What do you think of fibromyalgia?

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What do my colleagues here think of fibromyalgia? It's sufferers seem to mainly women. I'm very skeptical about it. Is it a psychological disorder? I don't mean to dis anyone here, please forgive me, but every patient I've ever taken care of with this disorder strikes me as neurotic. Since there is no actual lab test the definitively confirms the diagnosis, I remain suspicious regarding this disorder.

What do you know about this condition?

Specializes in Clinical Documentation Specialist, LTC.

Emergent, I was prescribed Lyrica once but it didn't help me. I had bad side effects from it as well.

Cymbalta is another one that's strongly suggested for fibro. patients. I tried it too and felt like one of the zombies in the Walking Dead series. I could not function at work. I actually sat in front of my computer at work staring at it for hours when I first took it. Flushed it as soon as I got home.

Specializes in Clinical Documentation Specialist, LTC.
LTCNS - I have it too, and can really relate to your symptoms. I was diagnosed with it about 3 years ago. The only med I take for it is Lyrica BID. I've been on the lowest possible dose for almost the whole 3 years - my doc just increased my dose a few weeks ago.

It seems like no matter what I do, even a dentist appt takes it's toll on me. If I'm in the dentist chair for 11/2 to 2 hours, for days after I have an intense ache - legs, arms, ect.

I had to retire a few years ago after having a stroke - there's little chance I could be able to work in my old ER. I'm hoping I can keep controlling my symptoms with just the Lyrica.

Anne

Gentle *HUGS* I pray you can continue to get relief from just Lyrica. Sometimes I think doctors over medicate and make things worse.

I know exactly what you mean about tiring so easily. After a day of work I am literally so exhausted I ache all over and just want to come home and crawl in the bed. And long road trips really do me in. We have to stop at least every hour so I can stretch. It's really frustrating.

Specializes in ICU.
I have fibromyalgia and it is extremely painful. I can assure you it is most definitely not in my head, and I am not an attention seeker looking to use fibromyalgia as an excuse to take sick time or get pity. In fact, I rarely miss work due to fibromyalgia pain, and most of my co-workers have no idea I have it.

I have been through countless tests for conditions such as Lupus, MS and RA (since fibromyalgia tends to mimic those conditions) and have been confirmed to have every single trigger point used to diagnose fibromyalgia. There are days I am in so much pain I can barely get out of bed, but I push on and work full time. I do not take anything for the pain except Tramadol and Ibuprofen. I am not a drug seeker. In fact, most of the drugs I have tried made me feel worse. I would rather be in pain than be non-functional.

Sorry if I come across as defensive, but until a person experiences the very real, sometimes almost unbearable pain of fibromyalgia, that person will not understand what it feels like. Just because someone with fibromyalgia doesn't "look" sick, doesn't mean they are not miserable.

^^^This.

This describes me to a "T".

I have flare ups with hormone changes, stress, and when I don't get enough sleep.

I too have found Tramadol and Aleve or Ibuprofen to be the best pain management, but I try to only use it when I absolutely have to.

The funny thing is I was recently searching for this topic on AN and didn't find anything. I was wondering how nurses with this cope day to day.

Specializes in ICU.
I think it is a poorly defined, poorly explored and thus poorly understood diagnosis. I won't say it doesn't exist. I will say that those I have cared for with it also carry a heavy component of anxiety, manipulative and attention seeking behaviors and can be challenging to care for. With the lack of research and understanding I often wonder which came first, the pain or the psych symptoms. Either way, these individuals are suffering.

I do suffer from depression and anxiety as well. For me I know that my pain was first, and it can be maddening to hurt for essentially no reason. It also makes you question your sanity when you seek help for this pain and are repeatedly told nothing is wrong.

Specializes in ER, TRAUMA, MED-SURG.

^^^This.

This describes me to a "T".

I have flare ups with hormone changes, stress, and when I don't get enough sleep.

I too have found Tramadol and Aleve or Ibuprofen to be the best pain management, but I try to only use it when I absolutely have to.

The funny thing is I was recently searching for this topic on AN and didn't find anything. I was wondering how nurses with this cope day to day.

Hahaha! I did too - I didn't find anything either! It was maybe a month ago - I was disappointed when I didn't find anything. Happened to run across this one :)

My fibro symptoms didn't really affect me until I started having some CP and SOB. My cardio did a cath and found I had an ASD. Had it repaired in New Orleans - and had already been Dx with HTN. In the next year I had a MI, then a year later the CVA.

Since my exercise tolerance has decreased my weight has just exploded. The Lyrica does make me gain even more - almost made me want to get off it but then I'd REALLY be in trouble!

Thank goodness dh is also an RN and he understands how I feel when my sx flare up.

Anne

Specializes in ER, TRAUMA, MED-SURG.

I do suffer from depression and anxiety as well. For me I know that my pain was first, and it can be maddening to hurt for essentially no reason. It also makes you question your sanity when you seek help for this pain and are repeatedly told nothing is wrong.

