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I was so happy to find a place where people could understand what I mean when I say "My foot is doing 5 things at once" October 6th will be the 1 year mark for my RSD - I'd never even heard of it before. I'm an Educator, and a child ran into my ankle with a skateboard as school was letting out. I knew it hurt - heck it sent me flying - but I never dreamed it could go THIS long or be THIS BAD. In the last 5 months the RSD has spread to both legs and my left arm. I am off of work and ready to have a line ran in my spine in a couple of weeks. None of the medications have worked for me - in fact I have had a reaction to all of them. It took me 11 doctors to find one who thought he could do a block - I had back surgery a few years ago and I have a ton of scar tissue - and missing bone. None of the other Doctors wanted to risk it. The hardest part of RSD for me isn't even the pain - although now I feel comfortable with saying I truly KNOW WHAT PAIN IS - 6 all natural childbirths was NOTHING compared to this - I hate the loss of being ME. I've always been a very high energy person who could work 12 hours, come home take care of the house and still have energy for dancing or hiking. Now after 10 minutes my poor legs look like I stole them from "Barney" The pain has etched my face - making me look 15 years older than I did a year ago. I don't even know the person in the mirror any more. I adopted a baby who is autistic, and has Fetal Alcohol Syndrome 2 1/2 years ago. Everyone thought I was CRAZY to adopt such a special child after I had raised my 6 - and 11 foster children. I had a hard time at first - I had to re-learn how to do everything for him. Now I find that even though I have to put more effort into his care - he is my inspiration. He's the reason I get up and going every day - and he's the reason I will beat this. If he can suffer all of the things he has to - what's a little RSD. I guess my story is very much like everyone else's - people going along in their normal life and being hit out of the blue with this very cruel disease. After reading some of the stories - I realize I'm luckier than a lot of people. The Education Center has agreed to pay my full salary and benefits for the duration - or until I am forced to go on Perm. Disability. I can't imagine trying to deal with all of this and have money worries too. The stress would be too much for me to handle. Can any one tell me about this shunt they are going to put in my spine, with the pump on the side. I'm REALLY scared to have anything poked into my spine - the last time, during my back surgery - my heart stopped and I quit breathing for over 4 minutes. My body is VERY sensitive to medications and I had a reaction to the omnipaque. I have had very little contact with other people in this area with RSD - in fact only 1 - and he had this procedure done. When I met him at the pain clinic - he had tears of pain streaming from his eyes - that made me even more scared. As I am new to this disease compared to a lot of others - any suggestions would be appreciated. Cindy |
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Thank You for the reply - I'm set to have the shunt put in next week - I guess it will be in for 3 - 7 weeks. The idea of moving with something sticking out of my spine gives me the willys. I REALLY miss my kids at school - I've been working on an accred. process for almost 4 years, and wouldn't you know that they're coming for the inspection next week. I have a great staff - but I still wish I could be there. I'm not good at being off of work - Too used to being on the Go all the time. I haven't been able to take ANY of the meds- so I just have to tolerate the pain - it seems that when I have more "down time" the pain is worse - maybe I just think about it more. Too bad RSD doesn't have a "quit" button. I keep telling my Doctors that I don't "want to play RSD anymore" - but it seems to have found a comfortable place in my body - and shows no sign of leaving soon. Has yours spread to different parts of your body? Is ANY part safe? Have you lost a lot of weight with it? I keep shrinking. Do you have any idea of what they do after the tendons have detatched from the bone - they're working on keeping my left leg and arm in use - so my right leg is in limbo at the moment. Thanks again for letting me pick your brain. It's good to hear from someone who has been through it. Cindy |
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Cindy, I don't think you will get much by picking my brain! My rsd started in the rt thumb and before I could get a dr. to understand what was happening to me it was in both hands. Both the drs and I thought that the pain was radiating from either my neck or shoulder (I had shoulder surgery and then neck surgery). It has worked itself into my rt. forearm now. I am very lucky and haven't seen much atrophy. I think it's because I have to use them to teach-I have the young ones! Sorry to hear you are losing weight. I have only gained weight. Every med they put me on has a weight gain side effect (and a constipation!  ). It would be healthier for me to lose. Can you tolerate shakes? That might be nutritious and drinking them at night can help some people's sleep. Sleep is one thing I don't get a lot of. It's very hard to go to sleep and then I wake in literal puddles of sweat. 6 hours is good for me. I believe that drs. can sew tendons onto bones. The best way of course is what you are doing, moving. What else are you doing? What kind of movement are they having you do? Take care |
