Nursing and Fibromyalgia

Moogie · Aug 9, 2009

Just came across this thread. I was diagnosed with FM in June but have had symptoms for at least the past fifteen years. Am glad to have a diagnosis---it explains a lot. I am also glad to read other nurses' stories---there's a lot of wisdom on this thread and it's good to feel so not alone.

Started on gabapentin, but had some problems with feeling depressed and decreased libido. Switched to Lyrica and the pain seems worse---plus I have the appetite of a farmhand, so I'm gaining weight. On the other hand, I have fewer problems with fibro fog with Lyrica than with gabapentin. I realize we can't give medical advice here, but it is okay to ask for anyone to relate his/her experiences with gabapentin and/or Lyrica? I am going to talk with my practitioner on Monday---maybe either increase the Lyrica or go back to gabapentin.

I'm having a real tough weekend---a lot of pain and tremendous fatigue---yet when I go to bed at night, I'm so uncomfortable I can't sleep. My neck hurts, my feet hurt, my back hurts, my skin hurts. This last week was extraordinarily stressful---making big decisions about school and employment---so I sort of expected that I might "crash" over the weekend. Do others experience this sort of thing as well?

I refuse to let FM get me down and I will have a happy, fulfilling life and career. I just wish I wasn't having such a bad weekend.

Thanks for any insight and support.

tpopa · Oct 5, 2009

I know how you feel! I have lost a lot of things but found God and I know I can make it through! God Bless You!

dscrn · Oct 5, 2009

i have fibro and have had it for years, i haven't had to much trouble with it until the last few weeks . last night i had a horrible flare up and was in alot of pain. i didn't sleep a wink... i took motrin and a muscle relaxer and amytripline ( excuse my spelling ) and i had some lortab from an old foot injury and took one and nothing helped. i need to go to the doctor..
i am a RN and work those long 12 hour shifts on my feet and it kills me.
last night my knees . hips. elbows wrists everything hurt , i was so stiff and sore... and i am exhausted today luckily i didn't have to work today,
has anyone tried lyrica ? i wondered how it worked i am thinking of asking for a script for it...
i had lyme diease as a child and i think it brought the fibro on , although i just didn't link them together until recently.
thank you all for your posts. i love reading them

I have both FMS and CFIDS...took me over 6 years to get proper dx. I have been on Lyrica for a number of years-has helped to some extent. Try to get as much rest as you can-easier said than done while working 12 hr shifts! I also find that heat or ice, depending on what my body decides it likes, is good for intense flare ups.

I wish you well...:heartbeat

dscrn · Oct 5, 2009

I have recently been diagnosed with Fibromyalgia Syndrome. I know a lot of you are very judgemental about FMS, but hear me out. I have suffered for at least the last 7 years from chronic pain and exhaustion (and worked more than full time as a CNA). I have been to countless doctors, none of whom (until now) could find anything wrong with me (according to labs/x-ray's etc...).
I, know only too well the "but you look fine to me" reaction of co-workers...and yet, if a pt came in with fibro. the same staff were most concerned. Hang in there. Try to eat as naturally as you can-watch "empty" carbs...they really do seem to increase intensity of pain and fatigue,
For the past several years I have been treated by nurses and doctors as a drug seeker, and an attention whore. I know the pain of being ignored by you (you know who you are), because you don't think I look like anything is wrong with me...
See, I am only 25 years old. Do you know how hard it is to get someone to believe that you are in pain when you are 17 to 25 years old?
I just want the judgemental nurses out there to know that this pain is VERY real. This job is not easy on our bodies, and someone with FMS takes a double hit...
So please think twice before you judge another persons pain. :)

Know the co-worker reaction too well. Hang in there. Try to eat as heathfully as you can-and watch sugar intake-really does seem to add to inflammation

dscrn · Oct 5, 2009

here is a great article explaining fibromyalgia:
further legitimization of fibromyalgia as a true medical condition
"sciencedaily (june 25, 2007)-fibromyalgia, a chronic, widespread pain in muscles and soft tissues accompanied by fatigue, is a fairly common condition that does not manifest any structural damage in an organ. twenty-five years ago, muhammad b. yunus, md, and colleagues published the first controlled study of the clinical characteristics of fibromyalgia syndrome.
(i highlighted the above comment. i think this is one reason many people refuse to be open minded to this condition. i imagine people saying to themselves, "i don't see anything wrong on the labs and x-rays...you're fine, take some motrin and get back to work!"....and the people that blame it purely on psychological conditions and/or stereo-type fibromyalgia as a malady that only, "fat, depressed, females". get)
"dr. yunus describes 13 separate conditions that are related to central sensitization (cs), where the central nervous system (spinal cord and brain) becomes extremely sensitized on certain parts of the body, so that even mild pressure or touch would cause much pain. such hypersensitivity may also be associated with other symptoms such as poor sleep and fatigue. according to dr. yunus, "css are the most common diseases that are based on real neurochemical pathology and cause real pain and suffering."

