NeuroTalk Support Groups - Our Stories & Introductions

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Our Stories & Introductions (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/10725-stories-introductions.html)

Sorry you have RSD. Yes you will make some more friends here. I came here some years ago and never left because of the people I met. I have PN, not as bad as RSD. I use the Lidoderm patches, and get good relief. Maybe try them on the worst areas you have. I understand why you don't want your mental ability messed with while you work with saws.
You are an inspiration to others, to keep on trucking. No matter what our hurts are, trying to get the most out of life is what it is all about. Glad you like the guitar and play. Head of Joe Bonamassa? Have a good night with less pain. ginnie

No they never caught them. I never even saw the vehicle either, I mean I saw a glimpse of a blur as they passed while I was in the process of falling lol. So I never got a plate number or anything like that.

Oh yeah! I hate that, "you can do it, just do it!" "Oh yeah?!? **** ***

I haven't tried that, I'll ask my doc about em the next time I go in. He gave me lydocane ointment the last time I saw, what a joke that was. But i get where he was coming from wanted to make sure that I'm not some kind of drug fiend since I have long hair and a beard.
*admin edit*

Quote:

Originally Posted by Luthier (Post 1062071)

sorry to hear that, the patches are my port of lost hope when my pain is out of control slap three of them on the worst pain and slowly it will help.

New and I have Some Questions

Hello all– so what brought me here, was in another forum, someone mentioned “CRPS” and I had no idea what it stood for. I looked it up, and to my surprise almost every symptom seemed directed at me. Let me take you back 10 months ago.

Memorial weekend 2013, I was involved in a really bad ATV accident; where I sustained high-energy breaks. I had two very displaced breaks in my tibia, and a very displaced fibula break. I had emergency surgery to fix my leg; which was an Intramedullary nail, and screws. 3 days later, I ended up deathly sick from an infection resulting from one of my incisions. Back in the hospital for 3 days, to get the infection under control.

During the next 6 months I had so much pain, which resulted in another surgery. After my last surgery I had experienced a lot of Achilles pain from taking some of the screws out of my ankle. Finally around February, unable to get out of this major exhaustion and pain, I decided to go in and get a blood panel done; which came back normal. I was told however, the extreme fatigue could actually be a reaction to the anesthesia, and it can last up to a year! Two doctors stated this, but I simply can’t find any info on it.

I’m going in to see my primary doctor next week, because I can’t live like this. I can hardly keep my eyes open, and the pain experienced daily has worn on me. I figured I would get others opinions and see if anyone has any ideas????

I really appreciate any information!

~Becca

Hi All,
I found this forum while trying to research ketamine and neurostimulators. I have had CRPS for four years. I also have fibromyalgia. I was unfortunatly diagnosed late with the crps and so missed out on the early treatments. I kept telling my doctor that is what I thought it was but they didn't believe me. I knew about it because I have a friend who has it. Mine started after surgery. I have had several nerve blocks which have not helped and tried all different medications which I do not tolerate well. I am debating what to do next. I started seeing a new doctor this week who was very nice and he told me to consider the neurostimulator vs the ketamine infusions.

Hello Super girl

Sorry you have CRPS. I know people who have had each of those therapies. I have had Ketamine infusions myself. I think for me anyway, I had to do the least invasive of the things to try. The ketamine did work for me, for the condition I have for a period of about 4 months with good pain relief. This was done under fluoroscopy. Good results have been published through JAMA, and are available at your local library. I wish you all the best. ginnie:grouphug:

Quote:

Originally Posted by glxpassat (Post 1062276)

Hey There! Sorry to hear about your accident. There's a possibility that it could be CRPS, but you are going to want to start seeing a pain management doctor to get an ABSOLUTE diagnosis on that. I might be over stepping my bounds but I think that you should know that CRPS has no cure. They only treat the symptoms which is ridiculous amounts of pain.

