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Medical Forum / Diseases and Disorders / Arthritis / October 2005i guess i need somebody to whomp me upside the head or something
i just returned from my rd appointment. feeling a bit negative about it. somebody tell me *why* i need an rd for osteoarthritis? especially when she keeps telling me my joint pain is fibro and tells me to buy a tape from some fibro website (without giving me the url, mind you, after i asked for it). geesh. i know, know, know . . . there is *no way* i have fibro. especially, knowing what my fibro friends experience because they have it. best she could offer is more pain pills, "take an otc nsaid" when i'm feeling stiff, and "use heat" on my arthritic knees. i'm hobbling around cuz my right ankle (my good leg) is acting up now, like my left one (just for the sake of symmetry and to accessorize my hips and knees, i guess). both wrists and thumbs feel stiff and uncooperatively uncomfortable most of the time. straightening up my torso posture is very uncomfortable. my neck is giving me headaches and causing my shoulder to hurt. so, somebody please tell me how, after a very cursory look, an rd can tell your joint pain is fibro and not your arthritis acting up? damn. if i didn't want to avoid turning my bod into a plank of wood, i'd go back to bed and stay there. sigh . . . i don't think i've got it all out of my system yet, but i'm afraid of what i'm going to say next. or cry. kate Kate, Sweetie; Maybe the question isn't "Why do I need an RD?" Maybe the question is, "Is this the right RD for me?" Second opinions are covered by insurance. Maybe its time to investigate what other doctors are available in the area. To find a really good one, first I went into Boston (30 miles away) and then followed Duckie's recommendation. He's 15 miles away (toward Boston). If I'd stayed in my area (Greater Lowell), I'd still be listening to the RD saying, "I think this is MS," and my neurologist saying, "This isn't MS. By *any* stretch of the imagination." [His wife has MS and while he doesn't specialize, he is very knowledgeable in that area.] Adelle >i just returned from my rd appointment. feeling a bit negative about it. >somebody tell me *why* i need an rd for osteoarthritis? especially when [quoted text clipped - 18 lines] > > kate I have had this told to me as well. Turns out, I have ankylosing spondylitis-3 RD's later, not to mention 2.5 years. I was diagnosed as having RA at first, (the affected joints are symetrical, stiff in the morning...many of the same symptoms as RA, ) then the dx changed to erosive poly arthritis (after the MRIs finally showed erosions in my back and wrists), then changed to AS when I finally switched RDs again. I never had much swelling, other than in my ankles. I have problems with my wrists, back, hips, knees, shoulders, fingers and toes. I have had many cortisone shots. I also do have fibro, and that is the cause of my upper back and neck pain as well as the hip pain...at least according to my current Rd. It is sometimes very difficult for me to tell what symptom is being caused by what disease. I am currently seeing an RD here in Western MA that I am very happy with. I didn't mean to hijack your thread, but I know exactly how you feel....It took me 2.5 years to get here and 3 Rds. Maybe it's time for a new Rd for you as well. (((Adelle)) Charlene you didn't highjack a thing, sweetie. that's what we call "sharing" around these parts. after being home for a couple of hours since my rd appointment, i'm starting to think (aside from xray evidence for some areas) that the condition of my spine is causing other areas to act up. if that's the case, for some of it, then my ortho-surgeon/spine institute appointment next month might (or might not) confirm that suspicion for me. there are times i think that if i can just get this spine stuff dealt with, then i'll be fine. and of course, there are times when i wonder if it will ever be sorted out. it sometimes feels like some doctors get too comfortable with their tunnel vision approach, while ignoring the rest. i suppose they are only human, too, and only know, individually, what they know. kate >I have had this told to me as well. Turns out, I have ankylosing > spondylitis-3 RD's later, not to mention 2.5 years. [quoted text clipped - 