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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-04-2012, 10:41 AM   #1
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Unhappy New Here... feeling hopeless

Hi, I have had CRPS since 2006 in left lower leg. It took over a year to diagnosis because I was told by three doctors I was either too young to be in this much pain, or it was in my head, or a dr who acted like I was on trial every visit.. trying to catch me saying something different. I was injured during my military service and continue getting staph infections in left lower leg until July 2006 it was so bad it left a crater in my leg. That is how it started. I finally went and used my private insurance and found a doctor to diagnosis and start treating me. It was too late to reverse. I had my first stimulator placed in 08. I went to a bigger VA hospital and was in so much from the battery site. The doctor thought instead of the Boston Scientific that the St Judes stimulator would work so much better. Here started my journey on Stimulator #2. I also was using a cane and had problems in my hips and lower back from favoring left leg. So I was given my first injections in hips and RFA (burning nerves lower back). From then I have had two other RFA's and one other injection in hips. When the did my second stimulator they took out old one and battery and put new battery in other hip. Now one year later. The stimulator is still not working correctly. It is pulling my right side more. Out of all the leads I have (i think like 16 or so) only 2 work for my left leg. The others pull at my stomach and groin.
So now to my hopeless... Every time they touch me I get worse. I have been in so much pain for so long... I really don't know how much more I can take. I have pain in my hips, extreme pain in back, and growing in my leg. How do I go on? I hardly can do anything anymore and I am out for days. When ever I have a procedure I am down for months. I am desperate. I cry all the time because I don't know how to do this one more week...let alone a lifetime. I have two kids... 17 and 14. Anyone with ideas?? I really cant continue my life like this anymore.
R

 
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Old 04-04-2012, 01:33 PM   #2
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Re: New Here..feeling hopeless

Hey,
Reading your post, was kinda like reading my own med. chart. Will post more comp. post later, already taken my meds so sleep not far away! CRPS in 1999,
but got early buyers freebee's op( CRP, central pain and epilepsy) Also started treatment late, so chances of recovery were minimal. Just had my 1st RF ablation, left me completely paralised in left leg, for over a week. 3 weeks later, and still in worse pain than before. Anyway, also have 2 kids, similar ages, and this has F$%^&%D them up badly. I have foond only 2 kinds of relief, Masssive amounts of opiates, and correct use of medical Marijauna.I tend to almost natuarally switch from one to onother method>seems to maintain the strength of opiates and make dependance less. I live in Israel, where the paperwork with Dr. is a nightmare, but fortunatly we have enough "out there" Dr's that you always seem to be able to try any altenatives. My experience with Drugs (non opiate) and other alternatives suck. Developed Steven Johnsons Syndrome, from the standard epilepsy, and the neurontins and their relatives. Now have to switch meds at any hint of a rash(even a badly timed pimple out break) My breakthru' came with an aenesthesioligist (sic) who told me "u dont have to always be in pain, your life is bad enough with everything else, MY job is to make you pain free, or as close as I possibly can, with any means neccesary". Yeah, there are still ****** days (weeks, months) but I have enough good days now, to balance the bad ones out> Hope it will get higher! Hang in there, I know its a cliche, but sometimes you gotto try make it thruogh the seconds, never mind the days.But worth it! Take care, Zap.

 
Old 04-06-2012, 07:14 AM   #3
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Re: New Here..feeling hopeless

Thanks Zap!! My doctor believes that more is not better and to increase my pain meds or switch is like pulling teeth. I was on Morphine and Percocet and it wasn't working to the point, I stopped taking it most days. He finally switched me to Methadone a couple of months ago. I have got him to increase it so I'm taking 10mg am and noon, and 5 mg at night. I'm using the VA and if I tried majaurana I wouldn't get pain meds at all. So that's out of the question. I was told yesterday at doctors visit to take baby steps and not do so much. Of course that means doing something for a couple hours and laying back down. What a life I have any more. I'm frustrated. I lost it the other day and at my doctor's. I don't think anyone can empathize unless they know. I can't do anything around house right now and was feeling useless. I struggle with the old me and the person be become.

 
Old 04-06-2012, 07:15 PM   #4
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Re: New Here..feeling hopeless

Hi -- I have been posting on back problems, but as always, there seems to be a new something going on.

Today, pain management diagnosed me with CRPS, Type II, suggested Neurontin, diagnostic nerve block, and some dietary supplements. Since they seem to be as safe as any of the pharma drugs, I'm going to give the supplements a shot. Here's the list, in case it helps anyone: acetyl L-carnitine (500 mg), alpha lipoic acid (no dose indicated), fish oil or Omega 3 (1-2 g), and Vitamin C (3g). The pain management fellow also stated that medical marijuana can excerbate the chronic pain cycle -- I didn't ask for details, since this isn't something I was planning to use.

Injection to follow and neurontin starting soon: I think this issue was caught fairly quickly, so I am hopeful that the effects are still reversible.

