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

I've got the whole constellation of ailments going on too. I developed Sjogren's syndrome January 1997 and fibromyalgia just two months later. I have no idea which illness is causing the neuropathy in my limbs or if it is a separate problem altogether.

I do suspect, though, that my bodywide nerve pain which is constant (though luckily mostly in the background, like white noise) may be the result of fibromyalgia. I have gotten so used to it that I hardly ever notice it unless it gets better, which it has, briefly, in response to medication on three occasions since 2002. Unfortunately, the pain came roaring back after only a few months each time and quit responding to any meds after that.

One reason you might want to see a rheumatologist: to find out if your fibromyalgia is secondary to an autoimmune disease. If so, you may find that if you can manage the autoimmune disease, the fibromyalgia will improve as a result. Sounds weird, but it's like the fibro "feeds" off of other ailments that cause pain.

If you have chronic myofascial pain, it is a disease in which your muscles develop knots in them. These knots are known as trigger points, and when they are pressed, they will send pain signals traveling to other parts of the body, like when a tight neck muscle shoots pain or numbness into your hand. I manage this with massage in which the therapist physically works the knots out of the muscles so that range of motion is restored.

You can also do self-massage to get rid of trigger points. Try "The Trigger Point Therapy Workbook" by Claire Davies. And to find out more about the relationship of fibromyalgia to chronic myofascial pain, read "Fibromyalgia and Chronic Myofascial Pain" by Devin Starlanyl.

A word on meds. Fibromyalgia in isolation is not generally inflammatory in nature, so stuff like Voltaren might not help a lot. But if you have a concurrent ailment that does cause inflammation (another reason to see a rheumatologist), you'll need to address that.

I take Meloxicam for arthritis cause by Sjogren's. All I can tolerate that really seems to help the fibromyalgia specifically is Baclofen, and I limit its use due to side effects. But there is a huge amount of variation from person to person as to what works for fibromyalgia.

Hope something in here makes sense. Our bodies can be such complicated mazes.

fanfaire
:cool:

Thanks for your reply. I understand. I have tenderspots all over that I often refer to as globs of tissue. When pressed they radiate pain everywhere. Exercise,sleep,& swimming sure helps me alot.

One of my biggest issues is that I don't sleep well enough because I take Beta Blockers. I need the beta blockers because I have a bit of anxiety,HBP, & I also was going tachy.

On the rare occassion in which I get enough "refreshing sleep", I wake up and I feel like I can move mountains. I'm full of energy and I am equal to anything.This is without any regulare pain meds too.

But since most of the time I don't sleep enough, I wake up with headcahes,fatigue,in pain, and the list goes on....

My GP thinks that I need to stay on the BB and I tend to agree for now.

beta blockers
 

Hi Aussie,

I've taken beta blockers for years for heart arrythmias - when I first started on them I took took at night and went from sleeping like a stone to having wild nightmares - finally found out that was a side affect - now I take half in AM and half around 6PM and no more nightmares - worth a try?

Hi Karen
 

I take my meds at 7am,and then again at 3pm. I used to take at 5 or 7pm,and that was entirely too late. From what I hear from so many BB's are well known for causing fatigue and insomnia.

How much BB do you take and what kind?

Aussie
 

Hi - I was originally prescribed 60 mg/day - I was able to get away with 20 mg a day until I got PN - now its up to 40 - and I keep it close by all the time in case of tachy attack - and pop another 20 mg - which will usually stop the tachy in between 15 to 45 minutes.... the less med the better - that stuff keeps your heart from beating faster when it should - as you know - and also makes you dizzy when you stand up....

Aussie Again
 

Sorry - forgot to add - I take Corgard (Nadolol) - they tried calcium channel blockers but they just made me pass out (this is when I was otherwise healthy), so these seem the easiest to tolerate...:) (also, I dont know how bad of attacks you get - but my cardiologist had me get a wrist monitor so I can watch the pulse instead of trying to count - makes it very easy and I just lie flat on the floor until they let up)

Now that I think about it...
 

I was originally put on beta Blockers because my original neuro had put me on a tryciclic which caused palps and tachy.

I then at some point developed sever panic/anxiety which caused the feeling of tachy, so they kept me on the Beta blockers.

I may not even be tachy anymore.

Aussie
 

Trycyclics will do that - thats why I cant try them for PN... but if they cant find any heart issues - maybe best thing to do to ask doc if you can go off them and try something more appropriate for what you are being treated for? I know withouth my beta blockers if I even miss a dose I start getting tachy - so unforutnately I'm stuck with them - but - the less meds the better and ifs theres something that would be more on point for you???????

The only problem I am now having and the reason I got stuck on the Beta Blocker is because it's so fast acting. I have high blood pressure and I need medication. Around 2 pm it starts to crawl up, so what I do is take an extra 50mg of metapropal and problem solved, and I can continue working.

It's cheap and it works fast. 100 50mg pills only costs $11.00

My other BP med is quite dear, and only lasts about a month maybe less and costs $22.00

So the issue is that just like every person with HBP the meds are very effective all day,and my mid afternoon BP starts to rise again. I need to quickly take something to stop it from getting high because as I have discovered I am extremely sensetive to the effects of HBP. I start to panic even.

So I need to speak to someone who really understands BP, and see what the alternative to these nasty BB's is. The BB has destroyed my sleep for the last 2 1/2 years. I cannot continue without sleep.

Aussie
 

Hi, I'm not much here, sorry - I already have low BP so the beta blocker, while essential for heart rythm - has the unfortunate side affect of lowering BP even more.... no generic alternatives for just BP med alone that doesnt have nasty side affects?