Possible Fibro?

[redkim]

I am 28 and have Chiari malformation, which I had brain surgery for about 1.5 years ago.  I have had various symptoms for years.  For eight years my right arm has been very painful, I have been to the doctors several times with out a diagnosis.  I am told my pain is complicated.  One DX was Complex Regional Pain Syndrome, but I don’t think I have that.  I saw an ortho doctor recently who told me he couldn’t help me because there was nothing surgical he could see.  A week before that I went to urgent care and the doctor pressed on my head (twice) trying to compress the nerves in my neck (budging discs – which he said wasn’t causing my pain).  Now my left arm/shoulder hurts a lot, and has for two weeks.  It’s hard to sleep at night because both arms hurt so much.  When the pain comes I also get weakness and have to drop my arm to my side.

I also have ongoing chronic pain in my muscles.   My muscles are sore and tight.  Recently they even started to go numb in certain positions.  It hurts behind my knee, to bend my leg’s backwards – like trying to kick my butt.  I can’t come even close to touching my toes.  I have limited range of motion in my arms.  My shoulders are very sore to the touch, always have been…like I need a really good massage or something (but massages hurt waaaayyyy too much). .

I did have blood work, and was low vit D (I need a follow up, as it’s been 12 weeks and I was on a supplement).

Alanine Aminotransferase, 16
Creatine .8
Thyroid Stimulating Hormone .85
Glucose Fasting 85
Sodium 141
Potassium 4.1
Cholride 106
CO2 27
Vit B12 349
Vit D 18

I am going to request follow up blood work.

I am wondering if I could have Fibromyalgia.  I have read that Chiari can mimic fibro, but people with Chiari are also prone to autoimmune diseases/conditions.

I hate being in all this pain, it’s so uncomfortable.  When I try to even exercise (elliptical) my legs feel very heavy and hard to move.  Sometimes when walking I have to walk very slow.  Sometimes I feel like my knee’s will give out.  

Thanks,

[redkim]

Thanks for the response.  I have an appointment with nuero in five weeks.  I have Kaiser, and it always seems difficult to get a referral or treatment.  Most visits consist of being told they don't know what it is or to take motrin, or some other OTC medicine...

I was on Nortriptyline, which helped very little - the side effects were uncomfortable so I stopped taking it.  I have been to internevetional pain, and my doctor is suppose to send me to pain management.  I would of course first like to know what I have as opposed to just treating the symptoms...

I do wish it was easy for us.  At least medhelp gives us an outlet and helps us regain some sanity :)

I should mention in the past I have seen two nuerologists.  One sent me to a headache clinic, with out testing.  The other did some electro test on my right arm for carpel tunnel, which was negative.

[vintagechicken]

So sorry you are having so much pain and suffering.  I wish there was an easy answer, but we are all struggling to find the 'EASY" Button for understanding Fibro and how to deal with it.

Has anyone ever mentioned that you see a Neurologist for your symptoms.  I am certainly not a Dr, but it would seem like a Neurologist would be the next best step in getting some answers to why you are having numbing and pain?

Wishing you the best of luck in finding some relief!