Progress, slowly

Hi all

I wanted to keep telling my story of diagnosis, just in case it helps anyone else who's trying to figure out what's wrong.

I saw a rheumatologist in August (after many years of fatigue, muscle pain and achiness, and many other doctors appts) and he said he believed I had CFS/ME. He said he wanted to draw a line under my diagnosis so that I would stop going to the doctor about it and manage it on my own. So he sent me for loads of blood tests, including a couple that I have never had before. Amazing - I thought I'd had them all.

In December I went back for the results and the follow up. A couple of the blood test results weren't yet in, but based on the others he concluded that I had CFS/ME and discharged me from his care. Zero advice about how to manage my pain and fatigue. He dismissed my knuckle rash and redness as eczema, despite allergy testing that showed I don't have allergies. He dismissed my swollen ankles as fat ankles. He said the pain I felt from pressure on my skin was psychological. At the point of this appt, I was feeling really well, so I accepted his diagnosis and hoped I was on the mend, as I have done many times before.

Then, at Christmas, the knuckle rash came back, the fatigue came back, and I got a letter from the rheumatologist telling me one of the missing blood tests had come in, and it was positive! This has never happened to me before and it is so exciting! Turns out I have low complement levels (C3 and C4), which indicates that I have, or may be developing, an autoimmune disease. Still no ANA results back in though. The letter went on to say that I therefore was unlikely to have CFS/ME and that he wanted to see me again in clinic. For this, I have to wait five months. Ugh.

The last month has been rough - pain, fatigue, numbness in my hands and feet and entire right leg. Twitching face muscles, nausea, intense lower back pain. Fatigue, fatigue, fatigue. Just want some medicine to make it go away. My suspicion is that I have DM or some kind of undifferentiated connective tissue disease with elements of lupus. We'll see. One of the reasons the rheumatologist didn't think I have DM is because my symptoms can come and go - I sometimes go months without feeling that bad. He says it should be progressive. I don't know..

More waiting, but at least I have a doctor's attention now.



What is CFS/ME?

B Griffith

I am assuming CFS is chronic fatigue syndrome but not sure about ME?? Have you seen a neurologist, many of your symptoms that "come and go" could fall into other diagnoses. Have they ruled out Multiple Slcerosis?? I have M.S. and have for 10 years, started with optic neuritis (blindness in one eye brought on by heat and exercise), also had numbness etc( had white matter lesions on my brain and oligoclonal bands in my cerebrospinal fluid) 10 years later my auto immune illness has morphed into MCTD and DM with chronic elevated muscle enzymes now. Even thought the enzymes are back up I am feeling pretty good...not back on the walker or cane!

I think if you have not been evaluated by a neurologist I would consider that option. Could be auto immune but not rheumatological in nature.

Good luck


This link can tell you more about CFS and ME: