Hi. New to board and introduction

[MomwithMS]

Hello. I've been on the MS board and on the Lupus board. (and occasionally on the pain management board).

I was diagnosed with MS about 8 years ago. Last year, I became unable to continue working. I then tested ++ for the Lupus DNA antibodies. After months of uncertainly, my rheumatologist told me two weeks ago that he feels I have rheumatoid arthritis. I began methotrexate treatments two months ago.

Although my joints aren't NEAR as stiff since I've been taking the methotrexate, I am still having symptoms that are unexplained. The fatigue is so unbearable that most days, I can barely function. I've tried provigil - no luck.

I spoke with my PCP about Fibro last week. He completely agreed that I have classic symptoms of it. He is sending me to a Fibro specialist for an eval specifically for fibro.

Anyway, I'm new to your board. I thought I'd introduce myself. I posted once before, but nobody responded I thought I'd try again.

[Beautifulchild]

Hi Mumwithms, welcome to the fibro board. I just thought I'd give a quick reply since you didn't get one last time. Good luck with the fibro specialist.

[jdlfmc]

Hi momwithms, It's really hard chasing the name isn't it, mine began with a spine injury 6 yrs ago and has been a merry-go-round since.
I have several different spine problems and am now seeing a rhuemy for lupus and FM.
There are some really great people here very supportive and informative.
Hope you stick around and make some great friends, I sure have.
Linda

[dazedandconfused10]

Hi mom with ms, I'm pretty new too. The fibro is not and now I have some new stuff going on. Wow I don't know how they would even know the difference. I was scanned for MS years ago and they said no and I think they are right. I was also tested for lupus. I think my issues are more in my spine due to a mva and a neck fracture. Welcome aboard.

[tkgoodspirit]

Hiya MomwithMS!

PAGE ONE: (I did it again guys, my post is too long, I have to split it! Sorry)

I'm so sorry no one replied to your post. Sometimes that happens. If you posted something and it seems like it may have become "buried" simply go to your post and reply to your own post with the words "bumping up" and it will bring your post to the top of the board.

Okay, now, WELCOME! LOL You know I actually think I remember seeing your name on this board, but most likely the PM board. I too post there a lot.

I gotta say, you sure have a lot on your hands. Provigil didn't work for you? I use that and it seems to help, but my rheumy is considering uping the dose. I know there is another stimulant med out there but I can't recall it's name right now. It'll probably come to me about 3:00 a.m.

I want to tell you first that you are very lucky to have a Fibro specialist that you can go see. They are few and far between that is for sure. Most of us here either go to a Rheumy, our regular GP and sometimes a Neuro. So to begin with this kind of specialist, you are very fortunate. A doctor who specializes in Fibro WANTS to treat it and I imagine would be up to date on most the new info out there regarding FM. A lot of us here seem to have to educate our doctors ourselves! Most docs do not want to treat FM, it is a complex condition with so many syptoms that mimic other conditions. There is no blood test for it. The only sure test is a spinal tap to look for something called Substance P. Substance P destroys neurons and in FM patients it is elevated. So an elevation of Substance P causes damage to neurons, it is considered to be toxic to nerve growth factor. Substance P can also be found in tissue neurons but as you can probably guess both of these procedures to determine whether your Substance P level is elevated are pretty radical and rarely done. Also the loss of neurons and the destruction of nerve growth factor causes an immune activation with leads to our neurons to become unstable in the body and in the brain. It is a vicious circle. It has already been proven that the neuro transmitters in our brains donot respond to pain the way "normals" do. During an experiment a FM patient was being given an MRI of the brain while being adminstered small amounts of pain stimuli. Well the results showed the activity in the part of our brains that usually releases the pain fighting neurons to be very small and less active. That is why simple pain to us feels exaggerated. We simply do not have the brain capability to reactivly decrease our reaction and feeling to pain. Also this part of our brain that was built to increase the neurons so that we are able to "fight" off the intense feeling of pain "robs" from the cognitive part of our brains, hence the "fibro fog" also known as "brain fog" in non-Fibromights. Kinda like robbing Peter to pay Paul. That part of our brain steals from our cognitive part to compensate for the lack of pain receptors, which of course leaves the cognitive part missing some "juice". See, complex!

One thing you will notice as you go along, every doctor has their own opinion of FM. What you need to do is listen to them all, figure out what is best for you and follow that regimine. Given your other conditions exercise will most likely be difficult for you, but it is a well known fact that exercise does help FM pain. Be wary of docs who want to treat your FM with a lot of medications. You probably already using a lot of the meds that Fibro patients are. Your muscles are probably already weak from the MS, but you should try to increase your muscle movement and strength however you can. Aqua Therapy is the best. I go to the YMCA, pay my dues and go to the classes that they offer. Much cheaper than going to Aqua Therapy through Physical Therapy. If you can, use a recumbant bicycle. You can set it to the lowest resistance. Recumbants are good because you are leaning back and there is no pressure on your back, shoulders and arms. This is if you still have good use of your legs. And please please talk with your doctor before doing anything I suggest here. I don't know your situation entirely so what I am recommending may not be for you.

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