Why don't people believe in fibromyalgia?

Question

I suffer from this desise and have encountered many peole who feel it is not real or is all in the sufferer's head. I have been formally diagnosed by a specialist and suffer from pain everyday and don't understand how another person can tell me that I am not suffering.

Answer 1

I think its because they can not see any physical signs of a disease. If we had a twisted limb or walked with a limp people would be more sympathetic.

Plus doctors are still none the wiser as to the exact cause of CFS and Fibromyalgia. MS used to be thought as a malingers disease until, doctors found the cause, maybe one day doctors will find the cause of CFS & Fibromyalgia.

Answer 2

If they can't see it for themselves something like a missing limb some people will not believe. The saddest part about some doctors will tell you it's in your head, you have hysteria, or you're depressed. This happened to me while I was having relapses from Multiple Sclerosis. Some doctors didn't believe I was suffering from pain and off and on numbness.I suffered with these symptoms on and off for over 10 years before I was finally diagnosed. They found out then because they thought I was having a stroke (face twisted to one side slurred speech seizures etc.) I know what you are going through because I had to have physical symptoms to be finally diagnosed with something that I had been telling doctors that I was having symptoms of since 1994. I told them I believed it was MS since 1999 wasn't diagnosed until 2005. I was outraged! The only thing that I can tell you is to lean on God that's what helped me. Oh yea,some people still tell me that I don't look sick because I'm not using any type of walking device to get around. It's ignorance just plain ignorance.

Answer 3

There is a specific criteria for diagnosing Fibromyalgia,and specific symptoms associated with the disorder.

It is not a "catch all diagnosis" for "we dont know what is wrong with you". This kind of thinking went out almost 20 years ago It is a very specific disorder and easily diagnosed by the existence of "trigger points" on the body.
If you have it and a Doctor presses on one of those trigger points you will know it !

As for it not "being real" that theory is held only by Insurance companies and Workers Compensation, and insensitive people.

FYI It is real and I have received a Disability Pension based on the diagnosis of Fibromyalgia caused by a traumatic work place accident, so don't let anyone tell you anything different.

There are dozens, probably hundreds of web sites with information on Fibromyalgia, there are dozens of books written about and there is a lot of research being done on it.

The Medical community has now identified different categories for Fibromyalgia, including Post Traumatic which is caused by a physical injury. The prognosis and treatment for the different categories vary.

It's a very incideous disorder because it is "invisible" and no one else can feel your pain and very few people can appreciate how debilitating it can be.

Answer 4

People with any knowledge on this disease know it is real.I think it is because some days you feel good and people just assume you are not ill because they can not see it and alot of tests the doctors check come back negative?It is a autoimmune disease some what like arthritis. I also suffer from it. In the beginning I found that people where ignorant too but now things have changed. Even Social Security has it listed as a disability, they just don't tell you that it is. I have a doctor that treats me and I have found many of his other patients also are diagnosed with this. He is a pain management specialist. I hope you have found a good doctor to care for you.

Answer 5

Part of the problem is that there are no definitive symptoms - it isn't like small pox. You break out in pustules and you've got it. Or mumps - your cheeks swell up and you've got it. Or a broken leg. It bends in the middle where it shouldn't. Those sorts of things are easy to diagnose. But fibromyalgia has so many different symptoms, and none are readily discernible. That's what makes it so difficult to diagnose.
It's hard to believe that one person would tell another that they aren't suffering! That's like telling someone with a headache that they have nothing the matter with them because you can't see anything. Sounds as though you have some very insensitive friends!
Hopefully, you will find a way to control your symptoms and science will find a way to cure it.

Answer 6

Absolutely I believe it is a real sickness... I'm sure every illness was critisized when it was first discovered and named until further research lead to solid proof and diagnosis of conditions. Fibromyalgia is still relatively new in the medical world and as research progresses I think we will see less critisicm and more support for our condition. I have been living with fibro for about 5 years now and everyone that I talk to about the condition asks lots of questions and is extremely supportive and really wants to understand this condition as it is still new and the public has only really heard about it through the new commercials for Lyrica, which I have not tried.

Answer 7

I really feel for you, For along time I did not believe that is was real, I thought it was an excuse for people to miss work, and take pain pills... But I married a great lady who would try to play off the pain, she worked all night and did not complain, but I could see her struggle all the time with little things like getting out of bed and stuff. I know it is real, and it sucks that soo many doctors will not treat it. I hope they find a cure soon.. Good luck..

Answer 8

It's ignorance on most people's part, what they don't understand they make fun of. It is a real disease, you have proof if you were diagnosed. I never went to be checked but I am fairly sure i have it also. It is something I wouldn't wish on anyone, it is miserable. The more doctors diagnose it the more people will hear about it. Don't worry what they say, they are just naive. Or go on Internet and print out paper on it to show people it is real. Good luck to you.

Answer 9

It is because it is an "invisible" condition. If people can't see something wrong, they have trouble understanding it. Like depression - some people think that is not real, either.

I live in Phoenix AZ (USA). Where I worked, most people seemed to have heard of it before and were sympathetic even if they couldn't understand it.

My dad and one of his sisters, and two of my girl cousins have it as well as me. I've tried a couple of things for it, also.

Note: Look into occasional hydrocortisol (20mg) use. That is what I am currently on. It kills some of the pain for me. See www.helenfoundation.com.

Answer 10

For the same reason people don't believe in chronic severe migraines...the symptoms are not easily visible to our friends and family and often not even to many doctors. It is an unfortunate problem for those of us with these illnesses. I have the migraines and fibromyalgia, right now the fibromyalgia is not giving me a great deal of trouble; however, the migraines are horrible. Unless the epilepsy starts giving me trouble again (did you know that migraine and epilepsy are related?) people tend to discount the migraine. I am accused of being depressed, or drug seeking at times. My ex made the mistake once of telling me the migraines were all in my head...lol. He was right, they are usually on the left side of my head!!