Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Jen - I too have the RSD in all four extremities now, though to varying degrees so I never get the "paralyzed" feeling. Though I must admit that if all four were as bad as my right leg, I'd lose my mind (and I mean that in the literal sense, not the joking way) so I really feel for you. As for the other symptoms you describe, there are some of the meds they give us that can actually cause hair loss as well. The slowing of the hair growth when you shave and the breaking nails.......those are symptoms of RSD. If you go to www.rsds.org you'll find listed as symptoms of RSD - it can cause excess hair growth and thickening of nails, or decreased hair growth and brittleness of nails. Don't ask why both, cause you'll never get a suitable answer....suffice to say the doc who told you it wasn't related is a quack. And you're right as well, when you say there is no "cure" for RSD. However, there are some whose treatment can bring them to the wonderful land of "remission" where the symptoms are under control. A place we all hope to visit someday Have a good one. TriciaJen wrote: hi group... I was just curious.. do any of you ever have days wereyou're basically paralyzed? I have my RSD in all 4 extremities and Ihave days that I can't move my arms or legs due to stiffness and pain.Recently, the hair on my head has been falling out a little more thanusual, my hair when I shave doesn't grow back as quickly and my nailsbreak easily (which they didn't do before)... Do any of you have someof these symptoms? My WC doctor (who believes he knows EVERYTHINGabout RSD) says that all of these symptoms are psychological and arenot related to RSD at all. He also said that I USED to have RSD, butnow I'm cured. (If I remember correctly, every person I've ever talkedto that knows anything about RSD, even the doctors that diagnosed me,have said that it's NOT curable). But, the doctor this morning made mequite angry, so I thought I'd go to the next best source about thesymptoms... the people that have it. Thank you for your help.Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Jen, Yes, I have experienced that. Recently I rode in the back of the van on the mat and tried to get out of the car at the store. Keep in mind that I got in the car just 30 minutes before. Once helped me up I tried to take a step and I could not separate my legs to take that step. They were locked in place. I have it from head to toe. I ended up shuffling my feet to move forward to get to the electric cart in the store to get to the RX for pain meds. I was crying all the way. I did come out of it two days later. To have this " lock up " and not be able to move is frightening besides painful. As for the hair fallout I have had that problem for some years now even while in remission and before I developed RSD. I was around 30 the first time I went through a few years of falling and thinning then stablized. Then at 44 when RSD came on I went through another falling and change. About two years ago (ten years after the beginning of RSD) it started again and hasn't stopped. Believe it or not the texture has even changed to curly. It is very thin and fine. I've cried my share over that, too. Purely vanity. It is a difficult thing to deal with hair loss especially for a woman. It is all tied up in being feminine and really messes with your head. When I first developed RSD within the first few months my nails on my right foot changed and had ridges and the hair growth on my leg changed to a thicker denser hair. It was weird. Later I read about all these additonal symptoms that were sometimes present but didn't have to be to support a RSD diagnosis. I don't know if you have heard but I also call myself " The pin lady " I have a map with everyone who cares to be pinned on my map. It gives me a closer feeling of relationship and getting to know each one of you better in my own way. On occasion for " special cases " I have used my " other pins " to send a message to the not-so- good doctors out there! LOL ly, I think your DR is a horse's -- -- Just ask around this group and then make your request. I'll stick it to him, GOOD! With love, Lyn " Jen " <jdstephenson@m...> wrote: > > you're basically paralyzed? > hair on my head has been falling out a little more than usual, hair when I shave doesn't grow back as quickly nails break easily (which they didn't do before). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Jen, I have it in all 4 limbs, plus my back and internally in my abdomen. I just passed my 4th anniversary of this crap....and I WISH it was curable! You can feel free to print this email off and take it to that doctor and show it to him if you want......I don't care. RSD IS NOT CURABLE! It can go into remission.....but that's it. There is a difference....a BIG Difference. My Doctor has been Treating RSD Patients for 20 years and goes and see's Dr. Schwartzman about 3 times a year to get updated on anything new.....So, if there actually WAS a cure, I'd hear about it! Between my back and my right leg, I have had the paralyzed feeling....thankfully my left leg and arms has never had the same degree of pain as my right leg has. It all started in my right leg, and so everything has been worse in that leg. My Arms has had the paralyzed feelings only in the mornings after I have laid on them all night. I don't roll around from one position to another in my sleep anymore.....however I lay down to fall asleep is exactly how I wake up. And, so that leg and arm is always like "paralyzed" in the morning and is un-movable for about 30 minutes. The same thing with my right leg after riding in the back seat of a van. my leg and back cramp up bad enough that getting out of the van is like almost impossible. I am on medications and have blocks done once a month...... Good luck, and tell your doctor that he isn't God.....he needs to listen to YOU, YOU pay HIM, he needs to start doing some actual Research and do his job for once! Tonia -------Original Message------- Jen wrote: hi group... I was just curious.. do any of you ever have days wereyou're basically paralyzed? I have my RSD in all 4 extremities and Ihave days that I can't move my arms or legs due to stiffness and pain.Recently, the hair on my head has been falling out a little more thanusual, my hair when I shave doesn't grow back as quickly and my nailsbreak easily (which they didn't do before)... Do any of you have someof these symptoms? My WC doctor (who believes he knows EVERYTHINGabout RSD) says that all of these symptoms are psychological and arenot related to RSD at all. He also said that I USED to have RSD, butnow I'm cured. (If I remember correctly, every person I've ever talkedto that knows anything about RSD, even the doctors that diagnosed me,have said that it's NOT curable). But, the doctor this morning made mequite angry, so I thought I'd go to the next best source about thesymptoms... the people that have it. Thank you for your help.Jen ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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