Being forced to rethink my views on fibromyalgia

[casi]

I finally dragged my butt into the doctor after a month of almost constant headaches that would occasionally get so bad I couldn't crawl out of bed. I went in with fingers crossed that my pain was something simple and stupid that would be easily fixable.

My doctor poked, prodded, and asked a few questions. Got out of me that I have sensitive spots on my body that when touched cause a lot of pain. I always thought these were completely normal, but I guess they are one of the key diagnosing symptoms of Fibromyalgia.

To me Fibromyalgia has always been synonymous with "drug seeking" or "the doctor doesn't know whats wrong with you". So here I am with a potential diagnosis of Fibromyalgia and I don't really know what to think. Part of me is stuck in the mindset that this isn't a real disease and the other part of me knows that my pain is real.

When I got home I did some research because honestly I don't know much about Fibromyalgia other than it's used to describe chronic pain. Oddly everything seems to fit. So now I am stuck battling with my own prejudices towards a disease I've been diagnosed with.

[time4meRN]

From what I know about fibro it's real however, it is related to other problems usually depression. Constant headaches could perhaps lead to depression. Have you been worked for the HA. I'm with you, I have the same impression of fibro, but I always try to keep in mind that you rarely see a male dx with fibro, it's usually women. Is it that the main stream, good old boy club has dismissed women again. Are we back to the 50's when dr's said, " go home honey take this sedative, it will help" .

[JoanJoyce]

My daughter was told she had fibromyalgia. Treated with meds, horrible headaches and bodyaches. For two years she suffered. She was asked by a relative with celiac disease to please get a blood test for celiacs..low and behold, she is celiac. That was 2 years ago. She is gluten free and found out she had to avoid dairy and soy products. Really, today she is a different person. She has her life back! She also had the sore spots on body, horrible pains in joints. Just a heads up! Wishing you the best!:heartbeat

[KristeyK]

My sister, who used to be a very active woman, began developing pain about 9 years ago. She's been through tests for everything imaginable, all while her pain was worsening. It was finally a Rhuematologist who dx'd her w/ Fibro. She didn't believe it and went to see two others, who ran all the same tests again, only to be dx'd with Fibro. It's gotten to the point where she has few good days. She cleans the house for an hour or two, and spends two days "paying" for it.

This is something I will take with me when I graduate and get into my career. Pain is a VERY subjective thing, but I look at my sister on one of her "good" days and KNOW she's hurting. To doubt so many people because of the few who are only seeking meds is a disservice to those who truly do suffer from chronic pain conditions.

[freesia29, ASN, RN]

My sister was dx with fibro a few years ago, but she refuses to take meds for it. She went to a naturopath, who put her on a detox diet, and within a month, she felt almost 100% better. It's of course very hard to stay with, sugar, caffeine and gluten are huge triggers for her. She will literally have 1 cup of regular coffee and within 20 minutes, she cannot stand up from her desk.

I am afraid I am having troubles too, back, shoulder, neck, generally achey all over, and when I try the trigger spots...I have pain in all of them.

I see my doctor on Monday about a lump/swollen very tender lymph node under left arm so I will ask him about fibro as well.

I hope you find some relief!

[Blackheartednurse]

Also people suffering from hypothyroidism often develop fibromyalgia.

[JazzysMama]

To the original poster- It can be very difficult to change deep-seated ideas, until the time comes when you are thrust into a position that makes the situation real to you. I've been watching "Survived: Beyond and Back" and it had the story of a MD that believed in the sciences as opposed to religion. Everything was black and white. Then, it all changed once he died because he was brought back to life after his heart had stopped. He had a profound experience that made the concept of religion and God real to him. He now works with hospice patients to help ease the minds of the terminally ill. Perspicacity can sometimes only be achieved when something is tangible.

Personally, in regards to "drug seekers", I would rather have 9 patients recieve pain medications that don't necessarily need them if it meant that 1 patient out of 10 would not have to suffer horribly because a disease process that is not fully yet understood.

[streetbob66]

I have also been diagnosed with fibro and have been having a terrible time with it. I have taken all the recommended medications and none of them helped. I still go to work everyday and I am working on my BSN on-line, and with the help of a wonderful fiancee take care of my two kids and the house. I am 44 years old and feel as though my life has been taken away from me. I use to be on the go non-stop and now it is all I can do to get through the day. I was on anitdepressants for many years and have since stopped taking them, my stress level is high and I hope when I am done with school this summer and a few other things change in my life the pain will decrease. We are going to be looking in to getting a hot tub. The only time that I had any significiant relief was after sitting in a hot tub when we went on a trip. I have worked with many patients that have fibro and I also had a total misunderstanding of the diagnosis, the pain is unbearable at times. I feel trapped in a body that is not mine and none of the doctors seem to have any really good answers. I refuse to give up and I am going to fight to have my life back the way I want it to be. My heart goes out to anyone that has to live with chronic pain and I hope that there is an answer for all of us some day.

[gapeacheykeen]

Very often there are times when trying to distinguish between diseases, the line is very narrow. I think that there are alot of people with allergies to chemicals that are put in food and they not realize it.

[gapeacheykeen]

I have heard that people were using coconut oil in cooking and using coconut sugar instead of the sugar cane "sugar", that it is helping them with the fibromyalgia.

[canesdukegirl, BSN, RN]

I had one doc dx me with Fibro, then after getting a second opinion from a very well respected doc, I was dx with Chronic Fatigue Syndrome. Hmm...and here I was thinking that I was just a lazy, pathetic pain in the butt! I also thought that my pain was just related to aging, but I didn't think it was normal to wake up with every joint in my body screaming at 35 years old. I was in denial about the dx for a while, then decided to take the medication she prescribed. It was called Provigil and it is used mainly for narcolepsy. I continued to be skeptical, but after taking this medication for a week, I felt like I had a new lease on life. I was able to do many of the physically taxing things that I had written off my list previously. After about a month of taking Provigil, I realized that my CFS had limited me in such a way that I had become a different person: depressed, not engaged with those around me, and feeling like a loser because I thought I was the laziest person on earth. I was surprised how much my body had adapted to the pain over time. Sometimes very long shifts will still kick my butt and sometimes even the meds don't make me feel better, but those days are now few and far between instead of every single day of my life.

Before I was dx with CFS, I had my first migraine. It was so awful that I thought I was having an aneurysm. My hubby drove me to the ED and I had a CT, which was negative. The nurse taking care of me was so ugly to me. She was sighing a lot, she smirked at my answers when I was giving her my hx (I had no hx). Then she tossed my chart on my feet and said that she "guessed that I needed drugs". I was in too much pain to be outraged (I was a nurse at the time, but did not tell her), but I asked her point blank why she was being so abrasive. She said that she had seen it all and since I had no hx whatsoever of migraines, that she thought I was drug seeking. I was shocked. When she administered MS04, she uncapped the syringe and tossed it on my chest. She gave it and then said that she hoped I got what I was looking for. I reported her to HR (she also had no idea that I was an employee at the hospital) and I found out sometime later that she had "moved on". It is so important for us not to jump to conclusions regarding patients in pain.

It is sometimes difficult for us to come to terms with being dxd with a disease or syndrome that we think is bunk. I tell NO ONE about my CFS. I am terribly afraid of being labeled and want to be on a level playing field with my co-workers, my friends and my family. It is sad that I feel this way, but only my hubby knows. Oh, and all of y'all.

OP, I know that you are struggling with this. But it IS real, and there are options for tx. I hope you feel better soon honey. It sucks.