Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 I was at the my regular Dr. today and on top of my RA she is telling me I have all the signs of Fibromyalgia. She wants my rhumy to comfirm this. I don't go back to her till 4-29 though. My reg ular Dr. did finaly give me somthing to help my pain and to help me to sleep at night. We will see if it works. I also got a email from one of my wifes friend about some new treatment for RA. I did not have to much time to look at it but I will give out the web sight. http://www.controlra.com/ If any one has any insight on the Fibromyalgia thing I would love to hear it. Thanks Jeff R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2003 Report Share Posted April 14, 2003 > I was at the my regular Dr. today and on top of my RA she is telling > me I have all the signs of Fibromyalgia. She wants my rhumy to > comfirm this. I don't go back to her till 4-29 though. My reg ular > Dr. did finaly give me somthing to help my pain and to help me to > sleep at night. We will see if it works. I also got a email from one > of my wifes friend about some new treatment for RA. I did not have to > much time to look at it but I will give out the web sight. > http://www.controlra.com/ > If any one has any insight on the Fibromyalgia thing I would love to > hear it. Thanks Jeff R Hello, Jeff. I just found this group today and signed up. I also have ra, fibromyalgia, sleep apnea and hyper thyroid disease. I will be 60 in June; and all this was diagnosed since 1998. I am retired; partly because of health reasons. I want to share that I have no pain; from either fibromyalgia or ra since I am on the following combination of meds; the latest I started just one month ago. My rheumatologist does a great deal of research into fibromyalgia; and he started me on mirapex. It's a " fairly new " drug; which is supposed to help you sleep. His theory (and I think it's fairly well accepted now) is that almost all fm patients suffer from some sort of sleeping disorder. He sent me to a sleep clinic where it was determined that I have pretty severe sleep apnea and nervous leg (kicking in my sleep) syndrome; and I do not get a full night's rest. I can go to sleep; but wake myself up a million times a night without even knowing it. I have been on prednizone for three years, started at 20 mg per day and got down to 6. Hoewever, anytime he tried to wean me below 6 mgs per day the pain came back. One month ago; he put me on enbrel; a manmade protein that you give to yourself twice a week through subcutaneous shots. It's an experimental drug; and very expensive; but I got into a study group for 4 months; after which we will tackle my insurance company to pay for it because IT IS WORKING! Now, whether I get a good night's sleep or not; I have no pain from the ra or the fibromyalgia. The ennbrel is for the RA, and the Mirapex is for the Fibromyalgia. I am a brand new woman. I got ra later in life than most people do; and it's believed that when my endocrine system went kind of haywire with the hyper thyroid; all the other stuff came too. However, everything was greatly aggrivated by a couple of years of absolute horrific stress. I won't bother you with all the stuff that happened in our family within a two year period; but it involved death, divorce, traumatic accidents; heart attacks in a young person, etc. etc. ad nauseum. My doc is convinced that stress has a lot to do with these illnesses; but he believes even more strongly that sleeping disorders may be the real culprit at the heart of the matter; and you must solve that problem to get any real relief; particularly from fibromyalgia. Well; this has been long; but maybe somebody needs to hear a success story. Now I only have to see my doc every three months, instead of every month; and we are slowly (to be safe because of withdrawal symptoms) weaning me totally off of prednizone. Good luck to all in your search for real relief. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 I cannot say whether you should or should not put the helmet back on or not. I just wanted to share my experience. Kennedy has developed a significant bump where her velcro is and our ortho said that it is fluid. She said that the band has to grab on somewhere and that they frequently see a bump in that area. She assured me that it will go away after treatment is complete and it does not bother Kennedy and is not painful to her, so I am trusting that it will go away. I hope that is what you are dealing with as well. Hopefully someone can post something more helpful to you! Good luck! Christy - mom to Kennedy DOC band 11/23/04 Tulsa, OKgoldnvalli <goldnvalli@...> wrote: I just took the helmet off of my daughter and noticed that on the right side where the velcro is there seems to be a bump right above her ear. I spoke to the doctor and he said that if the bump is covered by the helmet than don't use it again until he sees it, but it doesn't cover the bump. He said that as the head molds bumps will appear and disappear. He wants me to go see him first thing Monday morning. Should I put the helmet back on or wait until monday?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 Like Christy mentioned, it is very common to have a fluid filled bump. They usually go away on their own but it is definately worth mentioning to your orthotist/clinician. Natasha --- In Plagiocephaly , " goldnvalli " <goldnvalli@a...> wrote: > > I just took the helmet off of my daughter and noticed that on the > right side where the velcro is there seems to be a bump right above > her ear. I spoke to the doctor and he said that if the bump is > covered by the helmet than don't use it again until he sees it, but > it doesn't cover the bump. He said that as the head molds bumps will > appear and disappear. He wants me to go see him first thing Monday > morning. Should I put the helmet back on or wait until monday? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 Hi I agree with everyone else here in that it sounds like it's a fluid pocket. My daughter also had this, and it goes away when you are done. Let us know what your ortho sais tomorrow. Sandy Willow's Mom Cranio Germany Grad Torticollis resolved http://www.geocities.com/samipa74/Willow_Lanette.html --- In Plagiocephaly , " goldnvalli " <goldnvalli@a...> wrote: > > I just took the helmet off of my daughter and noticed that on the > right side where the velcro is there seems to be a bump right above > her ear. I spoke to the doctor and he said that if the bump is > covered by the helmet than don't use it again until he sees it, but > it doesn't cover the bump. He said that as the head molds bumps will > appear and disappear. He wants me to go see him first thing Monday > morning. Should I put the helmet back on or wait until monday? > > Quote Link to comment Share on other sites More sharing options...
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