possible with your entire right side of your body going from head to toe while you've been sleeping on your left, is it? I've experienced this with my right arm only, my left arm only, my whole right side and this morning my whole body. This new symptom scares me because my back issues are almost entirely on my right side and spine.

Today is the 4th of June I haven't had my Tramadol since the 25th thanks to a mess up with the doctors. I haven't been able to exercise and might have injured myself more trying to keep my routine for the first few days without it. Not having it has made my days full of pain and stiffness. My sleep was already horrible with it and its now almost nonexistent without it. Throw in stress, constant lifetime headaches that envelops my whole head and neck. Plus frequent urination up to 15 times a day. Put it all together and this is by far the worst I've ever been.

I can't work. I quit college because of these things and have left the house a total of (I'm rounding here) maybe 20 hours in the last 4 months.

Please help

Answer
Dear Quezya -

I'm sorry to hear you've been through such a difficult time recently.

I have had CFS (Chronic Fatigue Syndrome) for over 7 years, but pain has never been an issue for me. I know that fibromyalgia shares some common characteristics with CFS, but I don't know very much about it otherwise.

From what little I know and your description of your history and symptoms, I do think that fibromyalgia (FM) is certainly a possibility that needs to be checked out.

Several things occurred to me as I read your note that I know to be true of CFS and that may also be true of FM...

CFS (and maybe FM?) is often triggered by either an infection or a traumatic event, like the car crash you described.  In addition, both IBS and hypoglycemia are very common parts of CFS for most patients, though of course you could have these conditions on their own.

Here are websites for two organizations for fibromyalgia patients.  Both are reliable and offer extensive information on what FM is, how to diagnosis it, and how to treat it:

http://www.fmaware.org/site/PageServer

http://www.afsafund.org/

I hope that those provide some information for you.

Most of all, though, you need an accurate and complete diagnosis from a doctor.  If your own doctor is unwilling to continue investigating your symptoms until some answers are found, then you need to find another doctor.  I know this can be a difficult thing to do (I saw many, many doctors over a year's time before my illness was accurately diagnosed as CFS), but please don't give up.  Whatever is wrong - whether it is FM or something else - you know that it is severe and that it has changed your life.

When you talk to your own doctor or a new doctor, go in with a written list of EVERY symptom.  Explain exactly how disabled you are in concrete terms.  You'll get the best response if you can be very factual, with plenty of hard facts and data to show how things have changed for you and how this is affecting your life.

Any doctor, no matter what his or her specialty, should ask questions, show interest in finding answers, and run lots of tests to help either confirm or rule out various problems.  There are so many possible causes of chronic pain, and you deserve an accurate diagnosis so that you can get appropriate treatment.  The doctor should order x-rays or CAT scans or MRIs of your back, as well as blood tests to check for various conditions.

If you have trouble finding a doctor who can evaluate you for fibromyalgia, try searching on this state-by-state list of doctors who understand and treat CFS and FM:

http://www.co-cure.org/Good-Doc.htm

But don't just assume it's FM without being tested for other causes of your pain.

Be persistent and you will find answers.

Good luck -

Sue Jackson

www.livewithcfs.blogspot.com