Tuesday, May 15, 2012

Fibromyalgia, It's Not Real/Yes It Is

"Fibromyalgia doesn't exist; it's just a catch-all that doctors use when they don't know what else to tell you."

Do you believe this statement about fibromyalgia (FM)? Some people do. I posted a question on a email list for a professional group I belong to, asking something from people who have FM. I received a lengthy email in response from a colleague I'd never met. Her email outlined for me why FM is not a real illness and doesn't exist, and that she got upset whenever she heard someone saying that they were diagnosed with it. She said it was a phase that she hoped would go away, because telling someone they had FM did more harm than good.

This person pointed out that there are doctors who have written online that it doesn't exist and she had taken the time to find some and then copy and paste their words into the email. Then, after this lengthy email, she told me she had to cut it short because she had to go out.

I thought long and hard before responding. The email had started with something along the lines of "I hope you don't mind dissention," and it ended with something like "I hope I haven't offended you."

I don't mind dissention, as long as we are polite about it, which she was. I didn't think I was offended, but I wasn't sure.

I tried explaining to her through my carefully worded response that anyone can write anything on the Internet. This is one of the great things about the medium, but also one of the great drawbacks. That being said, there is much research going into this illness that has been around for generations, but called by different names. The name "fibromyalgia" was only given recently, as researchers learned more about it.

Physical findings

There are physical findings in people who have FM, such as an elevated level of substance P, a neurotransmitter in the cerebral spinal fluid. Although the illness is far from being solved, this increased level of substance P is one tiny piece of the puzzle that explains why people with FM feel more pain than people who don't have it.

There are many illnesses or health problems that don't have obvious and identifiable causes. Migraines are a good example, as is clinical depression. However, they are accepted as the medical problems that they are. I ended my note stating that I wasn't quite sure why she felt she needed to send me her email as it had nothing to do with the original request. I didn't ask about a debate over FM, I asked if anyone who had FM had any questions that I could use in a project I am working on.

The response

Unfortunately, my response wasn't taken in the way I hoped it was. I am a big believer in discussion, but I don't believe in the "I'm right and you're wrong" approach without discussion. I am perfectly willing to discuss why people may not believe in FM, but I would hope that they would listen to the arguments as to why people do believe it does exist. They don't have to accept them, but some back and forth about the ideas is always appreciated.

This wasn't the case here. Instead, her response was, more or less, "I was afraid you'd react  this way but if thinking  you have something called fibromyalgia makes you feel better, that's ok." Well, I'm very glad she's ok with it. I'm sure I'll sleep better now. :)

I have no intention of engaging with the email writer any further. Perhaps I shouldn't have responded in the first place. I find it interesting that some people - because I know this person isn't alone - feel so strongly about proving that FM isn't real. What is it about the issue that makes them feel this need to evangelize their thoughts about FM?

Living with fibromyalgia

In case you haven't guessed by now, I do have fibromyalgia. I have had it a very long time, but was only diagnosed a little over a year ago. While the diagnosis hasn't changed how I feel physically, because there are no treatments, it has changed how I feel mentally and emotionally. Even though I knew the pain and fatigue was real, now I really know it. I am one of millions of people who have a similar problem. I am not alone. This isn't in my head. I wasn't a hypochondriac all this time. I wasn't looking for attention.

Managing FM means trying to live a healthy lifestyle and I am working on that. I'm trying to exercise despite the pain. I began a Tai Chi course a few weeks ago. My body is not liking it, but I'm sticking it out for the next few weeks. I need to get moving and get my life back.

Because I'm a writer, I've been able to do research and speak to experts on FM for articles I have worked on. I have a lot of information that I haven't yet used, so I am working on something that involves the questions people have about FM.

If you have FM or love someone who does, what questions do you wish had been answered earlier or what questions do you have now that still haven't been answered?

If you leave your questions here, in the comment section, I will be sure to add them to my file.



By the way, earlier this year, I began to participate in a chronic pain/fibromyalgia program offered by a local rehab centre (Fibromyalgia Rehab Program - It's Worth a Try). Unfortunately, it was a bust. Although the people who are part of the program mean well, as far as I was concerned, it was a waste of time and I dropped out after three weeks. So did just about everyone else in the program (there were five of us who started).

For the most part, we sat in a group and listened to the appropriate therapists talk about various issues, sleep, chronic pain, adaptations, etc., but it was all so very basic. There were no questions asked about what we may already have known, so the information wasn't tailored at all. It was just assumed that we knew absolutely nothing, but that wasn't true. The therapists just read from the handouts we received. Although we were encouraged to ask questions, we didn't really have any, because - again - it was all stuff we already knew.