17 lines] > (((Adelle)) > Charlene Kate...Hugs Sweetie....I am so sorry. I wish that I could take away the pain...Praying that you heal quickly Cindy > you didn't highjack a thing, sweetie. that's what we call "sharing" > around these parts. [quoted text clipped - 34 lines] >> (((Adelle)) >> Charlene no doubt, you are right, adelle. i think i've been in, and am in, some kind of/degree of a "stuck phase" in my life. i can get a chimney sweep in and slowly, project by project, have been getting household repairs done, but somehow, i feel overwhelmed, intimidated or "stuck" by the prospect of finding new doctors for myself. it doesn't make sense to me, why i am "stuck" (and i'm supposed to be the authority on *me*) or how to get past my "stuckness". now, i'm thinking i'm not making sense to anyone else reading this, either.LOL i better quit writing while i might still sound minutely cogizant of what's going on with me.LOL or at least, full of enough b.s. to convince myself that i do know.<grimace> kate > Kate, Sweetie; > [quoted text clipped - 37 lines] >> >> kate You are making perfect sense, Kate. Getting stuck is common. In fact, lack of follow through is very common, especially in people with depression. And it's a wake up call for me, too. I'm 'stuck' in not following up with my shoulder problems and not dealing with needing something for depression. So how does this sound - you make one phone call (or a computer search) to inquire from someone - anyone (even a hospital's website) about another RD. And I'll make a phone call about the messed up billing for my shoulder. What do you think? We'll start moving from our respective stuck positions together. Adelle > no doubt, you are right, adelle. > [quoted text clipped - 55 lines] >>> >>> kate > You are making perfect sense, Kate. Getting stuck is common. In fact, lack > of follow through is very common, especially in people with depression. [quoted text clipped - 10 lines] > > Adelle ok. pinkies-locked pledge, adelle?<smile>---at least, i didn't say "spit-pledge" (my college sorority was er . . . "peculiar" like that).LOL duckie suggested i write aim for a suggestion of a good rd. i know that aim lives quite a ways north of me. but i will write and ask her tonight. your turn, adelle.<smile> i don't want you "stuck" hurting or depressed, either, sweetie. kate (oh, good! i just remembered a bud's hubby who sees an rd south of us somewhere. see what you did?! you're a regular glue dissolver. i might just get unstuck, afterall.) >> no doubt, you are right, adelle. >> [quoted text clipped - 56 lines] >>>> >>>> kate Kate, you make a lot of sense to me. Sometimes we can deal with some things and not with others. Sometimes we just need to get some stuff taken cre of and out of the way before we can do other things. That's perfectly normal. I've found I sometimes have to make myself sit down and really think through what is most important and the biggest priority right now and focus my energies on taking care of that rather than just doing the thing that is easiest or most immediately visible, then having no energy left for what is less visible but actually more important. It's an issue for everyone, but even more of an issue for we folks with chronic illnesses and/or chronic pain who have less energy for doing things and thinking things through than we would have as healthy people.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > no doubt, you are right, adelle. > [quoted text clipped - 11 lines] > > kate Sometimes it is so hard to find a good doctor, particularly a good RD. Kate, I'm sorry yours isn't one of them. That's the reason I drive from Montgomery to Birmingham to see my RD. He is a good one. Gwen >i just returned from my rd appointment. feeling a bit negative about it. >somebody tell me *why* i need an rd for osteoarthritis? especially when [quoted text clipped - 18 lines] > > kate > Sometimes it is so hard to find a good doctor, particularly a good RD. > Kate, I'm sorry yours isn't one of them. That's the reason I drive from > Montgomery to Birmingham to see my RD. He is a good one. > Gwen thanks for caring and commenting, sweetie. kate (sigh . . . i think i need my own lear jet. boston, western mass and birmingham, so far away---sigh . . . ) >>i just returned from my rd appointment. feeling a bit negative about it. >>somebody tell me *why* i need an rd for osteoarthritis? especially when [quoted text clipped - 20 lines] >> >> kate Call Aim. That is an order. ;) Duckie >>Sometimes it is so hard to find a good doctor, particularly a good RD. >>Kate, I'm sorry yours isn't one of them. That's the reason I drive from [quoted text clipped - 6 lines] > (sigh . . . i think i need my own lear jet. boston, western mass and > birmingham, so far away---sigh . . . ) > Call Aim. That is an order. ;) > Duckie butch would have said, to me, if i gave him an order, "who died and made you general?"LOL aren't you glad i'm me and not him?