Is it Fibromyalgia/CFS or MS?

[MadisonTaylor]

My story is almost 8 years in the making, so I will try to be as brief as possible!

First "Flare-Up" - July 2002
Became extremely dizzy at work completely out of the blue.  Symptoms over the next 4 months included cloudy/blurry vision, inability to concentrate/focus, severe muscle achiness, weakness in legs (felt as if legs would give out when walking or standing), tingling on right side of face & right arm, shallow breathing & chest tightness, pain around eyes.  I didn't drive for 6 months due to the dizziness and blurred vision.

Symptoms improved about 50-75% over next 3 1/2 years.

Second "Flare-Up" - March 2006
This started the same way - I became extremely dizzy.  Over the next 5 months I experienced the following symptoms: overall weakness (especially legs), felt as if I was going to pass out, intense leg pain that made it hard to walk, numbness/tingling in the front of my head and behind my eyes, blurred vision, cognitive difficulties (hard to talk or find the right words), general feeling of being out of it, extremely stiff leg muscles even though I wasn't exercising them, inability to do anything strenuous, noticed small "electrical shocks" very randomly across my body (felt like little bug bites...would even wake me up at night).

Again, had about 3 years where things were somewhat improved.  However, during this time, I was diagnosed with Hashimoto's Thyroid Disease and began T4 & T3 replacement.  Earlier blood tests did not show Thyroid disease, so I don't believe it was related to the earlier two "flare-ups".

Third "Flare-Up" -  January 2010
Experienced the most intense and frightening migraine-type headache that came on suddenly.  The pain was almost unbearable; however, it just lasted a night.  Not sure if there is any significance to this, but my third flare-up started about 6 weeks later.  Symptoms this time have been more intense and include: very weak hands, wrists, and arms (hard to type and write), pins & needles in my finger tips, weakness in my legs, very stiff legs and shoulders, skin hurts to touch around legs and arms, frequently dropping things, lack of fine motor skills, slight urinary tract infection, burning/numbness in arms and legs, shallow breathing, swollen tongue, dizzy & disoriented, feeling as if someone is pushing down on me (heaviness), difficulty in standing (using counter to hold me up while cooking dinner), numbness in left foot, facial weakness (feels weird to talk), etc.

I am a 34 year old otherwise healthy woman, 125 lbs.  I was a senior manager in a very large corporation, have my MBA, etc...but have completely scaled back in the last year and a half in hopes that my health would get better.  I moved out of the city to a small town, quit my stressful job in favor of a much less stressful position.  I have had 3 MRI's (that have been "normal") over the past 8 years and many blood tests that have shown some increased auto-antibodies, high eosinophils, decreasing RBC, WBC, and platelet counts (although still within range).  My most recent neurologist wrote me off in 5 mintues as probably having Fibromyalgia or CFS, which I could agree with if it weren't for the severe muscle weakness in my arms and hands.  Does anyone here with Fibromyalgia/CFS have debilitating muscle weakness?  I guess I just didn't think that was one of the characteristics.  I would definitely appreciate any comments from others with similar experiences!

[Dont_tick_me_off]

ANYTIME!~ i know what its like!

[MadisonTaylor]

Thank you so much!  I will definitely check out the website and I really appreciate you taking time to help me in my search for answers!

[Dont_tick_me_off]

Hi Madison,

The testing for Lyme is very very controversial.  There are many opinions. My Lyme Literate Dr. said that really all tests are not accurate. Depending on your doctor, any good LLMD will treat you if he feels your symptoms are closest to lyme, he will not relay on lab tests.

Treatments for lyme vary for each patient. All MD’s will treat you with antibiotics. There are many protocols, but some people feel better with natruropathic treatments including exercise.

I have to be honest. The antibiotics can wreak havoc on your body, but I noticed a huge difference. But I cannot stress how important it is to take vitamins and work out regularly. The best treatment for my fatigue is exercise. After 12 weeks of working out regularly my fatigue was at a minimal.

I hope you will read and educate yourself more on Lyme. Canlyme.com is a FANTASTIC website. I wish you all the best. And anytime you need to talk, please do.

Look into articles from others who had/have Lyme, I think you will see your self looking in a mirror.

[MadisonTaylor]

Hmmm...this is very interesting.  I assumed since I had the one Lyme test way back when this started, that was enough.  However, I saw a response on another forum that there are actually 3 different tests for Lyme disease.  Maybe it's time for me to be check for this again.  Just out of curiousity, once you were treated for Lyme, did your symptoms improve drastically?  What is the treatment for Lyme?

Thanks!

Madison

[Dont_tick_me_off]

P.S it took me 7 years to be diagnosed and treated. A very VERY common thing in Lyme. The rash has been proven to only show in approx. 30%. That leaves a whopping 70% that would have no idea they were even bit.

[Dont_tick_me_off]

i'm a believer that CFS and Fibro are caused by the lyme bateria. Plus a ton of more. I was treated for lyme here's my symptoms in case anyone has similar ones

Extreme Fatigue
Muscle Twictches
Pins and Need Sensations
Brain Fog/Confusion/Difficulty Focusing
Vertigo
Eye Vision Problems: Extremely visual Floaters, Visual Snow, Blood Shot eyes, Vision of Flashes/Sparkles.
Headaches/Migranes
Constant Sinus Infections

Tests were run for MS, ALS, Thyroid, diabetes

[Dont_tick_me_off]

ever tested for lyme?

[Primerose48]

Hi there. I feel very bad for you to have all this going on and no concrete answers. I have had fibro for about 3 years (probably longer) but this is when they diagnosed me. One of the systems is joint pain. I have severe joint pain along with the muscle pain. It got so bad that I didn't believe my doctor when she said that I do not have Rheumatoid Arthritis. I had all the systems for RA but none of the test confirmed it. How the joint pain was explained to me, was the fibro is making the muscles very weak around by joints, mine are weak enough that I now walk with a cane and can't work at this time. I hope all the best for you and that you feel much better.

[MadisonTaylor]

Thank you, Kitty.  I actually have seen a couple of rheumatologists over the past several years, and one diagnosed me with fibromyalgia, while the other gave me an inconclusive diagnosis.  I haven't been back to a rheumatologist since the severe hand and arm weakness started (I started seeing a wholistic MD w/ a background in pain management instead); however, per your suggestion, I will probably try to seek out another rheumatologist to validate all of this is only caused by fibromyalgia.  I was concerned that I was developing something else in addition to fibro, since I didn't think the severe weakness was a typical symptom.

[kitty51]

muscle weakness,cramps,having tender spots on your body? to have fm diagnosed you need to see a rhuematologist there are 11 or 18 points on your body that will be very sensitive when they are pin pointed.I cant even find mine but when the doc did it i nearly went through the roof. Similar symptoms does not mean it is fibro or cfs self diagnosis isnt really a good idea,so its in your best interest to a doctor.fibro can be local in one or two places or it can be generalised and be all over your body.so please have it checked out soon.