We were only in the gym once a week, for about an hour or so, where the physio gave us a simple program to follow. While this would have been helpful, once a week is not.

So, the intent of the program was good, but as far as I am concerned, I can't see it being very helpful. It needs to be thought out better and presented in a more user-friendly manner.

33 comments:

Sarah said...

I'm a physical therapy student and we recently learned about fibromyalgia. Our textbook (The American College of Sports Medicine Resource Manual for Guidelines for Testing and Prescription) mentioned that many people drop out of the training because it increased their pain levels. Because of this, they are having a hard time running trials to see what levels of exercise, how often and how long are the most beneficial. They did say that because of this, initially they suggest only doing it once or twice a week with the goal of three to four times a week.
Maybe that was the plan for your group.
Regardless, I wanted you to know that we were taught about fibromyalgia and it was never once referred to as something potentially made up. Hopefully that continues to be the trend with people entering the healthcare field.

Marijke Vroomen-Durning said...

Thanks so much for providing your experience Sarah. I'm glad to see that this is being addressed.

I do agree that it's hard to tell how much exercise can be done and it is so easy to stop doing it because it hurts. Frustrating.

Jackie Dishner said...

Hi Marijke,

I just forwarded a link to your blog post to a neighbor of mine who has Fibromyalgia. I think it's helpful for those of us without the illness to understand it more, but I also think it's probably helpful to those who do have it to understand that they are not alone.

Thanks for this.
Jackie

Marijke Vroomen-Durning said...

Thanks Jackie.

Anonymous said...

Well, one question I have is can Fibromyalgia cause or contribute to chronic bursitis/tendonitis in multiple locations? I have, for years been diagnosed with one or the other in virtually every place you can have it. I have been diagnosed with Fibro for about 12 years. My Drs have always said no connection, but I have to wonder....

Anonymous said...

I was diagnosed a little over a year ago with crohn's related spondyloarthropathy and treated with enbrel. This helped my morning pain and stiffness tremendously, but I am a nurse ans work 12 hr shifts, and by the end of my shift I was in excruciating pain again. I can't take pain mess and work because I am really sensitive to them, so I was really beginning to get frustrated. My rheumatologist kept telling me that the pain with activity was not related to my inflammatory arthritis, but offered no other explanation other than it was "mechanical" pain. I could not understand how it wasn't related since it all started about the same time! I finally decided it was time for a change. I saw a new rheumatologist last week, and after a thorough exam, she told me that my residual pain is fibromyalgia. Now, I have been a RN for 17 years, so when I was in nursing school, fibro was discussed, but it was still believed to be a BS diagnosis. Working the ER we see so many people with drug seeking behavior that it gets really frustrating and quite annoying, and we tend to become hard and insensitive. And yes, we are even guilty of rolling our eyes when someone says they have fibromyalgia. Imagine my distress when my Dr told me that is what is wrong with me! I guess God is going to strike me with every illness I have ever doubted the severity of! (kidney stone, bulging disc, fibromyalgia, inflammatory arthritis) OK,OK!!! I get the picture! Needless to say, I have done some furthering of my education, and I am glad to see that things are changing and people are coming to understand that this is real. I can only pray for their sake, that they don't have to be stricken with it to believe it! Good luck, God bless, and may your days be pain free!
Kim H.,RN

Anonymous said...

Hi I was given a diagnosis of FMS last week - more blood work was done just to update my records and I desperately scoured the results for something to be abnormal. That meant it wasn't fibro didn't it!
I found a slightly raised CK and ESR. Hurray its not fibro !! Not so apparently, as a Advanced Nurse Practitioner why did I feel that the diagnosis was any less significant than having a more 'acceptable condition'. Still trying to get my head around it all but as a professional I am a little bit ashamed that I feel this way. Would I react the same if I had been diagnosed with RA or PMS somehow I doubt it.
My patients will hopefully benefit from this personal experience and I will empathise when they describe the pain and lethargy experienced with this condition.

Anonymous said...

