Hi Mel. I help moderate the lupus forum, but was diagnosed with CFS long before I had symptoms of lupus. It's sad to say that I know way more about
lupus than CFS and I have had CFS much longer.
The only advice I have is probably the same advice you get for fibro, which is to pace yourself and listen to your body. The big difference I have read about
between fibro and CFS is exercise. I think exercise is encouraged and is good for fibro. WIth CFS exercise is encouraged if your body can tollerate it, but a lot of people with CFS feel worse with exercise, so it's a difficult balance because you want to exercise so you don't have any muscle wasting.
I'm curious how your doctor diagnosed CFS for you. I don't know much about
the diagnostic process. THe doctor who diagnosed me in 1991 didn't tell me what he thought I had and I left the appointment with him feeling very discouraged. I was seeing a counselor at the time because I was feeling so discouraged about
feeling so tired and sick and having fevers. She got a copy of my medical records and told me that the doctor had diagnosed me with CFS. MY diagnosis came a few years after the medical community first started recognizing and diagnosing CFS. I never had a follow-up with that doctor and didn't think there was much anyone could do for my symptoms. After a few years I pretty much went into remission and had a fairly normal life aside from needing more rest than the average person. about
2 1/2 years ago I got really sick and have a lot of labs and symptoms that indicate lupus, but my rheumy also thinks my CFS is also back in full force.
I have done some reading and I think there are a lot of similarities between fibro & CFS, but there are also differences. I know that some people speculate they are the same illness, but my personal opinion is that there are very real differences between the two.
Anyway, that's my story. Is your doctor going to change anything or add any meds for your treatment?
Diagnosis: Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain
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