Question re: lupus and fibromyalgia

Focker, CRNA · Mar 18, 2006

Know plenty of people with fibromyalgia. None of them have psych problems. Your experience is just that: limited.
Saying people with fibromyalgia often times have psych issues is stereotyping. If you label everyone who has fibromylagia as a psych patient you could miss something really important. Please try to keep an open mind.

It has been made obvious to me from the multiple posts, from several individuals, of their experiences with people with fibromyalgia, even within their own family, that I was justified in each statement I have made. Obviously, pts. with fibromyalgia often do have psych issues. Notice the lack of the words "always" or "all" etc., I am not speaking in absolutes. If you read my posts carefully, especially the second one, you will see that I plainly keep an open mind and I havn't tried to label every pt. with fibromyalgia as a psych patient. I have pointed out what I believe to be a clear pattern among a PORTION of fibromyalgia patients. If you are denying that pattern, then clearly, you are the one missing something really important.

rehab nurse · Mar 18, 2006

hello to everyone~a lively discussion we have here

i have lupus, and for me, it does affect my life on a daily basis. i have been through some scary situations with my kidneys,which seem to be the only organ affected in my situation. but, i am not always suffering with it. it does not cause me pain. i try to eat right, take my vitamins, go to my doc regularly etc.

now what does cause me pain, is my herniated discs in my back. i am currently on medical leave for this. and i have been through all the specialists, etc, in order to finally be sent to a pain clinic and be believed in my c/o pain. i do not volunteer this info to just everyone. the last time i was in the er for an unrelated problem, spinal headache s/p steroid injection gone horribly wrong in my back, i had a lot of people raise their eyebrows when i told them how much oxycontin i take. they had to check that out with my pain doc before i was believed. i hate having to go to the pharmacy for my script filled and get the "look". but finally, i was treated, with non-narcotic meds, for the spinal headache, and spent the night in the hospital. i did have a few nurses who were very nice to me, and i was thankful for that. i do take anti-depressants, because of situational depression. yes, i was abused as a child, and also as a wife. leading to divorce, living single with two small children is no fun thing.

i work just enough to keep my insurance, a couple days a week, scrape by on money, and have a supervisory position now in a place that supports me. as a legitimate pain sufferer, and also with lupus, i hate that their are people out there who fabricate and exaggerate their medical problems to seek attention, because it is experiences with those pts who create the questioning in nurses/doctors when treating legit pts with those problems.

i have, however, in my career, cared for fibromyalgia pts, who had psych issues, andalso turned out to have some type of abuse in their past. these people also had c/o severe pain, which as my pain doctor says, will cause depression if gone untreated/undertreated. this link is interesting to me. it would be intersting to know more about a link between these problems. i also have empathy for those who feel so worthless that they have to have a million medical "problems" to feel important, or gain attention. i wouldn't want to be in that mindset, you know?

ok, i've rambled enough. this is a very interesting thread!

chadash · Mar 18, 2006

That is an interesting point you made. Anyone who has chronic pain will be prone to depression. In fact, I think if pain is chronic your tolerance decreases over time.

I do think there are a number of FM patients whose pain is linked to childhood abuse. Now this is purely anecdotal. (again, wish I had a spell check!) I would go as far as to say it is caused by that sometimes. But, the pt suffers no less because of it.

Depression is debilitating in itself.

chadash · Mar 18, 2006

here is another article: http://www.immunesupport.com/library/showarticle.cfm/ID/1548

And by the way Focker, I found your willingness to risk being honest about your viewpoint very helpful.

Finallyat40 · Mar 18, 2006

and thus far, it has not limited me from doing anything I really want to do....in fact, I completed nursing school in two years...yes, I hurt, yes, I'm tired, but no, i don't give everyone I come into contact with my complicated medical history....for what it's worth, my Rheumatologist is convinced that my having a completely obstructed kidney(by a stone) and a premature birth that threatened my life were the 'traumatic events' that brought this on. Interestingly enough, now, this many years later, my blood testing is showing signs of lupus.

I think that some of the assumptions that people make toward fibromyalgia/lupus has more to do with the "squeaky wheel" syndrome....those that speak up the loudest are the ones that they hear.....thus, the psych assumptions....understand me though....there are many with definite psych symptoms/disorders....if i'd had to navigate through 10 doctors who all told me that my symptoms were in my head, I'd likely have a major psych disorder too....my pain is very real, yes, I take medications for it, yes, there are times that i'd rather stay in bed because it hurts to move, but I rarely choose that.