It's not that I don't believe in Fibromyalgia. I believe that lame Rheumatologists don't look hard enough to figure out what it is. And because the symptoms are like Lupus and other autoimmune diseases like lupus. Most ppl with lupus are also diagnosed with fibro first. I also think the drug companies make quick money if the Drs. Diagnose it. I was diagnosed with lupus at 23. It had hit my kidneys and I was pretty sick for six months. Then it went into remission. I never saw a rheumatologist, my nephrologist diagnosed it. Then when I came out of remission years later...The rheumatologist said...Oh you have Fibro even before he looked at my file. The dum dum.

Marijke Vroomen-Durning said...

I understand your point but don't agree with the doctors making money with a diagnosis of FM. Most people I know with FM do not take any medications.

LGV said...

I have been living with FM since 2008 and i have had doctors tell me that "its in my head' etc. It was very difficult, recently my pain has worsened to such an extent where i have sleepless nights and get into work groggy and am in a fog all day. I am undergoing theraphy and am planning to take a break soon as it is getting too difficult. Of course it helps to have good friends. People who used to shrug off have finally realized that it is a condition after raising a lot of awareness. On a positive note: FM is an immune system disorder so no longer - in ur heads. You probably can send this link to the email writer that gets upset when people tell that they have FM :)
http://www.imperialvalleynews.com/index.php/news/health/3843-breakthrough-research-reveals-pathway-of-fibromyalgia.html

Bill said...

I am a 56 y/o male. I am/was fairly athletic, but at about age 30, I began to breakdown. Knee, ankle, shoulder, back, and, neck problems plagued me. In spite of this , I played hockey until I was 50. In my mid 30's I was benchpressing 330 lbs. Towards my late 30's I was frequently sick and never felt well. Co-workers thought that I was a hypochondriac. It turns out that I had leukemia, for which I was successfully treated. Injuries that I aquired in my early 30's persisted. I had 2 neck surgeries for disc problems, but still ended up with disabling nerve damage In my right arm. An ankle problem became diagnosed as chronic regional pain syndrome. I went to a pain clinic last week for my ankle pain. The doctor asked me lots of questions. He pressed on various areas of my body, and then told me that I have FM. What? He never looked at my ankle. He told me to get counseling and gave me a script for Savella. I took that for 3 days and then stopped because it caused me to have difficulty urinating. I am still in pain and now feel there is no end to my discomfort. He kind of made me feel that my real pain from my neck and ankle is all in my head.
I tried Lyrica before for nerve pain in my arm. It caused unpleasant side effects and did nothing for my pain.

kel said...

I would love to know something, who coined the the term fibromyalgia and how did the public and the medical community come to the conclusion that fibro was a psychological condition. i can tell you this pain is real i am down for the count right now simply because i went grocery shopping yesterday, will take 2 days to recover, then i will be i the same shape when i try to pick up my house in a few days, come to my house and tell me this is not real

Anonymous said...

I have been diagnosed with FMS and let me tell you...it IS VERY REAL. I pray that the people who think otherwise never develop this disease. I also believe that sooner rather than later, these same people will be eating their words.
Joining a Fibro support group online helped me very much.

Anonymous said...

I was diagnosed with fibro and still think it is a bs diagnosis. I am 35 years old and cant believe how much pain I am in! I have 2 children and rather go through that pain every day than what I experience now. It is pain in all my joints and some swelling in my joints. I don't know how much longer I can work with this pain. I don't want to loose everything!!

Marijke Vroomen-Durning said...

You say the fibromyalgia diagnosis you have is bs, which is your right - but then what explains all the pain? Denying that it is fibro isn't making it go away.

Anonymous said...

I guess I am just scared! I want a test that says yes it is! I just went to my first rheumatologist appointment so hope she comes up with a different diagnosis. My job will not accept a fibromyalgia diagnosis for the days that I just cant work or can not move as well as it seems I should. Is there any website that you recommend for me that can help? I am eating healthy and that does not work!!! How do you all keep working?

Anonymous said...

I am 39 and was diagnosed with Lupus at 30. About 4 years later when my bloodwork showed that I was in remission, I was told that I also have FM. It is extremely difficult to differenciate between the two sometimes. And as if these were not enough, I have also been hit with Hashimoto's as well. I have been told by 2 rheumy's that it is very common for a person who has one autoimmune disease to develop another. I have "Fibro Flares" that seem to be getting progressively worse, it is real. I work in the medical field as well, and the stigma that surrounds this diagnosis is cruel and unfair. I once told a co-worker who has FM ( this was before my diagnosis ) to suck it up and deal with it or just stay home. I thought along the same lines as one of my Dr. Friends, she is a middle aged unhappy woman. Then I was hit with
Lupus, and my whole world changed. When I found out that I also had FM, I was sickened. Here it was, did they think the same thing about me?? No, wait its not FM its
Lupus. WRONG. I deal daily with trying to understand what is happening to me. It is so frustrating. And by the way, I DID apologize to my co-worker, now we lean on each other.

