Is it Fybromyalgia or not?

[DutchBlue]

Almost 2 years ago I developed symptoms relating to rheumatoid arthritis. Over the last months these symptoms have become significantly worse. My doctors cannot find the source of the problem and say that it isn't arthritis. I have had CAT scans, MRI scans, seen rheumatologists, neurologists, physiotherapists, more blood tests than I'd care to mention. In fact I don't think I have any blood left. Now I have just been told there is nothing anyone can do. There must be a reason for me needing to take 150mg of Oxycontin per day, 2400mg Brufen Retard, Temazapam and anti depressants. Even with all of these I still have a lot of pain, which is still unbearable most of the time. I have been told  have a form of Fybromyalgia, but still there is nothing anyone can do.
I cannot do anything strenuous without spending time afterwards either sitting or sleeping. I did physio 3 times a week which was fine, but when I stopped the pain still came back worse than ever. The pain comes when I have stopped whatever it is I was doing, but is not as bad while I do anything that might involve physical bodily activity. If I could continueously work or be active without a break perhaps it would be better, but that is physically impossible. I haven't had 8 hours continueous sleep since I don't know when. Four hours is about the most I get unless I take more anti depressants, which turn me into a zombie.  
The pain is all over my body except my chest. I have swollen hands, arms, legs and feet. It is like having flu but 100 times worse.
Can anyone please help me?

[sfbaygirl]

I take Lyrica too. It has been a miracle for me as well. It took about a month, as I did get on it slowly to see that the sides were minimal. I did have severe fatigue at first, but it has gone away somewhat.  Hey, anything is better than that pain!  I wanted to jump!  Now I can go to school and have a life. It is not perfect, but it works for me!  I still have bad days, but nothing like before.  I hope I don't have to live with this fibro forever, but I will take the Lyrica as long as I have to.  Nope, I am no sales person for this drug. In fact I wanted off of it for a while, but if I can function without pain I will do this drug. I sure don't want to,  but it sure does help.  After a year of pain, I found something that actually works. I have heard it doesn't work for many people....didn't give it time when I started... Actually I wish I could be without it, the fatigue continues....not as it used to. I am in Grad School, getting A's.  I couldn't have done this without this drug.  

If you want to know more, I will be happy to tell you my story.  It sure is a painful process!  

Best wishes,
Linda

[Diane007]

Besides the swelling...all other symptoms point to fibro in my opinion.

I have RA and Fibro and one thing that my rheumatologist told me was that sleep is EXTREMEMLY important for those with fibro. While you are in REM sleep (the deepest stage of sleep) is when your body repairs the muscles and connective tissues. If you dont get enough sleep your body cant repair itself and you end up worse and worse.

The swollen extremities is most likely caused from something else and not fibro. "Dutch Blue" above commented about CFS and I agree they do go hand in hand in many cases.

I too was on pain pills before I was diagnosed to help get rid of the pain, but it barely took the edge off. My Dr. recently prescribed me Lyrica which is a new FDA approved med for fibro! The very first day I was on it my life did a 360! I feel almost NO pain at all anymore! It truly is a miracle drug : ) I am able to sleep at night and live a normal day. It was made for epilepsy patients and patients with nerve damage from diabetes, but it helps SO much with fibro!!!

Talk with your Dr. and see what he thinks.

Good luck and you will be in my prayers.

[PlateletGal]

Small world.... my husband lived in Holland for a few years !  I honestly can't say you have fibro symptoms and don't recall anyone who has fibro who has had swollen hands, arms, legs and feet. But I do know that Dr. David Bell has listed "swollen of the extremities" as a possible symptom for CFS and you certainly can have both fibro & CFS.  People who have either of these conditions also can have other secondary autoimmune conditions. Do you happen to have a copy of your labwork ? If not, do you remember having a positive ANA titer and RF ?