--------
more and more research is showing that fibromyalgia is a neurological disorder. it is currently not listed as one, but i'm sure it will be within the next year. if you really don't understand what neurological disorders are, go here for a very easy explanation:
neurology.
i find that the more educated people become, the less judgmental they become as a result.

good post...i had a neuropsychologisttell me that there was no such thing as fibro-guess he hasn't done much research in the last 20yrs or so:banghead:

dscrn · Oct 5, 2009

I have been an ED nurse for many years and I have to tell you... The majority of doctors and nurses that I have worked with, laugh when they see the word "Fibromyalgia" in the pt's history.
I don't know if it is real or not; I haven't researched it. I do feel that there probably are people that have been wrongly diagnosed.
This may sound wrong, but my advice for people who have Fibromyalgia and need to visit the ED for something unrelated is to not include it in your history. In many cases, you will be taken more seriously.

Thanks for your honesty. I have seen more than a few eyes roll when I mention this disorder-but not giving a full hx can be problematic. Just makes having fibro all the more frustrating! Docs need to check with diagnostic codes there IS one for fibromyalgia. If one is not in pain on a daily basis, it is hard to imagine what an injury...MORE PAIN on top of that feels like. Sure that there are many who roll into the ER who would be willing to agree. Docs might want to think twice before prescribing Levaquin, Avelox to someone with fibro-tendonitis is one of the major side effects to look for.

Heogog53 · Oct 5, 2009

I've been diagnosised since 1995. Of course, the actual time I've had it has been much longer.

Here's my problem. I was working, in good shape, at a good weight, walking the dog at least seceral miles a day, etc, when in 2006, a patient fell on me. I felt something give in my back and since then, I've been in terrible pain, am in awful shape, have gained a lot of weight and my workman's comp doc certainly didn't help. The first time I took off time for W/C, I had to beg him for PT. He didn't give me enough time....now, after all this time, I'm in worse shape and terrific pain. He says that I'm complicated and that he thinks that the back pain isn't really that big a deal, it's everything else that's wrong with me that is making it a big deal..i.e...Fibromyalgia and CFIDS.

I have recently been "released " by my department, to do whatever the hospital wants me to do. Right now, I'm a file clerk in, of all places, the Workman's Comp department. I have no time restriction- 40 hours a week, just lifting restrictions(10 pounds), and yet, in my first week as a file clerk, I had to miss a day because of pain. I'm very frightened that this institution is now looking to get rid of me ASAP.

I'm hanging on here by my finger tips, absolutely certain that they are just waiting for me to have enough absences in a row to terminate me. I've been looking for more sedantary work in the hospital system( I really do like the institution), but the job requirements, such as five years experience in chart review or case management with certification scare me. Plus one of my nurse managers says that no one in the hospital will take me since I am under W/C, still.....and I would like to work at that institution- I'm almost 57 and have very little in my retirement accounts, especially after the beating we all took in the last two years.

BTW- a brain study was done of FM'ers which showed that there are changes in a lot of places in the brain, close to or related to the limbic system as well as changes in the grey matter of the brain. Now that scares me a good bit too.....but it's beginning to prove that while it may all be"in our heads", it's a realllllllll "part of our heads!"

Good luck to my fellow sufferers! Wishes for improvemen for all of you.

ruaalien2 · Oct 5, 2009

I'm 24. I was diagnosed with JRA when I was 13. I have had lumbar spine surgery as well as 2 surgeries on my right ankle. And I'm still having ankle problems.

I have a doctor who is convinced I have fibro. Truthfully, I probably have a mild form of it. I also have all 5 risk factors for it. My doctor tried me on Lyrica but all it did was make me feel like I was hungover. I'm not at a point that I'm willing to seriously start looking for a daily med but I'm aware that time might come in the near future.

I know what it's like to try and get an adult (forget about doctors!) that I'm in real pain and I'm not just looking for drugs. I think that is why I'm so against taking drugs no matter how much pain I'm in, it takes a lot for me to break down and take a painkiller.

I wish adults, and doctors in general, were more willing to listen to us young people when we were in pain. It would make things a lot easier for us. It's one of the reasons why I want to go into peds but more specifically young adults at that transition stage between being kids and being adults, I want them (and their families!) to know that someone really does believe them and is there for them.

OneHippieChick · Mar 24, 2010

I was diagnosed with Systemic Lupus about 25 years ago. Though my kidneys have always been a problem, I'm now living with Stage III renal disease/renal failure. I have had chronic pain for years in my hips and upper back and my rheumy finally diagnosed me with Fibromyalgia after determining this wasn't Lupus related. I'm at the point where I no longer care if anyone believes fibro is "real" or "in my head". I know it's real, I know it's painful, and I know the other problems associated with it (skin painful when touched, sensitivity to light, sensitivity to noise, fatigue, muscle pain and inflammation, etc.) are real too because I and thousands of others are feeling it/have felt it. I'm quite sure I've had Fibro for many years though I've only been diagnosed within the last year and a half. I'm not a "drug seeker", "fat", or "lazy", as many assume those of us afflicted are. My lupus has been fairly stable for the last 10 years, but my fibromyalgia has given me a whole bunch of problems to deal with. I am also an RN and have worked as a floor nurse in a hospital for the last 6+ years.

