Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 > t's unusual for someone your age to have polymyalgia rheumatica. On what > basis was the diagnosis made? > You must be 50 or over, our research shows.....and it usually goes away! (lucky you)! Pris ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 I received a diagnosis for my birthday: Polymyalgia Rhumatica , Rhumetoid arthritis and Tietse's syndrome. Anyone else here have Polymyalgia? What are your symptoms? Anything you do make it feel better?? What meds do u take?? I have known about the Tietse Syndrome since I was 12 so that's nothing new. Thank you ahead of time! Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 Happy Birthday, Kerry. I hope the coming year will be a healthier one for you. It's unusual for someone your age to have polymyalgia rheumatica. On what basis was the diagnosis made? Not an MD [ ] For my birthday... >I received a diagnosis for my birthday: Polymyalgia Rhumatica , Rhumetoid > arthritis and Tietse's syndrome. Anyone else here have Polymyalgia? > What > are your symptoms? Anything you do make it feel better?? What meds do u > take?? > > I have known about the Tietse Syndrome since I was 12 so that's nothing > new. > > > Thank you ahead of time! > > Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 Its for the most part a " guess " .. But the Dr wants to go with this diagnosis for right now, he wants to rerun all the bloodwork cause the Rhumetologist that I saw did NOTHING. So My general labeled me this until something else changes, or until the tests come back. He doesn't want to run the tests until I am completely off the Prednisone... I found it odd to that Poly, mainly occures over the age of 50.. Im 33.. Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 I am thinking it is probably a " guess " on the drs part until something else is decided on. More than likely the diagnosis will change again in 4 weeks when I go to see him again.. Kerry -------Original Message------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 That would be great to have that part go away ! The Ra is here to stay unfortunately and the tsetse syndrome has been here since I was 12, so I have had it for 21 yrs and its just now starting to bother me again, but I am sure its being irritated by the RA... What ya'll think? Kerry -- Re: [ ] For my birthday... > t's unusual for someone your age to have polymyalgia rheumatica. On what > basis was the diagnosis made? > You must be 50 or over, our research shows.....and it usually goes away! (lucky you)! Pris ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 Happy Birthday Kerry!!!! Tawny > > I received a diagnosis for my birthday: Polymyalgia Rhumatica , Rhumetoid > arthritis and Tietse's syndrome. Anyone else here have Polymyalgia? What > are your symptoms? Anything you do make it feel better?? What meds do u > take?? > > I have known about the Tietse Syndrome since I was 12 so that's nothing new. > > > Thank you ahead of time! > > Kerry > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 I'm so sorry that this happened to you Kerry. i've have never heard of what you have. i hope there is something that can do to help you. happy birthday tcbelvisalways love, martine Anyplace Is Paradise When I'm With You Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 I am thinking that it is probably Fybro not Poly but its showing up diffrentley than in most cases.. Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 Kerry, Not only does polymyalgia rheumatica occur almost exclusively in people 50 or older, the average age of those affected is around 70. What symptoms do you have that couldn't be explained by your physician's one guess of RA could be explained by his other guess of polymyalgia rheumatica? Not an MD Re: [ ] For my birthday... > Its for the most part a " guess " .. But the Dr wants to go with this > diagnosis > for right now, he wants to rerun all the bloodwork cause the Rhumetologist > that I saw did NOTHING. So My general labeled me this until something > else > changes, or until the tests come back. He doesn't want to run the tests > until I am completely off the Prednisone... I found it odd to that Poly, > mainly occures over the age of 50.. Im 33.. > > > Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 Kerry, what a birthday present! Hope it was a good one in every other way. I was dx'ed with Polymyalgia about 3 years ago, at age 55, since then I've read everything I can on it. My rheumy considered that an extremely young age, although looking back I think I may have had a couple of episodes much, much earlier that went away on their own, or responded to advil (I actually saw a rheumy when I was about your age that diagnosed a " inflamatory