What do you think of fibromyalgia?

hotwaterbottle · Apr 10, 2014

Wow, Pavanneh, that sounds awful. I don't have fibromyalgia, but i have something else that most people think doesn't exist, so I know what it's like to have people think you're crazy.

nanceeann42 · Apr 10, 2014

I was diagnosed 5 years ago after my 3rd car accident (ended up being hit 5 times in 5 years....welcome to Dallas!). After the concussion had subsided and the whiplash, I asked the doctor why I was still hurting so badly in weird spots. He said that fibro can set up after repeated trauma. Besides the neck and shoulder pain, the worst spots for me are the IT bands bilaterally on my outer thigh. I can't lean against anything they are so painful. None of the nurses that I work with know that I have it, it won't kill you, and we all have something that hurts after a 12 hour shift. So I deal with it and keep moving. I am not neurotic, don't have depression issues and am not attention seeking. My patients are my focus, and eating well and staying active. Some mornings when I wake at 430 am for work, I am aware that there isn't a spot on me that does not hurt, but you work through it and it subsides some once you get moving and focus on other things. It's not something you can dwell on or give in to. Autoimmune diseases do run in my family and I have Raynauds, so not sure there is a connection there. Fibro is a mystery in a lot of ways, but there sure are a lot worse things that I could have going on with my body!

nanceeann42 · Apr 10, 2014

You can do whatever you set your mind to! Go for it!

withasmilelpn · Apr 10, 2014

Fibromyalgia is real, as real as any headache you might complain of that I can't see, but yet still believe you when you tell me.

Years ago I started having problems with my knees, then over time developed widespread pain throughout my body and fatigue. I had tests for lyme, lupus, rheumatoid arthritis, etc, all negative. I did test positive for Parvo and Mono but the pain and fatigue never really went away, just fluctuated based on hormonal changes, weather, stress, or sometimes for no clear reason I could see. Fibromyalgia was the diagnosis when nothing else fit. I did try Cymbalta but it relieved no pain and made me feel 'weird' and unsettled. I tried vitamins, diet, exercise, etc. Nothing really worked.

Movement does help keep the muscles from getting stiff which can increase pain, but too much movement, and activity brings on bone crushing fatigue (and sometimes worse pain). The fatigue is unlike anything normal, the best way I heard it described from another suffererer was "feeling unplugged."Then I feel so tired I actually hurt and can barely think. If I'm lucky and have the time, a short 30/45 minute nap can help. I'd rather be in pain frankly, then deal with the feeling of being tired. Sometimes I worry that I'll fall asleep at the wheel or do some equally disastrous thing because I'm too tired to concentrate. That bothers me the most. I'd rather be in pain!

The more research I did, the more I realized how ineffective most treatments are and how many health professionals view it as fake. I'm almost always in chronic pain, but choose to work throught it. I mostly can ignore it and go on about my day without complaint. Occasionally it flares to the point I'd consider asking for something stronger than Ibuprofen, but I dislike taking medicine.

While I'm sure that psychological elements can worsen diseases, and that some individuals try to capitalize on Fibro with manipulative behavior, I'm equally sure there are just as many people suffering with these symptoms who don't have psych issues and are not behaving in such a manner. I don't. I never mention it. Not to friends, family or even my doctor for that matter. (Well on occasion, my husband, but far, far less than you'd expect given how generally awful I feel.) Maybe at some point if there is a significant breakthrough I'll bring it up to my doctor. I'm not an anxious person and am generally optimistic and realistic. Before Fibro, I was active, hiking, canoeing, parachuting - I lived life to the fullest. I really miss being that way, but I still push myself to do a great deal regardless. Life is too short to do otherwise. And I've never missed work because of Fibromyalgia.

This is a link to a great rant by a doctor - Dr Kevin White who is studying Fibromyalgia, and another link below from the same doctor about some of things research has found out about on Fibro. He makes some interesting points about how some of the Amish have been found to have Fibromyalgia symptoms, and thus disproving the notion that people with the diagnosis are simply medical and pain med attention seekers as the Amish prefer not to use our Medical system for treatment.

http://www.google.com/url?sa=t&rct=j&q=doctor%20fibromyalgis%20you%20tube&source=web&cd=4&ved=0CDgQtwIwAw&url=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DYiVaZ15AXRE&ei=xfNBU6bgOIvJsQSjyYLACg&usg=AFQjCNFCuib92FQTQE6ghZ5bM8Jd2h4AUA&bvm=bv.64125504,d.cWc