<smile> don't have aim's current phone number, but i do have her e-addy. i'll email her and ask. s'ok? kate >>>Sometimes it is so hard to find a good doctor, particularly a good RD. >>>Kate, I'm sorry yours isn't one of them. That's the reason I drive from [quoted text clipped - 6 lines] >> (sigh . . . i think i need my own lear jet. boston, western mass and >> birmingham, so far away---sigh . . . ) >> Call Aim. That is an order. ;) >> Duckie [quoted text clipped - 5 lines] > > kate whoa. what i said just hit me. hard. 2 1/2 years now and i still do that to myself, without thinking. >>>>Sometimes it is so hard to find a good doctor, particularly a good RD. >>>>Kate, I'm sorry yours isn't one of them. That's the reason I drive from [quoted text clipped - 6 lines] >>> (sigh . . . i think i need my own lear jet. boston, western mass and >>> birmingham, so far away---sigh . . . ) {{{{{{Kate}}}}}} DeeTee >>> Call Aim. That is an order. ;) >>> Duckie [quoted text clipped - 19 lines] >>>> (sigh . . . i think i need my own lear jet. boston, western mass and >>>> birmingham, so far away---sigh . . . ) > > Call Aim. That is an order. ;) > > Duckie [quoted text clipped - 5 lines] > > kate Has Aim's cell number changed since gimpfest? I still have it and I'm sure she wouldn't mind my sharing. Let me know and I'll send it via email. Kelly C. >> > Call Aim. That is an order. ;) >> > Duckie [quoted text clipped - 12 lines] > > Kelly C. i don't know if it's changed since the gimpfest. the number i have for her is 3 years old and i think she's moved since then. if you think it would be ok, please do send it to me. thank you, kelly. kate rofl s'okay Duckie >>Call Aim. That is an order. ;) >>Duckie [quoted text clipped - 16 lines] >>>(sigh . . . i think i need my own lear jet. boston, western mass and >>>birmingham, so far away---sigh . . . ) Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) >so, somebody please tell me how, after a very cursory look, an rd can tell >your joint pain is fibro and not your arthritis acting up? damn. Fibro has trigger points. The RD will push on the trigger point areas and see if you have pain radiating from it. http://www.ncemi.org/cse/cse0908.htm http://www.fmnetnews.com/pages/criteria.html If you go to see her again ask her to show you the trigger points. A second opinion might be helpful. Have you done accupuncture? I have friends who say it is helpful for FM. My sister's neurologist swears by it for his back. Maybe we can get M out of hiding to give some advice. -- MZ Visit my website: http://www.mzuschlag.com >>so, somebody please tell me how, after a very cursory look, an rd can tell >>your joint pain is fibro and not your arthritis acting up? damn. [quoted text clipped - 6 lines] > If you go to see her again ask her to show you the trigger points. > A second opinion might be helpful. ****i will ask her to do that, if i don't find a new rd in the next 3 months. nope, my rd didn't do those points. all she did was squeeze my knee caps, hand joints and press down on both shoulders at the same time to compress my spine (to see how bad my disks were getting) today. truthfully, when my rd touches me, her hands and fingers are feather light---not like somebody i'd want giving me a massage, cuz i like firm pressure massages. thanks for the urls, maryz. i recognize these trigger points---my chiropractor tried pressing these spots on me on different occassions over the years---she doesn't believe i have fibro, either. even tonight, when i pressed really hard on the points (in those pictures) i can reach, the sensation isn't anything to write home about or yelp about. i thought maybe my fingers weren't strong enough, so i tried the wooden, round handle