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The other day i posted a request for folks with back pain to contact me, 7 did . I was going to answer everyone off-list but the replys are interesting (below) so i decided to share you. [typing actually also hurts these days. i installed Dragon Naturally Speaking his week and will practice on it this weekend so hopefully i can appear to be more lucid than THIS is going to sound.] 1st comment -It was very gratifying to have people you don't even know offer to help you like this! 2nd comment most of the responses were kind of depressing - to me at least. [I have pasted all the responses below in case anyone else has the same terrible problem.] Let me briefly tell you my situation i have had back pain for 20 years + but until last April it was entirely livable : 2-3 days of i-can't-get-out-of-bed pain , 2-3 times a year. In April it became constant. i suddenly realized my posture had gotten very bad. i don' live with anyone who would point this out to me. i had doubled over to being almost at a 90 degree angle & off center when walking. I had an MRI, I tried steroid shots - no positive result a all. I consulted with a neurosurgeon, who said I had stenosis and 2 bulging disks but they were so minor that he could not operate and that they were unlikely to be causing my pain anyway. So I started 4 weeks of PT 4 weeks ago. I am now trying to get the HMO to approve 4 weeks more. The PT feels like it should be working but it isn't, really. I have what seems to be an excellent therapist - Lots of stretching, positioning my body over feet, etc. I want this to work. Terry says it helped him - how long did it take, Terry? Onesaid message, a few said live with it, one said yoga, one said walking I cannot even walk out to get the mail anymore. One asked if I was sedentary [ Yes, sit at this computer 12 hrs a day, 6 days a week - mossy working[ get paid by the hour, my other lifeline. It just hurts to much to continue typing & I still have to go back & correct the mess above!! Rereading that it sounds like i'm just looking for sympathy. While sympathy is nice it is not my intention. If anyone has anything to add to this discussion, by all means, please do. Oh - painkillers I can't take any inflammatory because of a history of bleeding ulcers, so Th leaves me with Percocet, narcotics. Which Camilla said is a no-no for those on pd drugs. But I can't live whiteout it. I have cut back by half because of double vision, and because of her comment. My regular pd mobility is poor too. A little levity in the wee hours!!! -----Original Message----- From: Terry Hopping <[log in to unmask]> To: Multiple recipients of list PARKINSON <[log in to unmask]> Date: Thursday, August 20, 1998 4:50 PM Subject: Re: pain help request >Bruce ... I had back and hip pain caused by my PD posture. I was terrible >and anti-inflamitories would not help. My Dr. sent me to physical therapy >and believe it or not it helped a lot. It was mainly stretching exercises. I >still have a bit of hip pain but it is tolerable. I have also heard of >people who rave about yogi and I wouldn't be afraid to try a chiropractor. >Good luck Bruce I will keep you in my prayers and please let me know how >you are doing. > >Terry > > >PS: My wife keeps after me to do the stretching exercises so a boss helps > > > > >At 04:28 PM 8/20/98 -0400, you wrote: >>If anyone has had any experience with unrelenting back pain (or opinions >>about it) caused by bad PD posture, I would appreciate it sincerely if you >>would contact me. [log in to unmask] >>Thanks, Bruce Anderson >>rove 4 mer. -----Original Message----- From: [log in to unmask] <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Thursday, August 20, 1998 5:04 PM Subject: Back pain >My wife Carlene, the PWP, has had a terrible back problem. She was >essentially 100% disabled. This was caused by collapsed disks whereby the >lowest two were affected most severely. The X-rays showed essentially no >gap between the vertebrae so that there was either bone-to-bone contact or >near contact. She had an operation which was essentially successful. She >has no more pain but has to be careful in the movements she makes. So in >her case this really made a difference. She fell and wrenched her back >which made it sensitive but after about 6 weeks the back is back to normal. >Any Questions ... Contact me. >K-F > > > -----Original Message----- From: Marianne Rome <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Thursday, August 20, 1998 5:08 PM Subject: back pain >I have just come from my doctor and complained about my terrible back pain. >Sometimes I cannot get out of bed in the morning. It feels like spasms and >shoots out pain in all directions(on top of that I have a slipped disc) The >doctor said it is the dyskenisia and tightness of the muscles. He >recommended heated 3 times a day for 20 minutes and stretching exercises. >However, it takes time. I am also going to try massage. If you want to >know anything else, feel free to e-mail me. > >Marianne > > -----Original Message----- From: Id & Andrea Campus <[log in to unmask]> To: Multiple recipients of list PARKINSON <[log in to unmask]> Date: Friday, August 21, 1998 7:58 AM Subject: Re: pain help request >At 16:28 20-8-98 -0400, you wrote: >>If anyone has had any experience with unrelenting back pain (or opinions >>about it) caused by bad PD posture, I would appreciate it sincerely if you >>would contact me. [log in to unmask] >>Thanks, Bruce Anderson > >Bruce, > >I have suffered a few times from heavy back pain myself, which, so I >suppose is caused by destine. The best way to prevent it for me is >walking at least one hour each day. By walking the low back muscles loosen >up. But when it is to late for that and the pain is not prevented but >already there I need a physiotherapist to be able to walk at all again. It >is the kind of pain which makes every movement of muscles involved a >torture.(And I have learned that in nearly every movement one makes there >is some involvement of low back muscles) So I can't sit down when I stand >up and I can't stand up when I am sitting. Suffering from this condition >and at the same time from rather heavy dyskinesia has been enough for me >to stop taking sinuate for 1 or 2 days. Which resulted in being able at >least not to move. >A few weeks ago this happened again and the physiotherapist who as usual >visited me at home gave me some exercises that I have to do nest to >walking, though he agreed that walking is the best thing to do. But if one >hates walking this excesses are nearly as helpful. I think I can't clearly >describe these exercises in English and I don't even know whether your >pain is of the low back pain kind. But the general advise from this message >is: look out for a good physiotherapist. > >Id > >-------------------------------------------------------------- >Vriendelijke Groeten / Kind regards, > >Ida Kamphuis mailto: [log in to unmask] -----Original Message----- From: Gina Cass. <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, August 21, 1998 11:09 AM Subject: Re: pain help request >Hi Bruce: I happened to come accross your questions about the low back pain. >Off and on I have suffered with a very low back pain. I checked back on some >Dr bills and found this backpain. About 10 years ago, I had it so bad, I was >admitted to the local hospital. I arrived at a very different angle. But was >hurt that I couldn't stand, sit, lay down, nothing. I was kept in the >hospital for a week. They ran every test they could think of. No luck, they >(drs) had not a clue. I am now wondering because as I stated it was off and >on. And no one could figure it out. I still have the back pain. I have a >feeling it goes along with PD. >Oh well >TTFN >Gina -----Original Message----- From: p. l. maddux <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, August 21, 1998 11:38 AM Subject: Re: pain help request Bruce, Are you sedimentary? How active are you on a daily basis? Do you spend a large part of the day in a sitting position? I have had a long history of back pain which I have very well under control now using exercise. But if your pain is not caused by inactivity then what I have to say won't help. Several list members have allready suggested exercise and physical thearpy, so you know that might help. I would also suggest a doctor of physical medicine. Who is a medical doctor/physical thearpist combined. Lanier Maddux 63/1 -----Original Message----- From: p. l. maddux <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, August 21, 1998 11:44 AM Subject: Re: pain help request Bruce, I just went back and read your msg again, and realized that you say pain is caused by "bad PD posture". I do not have that problem and am not sure I even know exactly what it means. So my prior post may be not at all apply to your situation. Sorry Lanier Madddux ----Original Message----- From: Camilla Flintermann <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, August 21, 1998 4:57 PM Subject: Re: pain help request >Peter hasn't had the back pain, but I suspect Gina may be right that it is >PD related. We were told that his chest pains, which seemed like angiuna, >were caused by the rigidity of PD. But of course, it is safe to check out >other possibilities before assuming everything is PD related, as with the >test Gina had.. > > >>Hi Bruce: I happened to come accross your questions about the low back pain. >>Off and on I have suffered with a very low back pain. I checked back on some >>Dr bills and found this backpain. About 10 years ago, I had it so bad, I was >>admitted to the local hospital. I arrived at a very different angle. But was >>hurt that I couldn't stand, sit, lay down, nothing. I was kept in the >>hospital for a week. They ran every test they could think of. No luck, they >>(drs) had not a clue. I am now wondering because as I stated it was off and >>on. And no one could figure it out. I still have the back pain. I have a >>feeling it goes along with PD. >>Oh well >>TTFN >>Gina > > > Camilla Flintermann, CG for Peter 80/9