Best advice, be kind to your patients. You aren't in their shoes. You don't know what they are going through. And try not to judge either an entire group of people based on your experience with some. It always comes down to character when people are diagnosed with anything as to how they live their lives.

kittykittykitty · Apr 10, 2014

Your description is accurate.

kittykittykitty · Apr 10, 2014

Over 20 plus years I have found a vegan diet (that means NO dairy, eggs or other animal products), NO gluten, no peanut, no sugar or artificial sweeteners, no nightshades, NO MSG, no artificial anything and very low sodium helps me. I use bio feedback, guided imagery, multiple relaxation techniques including classical music and aroma therapy. I have used acupuncture. When all else fails I apply a compounded prescription gel of gabapentin/ amitriptyline/lidocaine 5%/3%/5% to the most painful areas, usually feet. I did not tolerate gabapentin or amitriptyline orally but seem to when applied topically. I know some others have found taking fish oil helps. I walked five or more miles a day; that did not help. Warm baths help some. The headaches: Migrastix helps as does quiet cool darkness, the usual for migraine. I surely hope this may help some of you who deal with this every day, also

edmia, BSN, RN · Apr 11, 2014

Thank you to all of you dealing with this illness for sharing. It really is very helpful (and humbling) to hear your stories.

kittykittykitty · Apr 11, 2014

Every time I read, "What do you think about fibromyalgia?" I want to scream, "It STINKS!!!" Not nice, I know.

sissiesmama, ASN, RN · Apr 11, 2014

OP, thank you for starting this thread. I honestly believe it has given a few healthcare providers the courage to "come out" so to speak. Fibromyalgia has such a stigma attached to it, some people are afraid to admit they have it for fear of others thinking they're mental.
As far as depression? A couple of people stated that if someone is in pain day in and day out, of course that person will be depressed. This is so true! There are days that are so bad you go to the restroom and cry, and all you can do is pray the day goes by quickly so you can just go home and go to bed. It is very hard to work full time when you're in almost constant pain, but so many are like me and have no choice. I could work part time and my husband and I could make it, but I have had no luck in finding a part time job. I could go to an agency but there are no guaranteed hours with an agency. When I say part time I mean 24-30 hours per week.
People who know I have fibromyalgia ask me why I don't apply for disability, but until fibromyalgia is recognized as a very real, debilitating condition, it is almost impossible to be approved. I also have idiopathic neuropathy and a non-healing lower lumbar fracture with radiculopathy which is very painful, but I don't know if that would qualify even in combo with fibromyalgia so I push on by the grace of God.
To those who have fibromyalgia and other chronic pain conditions, ((((HUGS)))) to all of you. Stay strong!
Thanks again OP for starting this thread. I don't feel so alone now.

I know!!! I was SO thrilled when I saw the thread! I've wanted to talk about fibro for quite a while but was kind of embarrassed to say anything until I found the thread. :)

kakamegamama · Apr 11, 2014

Nanceeann42---my daughter's initial bout was following an accident in which she was rear ended by another car. It does seem to be related to trauma, but I don't think there's research that says what about the trauma triggers fibro--unless it's hyperstimulation of nerve fibers? I need to read up on it--it's been a while since I immersed myself in trying to find out all I could so that maybe I could help my daughter. It must be so difficult to work as a nurse with that amount of pain & sensitivity. Hang in there!

JackieE_RN · Apr 11, 2014

There was a study done several years back on patients that had been given a diagnosis of fibromyalgia. When further testing was done, a very large number were found to have Chiari 1 Malformation. It can cause a substantial amount of pain and often goes overlooked. I was told for years that nothing was wrong when I was having pain. It took 7 years for them to figure out what was wrong. Some people might actually have fibromyalgia, but I think a majority have another condition, but the doctors can stop looking further if they slap a diagnosis on it.

morte, LPN, LVN · Apr 12, 2014

your daughter sounds more like CRPS

Nanceeann42---my daughter's initial bout was following an accident in which she was rear ended by another car. It does seem to be related to trauma, but I don't think there's research that says what about the trauma triggers fibro--unless it's hyperstimulation of nerve fibers? I need to read up on it--it's been a while since I immersed myself in trying to find out all I could so that maybe I could help my daughter. It must be so difficult to work as a nurse with that amount of pain & sensitivity. Hang in there!