This was in the info by Tez (Terri our moderator from Lupus) When discussing if your fibro is Secondary of if the cause is unknown.
I personally know that everything is secondary to my Psoriatic Arthritis, including the fibro. these links define substance P and how NIH did massage therapy on their patients and showed improvement in their well being and sleep!
SK, I don't quite understand your first sentence. Isn't the cause unknown for all cases of fibro? Are you saying that it's not known if substance P is involved in primary cases of fibro? I just can't quite make out your meaning.
And I'm not surprised by the massage findings. Worked for me - but can't afford it anymore.
Sorry Pet, I was working backwards, the bottom link as a reply is the initial link to substance P. It is listed along with seratonin, melatonin... they then get to the P. People with fibro have 3 x normal levels in their spinal fluid, this sends too many pain signals to the brain.
Then the 2 catagories of Fibro, the first is Primary, with no known cause. Secondary has a known cause, such as spondylitis, lyme, endometriosis...
Hope that makes more sense.
Two intriguing points. 1. That fibro people have 3 times as much substance P in their spinal fluid. 2. That secondary fibro is caused by other illnesses. I didn't know that other illnesses caused fibro, I just assumed they happened in conjunction with one another.
If you go back to my Rheumatologist's definition of Fibromyalgia, a condition caused by chronic pain. If you take a lab animal, injure it severely, do not treat the pain, in time everywhere you touch the animal it will experience severe pain. This chronic pain changes the brain, you must get to the source of the pain to treat FMS.
They even mention sleep apnea, PTSD, neck injuries, and other factors that seem to be common with Fibro.
Not surprised by the common factors at all. Oh, and I'm going to a sleep doctor finally and getting the belated results of the sleep study.
Did you read my reply to you about your chest and shoulder pains? I'm still very concerned about you, Avenk. I kept hoping I'd see that you'd read my posting, so not sure if you did or not. I do hope you get those pains checked ASAP to rule out a heart attack.
You know, that's what's so weird, Jillian. Some people get the Epstein Barr virus and are okay afterwards, while others go on to get CFS. How is it that the same virus can react so differently in different people? Yes, I suppose it's genetics but still, it's a strange thing, isn't it? You just as easily could have fallen into the other group but for fate and maybe some quirky genetics.
And then developing fibro on top of it...why do fibro and CFS seem like gateway illnesses that oftentimes lead into other illnesses? It seems like once you're vulnerable to one, you become vulnerable to a whole host of others. Why is that?
Yes, I know, imponderables but they are still fascinating questions.
I agree, Pet. I just did that! They allowed me to lay down, no tread mill! Only one shadowed area, and Cardiologist was not concerned, so close enough to be normal! I think mine was just stress or that thing with the ribs, starts with a 'C'. My mind is drawing a total blank! Imagine that!
Ok, I'm new to this info although being diagnosed years ago. I don't understand what is substance P and how does it get in my spinal fluid? Also, is there a test for Epstein Barr? I feel awful right now. I've tried the Gabapentin because the Insurance said so. I got more tired and a stomach ache. Lately the Dr had me on the Lyrica and my face, eyes, fingers etc. swelled and didn't urinate much. I also see that people that have had physical traumas, emotional trauma, and PTSD...which I have or had does this trigger or cause Fibro? I seem to be a such a loss but sure would like to find something that would help with the pain.
My fibro came in 2010, and I had mono in 1992. It is still undetermined if Lyme or another tick disease was introduced in there somewhere.
I swelled up on neurontin as well. Had urination problems and developed a UTI/strep infection. Might want to check into Cymbalta -works for many people.
Yes, there is a blood test for Mono. Might want to ask the dr to test you for Lyme as well as a full blood panel. Of course a check for a UTI as well.
Sorry for brief response, exhausted.
Cosotchondritis (sp?) is the thing with the ribs and it hurts like a B*****
Sunny, thanks for answering my question. I knew this was a side effect of Neurontin, and never thought about it---I have gained a lot of weight in a very short time recently, and I have very bad water retention, that's even moved into my arms. I hardly eat, I watch my salt intake, and I drink a LOT of fluids. But I only urinate maybe twice a day, 4 times if I take a water pill! My PCP was pushing me to a Cardiologist.... but I think I found the answer!
Now, where do I go from here? Lyrica didn't do anything, Neurontin was the only thing I found to help me....
Renie, I have problems with fluid retention and Lyrica, I have to sometimes go off it a day or two, just to get rid of the fluid! I did ask my Doctor about it.
When the neurologist was weaning me off all meds, before I got the PsA dx, I lost all kinds of weight, it was water weight! Of course steroid tabs and injections originally put weight on me that never came off.
Good, glad to know you're getting it checked out! I was pretty darned upset by your symptoms, esp. the feeling of an elephant sitting on your chest. May not be a heart attack but classic symptom of them.
Of course, we fibro people get chest pain too...and it's related to our fibro! But mine didn't feel like what you described, avenk. More like quick little stabs of pain that also felt like they came from the back. Almost felt like they were from where my tenderpoints were.
Avenk, I hope all goes well with you! Please keep us updated on this! I've been thinking about you and this a lot.
Well, I'm glad it wasn't the heart! It's scary when you have those symptoms. So it makes sense to be tested. I know I was. And yup, just fibro. But I'm not complaining this time about it being "nothing" cause I'm GLAD it wasn't the real deal.
Anna, I have read on some sites that trauma and PTSD do trigger fibro. I'm not sure if it's absolutely been established or not. But there does seem to be a goodly amount of evidence suggesting they do trigger fibro.
I too wonder how substance P gets into our spinal fluid. Don't know if doctor's know or not.
Like you, I didn't do well on Gabapentin, so I went to Lyrica instead. Am doing pretty well on it but had terrible dizziness with it at first. As others say, Cymbalta is another alternative for Lyrica. Some people sweat excessively on Cymbalta, so be warned. And the pain is the problem, isn't it? It's just hard to find anything that successfully treats the pain. I've found things that help tone it down some but it's still there. I'm not sure if anyone here has found anything that totally controls the pain, sad to say.
I didn't realize you were suffering from this too, SK! Oh, I'm so happy to hear that yours is "just" fibro. For once, it's a good thing to hear! I'm so happy for you! That's great. I don't know why fibro likes to hit us in the chest and ribs and why it mimics heart problems but thank God that most, if not all of us, haven't had heart problems. Whew!