Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 In a message dated 10/17/1999 5:28:12 PM !!!First Boot!!!, cjswartz@... writes: << I'm new to the list and this is my first post. I was wondering if anyone else has spondylitis. >> Dear Cheryl I have that too, and don't know if there is a difference. I've had that since early 1970's, but the Chiropracter did not ever say anything about PA as cause. He probably did not know the cause. In 1996, I was dx'd with PA and at 1st tried some sort of drugs. My lower back improved significantly in regards to my ability to walk twice as far as before the drugs. That's when my Rhemy said that my spondylitis had to be caused by PA or it would not have responded to the drug. I only took drugs the 1st few months, and have not sinced, as they are by far more dangerous than PA. However, I am going back to talk to my Rhemy about some of these things soon. Kind regards, Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 There is a form of PA that is called Spondylitis and it is the form when the spine is involved primarily. It is different from the type of arthritis called Ankylosing Spondylitis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Dear Cheryl I too was told I have spondylitis, which in simple terms - inflammation of the spine. Spondylitis is one of the five types of PA. I also think spondylitis means any inflammation of the spine..... you can have inflammation without having AS. I think they look for other symptoms to determine which one you have....since I have psoriasis they chose PA....but note, my symptons are only in the lower back, especially sacroiliac. If this doesn't help...you can know that you are not alone! Jayne cjswartz@... wrote: > From: cjswartz@... > > Hello everybody, > I'm new to the list and this is my first post. I was wondering if anyone else has spondylitis. > My rheumy told me last week that I have spondylitis. He did not say " Ankylosing Spondylitis " . > Is there a difference? > Cheryl > > > Please visit our new web page at: > http://www.wpunj.edu/icip/pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 I have no idea if there is a difference between S and AS, but I have AS. Psoriatic Arthritis is my primary diagnosis but ankylosing spondilitis is in there somewhere as well. Both diseases are treated the same ways, with NSAIDs, DMARDs, and exercise, so I don't even know if it matters that I have the seperate diagnoses -- I have a feeling I'd be under the same treatment if I had PA and AS or just one or the other. As far as daily life goes I can't say which is worse --the AS in my back or the PA in my hands and feet. There is no way of living without use of back, hands and feet, so I am screwed every which way. Hope you are doing better than that! RAH --- cjswartz@... wrote: > Hello everybody, > I'm new to the list and this is my first post. I > was wondering if anyone else has spondylitis. > My rheumy told me last week that I have spondylitis. > He did not say " Ankylosing Spondylitis " . > Is there a difference? > Cheryl > > ------------------------------------------------------------------------ > Please visit our new web page at: > http://www.wpunj.edu/icip/pa > <HR> <html> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 1999 Report Share Posted October 20, 1999 Someone already mentioned the great spondylitis site at www.spondylitis.org Even if you don'y have spondylitis, it is worth it to go to that site and hear their little theme song. It takes a little time to download the song to your computer, but again, it IS worth it. To give you a little hint, the song is entitled " We Know How You Feel " It is a great pick-me-up when the body has got ya down. Give it a try and PLEASE let me know what you think. (I've referred this site to to others and never heard back. Tell me, should I keep referring to that site or am I the only one enjoying it??) LaRita Thought from LaRita " it's all right letting yourself go as long as you can let yourself back. " Mick Jagger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1999 Report Share Posted December 14, 1999 Hi Lee Ann, I have two of these pea sized knots in the palm of my hand, below my middle and ring finger. I just developed them a few weeks ago and won't be able to ask my doc what they are until my appointment next week. This is the first time that I've got these kind of knots. Maybe someone else has had this problem and will tell us both what causes these knots. Vicki Lee Ann Walter wrote: > From: " Lee Ann Walter " <SAWalter@...> > > Do those of you who have Spondylitis have little knots on your > lower back that feel about the size of a pea? I have a few on my > lower back in the area where the pain is so bad. I am just > wondering if they have anything to do with the PA. My x-ray of > my back showed no damage, so I am not sure what to think. I have > no said anything to the doctor about the little lumps. Maybe I > should. > > Lee Ann > > > Please visit our new web page at: > http://www.wpunj.edu/icip/pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 1999 Report Share Posted December 19, 1999 LeeAnn, I have three of these pea sized knots on my head. I went to the doctor and he tried to burn them off. They are still here. I'm not sure what to do next. They are more annoying than painful. Though brushing my thinning hair, can irritate them a bit. I went and had x-rays done and felt so vindicated at the doctor's office, when the doc I saw seemed to understand my pain and could tell where my joints were hurting just by looking at them or touching them. The intern doc, seemed so clueless. (I go to Stanford.) They took x-rays because they said I had all of the symptoms of Ankylosing Spondilitis. When I read about it on the net, I couldn't have agreed more. It made sense to my physical therapist and my internist as well as my pain management doc. Then when I went back to Stanford, she said (the intern), that my x-rays looked pristine. I was shocked! The gal doing my x-rays had commented on my arthritis when she was doing them. I still don't know what to think. It's not like I want anything else wrong with me, but come on I'm a classic case and I'm beginning to wonder if she had the right x-rays. My orthopedic had x-rays done a few months ago of my lower back and sac area. Both showed arthritis. Go figure! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 AmyDeel@... wrote: > <snip> I had x-rays done and felt so vindicated <snip> > when the doc ... to understand my pain and could tell where my > joints were hurting just by looking at them or touching them. The intern > doc, seemed so clueless. <snip> It made sense to my physical > therapist and my internist as well as my pain management doc. Then <snip> > the intern (said) that my x-rays looked pristine. > I was shocked! The gal doing my x-rays had commented on my arthritis when > she was doing them. I still don't know what to think. <snip> > My orthopedic had x-rays done a few > months ago of my lower back and sac area. Both showed arthritis. Go figure! And people wonder why I'm so disillusioned with doctors!! Can the one doctor overrule the opinion of all those others you mentioned? BTW: I'm developing little knots on the left thumb joint that's tender to touch. And now I'm finding (by touch) little blisters on my scalp. ??? Anyone have any ideas???? I'm about convinced that my body is falling apart and there's little to do about it but make the best of my energy and time. Patty Bacon in the rainy Pineywoods of East Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 1999 Report Share Posted December 21, 1999 >>>>>BTW: I'm developing little knots on the left thumb joint that's tender to touch. And now I'm finding (by touch) little blisters on my scalp. ??? Anyone have any ideas???? I'm about convinced that my body is falling apart and there's little to do about it but make the best of my energy and time. Patty Bacon in the rainy Pineywoods of East Texas<<<< Hi Patty, I have a knot developing on my middle finger on my left hand at the big middle knuckle. It gets better and then worse depending on the weather. I have the blisters on my scalp. Actually along my hair line. My doctor says it is the psoriasis. If you look at the different types of psoriasis there is a type with blisters. I guess that accounts for my hair loss too. Lee Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 --- Kirsten <kirstenmj@...> wrote: > My question is: what does it feel like? Whenever I > move my head, I can hear bones rubbing together. Hi Kirsten -- I have both PA and AS and can approach this -- no, I do not experience pain when I turn my head, and I do not hear bones rubbing together. AS affects the sacroiliac joints, which are all the way south, just above 'yer butt, on both side of the spine. If you've got it, you'll know it! More below -- > The rheumy had said there's nothing that can be > done. The bones will fuse together eventually > and then it won't hurt after that. > I don't want the bones to fuse. Whaaaaale -- yes and no. In the long run your rheumy is right; eventually the spine fuses and the pain goes away. But the " nothing can be done " bit is both disappointing and just plain wrong! Sure there are things you can do. A short roster would include: 1. =AMA-type medication= People on this list use any number of NSAIDs (non steroidal anti inflammatory drugs) DMARDs (disease modifying anti rheumatic drugs) Steroids (such as prednisone and cortisone) Sulfas (sulfasalazine, etc.) any combination of which might be helpful. If you are in pain and your RD (Rheumatological doctor) has not put you on anything like this, or what s/he has put you on is not working, you can either ask him/her to try something else or try something else yourself: find another doctor! 2. =Exercise= I know what you are thinking -- " EXERCISE! I CAN HARDLY WALK! " We've all been there, believe me. I have had a series of great excuses not to exercise ever since I was in a near fatal car accident more than twenty years ago. Then the PA/AS got really bad, which I took for the best excuse of all, until I became bedridden, when I realized that if I didn't start moving myself I'd never move! I go to the gym three days a week now, and although I don't do half of what some of the other guys there do I am certain that I would not be erect (upright, sillys!), walking, and working right now if I did not go to the gym. 3. =Emotional sustenance= Our bodies and our minds are inextricably interconnected. What happens upstairs afects what happens down in the body, and vice versa. Emotional healing can happen in a number of ways -- pick the type or types that work for you, from prayer to meditation to things that work on both the emotional and physical, like ta'i chi and yoga. If you are interested in meditation I can offer you some help/resources, but I don't know much about the others I listed. I've been on this rant before. AMA-type medication, exercise, and emotional well-being form the triad of things we can do for ourselves, but one rarely works without the others. Some people offer unicausal formulas for success; doctors might tell us that taking our meds is the best we can do, while more alternatively-minded people might suggest diets or herbs, etc. I'm not saying don't try the meds or don't try the herbs, I'm saying choose a strategy of well-being that combines the best of the medical, the physical, and the emotional. OK, I'm off-rant. Metta -- , North Jersey Highlands __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 I have Spondylitis, and it is in my neck as well as SI, and recently I have developed a " crunchy " noise that accompanies a certain movement of bending my head to the left. It is almost as if a certain muscle, ligament, tendon whatever is tightened up and making noise as it moves across the bone. -April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 Another comment on spondylitis; my rheumy made a comment that the bones don't always become fused. Anyone else heard this? She did say if they do, they stop hurting. -April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2000 Report Share Posted June 23, 2000 HI! This is --WENDYWHI@... letting you all know that I'm switching over by next week to Juno. AOL has been a mess for me. My new Email address will be: PAT.Mc@... I can't tell you all how much help, support and sincere caring I have gotten through being with this wonderful group of caring people. I am so very grateful!! God bless Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2001 Report Share Posted March 10, 2001 Jayne: I really do not know what he sees there on the MRI that tells him it is spondylitis. Looks like I didnt ask enough questions of my Rheumy? All I have experienced is stiffness and achiness in my back, the hands and foot are another story...I will ask him next visit... I have a question for > you..........how did the mri show spondylitis? Can you > tell me? It is a bad area to have pain......I have had > days where I wanted to scream.and have done so.....but > I have two little ones to take care of (and a big > one)....and I got to function. Jayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 as has been one of my diagnosis for awhile. along with reiters. some days my back is really painful. get into some good physical therapy. they can do massage and teach you exercises to open your back. try to keep moving. it's your best defense. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 as has been one of my diagnosis for awhile. along with reiters. some days my back is really painful. get into some good physical therapy. they can do massage and teach you exercises to open your back. try to keep moving. it's your best defense. kathy in il Quote Link to comment Share on other sites More sharing options...
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