end of a squeegie. no biggie w0w. i know, it's weird that i tried that, but i did. > Have you done accupuncture? I have friends who say it is helpful for > FM. My sister's neurologist swears by it for his back. Maybe we can > get M out of hiding to give some advice. -- MZ ***i have tried acupuncture twice for my spine when my hips were really bad. first set of treatments (or whatever it is called) it helped quite a bit; second set, with a different acupuncturist (cuz the first one, who used to work in my chiro's medical suite, moved out of state), seemed different somehow and didn't help. i've kind of concluded that it depends upon who is doing the acupuncture, kinda like different masseuses, i guess. or maybe i'm just weird. but it is soooo expensive for acupuncture here, though--- $90-95 for a single treatment session, on average, and my insurance doesn't cover any of it. really can't afford acupuncture nor massage on as regular a basis as i might like to have them. kate > Visit my website: > http://www.mzuschlag.com So who are Carole and Aim seeing? Maybe it is time to go looking for a new doctor. Duckie > i just returned from my rd appointment. feeling a bit negative about it. > somebody tell me *why* i need an rd for osteoarthritis? especially when she [quoted text clipped - 18 lines] > > kate Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) I still haven't seen an RD. I'm working on the cardiological issues. And now I have to wait until COBRA gets my medical insurance activated again. It took them three days to generate the bill, but now they say it takes 4-6 weeks to get it activated. . . go figure. Carole > So who are Carole and Aim seeing? Maybe it is time to go looking for a > new doctor. [quoted text clipped - 25 lines] >> >> kate >I still haven't seen an RD. I'm working on the cardiological issues. And >now I have to wait until COBRA gets my medical insurance activated again. >It took them three days to generate the bill, but now they say it takes 4-6 >weeks to get it activated. . . go figure. > > Carole (((((((((((((carole))))))))))))) i soooo want things to be easier for you. kate >> So who are Carole and Aim seeing? Maybe it is time to go looking for a >> new doctor. [quoted text clipped - 25 lines] >>> >>> kate >>I still haven't seen an RD. I'm working on the cardiological issues. And >>now I have to wait until COBRA gets my medical insurance activated again. [quoted text clipped - 3 lines] > > (((((((((((((carole))))))))))))) i soooo want things to be easier for you. Thanks, Kate. I'm getting there :-) I am FINALLY getting long term disability from my employer and SSDI, so the bills are getting paid in a more timely fashion. I even had enough left over to finally get basic cable. It's so nice to no longer have to watch TV that looks like every program is in a snowstorm. It's the little things in life :)))) I know COBRA got my check as I sent it with a delivery confirmation, so now I just have to wait until they process it. I'm hoping it happens soon as my prescriptions will need refilling and I have a cardiologist appointment on Oct 12th. So we shall see :)) Hugsies, Carole :) Kate, AIM had given me the name of some one who was really good, but I can't remember who it was. So email her and ask her. Carole >> i just returned from my rd appointment. feeling a bit negative about >> it. somebody tell me *why* i need an rd for osteoarthritis? [quoted text clipped - 21 lines] >> >> kate > Kate, > > AIM had given me the name of some one who was really good, but I can't > remember who it was. So email her and ask her. > > Carole i will do that. thanks, hon. kate >>> i just returned from my rd appointment. feeling a bit negative about >>> it. somebody tell me *why* i need an rd for osteoarthritis? especially [quoted text clipped - 21 lines] >>> >>> kate > So who are Carole and Aim seeing? Maybe it is time to go looking for a new > doctor. > Duckie it is. long past time. as i said, i'll email aim, as you suggested. thanks, sweetie. kate >> i just returned from my rd appointment. feeling a bit negative about it. >> somebody tell me *why* i need an rd for osteoarthritis? especially when [quoted text clipped - 20 lines] >> >> kate Hey, gang, can anyone remember how long my inflammatory arthritis was diagnosed as part of my fibromyalgia? Kate, when the RD finally