Jamie

harley007 · Apr 7, 2006

I have an unusual type of auto-immune disorder but for insurance purposes I have been tagged with Fibromyalgia. I do not have psych issues nor do I have a history of abuse. I share my diagnosis with almost nobody. The population in general and even my family tends to think this is a disease for hypochondriacs and drug seekers. As a RN I am afraid to tell anyone at work.

I know this is really difficult, but you have to really push yourself to not let the disease take over your life. You must exercise even it is as simple as walking around the block. We really experience no gain without pain each and every time. My personal motto is the less there is of you then the less there is to hurt. I am not talking skinny – I am 5’4” and a good weight is 144lbs. I just feel better if I weigh less and I seem to find that I exercise easier.

If you need Rx for pain and sleep find a true legitimate neurologist/pain MD. I actually obtained reasonable pain relief and thus a great increase in function. He suggested such things as compounded meds that time release and do not contain Advil or Tylenol. So, I can get my major relief at night with instant relief capsules for daytime breakthough pain. But, I must see him or a PA each month – no called in prescriptions or renewals. The prescription must be signed in a special blue ink, embossed, and printed on their computer or it will not be valid. Why go to all this bother? This type of doctor wants the best for you and him and is therefore doing everything exactly by the book. My meds do not affect me at all and if you met me you would never tell I was taking them but, I never use them while on duty just to be totally sure.

My fondest wish would be for my family or anyone else that doubts this disease to have the delightful treat of having this disease for just a month. Waking up almost every day feeling like you have the flu and knowing you must go to work. You have to plan your life so that you do not over exhaust yourself and thus upset your work schedule. Wishing everyday that you had the energy and pain tolerance of everybody else ….. and then I think what if they had told me I had Lou G. disease or lung cancer? I think I am a very lucky person. I just have to make extra efforts and pain is going to be a part of my life But, I am still here, love my children, love my life as a RN and I cannot remember the last time I called in sick!

LoriAlabamaRN · Apr 7, 2006

I have an unusual type of auto-immune disorder but for insurance purposes I have been tagged with Fibromyalgia. I do not have psych issues nor do I have a history of abuse. I share my diagnosis with almost nobody. The population in general and even my family tends to think this is a disease for hypochondriacs and drug seekers. As a RN I am afraid to tell anyone at work.
I know this is really difficult, but you have to really push yourself to not let the disease take over your life. You must exercise even it is as simple as walking around the block. We really experience no gain without pain each and every time. My personal motto is the less there is of you then the less there is to hurt. I am not talking skinny – I am 5’4” and a good weight is 144lbs. I just feel better if I weigh less and I seem to find that I exercise easier.
If you need Rx for pain and sleep find a true legitimate neurologist/pain MD. I actually obtained reasonable pain relief and thus a great increase in function. He suggested such things as compounded meds that time release and do not contain Advil or Tylenol. So, I can get my major relief at night with instant relief capsules for daytime breakthough pain. But, I must see him or a PA each month – no called in prescriptions or renewals. The prescription must be signed in a special blue ink, embossed, and printed on their computer or it will not be valid. Why go to all this bother? This type of doctor wants the best for you and him and is therefore doing everything exactly by the book. My meds do not affect me at all and if you met me you would never tell I was taking them but, I never use them while on duty just to be totally sure.
My fondest wish would be for my family or anyone else that doubts this disease to have the delightful treat of having this disease for just a month. Waking up almost every day feeling like you have the flu and knowing you must go to work. You have to plan your life so that you do not over exhaust yourself and thus upset your work schedule. Wishing everyday that you had the energy and pain tolerance of everybody else ….. and then I think what if they had told me I had Lou G. disease or lung cancer? I think I am a very lucky person. I just have to make extra efforts and pain is going to be a part of my life But, I am still here, love my children, love my life as a RN and I cannot remember the last time I called in sick!

You sound so much like me. I was diagnosed after a blood test showed antibodies indicative of an auto-immune disorder but further tests ruled our scleroderma, lupus, etc. At first I rejected the fibro/CFS although my symptoms were very similar. There is such a stigma associated with it. I'm not a drugseeker. I have horrible spinal damage from breaking my back in a car accident, and I do take narcotics for it (not at work) but for the fibro I have an amazing doctor (he's in the Atlanta area, anyone can PM me for the info if you are in this situation and near Atlanta) who treats me with Guaifinesin therapy and the total avoidance of salicylates, which has made a very big difference in my pain level.

I do agree that some people use the diagnosis fraudulently, and that they are the real problem. However, test after test have shown that the pain of genuine fibro sufferers is REAL. My pain tolerance is very high, it has had to be in order for me to hold a fulltime job, etc. Last year I broke my left thumb in three places and dislocated it (put it behind the slide while targetshooting with a .45 automatic) and was back to work the next night taking only Aleve for the pain. Trust me, I am not just overreacting to normal aches and pains.

