Does anyone with widespread PN
 

developed Fibromyalgia or a chronic fatigue like sydrome. As most know I have bodywide PN, or that's what I had. Now I have what appears to be fibromyalgia.I have every symptom of it,and my neuro wanted me to go see a rheumy because of it.

It has overshadowed my PN pain by far. I have burning muscle pain,tenderpoints,fatigue,fatigue in muscles,and just about everything else involving exhaust in muscles.

OTC pain meds does not even begin to touch this pain.

I have been lurking on the fibro board and found this from the journal of rheumatolgy.
http://www.jrheum.com/subscribers/06/04/827-c.html

The pain and fatigue is very debilitating. I am just wondering if anyone else has developed this as a co-condition and why it may have happened.I now have to go back to GP,and explain this, geez I've fallen apart at the seams.

Count me in for this
 

Awwww Aussie :(
I'm so sorry you are suffering from this. Everything you have listed is something I live with every single day and I have for a long time. I have Fibromyalgia, Rheumatoid Arthritis, Sjogren's and Peripheral Neuropathy. You are right. The pain is a burning terrible pain and it is different from the neuropathy. It involves soreness along with it. My joints are deforming also. I think an appt. with a rheumie as soon as you can get it would be an excellent idea. So many of the autoimmune diseases come with the PN, fatigue, and soreness. And it may not be a co-disease of the PN, .....it may actually be that the autoimmune disease has PN as a co-disease. I remember someone telling me long ago on the old Braintalk Board. It is a little like the chicken and the egg. Hard to tell what came first.

Good luck! Hope you get some relief soon. You may find that you get more relief with something like Aleve.

Billye

Hi Billye
 

I remember when I first read about fibro, I had a hard time believing it. It's amasing me just what mischeif this body can produce.

I don't think we have Aleve over here. How many do you take a day? I am alternating between asprine,paracetomal,& voltaren. I am feeling a bit more alive now then I was this morning. I was so wiped out I could barely hold my head up,and I was amased at how much burning and exhaust I felt in my muscles.

I know I am not unique,and I hope I don't sound as if this has only happened to me and nobody else has gone through this. I know you have had a terrible time Billye and have been in pain. I just am completely amased with this illness. I can really understand why some doctor's do not beleive in it's existence.

May I ask what a rheumy will do for me? Can he offer anything more than a neuro and a GP?

I also for some reason have been thinking that my legs look thinner than ususal. I have lost a few kilos due to diet,and trying to eat healthy,but I for some reason remember my legs being heavier,and now I am thinking that my legs from the knee downwards are much thinner. Maybe I am now also hallucinating that I am getting thinner?

Aussie, I met criteria for fibromyalgia way before I met criteria for neuropathy, and in general, at any point in time, the thing that hurts me most is just about never the "neuropathy" type pain, but rather pain from muscles, tendons, or trigger points.

I've tried a lot of things and read a good bit about this, though not at all recently, and two things have helped me: the first is myofascial body-work--I can't BEGIN to rave enough about how much this helped. The second was aerobic exercise. I've never had much endurance, and couldn't keep this up, but it did help. From what I'd read, those were in general the things that helped.

I did develop neuropathy, and I do have arthritis and disk disease, so it's hard to separate one thing from the other. But nothing has approached bodywork for pain for me, and it's been worth every out-of-pocket penny I've spent. And it was all out-of-pocket.

As we speak, the pain I've had the past few days that bothers me the most is NOT from the surgery, and NOT from the neuropathy (which is worse than usual) but is from my shoulder muscles and neck muscles. I'm pretty sure a visit to my old physical therapist or to Melody's Alan's Dr Theirl, the neuro-chiro, would help me greatly.

The fingertips on my left hand have been having neuropathic pain from the tips to the first joint for a day, pain that's never been there before, and I've been getting sharp stings in both arms. Yet my complaint remains much as it was 20 years ago--muscle pains in my shoulders and neck.

I often wonder if the entire neuropathy thing isn't from spinal arthritis and compression, combined with compression from knots from fibro. I've long decided that nothing will ever be proved, and getting the best bodywork I can for whatever ails at the moment is the best I can do.

Does this sound familiar to you?

Hi LJ
 

Thanks for reply. Can I ask you what your myofacisal bodywork is exactly? How often were you doing it? Did you get any injections? I was seeing a therapist,and on my last visit, I was in extreme pain,and my fibro hit the roof.Now I have pain in all parts of my spine that I didn't have before. It's like a never ending cycle of pain. Spine,fibro,pn,fatigue,chemical sensitivity, etc etc etc...

For some reason, the autoimmune component really seems to hit women hard.

Sounds familiar
 

Liza Jane,
I tend to agree with you. I spent about 10 years in severe fibro pain that was labeled by one doctor after another as fibromyalgia, fibrositis, myofacial, etc. I think it was but a pre-curser to the damage my spine has and is going thru. I know there are so many fields of thought on this subject. But like you, I often wonder if it's the creaks and groans of all the muscles stretching and pulling and cramping as the spine settles.

Aussie,
I don't take Aleve. I'm still taking Indomethacin (prescription anti-inflammatory) until they can get my sed level down. But Aleve is an over the counter anti-inflammatory medicine. It looks as if you are on a regimine of them already. Be sure you take them with a full stomach of food.

Billye

In general
 

This is an interesting thread... I have large fiber PN, lumbar problems, autonomic issues, but have been suggested by several neueros that I have fibro... I was sent to the hot shot rhuemy around here - who - while looking closely at other things and taking more blood at one time then I thought was possible for tests - poopooed the whole fibromyalgia question and said in his profession they referred to it as the "f" word literally (his words) - and didnt believe in it.... and that it was referred pain from other nerves/musles not working right (mainly for me in my back and the back was what needed to be dealth with)... anyone run into this? Is this supposed to be secondary to PN, etc.???? Cause the fatique side of PN, which I know I push to the limit every day - never seems to let up, or the aches.... ?????? Are there quantative tests???????? Or something or help this?:confused:

Well there is an active fibro board here
 

I have lurked around there and there are people who have fibro,but not PN. In my liver cleanse book by Sandra Cabot, it says that fibro is a condition that can be caused by a toxic liver realeasing inflammatory chemicals.

But I have no idea. I think it has to do with my PN. My neuro refered me onwards to a rheumy, so that must mean that he does not have much experience with this, or it's a second condition.

Since the medical community still doesn't seem to agree on the validity of conditions like fibromyalgia,CFS or even chemical sensetivities, I think it's a case by case basis, and one needs to find a doctor who will believe you.

It's like gulf war syndrome in many aspects,as it's a constellation of symptoms
that make you feel crappy, but you can't prove a thing.

myofascial release
 

The bodywork that helped was developed by John Barnes, who has a clinic in Sedona---Therapy on the Rocks. If you can find his website, or that of the clinic, you can either call them for someone near you, or see if he's got a list.

It really helped.

Hi Aussie,

I developed fibromyalgia first (about 13 years ago), and then about eight years later was diagnosed with pernicious anemia, Hashimoto's thyroiditis, and small fiber PN. I know that the PA and the Hashimoto's are autoimmune diseases. Fibro is considered autoimmune by some. I have to guess that the PN is probably autoimmune also, although my neurologist is calling it idiopathic.

The most successful means of fibromyalgia pain relief that I have found is to be sure that I am getting good night time sleep. For me, that has meant taking Trazodone nightly for many years. If I sleep reasonably well, it dampens the pain situation. Regular exercise also makes a huge difference. But that is not easy when one is in pain!

Bogsinger