realized what was going on, he *apologized* to me. I nearly fell over. That's when he started testing for Sjogren's and, of course, it came back positive. I sometimes wonder if there's more going on, but I won't be able to see a new RD for awhile yet. We still have to get a copy of my records from the military and then get an appointment from my new PCP and THEN get a referral from her to see an RD and THEN and only then can I start looking for an RD up here. Sigh. {{{Kate}}} <- gentle hug sweetie. DeeTee >i just returned from my rd appointment. feeling a bit negative about it. >somebody tell me *why* i need an rd for osteoarthritis? especially when [quoted text clipped - 18 lines] > > kate > Hey, gang, can anyone remember how long my inflammatory arthritis was > diagnosed as part of my fibromyalgia? Kate, when the RD finally realized [quoted text clipped - 9 lines] > > DeeTee holy cow! talk about time consuming complications! sounds like you can use a big (((((((((((((((((((((((deetee))))))))))))))))))) hope you get your records quickly, hon. thank you for the hugs, deetee and for the encouragement. kate >>i just returned from my rd appointment. feeling a bit negative about it. >>somebody tell me *why* i need an rd for osteoarthritis? especially when [quoted text clipped - 20 lines] >> >> kate > so, somebody please tell me how, after a very cursory look, an rd can tell > your joint pain is fibro and not your arthritis acting up? damn. if i [quoted text clipped - 3 lines] > > kate Hi Kate, Do not know what to tell you other than I have felt that way a few times and most of the time I felt sorry for what was said or done. Sometimes a person can make it up and sometimes what comes next is from now on. Harv >> so, somebody please tell me how, after a very cursory look, an rd can >> tell your joint pain is fibro and not your arthritis acting up? damn. [quoted text clipped - 10 lines] > now on. > Harv yeah, i hear you, harv. me too. i do too much of that being sorry for my "letting 'er rip" moments. thanks for understanding, guy. kate >>so, somebody please tell me how, after a very cursory look, an rd can tell >>your joint pain is fibro and not your arthritis acting up? If she didn't bother to test the pressure points, she's just blowing hot air. I understand your frustration. I have the best RD in town, but yet we can't nail down exactly what is going on. It'll be 3 years next month since I was initially diagnosed with seronegative inflammatory arthritis. When I went to her initially, she did all of the standard tests, bloodwork, etc. and then sent me off to have a full body isotope uptake bone scan done. I lit up like a freakin' Christmas tree :) I am being treated as if I have RA. The treatment is working quite well. I was doing much better before Bextra was pulled off the market. The new medication (Voltaren) is helping, but it's not as effective as the Bextra was. Lately I've been having hip and lower back problems, so she sent me for tests thinking I may have sacroiliitus and/or AS. Tests came back perfect - sacroiliac joints look great and my lower spine is great. Yet whenever I walk slowly (like in a museum) I have to sit down after about 15 minutes due to hip and lower back pain or my knee goes numb. Taking the bus is a real treat right now :( I think it's time to go crawl (literally) into bed. >>>so, somebody please tell me how, after a very cursory look, an rd can >>>tell [quoted text clipped - 25 lines] > > I think it's time to go crawl (literally) into bed. ((((((((((((((((((brad))))))))))))))))) it doesn't sound like your arthritis is under control yet, either. bummer, guy. i hope your rd nails it down for you, soon. the ra dose of bextra seemed to help me, too, until my ekg went scary-wonky. luckily, for me, it cleared up---ekg went back to normal by my next pcp visit, after i stopped taking it, at my pcp's behest. bextra gave a lot of people back their lives. no, my rd didn't do the pressure points today and just declared that fibro was causing things. i've been through a lot of blood tests, over the past few years, but for my last two appointments (6 months) she hasn't ordered one. makes me feel like she gave up or something. i'm thinking . . . maybe the something is that she's waiting for the spine specialist to do his diagnostics? dunno. hope you feel