Any Fibromyalgia Sufferers on the DIS? (long)

[MeanLaureen]

I have a question for someone suffering from Fibromyalgia.

First some background. I was diagnosed with Adult Onset Stills Disease in 2000. (AOSD is a rare autoimmune disease in the same family as Rhuematoid Arthritis - severe joint pains along with fever spikes that can be as high as 104 out of the blue) In 2001 I was told that I had developed Fibromyalgia as a "side effect" to the AOSD.

It was my understanding that the Fibro symptoms were the more muscular pains along with the pain when I was touched or if I laid down. It was keeping me from sleeping at night.

I've had to change doctors a couple of times recently because I am having a hard time finding a specialist that knows enough about AOSD to treat it properly. In the past they had just been filling me up with Methotrexate with no positive results, only bad side effects.

My newest Rheumatologist has told me that a lot of the pain I am in right now (and I am in tremendous pain 24/7) is Fibro related. I tried to tell him that I can tell the difference between Fibro pain and AOSD pain and 80% is AOSD related.

He told me that Fibro causes joint pain. That is completely different than what the other doctors have told me. My question to you guys is...would you consider your pain from Fibro to be mostly in the joints or more muscular that increases greatly to the touch?

I'm afraid he isn't taking me seriously enough when I tell him that the pain in my ankles and knees gets so bad by the end of the day that I can no longer walk without much difficulty or the aid of a cane. Or that the pain in my wrists and fingers is so bad that I can no longer write or even hold a pad of paper. He keeps saying "Oh, that's the Fibro". In the meantime he has suspended my treatment for the AOSD and I'm just getting worse day to day. His treatment for me right now is to dope me up with sleeping pills. Does this sound like the symptoms and treatment you have gone through?

 

[JC2]

{Hugs} Lauri. I'm so sorry.

I don't have any personal experience with this, but I have a close friend who does. I know the pain can almost be unbearable. I so hope that between you and the doctor, the best treatment for you will be found and that you will be feeling a lot better soon!

 

[Talking Hands]

Somedays pretty much everything hurts. Muscles, joints and hair. By the end of the day I can't walk without extreme pain and sometimes I can't even sign without pain. Other days I do just fine. I have fibro, osteoarthritis, diabetes and neurofibromas so I can't say exactly which causes the most problems but put together it can be downright miserable.

 

[mrsv98]

Laureen,

Sorry that you are having so much trouble My Grandma was diagnosed with AOSD 2 years ago at the age of 82!! The oldest case anyone had ever seen. Her doc kept her on prednisone for a while and she did really well (once the diagnoses was made after weeks...but that is another story). She still has trouble with her feet sometimes but I don't think she got the fibro.

My Mom has fibro and her doc has her on a bunch of stuff. I think for her, it is mostly muscular and not the joints so much. She is on her feet all day so sometimes it is hard to tell if it is fatigue or the fibro.

I guess my real advice is to say that if you feel your doc is not listening to you, then it is time to get another doc. Tell him you are thinking of leaving his practice because you feel he is not giving credence to your concerns. This is your body and your pain and you have a right to be treated well!

 

[mamajoan]

Hi, I will give you my 2 cents as someone with Fibro and someone who has treated patients with Fibro (I'm a PTA-retired)
Fibro can be characterized as vague and general joint and muscle pain. It ranges from Mild to quite severe. There a specific points on the body that can initiate or increase the fibro pain. These points are in specific muscles sites. They are consistent with all true fibro patients. Low dosages of Mild mood elevators such as elavil (sp?) are used to increase REM sleep.. People with fibro rarely enjoy a full night of deep sleep. Therefore the muscles of your body never get to fully relax causing the pain cycle circle to continue. Joint pain often occurs but is not always part of fibro. Some docs use the term Fibromyalgia when they can not find a better dx for generalized pain. Fibro can be dx'd correctly when utilizing specific criteria.

I hope this is making sense.

Now as someone who was dx'd with fibro several years ago after recovering from severe leg trauma, I will tell you that I have all of the above symptoms of fibro. I tried taking elavil.. It worked wonders to decrease my pain.. but I was sleeping 12 or more hours a day.... so it really hampered a normal lifestyle. I am now on vioxx for a combination of dx including fibro, osteo and degenerative joint.. also pain associated with multiple fractures. My pain is muscular and joint associated.
It handles my pain approx 80% of the time reducing the pain by at least 50-70 percent. Some day the pain is high and I can not differentiate btwn muscle and joint pain.. they all just seem to hurt equally. Other times the pain is easy to seperate.
Mood elevators are not sleeping pills but do induce deeper sleeping patterns. Is he giving you the mood elevator or a true sleeping pill? How is the pain you are feeling now different from your AOSD? Are your joint capsules deteriorated? That would be a cause of major pain in knees and hands... somewhat similar to R/A...
Sorry this is long.
Take care, I know it is frustrating. I hope you are feeling better soon.
Joan