Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Lynne, It doesn't sound a lot like RA, but it could be early. Was Ehlers-Danlos syndrome ruled out? Not an MD On Wed, Jun 18, 2008 at 6:58 PM, Lynne <lynneeve@...> wrote: > Female age 59. Subject of RA came up as a big surprise at doctor > appt for horrible chest infection 4 mos ago. This was a new doctor > for me and from history and exam he strongly suspected Ehlers-Danlos > (so many joint dislocations) and also RA (for various reasons). > Tested me for all kinds of things and RF was positive. The pain and > stiffness in both hands and feet is a brand new thing concurrent > with the February lung infection. > > Referred to a rheumatologist who doubted RA. He ran tests to rule > out everything else that could cause the positive RF and didn't find > anything else. But because he did not see swelling and redness, he > thinks I do not have RA. Part of the problem with diagnosing me is > always that I don't seem to feel pain in the same way other people > do ... it doesn't necessarily " hurt " me when my joints are squeezed, > even though the same joints hurt very much when they are not > squeezed. The squeezing can feel good to me, like massage. I admit > that I said it did not hurt when he squeezed my hands. Anyway, he > seemed to believe me that there was something wrong, but he thinks > it is osteo and asked if I wanted anything for pain. I declined, > since I wasn't doing badly that day (3 weeks ago) and my pain was > not constant. > > My GP was surprised by the Rheum's report when I saw him for a > follow up last week; he said my symptoms sound much more like RA > than osteo. I kind of shrugged it off because I am not anxious to > get a diagnosis like RA. But ... the last two days I have been in > almost agony. I am pretty much ok when I'm moving around, but I > cannot sleep or sit still because of the pain (in my toes at the > moment, especially, but hands and back are annoying me too). > > Other odd thing, I seem to have a constantly low body temp -- > doesn't go over 97.3, and this must have been going on for a long > time because I remember throwing away a thermometer about 5 years > ago because I couldn't get it to 98 -- thought it must be defective, > lol. Thyroid tested ok, and neither of my doctors has commented on > the temperature thing. Everything else tests ok for me. I haven't > had any prior health problems except for many joint dislocations and > some broken bones, and am not taking any medicines. > > Does this sound like RA? Do you think I should I go back to the > Rheum guy and lay it on thicker? Or wait until this either goes away > (wouldn't that be nice) or gets bad enough for him to see it for > himself? I can put up with a lot of discomfort, but I have to get > some sleep. Thanks ... Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Thank you for answering, . The EDS is kind of up in the air; the rheum MD has never personally seen a case of it and from reading his book, he thinks I probably have benign hypermobility instead of hypermobility type EDS. But, a lot of experts think that is a distinction without a difference. The only matter is that EDS has complications with heart trouble, whereas benign-H does not. Since there is no treatment for EDS, so I'm not worked up about the diagnosis at this stage in my life. Mainly, it is interesting to finally have a reason for all the " falling apart " I experienced all my life. Whatever is attacking my feet is something besides EDS, but to me it does not sound like garden variety osteo-arthritis because it goes after all 10 toes at the same time, and comes and goes at random. I guess I'll wait and see what, if anything, happens next. Thanks again, Lynne > > Lynne, > > It doesn't sound a lot like RA, but it could be early. > > Was Ehlers-Danlos syndrome ruled out? > > > > Not an MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hi Lynne, Just some more imput from a retired doc in UK,( friend of an RA sufferer without computer, joined on her behalf). Hope you dom't mind. For what it's worth, I would go with the 'benign'??( is it so)  hyper elasticity rather than EDS. I believe this connects with a certain make up and genetic tendency to develop auto immune collagen disorders, including RA and SLE. I have a personal awareness here as I have myself always had hyper extensive joints, although they have not dislocated, and unusual delayed skin sensitivities so I can't colour my hair. My sister has had frank SLE and auto immune hypo thyroidism. My friend who has recently developed RA also has just this joint laxity, so the elbows swing outwards when wrists are on the floor. My understanding is that EDS is quite different and don't believe it has an immune component. Again , although everyone is different, my friend did have a run of respiratory infections and extreme fatigue with variable joint symptoms for some months before the diagnosis( in her case RA)  became clear. Good luck, Chris [ ] Re: Intro and What to do? Thank you for answering, . The EDS is kind of up in the air; the rheum MD has never personally seen a case of it and from reading his book, he thinks I probably have benign hypermobility instead of hypermobility type EDS. But, a lot of experts think that is a distinction without a difference. The only matter is that EDS has complications with heart trouble, whereas benign-H does not. Since there is no treatment for EDS, so I'm not worked up about the diagnosis at this stage in my life. Mainly, it is interesting to finally have a reason for all the " falling apart " I experienced all my life. Whatever is attacking my feet is something besides EDS, but to me it does not sound like garden variety osteo-arthritis because it goes after all 10 toes at the same time, and comes and goes at random. I guess I'll wait and see what, if anything, happens next. Thanks again, Lynne > > Lynne, > > It doesn't sound a lot like RA, but it could be early. > > Was Ehlers-Danlos syndrome ruled out? > > > > Not an MD __________________________________________________________ Sent from . A Smarter Email http://uk.docs./nowyoucan.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Thank you very much, Dr. that is interesting. It makes sense that all " this " could be related, although I wasn't thinking that originally. I didn't mention that I have splotchy, mottled skin (all over) that is also somewhat " stretchy, " and that is something else that puzzled my GP and made him think EDS. My dislocations have given me a " do not touch me! " personality, since a hand-shake can dislocate my shoulder and every dental appointment means a dislocated jaw. I have not gone to doctors over the years, except when necessary to the ER for dislocations or broken bones, because they always " break " me and then get annoyed at me. So odd that nobody ever seemed to notice that this was any kind of a " condition " as opposed to extreme clumsiness on my part, until this one GP a few months ago. (Boy, do I like him!) ... > > Hi Lynne, > Just some more imput from a retired doc in UK,( friend of an RA sufferer without computer, joined on her behalf). Hope you dom't mind. > For what it's worth, I would go with the 'benign'??( is it so)  hyper elasticity rather than EDS. I believe this connects with a certain make up and genetic tendency to develop auto immune collagen disorders, including RA and SLE. ... Quote Link to comment Share on other sites More sharing options...
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