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{{{{{{{{{{{{{cindy}}}}}}}}}} wowowow what a story.. hon,,, hard really hard too say what n how a body will react to any part of meds n rsd either way..RSD,,,, is still able to do as it wants to .... I am thankful that the blocks slowed mine down.. So that It is still more in rite leg.. still in both feet tho.. The pain,, I do not have the kind that most of you all do.. I sure have the high sensitivity days ... O man them days could fly away!!!!! We all have the times that we need to know that we are not going crazy,, n that all that we feel is real,, n part of life that we are going thru... We all need to know that we are realy ok... just the torment of the disease,, n what goes with it all. Please know I am here.. I do care!!!!!  |
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Thanks so much for the support. I guess what I hate so much about this disease is that it has managed to get me down - nothing ever has before. It keeps reminding me that I really am NOT in charge. I wish I could work - being with all the kids really helps me. I'm having surgery on Thursday - and I'm hoping for the best - what else can we do I guess. Does anyone have the problem of weight loss - I'm in a 5 junior now - and shrinking. if I get any smaller - I guess I'll go naked, cos my clothes are falling off, and I can't make it through a store to shop any more. I've tried shakes, and protein drinks, but I haven't much appitite. the Doctor told me he'd like me to stay about 111 pounds - Yea RIGHT!! The pain is much worse than morning sickness. It is sooo nice to have found a place where other people understand this crazyness. It messes with your mind - everthing you THOUGHT you knew is now different. A spider web touching you feels like a thousand bee stings - that's hard to understand.Sometimes it would almost be nice to BE CRAZY - that at least would make sense. |
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| | From:  CJF830 | Sent: 10/19/2006 1:07 AM |
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Hi Carla here.
I didn't have a weight LOSS problem but they put me on Prednisone as I have
rheumatoid arthritis on top of the RSD. I know wat U mean about the control. I
still work but I take a lot of pain meds.Here in NJ disability doesn't pay much
and I couldn't pay my bills if I didnt work. I love my job but im on my feet 8
hours a day.Oh and I work for an eye Dr and What really gets me is listening to
patients complain about there health problems.....I feel like saying I will
trade you a high blood pressure and raise you a high chloesterol...HA HA HA!!!!
I know I should be more sympathetic but some days the pain is so bad that I just
cant listen to them complain about simple health issues.I would rather be a
diabetic and have to give up chocolate! than have RSD....Is that a bad
thing???? |
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{{{{{cindy }}}}}}} I am so sorry that you are having all of this.. Darn I hope that you find something.. Someone mentioned to me,,, about digestive enzymes,,,,, found in heath food stores. Now I found that I am taking less pills,, n meds.. cause I am following with medicines after them... I am hoping that I find helping with the stupid constipation I have.. Nothing seems too work in that.. But hoping that you find some releif soon... Bear with us as we are trying too unite two forums together.. hoping that we can soon.. Thanks dear one.. Hoping this works for ya in some ways.. Let us know n keeping in informed please..... Have as pain free week as is possible.... Annie |
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{{{{{{ Carla }}}}}}}}}}} I really hope that you come back into the group and join us with the other group dear.. I know it is hard one too deal with really,,, And no it is not a bad thing.. And we all know that we would not wish this onto any kind of enemy of ours. Well ,, I can certainly think of one kind of enemy I would put this on in a heart beat.. But besides that,,,, not bad of you ... We all find this beast really cruel... And soo unpredictable.. We all should have someone too help us... And something too look foward too.. I certianly hope that you do have support system around you .. We hope too see you in the other groups!!!! There are sister groups in that one that we are being linked to.. Talks soon... and hope that you are being as pain free as is possible. Annie |
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I know it's been a long time - I've been having a terrible time. The ONLY place this nasty bogger hasn't spread yet is my right arm. I've had 4 surgeries in the last four months - and NONE OF THEM HELPED  That horrible tube in my spine and run out my side thing was a nightmare - I would never do that again. I have been so upset by the loss of use of my legs and having to have a walker that I can't even gather my thoughts any more. I'm still not taking any pain meds - all the Drs are shocked - But I have this little guy to raise, and I can't do it if I'm goofy. I think I need to take a break from all of these "treatments" and get my brain and body back in synch. I'll try to keep better in touch. Cindy |