 
Old 04-08-2012, 04:13 PM   #5
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Re: New Here..feeling hopeless

Hi there (again)
Was just lying in bed , hoping to fall asleep( pretty pointless, leg is on full volume tonight.Started thinking about your situation and just wandered if you have ever had any EMG's done, Great indicator of nerve hassles. I'm sure you have, but if not, maybe something new to try> Hope u manage a decent nights sleep. Take care, Zap!

 
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Old 04-16-2012, 05:40 PM   #6
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Re: New Here... feeling hopeless

Thanks for the replies.

 
Old 05-25-2012, 01:54 PM   #7
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Re: New Here... feeling hopeless

I also suffer from this terrible disease. I understand completely how your feeling. I've had the injections but no help cause I didn't get diagnosed until almost 3 yrs after..I also had the injections but it didn't work & sometimes made it worse. I feel useless alone & can't find a dr in my area that knows anything about it. I'm not about to continue to dr over an hr away all the time on my fixed income. I'm 45 yrs old, have a son 20 & 23 & a grandson that is 1 yr 6 months. Life is hard not being able to get out & enjoy life or my family from being in constant pain. It seems no one wants to help try & get my pain under contol. the only thing given was the lorcet 10 & that didn't help at all & I was told that was the best they could do...& sorry. Sometimes I pray God would take me on it gets so bad. But hang on & pray one day there will be someone that can help me. God bless u, send healing to u & Im here if u need to talk

 
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Old 05-31-2012, 07:18 AM   #8
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Re: New Here... feeling hopeless

Dear AnnieBell,
I so understand your frustration. Have you asked to be seen by a pain anesthesiologist? That is how I was finally diagnosis. I am seeing another one 4 1/2 hours away to have my RFA (burning nerves in my back from arthritis caused by using a cane and favoring my left CRPS leg). The RFA's only last 2-6 months and I have to do it on my lower and middle back. It seems I am in this viscous cycle that when I get one done, it takes 3-6 weeks before I'm able to get out of bed and 8 weeks till I feel the effect. By this time the other part of my back is about ready to be done again. It has become where my back is in more pain than my leg at times. I talked to my rep for my stimulator and she said considering the amount of relief I'm actually getting out of it, I might consider having it taken out!?!?!?!? I'm afraid. It seems every time they do surgery on me, I get worse. This disease has to be the most frustrating and sometimes hardest things I'm facing now. I've learned that we as patients need to do the research and we need to be our own advocates. I would bring my doctor stuff I read about my disease. When he wouldn't change my pain medication after being on it for years and it not working, I found a book called the "The War on Pain". It actually had a chapter about this disease and how to keep trying till you find a drug that works for you. It was written by a doctor who was from CA and was on a board or something like that. Are there any pain specialist in your area? I would try that too. I changed doctors four times to find a doctor who would listen to me. I was told in the beginning I was too young and it was all in my head. One doctor, every time I went to see him, acted like I was on trial and questioned me every time I went in. I felt like a criminal. Another doctor threw his hands up and said I don't know that I can do anything else for you. So, I understand. We can't go take an xray and say see there it is. It isn't something that is black and white. In today's society with so many people trying to abuse drugs, the patients who really need it are getting punished. So when you have a disease as extreme as ours, with doctors that are convinced before we even hit the door that half of us are drug seeking, it makes it so hard to get someone to understand and treat us. I'm sorry I dealt with it for over 3 years. The problem I have is my pain anesthesiologist told me that if someone would have listened to me in the first 6 months, there was a chance it would have went into remission. Sorry for venting...... I'm just upset that my life has come down to being able to go out for a couple hours a day on good days. The rest of the time, I have to be laying down or the pain is too much. I know that God has a plan for all of us... I need just to accept it. I wish you the best of luck... You are not alone.

 
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Old 06-06-2012, 08:21 PM   #9
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Re: New Here... feeling hopeless

hey .. sorry for your ailments.. in one of my group visits we found that a lot of RSD sufferers have a magnesium deficiantsy issue(sorry for spelling) and they said that we should all get our levels checked also we have found that a lot of RSD sufferers get some relief using an epsom salt bath or soaking of the affected limb.. hey can't hurt right.. good luck to you and I hope this helps. I don't have a bath my self but am looking into ways to try it..

 
Old 06-15-2012, 08:51 PM   #10
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Re: New Here... feeling hopeless

Thanks so much. I will try anything once. I have read where people are able to lead semi-normal lives with the stimulator and other devices or medicines. I just don't understand how they do it. If I do too much my toes begin to feel like there are being crushed and twisted together, along with the burning, stabbing, horrific pain. When this happens even my sleep medication can't help me sleep. I'm confused at how you read the stories from the stumulator companies and those patients are doing great. Do you know what I mean???
I think it really helps knowing I'm not alone.
Thanks for your help.

 
Old 06-15-2012, 10:40 PM   #11
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Re: New Here... feeling hopeless

I think that the theory behind the nerve stimulators is to get the nerve to feel something different. The nerves responsible for pain also transmit other sensations. But, they can only transmit one sensation at a time. So, if you stimulate them electrically, they can't transmit the pain signals. I'm sure that there's a much fancier way to explain this theory, but that my layperson version.

 
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