Question re: lupus and fibromyalgia

[KAW1962]

Unless I missed it, I didn't see a forum for neuro nursing, so I'll ask my question and see if any of you have any feedback. I am an ortho nurse, so I don't have much experience in this area.

I know a woman who claims to have a seizure disorder (one seizure greater than 2 years ago and none since then), as well as fibromyalgia and lupus. She tells me that her doctor told her that she would have to make a choice between working and living long enough to see her children grow up. She is not at this time on disability. I do know that people with lupus have periods of remission, but quite frankly, I'm just a little skeptical and would welcome any thoughts or feedback.

[Multicollinearity, BSN, RN]

you can find 'scientific data' to support any theory that you want

CHATS. Oh dear. Nobody has found obscure scientific data to buoy up their own theory here. Much of the scientific data shows a clear link. This is not a menu, pick what you like and discard the rest.

That said, it would indeed be rude to assume that any particular individual with fibro has psych issues as not all do. It's not such a black and white issue you know?

[sphinx, BSN, RN]

CHATS. Oh dear. Nobody has found obscure scientific data to buoy up their own theory here.

But has anyone produced any hard data stating this theory to be true? Legit studies? Please post a link, thanks!

[Multicollinearity, BSN, RN]

But has anyone produced any hard data stating this theory to be true? Legit studies? Please post a link, thanks!

Hi there sphinx. There have been quite a few links in earlier pages of this thread.

[sphinx, BSN, RN]

Hi there sphinx. There have been quite a few links in earlier pages of this thread.

thanks...haven't read the earlier pages in a while, will check them out.

[Aussie19]

I can only speak for myself as a fibromyalgia sufferer. I question a genetic link not psychiatric. My mother has fibro and I believe one of my brothers does as well. The other brother has another autoimmune disorder (Crohn's). I find it a little more than coincidental that we all have autoimmune disorders.

I believe I have had this condition from at least childhood. I can remember wondering why my neck and shoulders hurt so much when I had not done anything that would cause such pain. Because of the tight muscles in my neck and shoulders I also had frequent headaches. I remember the doctor telling my mother when I was ten that I was to young to have tension headaches. Gym class could be almost unbearable especially when I was having a flare up. I was always wondering if anyone else had the kind of pain I did.

Pain is a part of daily life. Frequently I have very visible knots in my muscles. Headaches are still very frequent. I have no significant psych history. I do have bouts of depression usually when I have had trouble sleeping for long periods of time. Lack of adequate sleep/rest will make your pain worse and chronic pain does cause depression. You get caught up in a viscious cycle. I only use OTC pain meds usually ibuprofen. I do not want to take narcotics. I also take a low dose of Effexor not for depression but for the fibromyalgia because it helps decrease the pain although not much. That is all I take for fibro. There are more things that go with fibromyalgia than just pain. Sleep problems are very common as well. Actually the list could go on. I would not wish fibro on my worst enemy.

I liked the story of the woman with lupus who used the spoon theory. That is very true for fibro as well. I have had to learn to limit myself and believe me it has taken along time to get that through my head. I am an RN and work fulltime in an ICF/MR. I very rarely miss work and when I do it is usually because of sinus infections since I get those frequently. I have never been to the ER because of my fibro. I just live with the pain and go on. The part of fibro that bothers me the most are the sleep problems. When the overwhelming fatigue hits I can not function. I can work with the pain but can not fight the fatigue. Sorry this is so long but I want to convey that I do not constantly complain or tell everyone I have fibro. I just ask that no one judge anyone else unless or until they have walked in their shoes. I hope that those people who may be skeptical of people with fibro and other autoimmune disorders never have to suffer with one.