Marijke Vroomen-Durning said...

These are such interesting comments. Thank you for adding your thoughts.

How do we keep working is a great question. Sadly, many with fibromyalgia can't, but equally sadly, many who have a very hard time have no choice but to continue in jobs that - in my opinion - could make things worse. And because all their energy goes into their work, little is left for them to care for themselves properly and they get sicker. Vicious cycle.

In my case, I have turned my very physical profession (nursing) into a physically easier one (writing)' so I set my own hours and work conditions. I know that not everyone is that fortunate, though.

T the last commenter, I am sorry that things occurred as they did, but I am glad that you and your coworker are able to help each other. It takes a big person to admit they were wrong.

lindacrosby said...

I am so thankful that I found your site.I am a member of Kimberly-clark community site where we do little surveys and kinda a focus group.In the discussions section a lady had posted the news findings of April,2012 with the link to your site . She was trying to get the word out to who ever has Fibro and help spread the word. I thanked her and told her my story.I will try and put in a nut shell if I can. I am getting tired and I type with one finger.I have only been on a pc for a couple of years ,did not know nothing about them till a friend gave me one. I do pretty good for self taught, but out of boredom because I am on disability for fibro since 1999.I have had bouts of fibro most of my life and would fight through them,but when i turned 46 ,that was it. by this time i had went through 3 husbands, 2 custody battles and had a good job at 3M.,but was trying to work 12 hr shifts.I got my kids. Had a small farm that was my dream,raising a few beef and my horse. I was 46 I ended up having to sell my farm, quit my job and go on disability.(took 2 years to get)I am now 62 feeling like 90. It has been 14 yrs since i was able to work.I fought through it while at 3M,but the nurse at 3m put me through hell and back.I had a GP doctor who would work with me and when things got real bad he would get me a week or 2 off. Well this nurse knew all about FB cause her friend had it and you had to work thought it you could not give up.Then she sent me to a pain management clinic that basically was just like the one you dropped out of. only difference is the psychiatrist did not feel I had FB but was a alcohol problem instead.

lindacrosby said...



Fibromyalgia
by Linda J about 15 hours ago
OMG, I too have had Fibro my whole life. In the 80's and early 90's I have been told I was an alcoholic,it was in my head, I was lazy,and went through 3
OMG, I too have had Fibro my whole life. In the 80's and early 90's I have been told I was an alcoholic,it was in my head, I was lazy,and went through 3 divorces, 2 child custody fights and had the best job of my life and had to sell my farm and quit my job and go on disability, also was sent to pain management clinic. My son is 42 and has had it since he was 14. We went through hell going to Rochester,Min and being told he was missing a bone the size of a thumb nail between his 4 and 5 vertebrae, wanted to operate,because he was 17 and still considered a juvenile he had to see a pediatrician,she was a Korean doctor and she said You learn to live with it you have what i have and don't you dare let them cut you. BUT she never told us what it was. A chiropractor finally diagnosed him when he was 21. My life was basically over when I turned 46 that is when it really set in and now i am 62 and feel like i am 90 and my hips are in pain from arthritis and am 248 lbs cause i can't walk and exercise. I am taking Cymbala and amitriptyline and I am still in pain have all I can do just to take care of my personal hygiene and try to clean my house.
Mark as Unread

Fibromyalgia
by Linda J about 15 hours ago divorces, 2 child custody fights and had the best job of my life and had to sell my farm and quit my job and go on disability, also was sent to pain management clinic. My son is 42 and has had it since he was 14. We went through hell going to Rocheste

Anonymous said...

Okay so went to rheumatologist. Still no diagnosis so frustrated! This was 2 nd visit and she did not even examine me. She told me that I did not have to worry about what I ate cause there is no proof that it helps. I am going to continue to try and eat right but what Dr would not encourage you to eat right!? she also discouraged me from keeping my pain log. I can barely live life let a lone work. She put me on 2 antibiotic's but nothing but prednisone for pain. Any advice out there? Sed rate was 51 and have a little joint space problem in my neck and right ankle all other xray and blood work were normal. My hands and wrist are the worst now. I would appreciate any advice I can get!

Marijke Vroomen-Durning said...

