Okay, I need some info and there is no category any any RA book for jello legs...After 4 days of intense hip/knee pain, the joint pain has receeded, but now my thighs feel like jello. I am seriously concerned about falling. Where did this new fun symptom come from? Do I need to be concerned enough to call the RD, or wait it out until mid Jan? GGGRRRRR what a fun disease....you get to play "what is the symptom of the day!" (sorry for the small vent, I am seriously stressed!)
Thanks for any ideas and advice!
Laura T
Call the doctor. They might not get you in any earlier, but they might have an answer to the "jello syndrome." You pretty much are in the diagnosis stage of your illness. You having this problem could indicate other problems besides RA or a need to move your treatment along quicker. Any progress since you posted?My arms and legs get that jello feeling often as well. I have mentioned it to the rheumy and she either says its from too much steroids or not enough?!It is because of the last that I think you should notify your doctor because MS and RA have some overlapping symptoms. Since you are early in your diagnosis, this may have some relevence. Even some meds can cause muscle weakness or being anemic. It's better to check it out.
Emphasize that you feel like you are going to fall. This is a "heads up" with doctors because if you warn them that you are afraid of this and then something was to happen, they could be sued.
Sometimes, it is just because we are so worn down and we need rest from all activities. But still a doctor needs to check this out.
So, the RD finally gets back with me. Turns out its the steroids they started me on yesterday for pain causing the jello legs. BUT, and this is the part that pisses me off...It isn't called prednizone, its called something else, but its really prednizone. ANd this after I specifically told him that I wanted to try to stay off of pred if I could, and he prescribed it anyway, just with a different name. GGGGRRRRR!!!
Oh, and while I am ranting.... Has anyone else seen the commercial about the "two choices of RA", which basically portray the "wrong" drug choice woman hobbling down the street, or the "right" drug choice woman happily trotting along. It made me so made I wanted to throw something.....Like its as easy as taking the "right" drugs. Of course its sponsored by the drug companies.....
I haven't seen this commercial, but I keep hearing about it. It sure sounds like irresponsible advertising, I mean way more irresponsible than normally irresponsible advertising. And it sure doesn't do us any favors. Hush dear, take the right drug, you'll be fine. Would anyone dare run a similarly irresponsible ad for a cancer drug?
The website is www.twofutures.com It doesn't say what drug it is for. But the pharmacuetical company is Amgen/Wyeth.
Yes, I hate that commercial as well. All of the biological commercials do us a big disservice because they plant it in the minds of others that this illness can be easily treated and that you can regain you former life. That is hogwash. The treatments have major dangers and not everyone can take them and for some people they just don't work. It just makes explaining your illness all the more difficult.