Please don't dismiss people who are suffering from this. It's not fair that we have to pay for the people who are malingering. Imagine if you had joint pains shooting through your limbs every day, muscles that knotted into painful lumps throughout your body, and were unable to sleep because of it. Now imagine that when you try to talk to someone about it you get scoffed at. It's a nightmare. I have never gone to the ER from fibro. I have not told anyone at my place of work. I didn't even tell my own family for years.

And I was not abused as a child, and the only psych condition I have suffered from is depression, which is strongly correlated with fibro because when you hurt constantly and cannot sleep more than an hour or two a night, depression is inevitable.

lorster · Apr 7, 2006

Thank you for all of your feedback. I'm not doubting she had a seizure, because she did, but the reason I ask is because I didn't think having A seizure necessarily constituted a seizure disorder. She went from having one seizure which later became one seizure in which she had an arrest (the cardiac arrest part came later). People can have one seizure for a variety of reasons, sometimes even unknown to doctors, and never have one again.
What I am skeptical about is what her doctor told her. I have had several patients with fibromyalgia and lupus (not necessarily together), but I have never had anyone tell me they were prohibited from working because it might kill them. What they have been told is to maintain a healthy diet, take frequent rest periods, exercise, etc. I just don't know what to think.

Let me educate you a little bit about Lupus and other autoimmune conditions as I have just been diagnosed with rheumatoid arthritis, which is btw, another autoimmune disorder. Lupus is to be taken very seriously. It can end your life early if not taken care of. Often times, people with Lupus and other autoimmune diseases are also diagnosed with fibromyalgia. It is not in their heads and certainly has nothing to do with psych disorders. What the doctor is telling her is that she needs to stay healthy and treat her Lupus, medically and keep her stress to a very minimal so that her disease does not get out of control, chew up her organs, and kill her. Autoimmune diseases are serious and on the rise in the general population and among health care workers. Focker, for being a nurse, you are very insensitive and really need to read up on some of these diseases. You never know...you may one day be hit in the head with one of them and it is no joy ride, believe me. I work full time with RA and have a difficult time but I am a fighter. My manager has Lupus and she struggles every day at work and is on lots of prednisone. Do your homework before just assuming that fibromyalgia is all in someones head, or due to a psych disorder.

sphinx, BSN, RN · Apr 7, 2006

The following was written by a woman with lupus. It gives you an idea what living with the disease is like, and is very true not only with lupus but other autoimmune disorders. I have RA and feel it is pretty "right on". I imagine it might ring true for fibro as well.

http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php#more

gr8rnpjt, RN · Apr 7, 2006

I think it is very rude and narrowminded for a certain group of the posters to insinuate that there are any links between psych issues and dx of lupus/fibromyalgia that are not coincidental.

It angers me that these people keep trying to boost their position by saying, "I said some, not all!".

:nono:

My sister is a chiropractor, she also thinks she knows it all. I was diagnosed some 25 years ago with fibromyalgia, but have had symptoms since I was 17.

Of course, she felt she knew everything and tried to tell me I just needed an adjustment. But as I told her many times, Chiropractic adjustments only make my symptoms worse. Then she tried to tell me that I was just a bored housewife (excuse me, I was working as an RN part time) But of course, she knew it all because she called herself a "doctor".

So fast forward to last summer, I get a call from my sister asking all kinds of questions about fibromyalgia. So I called her back and guess what? She has all symptoms pointing to a dx of fibromyalgia. Then I talk to my mother, seems she has the same symptoms and is just as concerned. (coincidence? I think not, I call it Karma and I hope it happens to anyone else who doubts the reality of fibromyalgia on its own.)

Multicollinearity, BSN, RN · Apr 7, 2006

I think it is very rude and narrowminded for a certain group of the posters to insinuate that there are any links between psych issues and dx of lupus/fibromyalgia that are not coincidental.
It angers me that these people keep trying to boost their position by saying, "I said some, not all!".

It is not rude, it is a fact that the data shows a link between psych issues and fibromyalgia. Nobody said such a thing about lupus. Lupus, no. Fibro, yes. It is true that not all fibro patients have psych issues, but many do. There have been several links in this thread showing such a link with fibro.

This is not about rudeness or etiquette, but rather scientific data.

CHATSDALE · Apr 7, 2006

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

if you have fibro/fatigue problems

1] find if any thing helps you- i depend on vit b and otc pain meds

2] walk, swim any excerise that you can possibly do...

3] maintain a proper weight to the best of your ability

4] ignore those who belittle you for your sx someday they will discover a

dx test...