Hi,
I think my CFS started after a partial hysterectomy 2 1/2 years ago, but I might have had it before.
After the surgery (which was due to fibroids, dysemorrhea, severe pain and daily bleeding), I got an infection that took several different antibiotics and several months to get rid of. At first I attributed my tiredness to that. I thought I was just slow in rtecovering. but instead of getting better the symptoms got worse...extreme fatigue, joint pain, swollen lymph nodes (turns out these were actually blocked salivary glands, due to inflammation). Before the surgery I had been riding my exercise bike at least 5 times a week for the previous 15+ years. I was a hard-core gardener, occasional runner, hiker, and an opera singer.
After the surgery, my life started falling away piece by piece. I found that even a short bike ride on low resistance left me completely exhausted to the point of immobility. The first year I had my husband dig my vegetable garden beds, but the second year I couldn't even do minor weeding and watering. Last year I managed to get through the opera production rehearsals/performances but the use of a LOT of caffeine and occasional sudafed. This year I barely made it through the audition and ended up having to pull out of the production.
I got on intermittent leave through my work (I work at a school) but I am taking more and more time. I've missed the last week entirely.
I have seen the same doctor for over 10 years. She has been great until recently. She ordered me all the tests, sent me to all the specialists, and I was finally diagnosed with CFS in November. Unfortunately, the rheumatologist who gave me the diagnosis refuses to treat people with this disease, and it turns out there is no rheumatologist in Albuquerque who does. Nor is there an internist or anyone else. My primary doc is just a GP. I understand that this is a complicated illness and that it is reasonable that she wouldn't be happy about treating it, as I am not happy about having it! But there is no one else... she recently referred me to an internist who she had heard had some experience with CFS, but when I went to see him he denied this and sent me back to my GP. In the meantime, my GP took me off of her patient list! She just doesn't want to deal with my illness.
I have paperwork due to my work every 20 days, and that runs out in April. I am looking at maybe having to take a LOA and/or get disability. All of that requires paperwork and a doctor to help! Not to mention the medicines etc.
I am pretty well beside myself. I have requested that she call me and I am waiting to hear from her. It seems that there would be an ethical if not legal obligation for her to keep treating me in the absence of anyone more qualified being available.
I have posted everywhere looking for a doctor, called my insurance, called the other main insurance co here... it appears there are just no doctors that treat (let alone specialize) in CFS. If anyone can think of something that might help me I'd be grateful.
I think my CFS started after a partial hysterectomy 2 1/2 years ago, but I might have had it before.
After the surgery (which was due to fibroids, dysemorrhea, severe pain and daily bleeding), I got an infection that took several different antibiotics and several months to get rid of. At first I attributed my tiredness to that. I thought I was just slow in rtecovering. but instead of getting better the symptoms got worse...extreme fatigue, joint pain, swollen lymph nodes (turns out these were actually blocked salivary glands, due to inflammation). Before the surgery I had been riding my exercise bike at least 5 times a week for the previous 15+ years. I was a hard-core gardener, occasional runner, hiker, and an opera singer.
After the surgery, my life started falling away piece by piece. I found that even a short bike ride on low resistance left me completely exhausted to the point of immobility. The first year I had my husband dig my vegetable garden beds, but the second year I couldn't even do minor weeding and watering. Last year I managed to get through the opera production rehearsals/performances but the use of a LOT of caffeine and occasional sudafed. This year I barely made it through the audition and ended up having to pull out of the production.
I got on intermittent leave through my work (I work at a school) but I am taking more and more time. I've missed the last week entirely.
I have seen the same doctor for over 10 years. She has been great until recently. She ordered me all the tests, sent me to all the specialists, and I was finally diagnosed with CFS in November. Unfortunately, the rheumatologist who gave me the diagnosis refuses to treat people with this disease, and it turns out there is no rheumatologist in Albuquerque who does. Nor is there an internist or anyone else. My primary doc is just a GP. I understand that this is a complicated illness and that it is reasonable that she wouldn't be happy about treating it, as I am not happy about having it! But there is no one else... she recently referred me to an internist who she had heard had some experience with CFS, but when I went to see him he denied this and sent me back to my GP. In the meantime, my GP took me off of her patient list! She just doesn't want to deal with my illness.
I have paperwork due to my work every 20 days, and that runs out in April. I am looking at maybe having to take a LOA and/or get disability. All of that requires paperwork and a doctor to help! Not to mention the medicines etc.
I am pretty well beside myself. I have requested that she call me and I am waiting to hear from her. It seems that there would be an ethical if not legal obligation for her to keep treating me in the absence of anyone more qualified being available.
I have posted everywhere looking for a doctor, called my insurance, called the other main insurance co here... it appears there are just no doctors that treat (let alone specialize) in CFS. If anyone can think of something that might help me I'd be grateful.
