Hi,
My wife is in the process of being diagnosed with ME/CFS now, her Rheumatologist has said that will be the likely outcome after she has seen another specialist to confirm it. She has been on a terrible ride for the last two years, losing her job, confined to her room most of the time, with bad fatigue, PEM, joint pain and lots of neuropathic symptoms: bound feet, tight scalp, Raynauds, numbness and tingling, twitching muscles etc.
Her illness came on with joint pain, first in both knees, like smashing glass, which moved to her elbows, and then to her hands and feet. The joint pain is significant and constant, and gets worse with exercise. Her knuckles turn red, but there is no swelling. Initially our GP thought it was RA, but that was dismissed due to lack of blood test confirmation and no swelling. She has been treated as UCTD for the last two years. Which means she has taken a lot of strong immunosuppressives: Methotrexate, Azathioprine, Leflunomide, as well as anti-malarials and daily prednisone. She is still on the prednisone and Hydroxychloroquine.
The prednisone does help with her daily condition, but none of the other meds appear to have helped, although she was allergic to the Methotrexate just as it appeared to be helping, and she took another medication called Quinacrine which helped significantly for a time, it meant she could work for a few hours a day again when she was on it. Quinacrine is an anti-malarial drug used in WW2 that has a stimulant aspect to it, so it is good for lupus sufferers who also have fatigue. It has occured to me that it could be a useful drug in ME/CFS as it treats underlying autoimmune conditions, and it is also a stimulant that treats fatigue. Unfortunately she was allergic to it, with skin peeling all over her body, so had to stop. It is a pretty serious allergic reaction which can have long term repercussions so it is very important to stop if you get lesions or skin peeling.
Anyway, I guess I'm wondering if her story sounds like it fits with ME/CFS, she doesn't have OI, or any muscle pain, her pain is exclusively in her joints from the elbows down, and the knees down. She certainly has the symptoms to be diagnosed as ME/CFS, but we wonder with the joint pain, and her initial diagnosis and treatments whether this is what she has, or what exactly it is. We're wondering if other people have a story similar to hers.
thanks.
My wife is in the process of being diagnosed with ME/CFS now, her Rheumatologist has said that will be the likely outcome after she has seen another specialist to confirm it. She has been on a terrible ride for the last two years, losing her job, confined to her room most of the time, with bad fatigue, PEM, joint pain and lots of neuropathic symptoms: bound feet, tight scalp, Raynauds, numbness and tingling, twitching muscles etc.
Her illness came on with joint pain, first in both knees, like smashing glass, which moved to her elbows, and then to her hands and feet. The joint pain is significant and constant, and gets worse with exercise. Her knuckles turn red, but there is no swelling. Initially our GP thought it was RA, but that was dismissed due to lack of blood test confirmation and no swelling. She has been treated as UCTD for the last two years. Which means she has taken a lot of strong immunosuppressives: Methotrexate, Azathioprine, Leflunomide, as well as anti-malarials and daily prednisone. She is still on the prednisone and Hydroxychloroquine.
The prednisone does help with her daily condition, but none of the other meds appear to have helped, although she was allergic to the Methotrexate just as it appeared to be helping, and she took another medication called Quinacrine which helped significantly for a time, it meant she could work for a few hours a day again when she was on it. Quinacrine is an anti-malarial drug used in WW2 that has a stimulant aspect to it, so it is good for lupus sufferers who also have fatigue. It has occured to me that it could be a useful drug in ME/CFS as it treats underlying autoimmune conditions, and it is also a stimulant that treats fatigue. Unfortunately she was allergic to it, with skin peeling all over her body, so had to stop. It is a pretty serious allergic reaction which can have long term repercussions so it is very important to stop if you get lesions or skin peeling.
Anyway, I guess I'm wondering if her story sounds like it fits with ME/CFS, she doesn't have OI, or any muscle pain, her pain is exclusively in her joints from the elbows down, and the knees down. She certainly has the symptoms to be diagnosed as ME/CFS, but we wonder with the joint pain, and her initial diagnosis and treatments whether this is what she has, or what exactly it is. We're wondering if other people have a story similar to hers.
thanks.