I suppose this post seems "angry", and I apologize for that, but I guess I am somewhat angry. When I was first diagnosed with lupus, it too was regarded as one of those "all in your head" ailments. If people couldn't see it, if you weren't obviously crippled from it, like polio for example, then it didn't exist. When I was badly flaring and on disability for about 3 years, people actually left nasty notes on my windshield, threatening to 'turn (me) in to authorities', when I would go to the grocery store. Now they treat people with Fibromyalgia and Chronic Fatigue the same way. So much ignorance exists regarding these diseases, particularly among health care providers. It's sad that anyone should have to hide the fact that they have Fibromyalgia when they go to the ED, in order to be taken seriously. What does that say for our health care providers?

dscrn · Mar 24, 2010

I was diagnosed with Systemic Lupus about 25 years ago. Though my kidneys have always been a problem, I'm now living with Stage III renal disease/renal failure. I have had chronic pain for years in my hips and upper back and my rheumy finally diagnosed me with Fibromyalgia after determining this wasn't Lupus related. I'm at the point where I no longer care if anyone believes fibro is "real" or "in my head". I know it's real, I know it's painful, and I know the other problems associated with it (skin painful when touched, sensitivity to light, sensitivity to noise, fatigue, muscle pain and inflammation, etc.) are real too because I and thousands of others are feeling it/have felt it. I'm quite sure I've had Fibro for many years though I've only been diagnosed within the last year and a half. I'm not a "drug seeker", "fat", or "lazy", as many assume those of us afflicted are. My lupus has been fairly stable for the last 10 years, but my fibromyalgia has given me a whole bunch of problems to deal with. I am also an RN and have worked as a floor nurse in a hospital for the last 6+ years.
I suppose this post seems "angry", and I apologize for that, but I guess I am somewhat angry. When I was first diagnosed with lupus, it too was regarded as one of those "all in your head" ailments. If people couldn't see it, if you weren't obviously crippled from it, like polio for example, then it didn't exist. When I was badly flaring and on disability for about 3 years, people actually left nasty notes on my windshield, threatening to 'turn (me) in to authorities', when I would go to the grocery store. Now they treat people with Fibromyalgia and Chronic Fatigue the same way. So much ignorance exists regarding these diseases, particularly among health care providers. It's sad that anyone should have to hide the fact that they have Fibromyalgia when they go to the ED, in order to be taken seriously. What does that say for our health care providers?[/quot
Anyone that has been dealing with a multi headed ragon has a right to be angry...I think that sometimes anger and raw nerve are all we have to go on. My coworkers were mostly unsympathetic...and yet, it we had a pt with a co dx of fibro or cfs, they were most concerned. I am guilty of listing these dx's towards the end of my list-if only for the raised eyes I have experienced over the years,,,as far as being in our heads,,,so are cva's, and they can sure be incapacitating, also!!

dscrn · Mar 24, 2010

Dealing with fibro is a lot of trying of different treatments, medication, alternative therapy. I couldn;t agree more that it is all an exhausting, drawn=out time. I know that added stress, over exertion can really cause a nasty increase in symptoms. Keep on hanging in, and consider adding additional meds..Lyrica has helped many, in combo with other meds. I have really gotten past that "oh, that doesn't exist" attitude..

Heogog53 · Mar 25, 2010

Ah yes, the invisible disease syndrome. I understand the rage, the tears, the wanting to tear peoples' heads off- and the little old ladies who still(because I don't look that old nor that crippled) who mouth bad words at me when I take the Crip Parking. Hell, old ladies, I sure didn't wish to have extremely poor health to fall upon me in such large quantities when I was in Kindergarden! Cheese and crackers.

As to the ER laughing when someone came in with a Dx of FM- well, the OR is the same. When the circulator goes out to interview the patient and comes back with a list of "drug allergies" as long as my arm, there's always someone who says- "Hmmph! A drug seeker! Got FM by any chance?""

What's worse is when you end up in the ER in tremendous pain(I had peritonitis and a few surgeries because of that, plus a couple paralytic ileuses(?)) and tell the nurse whose admitting you that you are in awful pain and please, please, please, is there any chance of getting some IV dilaudid because it is the only medication that works when you get into this much pain. INSTANT shutdown of pleasant nurse; battle ax, on the look out for drug seeking behavior, etc, etc starts just like the lights on a cop car light up. Of course, once you prove you have a paralytic ileus by projectile vomiting all over the small room they've put you in and you still have a RIGID belly, they get the idea that you aren't just there "for the drugs". :eek:

The worst part is when you go to the hospital where you had all the surgeries and complications and they ask you your entire history over and over again- why don't they just get my medical records? I tell them where, when and who did my surgery, so they'll call my doc, but OMG it seems like hours.

And bless 'em, the folks at work get tired of you being tired all the time, too. They can't help resenting you and you can't help them by showing up more often. But you have to work! My retirement 401-k has $12.000 grand in it and that's all there is. What freaking retirement?

sorry to vent- my world hasn't been either too happy or kind in the nursing world.

sigh...