better, very soon, brad. kate Omg, Kate, I just realized that I hugged Adelle and not you on my earlier post, please forgive me!! There is a link from the remicade site to find an RD. Here is it: http://www.remicade.com/global/specialist_locator.jsp?WT.srch=1 What did the spine specialist do, or haven't you seen him yet?? Please don't give up or let this doc make you think that you are crazy, or just a whiner or something. You know your body better than anyone. Brad, did they do xrays to check your SI joints, or MRIs?? My back and wrists looked fine on my xrays....only when I insisted on MRIs did the erosions FINALLY show up. Brad, your story sounds so much like mine that I have goose bumps. (((Kate))) got it right this time!!! Char >>Brad, did they do xrays to check your SI joints, or MRIs?? She ordered x-rays for the SI joints and lower spine. She could order an MRI I suppose, but I'd have to wait over a year to get the MRI done due to the huge waiting lists for MRIs. >>My back and wrists looked fine on my xrays....only when I insisted on MRIs >>did the erosions FINALLY show up. Interesting. I'll have to mention that to her and see what she says. >>Brad, your story sounds so much like mine that I have goose bumps. >>Brad, did they do xrays to check your SI joints, or MRIs?? My back and >>wrists looked fine on my xrays....only when I insisted on MRIs did the >>erosions FINALLY show up. >>Brad, your story sounds so much like mine that I have goose bumps. Well, the story gets even more interesting. I was in to see my GP today, and I told him the story of what has been happening with my lower back, hips, legs. I mentioned the fact that when I walk, my lower back starts to cramp after 10 to 15 minutes of walking. Sitting for a few minutes, or leaning on something releases the cramping. Those statements raised a red flag with him. He believes that I have what is called spinal stenosis. Grrr. Brad >>((((((((((((((((((brad))))))))))))))))) it doesn't sound like your >>arthritis is under control yet, either. bummer, guy. i hope your rd nails >>it down for you, soon. the ra dose of bextra seemed to help me, too, until >>my ekg went scary-wonky. luckily, for me, it cleared up---ekg went back to >>normal by my next pcp visit, after i stopped taking it, at my pcp's behest. >>bextra gave a lot of people back their lives. Things were going beautifully until they pulled Bextra off the market. Bextra combined with sulphasalizine was the cocktail that worked magic for me. Each one on their own didn't do it, but together they were perfect. I almost felt like I did before this crap started. >>no, my rd didn't do the pressure points today and just declared that fibro >>was causing things. i've been through a lot of blood tests, over the past >>few years, but for my last two appointments (6 months) she hasn't ordered >>one. makes me feel like she gave up or something. i'm thinking . . . maybe >>the something is that she's waiting for the spine specialist to do his >>diagnostics? dunno. It could be that she is waiting for the spine specialist. >>hope you feel better, very soon, brad. Me too. Fall is here now, so things will be better Kate, I hope you get to the bottom of this and find out the answer. I know how frustrating this can be. Ask me or Denise and we will tell you. It is really hard on a person no knowing exactly what they are dealing with and having diagnoses changed, etc. Warm fuzzies and hugs to you. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo >i just returned from my rd appointment. feeling a bit negative about it. >somebody tell me *why* i need an rd for osteoarthritis? especially when [quoted text clipped - 18 lines] > > kate Did she (your doctor) use the word *joints*? Because osteoarthritis IS in the joints, while Fibromyalgia is in the muscles and other soft tissue. Nanny >i just returned from my rd appointment. feeling a bit negative about it. >somebody tell me *why* i need an rd for osteoarthritis? especially when [quoted text clipped - 18 lines] > > kate Not a whomp, Kate, just a hug. My advice is to ditch this rd and find someone else who is compassionate, knowledgeable, and will listen to you. Not an easy task, I know. If you have a pcp, you may want to ask him/her to recommend someone. Good luck! Bonnie |
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