I would get another opinion. Why did she give you antibiotics and two of them? Do you have an infection? Sounds odd.

Anonymous said...

I was just diagnosed yesterday with Fibromyalgia. I have been to doctors for over 10 years now, pleading for one of them to finally help me. And by the end, I was sent home with the diagnosis that nothing is wrong with me except that I must be depressed. Even though, depression doesn't cause my feet to BURN at the end of the day and hurt like I have broken bones!!

I was diagnosed with Lyme Disease before I ever began having symptoms of Fibromyalgia. I do believe that the Lyme Disease caused me to get Fibromyalgia. At least with the Lyme Disease, a blood test showed that I wasn't "making up" my symptoms.

I can't tell you the humiliation and complete degradation of having the doctor examine me, and being vulnerable to a doctor that just treated me like a crazy person. I've cried for so many years, begging for someone to please help me.

Before I finally found a Rheumalogist, I went to yet another PCP, who is from Duke, who apparently looked in the Duke healthcare system during my visit to see the "notes" on me. He took all about 5 minutes, asked if I felt like committing suicide, asked if I cry everyday, and wanted to put me on medication for depression! He just read the notes from the other doctor in the Duke system about how she thought I was "making up" my symptoms. I told that doctor that I am not depressed, my pain is real, and I'm not taking that medication! I never went back.

Thank God I found that Rheumatologist to help me!

Shashawn Dailey said...

I think I will thank you. Just don't know where to go next! Heals institute is supposed to be the best in Michigan do you recommend a place? Yea she put me on minocycline and plaquenil. CBC showed no infection. These antibiotic's I guess for ra, lupus type stuff. Per her notes I only had 3 of the sensitive areas for fibromyalgia. So what do you think could it still be fibromyalgia? Worked 17 hours so far this week and feel like I could amputate my own legs and hands! ( ok little drama queenish) but how much longer do us pain people have to deal with this pain! I love my job but going to get fired and would not blame them. Since you are a nurse with same issues I will take to heart anything you tell me please help. Thank you for helping and listing to us all ! I have posted a couple other thing prior as anonymous.

Foi Designs said...

Thank you for sharing your story. There are still so many people that believe Fibromyalgia is not real. I am sure many are misdiagnosed but there are still many that do have it and need awareness brought to the rest.

Robyne Larson said...

I just got diagnosed with Fibromyalgia I want answers would like to help

Anonymous said...

Hi, I'm an early 20s undergraduate psychology student and I was diagnosed with Fibro a year ago now, after having been on a rheumatologist referral waiting list for a year. My GP was very helpful as she made sure I had many blood tests over a period of time - if any irregularities were apparent then I might go up the waiting list a little, but any small changes in one were nulled in another.

When I was told when my appointment was, I had a little look at several different rheumatology conditions but without really knowing what I might have.

The rheumatologist who diagnosed me was the head of that hospitals, so I was at least confident he knew what was what but I was surprised that I had something which I thought of as "neurotransmitter screw ups". Fibro was explained to me without the jargon I knew, and chronic pain conditions had been lightly covered in a psychology module. I was prescribed 30mg Duloxetine which I've taken for 6 months, 4 month gap, and when the pain creeped back again to the excruciating pain I went back on it again.

My family have been supportive, as have my close friends and my boyfriend has somehow put up with it (we knew each other when I had the symptoms but not diagnosed 3+ years ago). But a couple of my friends in uni have straight-off said that Fibro isn't a real condition, that it's an umbrella term for something else that'll be wrong. I've only mentioned it twice, as I've never liked to say "ouch" unless it's really causing me problems and I might be walking a little slower (I'm a fast walker).

What I would like to know is what others think when they're faced with those responses, and I found this post really insightful - thank you! What I'm finding hard to work out, though, is exercise and Fibro. From 2006-2010 I used to participate competitively in athletics and hockey, but I would have these horrid pains of fibro! Obv it was without meds as I wasn't diagnosed, but exercise is meant to dissipate symptoms somewhat?

I need to look more into it, but a tutor has mentioned distractions for chronic pain conditions also included playing video games - which is relevant to me, and far more enjoyable than the likes of tai chi.

Anonymous said...

