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Old 02-16-2013, 11:46 AM
 
4 posts, read 3,425 times
Reputation: 10

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JuWow so many people suffering from this demon! My husband has full body CRPS which is extremely rare (and evil). From a car accident in 2005. It started in his legs and spread up his body. His was so bad in his lower that he was in a wheelchair for 6 months (when it was just in his legs). He couldn't walk at all. He would literally crawl into our bathroom. Prior to the wheelchair he had the injections in his back but they would work for a few week. His doctor Moderator cut: need at least 10 other posts to make specific recommendations suggested a neuro stimulator. By this time his RSD had spread to his upper as well. In 06 he had the upper Stim surgery (trial implant) and could walk within an hour! Praise God. The bad part was that he could only have the trial for 10 days. They removed it and he was back in a chair. About 3-4 weeks later he had the permanent implant. It worked So well. He hasn't been in a chair since. He also got an upper implant. He is doing "well" for having full body . My husband is only on Lyrica. He weened himself off of Cymbalta a few months ago. He describes CRPS as having someone open your bones and pouring Kerosene down them and lighting them on fire. The Stims don't make him pain free, FAR from it. He said it is trading one pain for another. They make his limbs feel like pins and needles. He has had 10 surgeries (6 related to his CRPS) since '05 but without them I don't think he would be here. CRPS has a 35+ suicide rate. It is the highest pain a person can endure.... It breaks my heart.
I HIGHLY recommend looking into it if you are or have someone living with this monster.
My love and prayers to all of you who are faced with this.

Last edited by SouthernBelleInUtah; 02-16-2013 at 06:31 PM..
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Old 07-15-2013, 10:18 AM
 
1 posts, read 1,299 times
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My sister has RSD and is having a very hard time right now. I was wondering who your wife went to for treatment?
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Old 07-24-2017, 08:01 AM
 
1 posts, read 797 times
Reputation: 10
Default Possible Help for CRPS/RSD

Hello everyone. Wanted to jump on and tell other CRPS/RSD Warriors about a medication I am on now since 2010 that has removed all of my symptoms and pain of this disease. have had full body RSD since 2001 from an infiltrated IV in Left arm that had Phenergan/Demerol injected 3 times and killed Ulna Nerve. But had 2 SCS , numerous blocks done and was on lg dosages of pain meds. Spent most of my time in bed from 2001 until 2010.Went to a new pain management doc and he changed my life! Started me on a med called Mirapex. It is anti Parkinson's med and has started being used for RLS, Depression, Fibro and starting to be prescribed for CRPS/RSD. Blocks the pain signal in the brain basically. Took a month to build up to dosage I am on now of 1mg three times a day. That is it! Came off all pain meds and pain scale went from 10+ to 0! Life was given back to me. But if I run out and go 3 days or so the pain comes back and I am in bed hurting again. I wanted to get the word out so I tried a couple of FB Support groups and was kicked out of one/ said I was advertising...Really? Not , just trying to let others know about it. So last year started my own group, CRPS/RSD One Disease-Many (Warrior)Faces! One Goal Stop the Burn! So I could tell people about this and have them ask their doctors about it. I know it wont work the same for everyone but it is worth trying! Have had a few start on it an they are starting to feel a difference in their pain levels! So if you will do Ketamine Infu than you need to try this first. Non invasive and if you have side effects than you will know. But worth trying. takes about a month or so so dont rush it. Please if any questions please ask and will try to answer. I have had no side effects myself on this med. Hope this helps someone! have a blessed day!
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Old 07-25-2017, 10:18 AM
Status: "Happy 2023" (set 5 days ago)
 
Location: So. Calif
1,087 posts, read 842,353 times
Reputation: 2809
I have RSD. The problem with it - it only can be managed with medications (pain). There is no cure. I had suffered for years. In and out of doctors until a new Neurologist shows up in the South Bay area (Palos Verdes). My foot doctor and my Internist both felt this is what I had after exhausting everything imaginable but it was the Neurologist that told me for sure this is what I had.

We think I developed it after foot surgery many years ago. There was damaged done to my nerves after a pin got stuck in my toe (hammer toe surgery). They put pins in to keep the bones fused in the toes but mine was in crooked and the doc could not get it out. She finally took it but I could not walk for two weeks.

It's difficult to diagnose and you have to weed out all the other possibilities. I have Fibromyalgia as well so I have learned to adapt to all of this. Not easy but it's the pain that is difficult. I am on an opioid (patch) have been since 2005. It has given me quality of life which I am profoundly grateful for.

There are many great groups online and on Facebook. I belong to a few. I use to attend support groups but the gal stopped having them. I would love to start one where we live. When you have chronic pain it's tough- really tough.
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Old 07-26-2017, 05:33 AM
 
Location: Florida
23,003 posts, read 24,636,482 times
Reputation: 27599
Quote:
Originally Posted by AngelHair33 View Post
and starting to be prescribed for CRPS/RSD.
I would guess anybody affected by RSD would be interested in this.
But if you've already been on it 7 years and the above quote is true, I have to wonder why I can find not even one reference to it?
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Old 07-26-2017, 11:36 AM
Status: "Happy 2023" (set 5 days ago)
 
Location: So. Calif
1,087 posts, read 842,353 times
Reputation: 2809
It all depends on how long you have been living with RSD - but most often, you end up going to doctor after doctor looking to find out what on earth is wrong with you . This can go on for years as it did in my case. It was too late. The damage had been done. It can only be managed. RSD can jump all over as well and can mimic other diseases. This is why doctors (Neurologists) really go over your history and start dismissing other diseases.

For years, I have kept my medical history on my harddrive - updating it as I go along. You need to do this and trust me your doctors will love you for it. Keep it in order by date.
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Old 11-26-2017, 08:49 AM
 
Location: Planet Earth
2,776 posts, read 2,878,200 times
Reputation: 5018
Quote:
Originally Posted by jmking View Post
Just an update if anyone's interested. My wife had the 4 day infusion and it didn't work. This result could have been the 4 year neglect she received from her HMO. It's a treatment that works the best early on not years later. Next week the hospital is going to try a one day infusion using Lidocaine. The problem with this procedure is that if it works it really is temporary because the lidocaine doesn't stay in your system long but it could lead to a combination of treatments down the road.
Yes,insurance companies and doctors=no treatment. I have been like this since 9-23-17 and they gave me gaba pentin, which does jack sh$%. I am frustrated and pissed. I was a hard worker before this happened to me.
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