Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Hi all, . Ninette, Coco (Candy), Connie, et al. I missed you all in the 3 weeks that I was at the Rehab Hospital. I was there to supposedly learn how to deal with this new diagnosis of Fibromyalgia, or rather to learn more pain management techniques and coping skills. It was an extremely unpleasant stay for me. The doctor to whom I spoke before the admission, the one who did the initial pre admission eval knew about my RLS as I told her about it and told her that it would be important for me to get a good amount of sleep and most important to continue with my meds. I say that because the first thing she wanted to do was to stop my meds. Unforutnately she knew nothing about RLS and didn't really seem to want to know. In spite of that I did notify the RLS Foundation and asked them to send her material on the subject and had it put in my chart. Unfortunately for me, the sleep condition was not taken into consideration at all and I was not at any time put into a room with a compatible roommate and ended up with roommates who, unfortunately, required around the clock care which in turn kept me awake most of the night for the whole three weeks that I was there. No matter how much I fought with the doctor about getting my room changed and the importance of getting enough sleep to deal/cope with the pain I just couldn't convince her of the importance of that. On the up side I did learn some about the Fibro and the did get something out of the exercise program there so that a lot of my pain was decreased and some of it even went away. Considering my PCP suspecting I had Fibor 2 years ago and I just didn't want to know for sure I was lucky to have gotten something out of the program. I left the hospital about 1 week earlier than scheduled because it seemed that my RLS syptoms, for some reaon or other, had started to get much worse again. I was getting them earlier in the day and evening. It was a little scary because I didn't know what was causing it. I thought maybe it was because of all the exercise I was doing but they were truly low aerobic and aqua-aerobic exercises and they weren't even in the evening. In any case I am home and am sleeping somwhat better and am trying to catch up on my email. One question I have is what is ICQ? I did see that in some of the digests I've had a chance to read so far. I guess the real reason I'm writing this is because I'm still feeling angry that a facility that deal with chronic pain could be so ignorant of the RLS and even more that they were not interested in learning about it. I am thinking I shall write to their main ofice in Alabama, or wherever they are, to let them know about this and to aks them to put some kind of blurb in their newsletter and notify their staff of this condition. I would even be willing to send them the material they would need as well as write something up for them for ther newsletters. If anyone has any suggestions I sure would appreciate them. Well, thanks all for listening to me ramble on. I'm sorry that I got so long winded. I know that's a hassle for some of you but I really did feel that some of this, at least, was important to pass on. I'm just about ready to go to bed so I'll say goodnight and hope that you all have a good night's rest. Kathy/Cambridge, 51 and 11 months (UCK, 1 month to go to 52) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 In a message dated 99-05-10 00:27:12 EDT, you write: << Unforutnately she knew nothing about RLS and didn't really seem to want to know. ........... I'm still feeling angry that a facility that deal with chronic pain could be so ignorant of the RLS and even more that they were not interested in learning about it. >> The whole thing sounds terrible! What rehab hospital was this? Thanks for warning us, and yes you should complain to them. Loudly. Marilee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 In a message dated 99-05-10 00:27:12 EDT, you write: << Unforutnately she knew nothing about RLS and didn't really seem to want to know. ........... I'm still feeling angry that a facility that deal with chronic pain could be so ignorant of the RLS and even more that they were not interested in learning about it. >> The whole thing sounds terrible! What rehab hospital was this? Thanks for warning us, and yes you should complain to them. Loudly. Marilee Quote Link to comment Share on other sites More sharing options...
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