I am a professional health care worker IR/cath lab. I work frequently in the er as well. I have years of experience in dealing with fm patients personally and professionally. And it is horrible. The "patients" not the "disease". I have yet to hear a Dr. of any specialty say fm is a disease.
What concerns me the most is the similarities of the patients i.e. high strung, high stress, history of drug abuse, with an attitude of agree with me or else. Most seem to be completely uninterested in anything other than painkillers. Also, most if not all are on anti-depressants. Mostly, Low dose ssri's. Inevitably they end up on opioids for pain, lortab being the favorite.
It seems eerily similar to the ADHD phenomenon. Highly over diagnosed.
I hate to see someone in pain and I will help in anyway I can. But, I have serious concerns with these lump-sum diseases. I am sure my views and experiences are probably skewed based on the local population. It seems to be a fool-proof way to get opioids.
I am sure that the brilliant scientists in the world will be able to explain and help with this problem eventually.

Marijke Vroomen-Durning said...

Wow. I would not want you looking after me or anyone I care about if you are so prone to making such blanket statements. I can assure you that neither I nor many I know with fibromyalgia fall into your insulting and rather incorrect sweeping generalization of people with the disorder.

I, as many I know, am not on any medications at all, nor do I have a so-called attitude, unless I am dealing with a so-called healthcare professional with an attititude. I do take care of myself and work hard at staying healthy. I also pride myself on giving people the benefit of the doubt. Perhaps that is something you might consider.

lindacrosby said...

Whoa , no wonder we can't get help with fibro when these are the thinking's of health care supposedly professionals.

Amber said...

What an absolutely disgusting comment left by "anonymous". I assure you I am none of the above mentioned terms that you so carelessly threw out. To your dismay, I am quite the opposite. I am a professional, a hard worker, loving wife, and well educated. I don't ask for opioid medications, nor do I want them. But...if you lived even one day in the life of a Fibromyalgia patient, I would bet any amount of money that you would be the first person in line wanting help for chronic pain. Your comment sickens me and the fact that you have any part in our healthcare system is prime example as to where our system is failing. My heart aches for any patient that may come in contact with you during your career.

Anonymous said...

There is much research on fibromyalgia today. Finally. One can just add the word "scholarly" to a Google search to read about small fibre neuropathies, viral-mediated cytokines, substance P and more. It is closely connected with other autoimmune disorders, and there is even a blood test in trials at the moment. Naysayers are just ignorant of the facts. I've had this disease for nearly 30 years and have seen and lived with the indifference and hostility from the healthcare industry. I find it interesting that many who don't "believe" in FM apparently believe in it enough to diagnose it and use the diagnosis code to bill for it, which, if you think about it, is fraud-to diagnose someone with a disease you don't believe they have. They then command you to be well. Worse, those labeled with a big F on their charts are at risk for lack of care, because you are not "allowed" to develop any other medical condition. Chest pain? It's fibro. Spinal disc oozing into your spinal cord? We hate it for you. No, can't be tendinitis, because you have fibro-therefore you are drug seeking. Most of us who have FM avoid telling anyone. So in response to the ER nurse who sees drug-seeking FM patients, do you really think most of us would come to your ER, get humiliated, pay $25k for a shot of dilaudid? Sometimes a person comes to the ER because the very doctor who diagnosed him offers no treatment and he simply can't stand it anymore. He knows it's not an emergency, and the emergency room is the last place he wants to go. It IS the last place he goes. "High strung, anxious, history of drug abuse" should indicate a person with an undertreated chronic illness. You act like FM patients are out there shooting heroin. Trust me, we'd be too tired for that. Did you know that some of us actually pray to get diagnosed with something else just to please people like you? That most of us work full time while chronically ill, cover for other coworkers who call in with migraines or toothaches or menstrual pain, but we don't call in for fear of being labeled as malingering? I hope very soon that FM's root cause is identified and this disease is relabeled so that the stigma of FM, can finally be buried.

Beth said...

I was diagnosed with fibromyalgia a few months ago. I have been an LPN nurse for 13 years. I work as a home health care nurse currently. As I have noted a lot of other nurses and people in Healthcare who have fibro as well I was hoping someone would have ideas of a career in could transition to. I can no longer handle lifting and moving patients even in my "no lifting" job. So many of the patients I see don't have a working lift or even have onever in the home. I am on gabapentin and ibuprofen for my pain issues but sometimes the patients I see put me in a flare-up the next day. I have to take power naps in between patients just to make it through the day. My hips are my problem area. I have hurt for years but just figure don't it came with the job. I am dreading tomorrow as I am being sent to a patient that I know will send me into a flare the following day. I have told them I can't do her but still being sent. And they wonder why good nurses burn out.