http://en.wikipedia.org/wiki/Fibromyalgia Under neuro-immunoendocrine disorder, it discusses Substance P, I am not a doctor, or scientist but it discusses it.
Anna, you will find that 'google and Ben's Friends will be your greatest source of info! We share so much info, but only totally understand a fraction!
thank you so much. I feel like a kid learning stuff. It's all so foreign to me. I thought I knew a little about medicine having studied a little and having so many things go haywire in my body after trauma.
Thank you so much for your help. I'm not a newbie to pain and most of us have a lengthy history of other ailments, but I'm just starting to learn about fibro because frankly I've put it off until now because I thought all the other stuff was more pressing. Now that it is banging me in the head I'd better pay attention and read as much as I can.
SK, if fibro patients have 3x the substance P in their spinal fluid, does this mean that this could be a definitive “test” for fibro in the future? I’m so hoping for some kind of lab test which gives us a positive or negative result.
Renie,
A suggestion is Topamax as an alternative to Lyrica or Neurontin. Topamax has to be gradually increased. It can cause weight loss - a regular internist might not know about Topamax for fibro but a neurologist would know for sure so maybe it is worth a try.
Interesting you mention your arms. I was noticing a rapid weight gain/swelling in my arms which look like sausages!
xx
Sunny
Yep, the neurologist tested for that and bunch of other stuff. Not. But thanks for letting me know. Not UTI either. After about a week on Lyrica I had to stop because I knew it was a reaction and got hives too. The worst was the eyes swelling shut and the pain. I've had Orbital Pseudo Tumor of left eye after low back injury and it's flared up off and on and it's really horrible.
what is topamax for? Neurontin didn't do anything. like I said now on the steroids again. Why do I feel best when on them? Although the side effects aren't good esp me being a diabetic now.
Thanks Petunia Girl. I don't think I could handle any more sweating or hot flashes than I am. When I chose to go off HRT I was miserable. I went back to Dr and they increased and it didn't help... My new dr an internist tells me he has patients in their 90's with hot flashes. OH JOY. However, I've found if I eat too much and my Blood sugar goes up rapidly or drops rapidly it causes me to perspire. Or should I say, "Glisten" substantially. I was taught ladies don't sweat they glisten! Ha, those people never saw my hair produce rain!
I am extremely new here but feel so good with all the information and help I'm getting. Thanks so much for being here.
I guess if you are willing to have a spinal tap. I'll pass personally!
I just added a new post entitled ' A vicious cycle', it better explains the substance P and it describes Fibro better than anything I have read thus far. Of course some of the medical terms are quite lofty, I tried to add definitions. Hope it makes more sense!
Hey, we are glad to have you!
Yes mine was caused by whiplash, but the other persons insurance company obviously didn't want to cough up, and could not find medical support to prove it. If I can get more eveidence I want to open up the claim again because I was totally ripped off regarding compensation.
Yes, gabapentin and amitryptiline together will pile on 20 pounds without the pleasure of chocolate. So I dumped the gabapentin. Not a great drug anyway is it. I've got to see pain mgmt on the 4th, next tuesday, and will find out because I need something (s).
Bump to front page