Right! This is SO true! I've had people (including my mom) who didn't know or really understand that just because they couldn't see looking at me that something was wrong.

I have had some trouble with anxiety - I'm trying to work on that some - I'd rather not have to take something for that - I swallow a pharmacy now as it is.

Glad to know I'm not alone!!

Anne.

I have been diagnosed with fibro but later had the diagnosis changed to lupus. It took ten years from onset of symptoms and a second opinion to be correctly diagnosed. I personally feel like fibro is "a catch all". The medical profession wants to acknowledge that our pain is real, but don't really put in the work. Remember they also want to keep press gainey scores high and if a patient perceives that they are being brushed off and are in pain the scores go down the toilet.

Specializes in Emergency, ICU.

Yes it's a hard diagnosis to wrap your head around. I have 2 family members who have been diagnosed with fibro. Both are strong women who dealt with pain for years before seeking help. I believe they take lyrica or cymbalta and analgesics. They both also have a therapists because both feel their physical pain is somehow connected with their emotional pain and coping mechanisms. The combination of therapies seems to work but I don't think they are ever pain free.

Anyway, for those of you with fibro I have a question. Besides meds, are there any lifestyle changes that are suggested? I was thinking of diet changes. Is there any diet that fibro patients talk about? Gluten free, vegan, etc? Just wondering what complimentary treatments are talked about for this diagnosis.

Specializes in Vents, Telemetry, Home Care, Home infusion.

Fibromyalgia: MedlinePlus has multiple links regarding diagnosis, medications, alternative treatments, clinical trials.

Mayo Foundation for Medical Education and Research: Fibromyalgia Misconceptions

What is the most common misconception about fibromyalgia?

The top misconception is that people think fibromyalgia isn't a real medical problem or that it is "all in your head." It's sometimes thought of as a "garbage-can diagnosis" — if doctors can't find anything else wrong with you, they say you have fibromyalgia.

There's a lot that's unknown about fibromyalgia, but researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently. As a result, they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem.

Is there a diet for fibromyalgia?

Some people with fibromyalgia think that they should avoid refined flour and sugar, sugar substitutes, the caramel color in some soft drinks, or carbonated drinks in general. But there hasn't been any research-based evidence demonstrating that any of these substances cause the symptoms, nor that removing these substances from your diet works to make the pain go away. There may be anecdotal evidence — people who say that something helps relieve their symptoms — but there's no clearly identified problem food or magical diet cure yet.

Specializes in Emergency, ICU.

Thanks nrskarenrn, informative links.

My question was geared to the responders with fibro -- what have you found helpful (or not!) when it comes to alternative treatments?

Specializes in IMCU, Oncology.

My allergist says I may have an atypical case of fibromyalgia. I have suffered from chronic fatigue and pain literally all my life. Most people who know me have no clue that I suffer from this, as I do try to hide it. I can function normally, but I suffer and have to take pain medications and work to get adequate rest.

I am not neurotic, nor do I have a psychological disorder. Also, I am not making it up because I live with pain and fatigue, quietly! I do not get special treatment as a result.

I have met at least two other people who actually have the cysts and tender points and I am sure they weren't making up the cysts or had a psychological disorder that would cause cysts. The cysts and tender points are used in the diagnosis of Fibromyalgia. Fortunately I do not have cysts. I literally could feel the cysts in their body.

I believe fibromyalgia can be a combo of many things. For me, I was born extremely premature 37 years ago and obviously lived. I was born to a smoker and grew up in a smoking home and an overall unhealthy environment. I believe all this affected me although I didn't put 2 and 2 together until I was grown up. I didn't eat real vegetables until my mid twenties and thought drinking only soda was normal until about that time too.

All to say, I think fibro is really an assault of the immune system from past and current afflictions, possibly Epstein Barr and possibly food allergies. I have worked diligently for the past 10 years to figure this out and heal from it. Nothing has worked for me to completely cure me of fatigue and pain, unfortunately! However, I believe that diet and lifestyle do play a huge role but is is very hard for many sufferers to adhere to a strict diet free of food allergens and to exercise enough when they feel tired and sore all the time.

Finally, I started taking low dose naltrexone which is the only thing so far that has taken the edge off the pain. LDN is used to to create a rebound affect of endorphins which decreases pain. I was afraid I would damage my liver taking Tylenol, because I cannot take NSAIDs. I have found that eliminating common food allergens increases my energy and adhering to an exercise routine and strictly enforcing rest helps! It is still my goal to figure out what causes it, at least for me and work to get to a normal level of feeling pain free and energy.

Specializes in ICU.
Thanks nrskarenrn, informative links.

My question was geared to the responders with fibro -- what have you found helpful (or not!) when it comes to alternative treatments?

The best alternative that I have found is yoga and focused breathing.

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