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Hi, Sorry to hear about your RSD spreading so fast. I've had it since 2002. I have had a treatment that helped me so much you wouldn't beleive it! ECT. It was done by accident when I had a bad reaction to the drug Cymbalta and ended up in the hospital for a month. I can now ride my bike, lift weights, and do everything I was able to do before RSD. Ask your doctor about this procedure. I think my case is a great example of what can be done. I was about a month away from a wheel chair, as all my limbs were affected. Couldn't even lift my foot off the ground!! Please let me know what happens. Sylvia |
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| | | From: lgs131 | Sent: 1/14/2008 3:11 PM |
Sylvia, I would love to hear more about your ECT treatment and how it affected your RSD. Hoe many treatments did you have? Did the pain decrease slowly with each treatment or did nothing much happen and then suddenly there was a change? I see the Dr Schwartzman from Philadelphia was co-author of an article about this treatment [in 2007] but there seem to be very few articles - one in 1993 and one in 2007. Therefore, any information you can provide would be much appreciated.. Linda |
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Morning Folks, Just been sitting here reading a bit and thought I'd share something with you all that I have found help's me stay "regulated". It's not funny but I do find myself laughing a bit about my constipation. I eat bowlful's of "Prunes". Go ahead and laugh. I am. But seriously folks. I buy prunes by the quart's. And it's nothing to sit and eat 20 or so. (Geesh). My guy will eat them with me. He stops at 5, shakes his head at me. I smile and stab away with my fork into the quart of solution. And I eat that many every other day. They are the ONLY thing that I have found that helps. And it's much easier than the agony of only needing to go when your about to soil yourself. Hope everyone has a good day. Diana |
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If you are having problems you might want to try "Dannons Activia" Yorgurt, I get the low calorie stuff and it works great and I really had a problem from the drugs I have to take! I was putting a solution in water that was prescribed by the doctor called Glycolax, nasty stuff...for me the yorgurt regulated me again just like their ad promises, another friend of mine who is on an industrial dose of oxycontin also had a severe constupation problem and Dannons Activia yogurt helped him as well. And it tastes really good aside from being a health food as well! |
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i am on meds. and it seems to work good. but my hand and arm is getting so much weaker.i lost a lot of tissue in my arm
franknberrie <[email protected]> wrote:
1 year of RSD - and spreading
fast
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| | | From: franknberrie |
If you are having problems you might want to try "Dannons Activia" Yorgurt, I get the low calorie stuff and it works great and I really had a problem from the drugs I have to take! I was putting a solution in water that was prescribed by the doctor called Glycolax, nasty stuff...for me the yorgurt regulated me again just like their ad promises, another friend of mine who is on an industrial dose of oxycontin also had a severe constupation problem and Dannons Activia yogurt helped him as well. And it tastes really good aside from being a health food as well! | |
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can you tell me how you got rsd? and what part of your body. you have it? thank you
franknberrie <[email protected]> wrote:
1 year of RSD - and spreading
fast
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| | | From: franknberrie |
If you are having problems you might want to try "Dannons Activia" Yorgurt, I get the low calorie stuff and it works great and I really had a problem from the drugs I have to take! I was putting a solution in water that was prescribed by the doctor called Glycolax, nasty stuff...for me the yorgurt regulated me again just like their ad promises, another friend of mine who is on an industrial dose of oxycontin also had a severe constupation problem and Dannons Activia yogurt helped him as well. And it tastes really good aside from being a health food as well! | |
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hi Kitty, I got RSD from a left hand carpal tunnal surgery almost 8 years ago, it was 6 of 7 nerve surgeries I have hand on both arms...#6 started it and #7 spread it to both arms....well, it spread after the 7th surgery(an ulner nerve transposition) but because of all the nerved damage in my arms it might have spead anyway.When they done surgery #7 they hadnt diagnosed the RSD, they thought it was the trapped ulner nerve in my elbow...so who knows! Frank |
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