Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I began as a part of this group a few days ago asking for suggestions on things to go over with my doctor after suspecting CFS as the culprit of the symptoms I have suffered for nearly eight years now. I appreciated your comments and how willing so many of you were to share your stories of what has worked or not worked for you. It helped me communicate with my doctor and he even commented on how I was able to articulate on the various aspects of symptoms and what others were faced with (SSI; handicapped placards for their vehicles, abbreviated work schedules, etc.)
I took my husband to the visit which the doctor appreciated since he knows us both well as individual patients and told us he appreciated having George there to hear his version of what he was seeing. It helped, too, that my husband brought up points I hadn't even thought to mention.
After spending well over an hour with the doctor we came up with a plan. First of all - he diagnosed me with CFS. I am not a candidate for Ritalyn, due to epileptic seizures. At this point I wasn't looking to add another medication to my current list. I am to start walking, but at short distances till I build up my endurance without going so far as to putting myself down for a day or two from overdoing. He reduced the amount of one of the medications I currently am taking, concerned the dosage may be too high and causing further exhaustion. He also will be writing a note to my employer stating I am to work no longer than the 8 hours per day my contract calls for. No more 12-14-16 hour days during the month of August as I prepare for the start of school (as the Office Manager). I plan to check with my union before I present this to my employer for fear of losing my job. I have an appt. previously scheduled with a neurologist in May and he wants me to have her take a thorough review of all medications I am currently taking to make sure we are not making my CFS worse with these. Best of all - he actually would like a follow-up appt. in June to see how I am doing. In the past it was let's run this test; followed by a phone call or letter that the test came back normal - and then that was it. No follow-up to check out what was this cause of the set of problems I was having.
I felt great after our visit. Like he listened and actually maybe learned something from me. I felt he wasn't into wasting my time on worthless additional tests or putting me off.
I don't treasure the diagnosis. But, knowing what I am dealing with will lessen the guilt and shame I have suffered these past years.
I know my symptoms go "up and down" - bad to worse. I'm curious from other sufferers if the "worse" days/times I experience now will continue to go down hill (as they have over these past few years). What have you experienced?
I'm open to any and all information on CFS. I'm looking to reliable support groups or information. My doctor agreed not enough research has been put into this condition (he says it all has to do with money to be made from doing so). I've always been a fighter, so would love to bring more attention to the devistation CFS creates for individuals and their families.
I took my husband to the visit which the doctor appreciated since he knows us both well as individual patients and told us he appreciated having George there to hear his version of what he was seeing. It helped, too, that my husband brought up points I hadn't even thought to mention.
After spending well over an hour with the doctor we came up with a plan. First of all - he diagnosed me with CFS. I am not a candidate for Ritalyn, due to epileptic seizures. At this point I wasn't looking to add another medication to my current list. I am to start walking, but at short distances till I build up my endurance without going so far as to putting myself down for a day or two from overdoing. He reduced the amount of one of the medications I currently am taking, concerned the dosage may be too high and causing further exhaustion. He also will be writing a note to my employer stating I am to work no longer than the 8 hours per day my contract calls for. No more 12-14-16 hour days during the month of August as I prepare for the start of school (as the Office Manager). I plan to check with my union before I present this to my employer for fear of losing my job. I have an appt. previously scheduled with a neurologist in May and he wants me to have her take a thorough review of all medications I am currently taking to make sure we are not making my CFS worse with these. Best of all - he actually would like a follow-up appt. in June to see how I am doing. In the past it was let's run this test; followed by a phone call or letter that the test came back normal - and then that was it. No follow-up to check out what was this cause of the set of problems I was having.
I felt great after our visit. Like he listened and actually maybe learned something from me. I felt he wasn't into wasting my time on worthless additional tests or putting me off.
I don't treasure the diagnosis. But, knowing what I am dealing with will lessen the guilt and shame I have suffered these past years.
I know my symptoms go "up and down" - bad to worse. I'm curious from other sufferers if the "worse" days/times I experience now will continue to go down hill (as they have over these past few years). What have you experienced?
I'm open to any and all information on CFS. I'm looking to reliable support groups or information. My doctor agreed not enough research has been put into this condition (he says it all has to do with money to be made from doing so). I've always been a fighter, so would love to bring more attention to the devistation CFS creates for individuals and their families.
The thing is that even after you find what is going on there isn't much that can be done. There just aren't that many treatment options - not enough research.
I don't know what you mean by 'reliable' support groups. Many are too sick to be on the boards all the time.
Balance problems? Oh no, I experience those. I was / am hoping it was my antidepressant.