She did the BEST for you. It takes a diagnosis from a 'specialist' to receive disability benefits. I was diagnosed with CFIDS by a Rheumatologist and he tested everything over a two year period of time and I had everything from sleep studies done to testing for hepatitis C to everything else you can think of. I even was sent to a cardiologist to throughly test my heart and even had my brain scanned to rule out MS. CFIDS diagnosis is a result of eliminating ALL OTHER possible causes of your symptoms. CFIDS is a diagnoses of LAST RESORT. If you are going for disability you will need to keep copies of all medical records and be sure you are taking all medications and following all directions given to you by your doctors. I also suffer from severe depression that was brought on from five years of coping with this disability and actually had times of wanting to end my life it all just become too much to cope with. You can't get disability unless you are unable to hold ANY job that is available in the national economy. That means if there is a single job on the other side of the county that you quality for even with your disability you will be unable to receive benefits. It took me two years to win my approval and it almost cost me my life in the process. I'm bedridden from my illness much of the time and use a walker and electric scooter to get around and it still took them two years and my fighting with them every step of the way to receive needed life-supporting benefits.

Be prepared for one hell of a fight to win needed benefits.

Look up 99-2p of the SSA rule book code for CFIDS disability and educate yourself on the 'inside track' of how the process works because they are depending on you ignorance to rule against you.

Here is one of the links:

http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html

((hugs)) Patricia

I've been told a rheumatologist is the place I need to do, but mine just drew a little blood and prescribes drugs.I think it just might be the fact that I live in a state in the middle of nowhere, but can't be sure.

I've only seen my rheumatologist once so far, have another appointment with him this week. He spent a long time with me (relative to what doctors these days spend) asking me all sorts of questions about my health and life to try to figure out specifics of what could be causing my fatigue (for example, a connective tissue disorder, since my sister has one, fibromyalgia, rheumatoid arthritis, some other autoimmune disease). He ordered some more tests and told me he suspected that I have CFS but that the diagnosis was contingent on the results of the tests, and laid out some potential treatments. I felt like he really listened, but at the same time, I am not at the point where I will accept CFS as a diagnosis, since in my mind, it doesn't explain the actual cause of the illness (I see it as a catch-all). Anyway, the point I'm trying to make is that rheumatologists are supposed to more informed about CFS than GPs, so you should have better luck getting treatments and disability. If yours isn't, find a new one.

If you are having any pain or swelling then they would send you to a Rhuemy who would test you for Arthritis, Lupus, Fibromyalgia, Osteoporosis, and other autoimmune diseases.

They diagnosis the problem and then recommend treatment.

I have a wonderful rheumatogolist. She had more skill as a diagnostician, an immunologist...has stepped up in so many ways for me over the years. My gp didn't know what to do, how to help, the rheumy did! All the best in the days ahead as you get sorted out...hugs!

The rhue. I saw told me my rhue. arth was caused from hep.c and if I get rid of the hep c I'd get rid of the rhue. arthritus??? How strange is that? Saw 2 different gastrololgists and both said " don't expect to get rid of the rhue. arth. even if the treatment for hep.c works. Very conflicting to say the least. Good luck finding a good rhue. Just sharing my experience. Best wishes, nrthngl4ever

Wouldn't have a clue never seen one though Immunologists and Rheumatologists seem to be the main Spec'st that CFS'ers see.
Al

@ Nixxle my husbands doctor did the same. Basicly they are there for the long haul to watch you transform into what ever arthritic creature they think you will be. And to prescribe drugs to ... could be good for Social Security case though. But yeah basicly a lab rat.

Hi,

If it's ok, I would like to add, back at the beginning the 1st rheumy I saw dismissed me. He took labs and then said I just needed to start running again and lose 10-15 lbs. He also called me LAZY, told me to get off my duff.

I knew something was physically wrong with me, all good to keep fit, get it. But I was very sick, very changed, something was definitely going on. His remarks hurt my feelings.

I did some research, found the immunologist/rheumatologist I have now. She was what day is to night. She did a very thorough physical exam, ran tests. She offered some general thoughts on what was wrong with me in that initial visit. She told me I was hypermobile, had Reynaud's Sydrome, suspected Restless Leg Syndrome. She also did the 18 trigger point test for Fibromyalgia. I scored really high on that also.

CFS was suspected, but it was a conclusion drawn after having unrelenting fatigue for more than six months. There were other symptoms, but this was the primary one that she used as a marker. I also had tender glands, body aches, see the CFS symptoms list and I was the list.

I also found out that I had ankylosing spondilitis, osteoarthritis, degenerative disc disease, bone spurs CFS, Fibromyalgia. Reynaud's Syndrome and RLS (restless leg syn) She offered to go punch the first rheumy in the nose. She looked at his tests and was so mad. He had tested me for one type of arthritis only. She said there are so many kinds of arthritis. She was mad at him on my behalf...she said she would like to show him lazy...he was the poster child for lazy regarding his care and dismissal of me.

I also had Barrett's Esophagus, GERD's and Hypothyroid Disease. I found these things out by seeing a gastroenterologist and a endocrinologist respectively.

It was a lot to take on, take in and learn about, to get treatment, change my diet, amend my life, adapt. I had to get a house with a master on the main floor, I had to get a different kind of car, I couldn't manage a clutch any more. I had to make a lot of serious changes, but each change, each stride helped me. I wish you all well on your journeys! Hugs!