disorder " and put me on anti-inflamatories for a while). My current rheumy also said that it was virtually impossible to have both RA and Polymyalgia at the same time. Part of the diagnostic procedure was to rule everything else out, then try a high dose of prednisone for a short time. If the symptoms improved dramatically (i felt like I had taken a magic pill), then it's very likely it's PMR. If they don't, then it's not. For most people, PMR goes away in a couple of years. The treatment is mainly prednisone and pain medication. For a few - and I'm one of the unlucky ones - it just keeps on going, or changes into an " unspecified auto immune disorder " . My first visit to the rheumy, my sed rate was 92 but all the other blood work came back negative. It felt like every muscle from my neck to my knees had spasmed, and wouldn't release. I was so stiff I, I couldn't bend at all. My shoulders felt like rocks if you touched them. I also had a frozen shoulder (very common in PMR) and couldn't lift my right arm above my waist. The fatigue was so bad, I was exhausted just getting up and walking around the house for breakfast. I lost a lot of weight. It took me four doctors and over six months before I got the dx. The good news is that, for most people, PMR does go into remission after a couple of years. It also doesn't do any damage to the joints, like RA does. It's just very painful and turns you into a vegetable while it lasts. Prednisone controlled it somewhat for me, but I had lots of problems from that - osteoporosis and diabetes being the main ones. So I went on MTX, and later Humira, which are not normally used for PMR but they have really helped me. I also was dx'ed with fibro, which my rheumy says is very common with PMR. I took pain medication constantly for a couple of years, but now I only take an occasional vicodin. I take Celexa, an anti-depressant, both for the effects of the prednisone and because it's also a good pain med. Something about incresing serotonin, but I can't remember now exactly how it works. Beside the medications, I find that accupuncture and massage help a lot. HEAT! to help relax the muscles, I love a jacuzzi. I did warm water exercise classes at the Y for a while, they were great. I also use a heating pad almost every morning while I check my email. I take a lot of supplements, B vitamins, folic acid, Vit E and C, calcium, etc. Both my PCP and my rheumy insist that sleep is extremely important, and I take a sleep aid if necessary. I also nap often, I find I can sleep 10-11 hours some days, between night and napping. I try to pace myself, and not overdo it. It's frustrating, but I've learned to manage it and go on with a modified lifestyle. Good luck with whatever you have, hope you can get a better idea of a treatment plan soon! On 6/8/07, ~Kerry~ <kerry-lane@...> wrote: > > I received a diagnosis for my birthday: Polymyalgia Rhumatica , > Rhumetoid > arthritis and Tietse's syndrome. Anyone else here have Polymyalgia? What > are your symptoms? Anything you do make it feel better?? What meds do u > take?? > > I have known about the Tietse Syndrome since I was 12 so that's nothing > new. > > > Thank you ahead of time! > > Kerry > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2007 Report Share Posted June 10, 2007 In a message dated 6/9/2007 8:05:33 A.M. Central Daylight Time, kerry-lane@... writes: I received a diagnosis for my birthday: Polymyalgia Rhumatica , Rhumetoid arthritis and Tietse's syndrome. Anyone else here have Polymyalgia? What are your symptoms? Anything you do make it feel better?? What meds do u take?? I have known about the Tietse Syndrome since I was 12 so that's nothing new.. Thank you ahead of time! Kerry Dang sounds like the kind of birthday presents I get. *wry grin* Seriously, I'm very sorry about your new dx's. I don't know anything about any of them. Oh and I'm new. AmySee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2007 Report Share Posted June 10, 2007 With everything I have read, I do not think that is what it is, because I don't have a lot of what comes with it..My shoulders don't hurt, my hips don t hurt... Just every other joint and bend I have... CONSTANTLY. I have been on @least 20mg prednisone (up to 60) for 6months and I am the same... I am thinking the diagnosis is wrong.. I am thinking that its just nasty RA, and maybe Fybro. I dunno but what can I do?? Just sit back and eat pills I guess..I have taken 35 Vicoden in the last 7 days... *sigh* and the Dr said I can take 7.5's every 3 hrs for the pain... (Im eating 5's now didn't get the others filled yet). Thanks for responding .. Kerry Quote Link to comment Share on other sites More sharing options...
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