I think that you should also look up conditions that mimic the symptoms of RSD/CRPS. In the mean time, it couldn't hurt to start taking Vitamins. Specifically C (in large amounts over the course of a day, it naturally reduces swelling, don't take it all at once otherwise you'll just urinate it out, like 1500mg at a time maybe like 3 or 4 hours apart.) Also Vitamin B12 is good. My personal favorite are the cherry flavored ones. B12 not only boosts the metabolism but it's also good for your nervous system, also in the healing process to make new DNA for cells, I take that after every meal, but not after dinner otherwise you'll be up all night lol. Two others that help with pain are Tumeric, which I've only found in Indian food stores or online, they come in a pill form and I take one everyday in the morning after breakfast. and the other one is Stevia in the Raw. Put a couple of those packets in a pitcher of Ice tea and it can help with pain as well. Now Tumeric and Stevia aren't going to work right away, they both have to build up in your system for awhile before you start seeing any kind of results.

I hope this helps. I've had CRPS for four years, and it helps me, doesn't completely take the pain away but it helps.

Quote:

Originally Posted by Luthier (Post 1062348)

Just wanted to mention as well as no cure there is no test that is definitive proof of RSD or lack there of either. It is a clinical diagnosis and can take a long time and numerous doctor changes. Sorry to hear of your pain, I can only hope for your sake it is not RSD and is something curable instead. I don't know them all, but two of the things that most doctors look for in RSD diagnosis are extreme sweating at or near the worst pain region and a high sensitivity to ice.

Welcome Luthier, though I'm sorry you have CRPS and really sorry about the way you got it - so unfair.

I haven't had CRPS as long as you have. I've had only had it about 15 months, so I'm still adjusting. Like you, I still work full time and am just trying to get on with my life as best I can. I haven't tried very many medications because they all seem to turn me into a zombie, which is no good for work (though there are no band saws in my office :P).

It sucks that people stare because of your handicap tag. Why stare? You have it, so you obviously need it. I'm sure they don't just give those away to anyone who asks. My CRPS is in my right hand/wrist/arm and unless you look closely, you can't see anything wrong with it so people bump into me all the time.

It is wonderful that you have friends that look out for you. I have some good people around me too. But sometimes there is just no substitute for talking to someone who knows what you are going through and just 'gets it' without any need for explanation. I have different levels of explanation I give to people depending on what seems appropriate. My shortest version is - I had surgery to repair torn cartilage; it didn't end well. Lol.

I think it is great that you have been able to continue working. You must have an amazing sense of accomplishment when you finish an guitar. My husband is a musician. He plays guitar mainly (and sometimes bass) so I know how much guitarists love their guitars.

This forum is full of wonderful people. I hope you enjoy being more involved.

KimA

Quote:

Originally Posted by Luthier (Post 1061930)

Hello all.

I think that I actually joined this forum about a year ago but I've neglected to actually keep up on it.

I was involved in a hit and run 4 years ago and I was the one that got hit. I was on a motorcycle. Tore the **** outta my right calf. Blood, muscle tissue, and fatty tissues were all over my bike. Somehow managed to get the bike off me and made it to the closest house to call for help.

I've had RSD in my right calf for about 4 years now. I'm somewhere in between stage 2 and 3 (I lose motor control sometimes but not all the time, mostly at the end of the day). I use a cane when I need to but I'll muster through it because every time I use that damn stick I feel like I've let it win. I don't let it control me. Not saying that I run a mile every morning but I work a lot and I try to keep my mind busy. I have a couple of really good friends that actually look out for me.

Just recently I just gave into getting the handicap tag. I didn't want it one bit, but my friends finally talked me into it. I hate the staring. It's like "Yeah I *******have one, I actually need it, so **** ***

As far as the "Treatments" I've only really done a few blocks and different medications, Which I have signed off on both of those because of the kind of work that I do. (I'm a master luthier, so in other words I build guitars from scratch. I work at two custom shops and I teach others how to build.) there's a lot of woodworking involved with a lot of sharp tools, which is why i signed off on the meds. I don't need to be operating a band saw that could take my hand or even a few fingers because I took cymbalta or lyrica. so yeah **** that ****. But I do smoke weed, not all the time. Kind of a end of day thing as well.

What am I doing here? Well....I've decided that I need to talk to others that have this curse. Hopefully make a few friends. I have some pretty awesome friends but they don't have this. And I can't expect them to understand. And to be completely honest. I'm tired of having to explain it over and over again....

I like that to think that I'm a pretty cool dude. Like I said before I work in two guitar custom shops and I play in a band (bass). For the most part I'm pretty easy going. I've been told I'm big teddy bear (I'm 6'6" and kinda fat, so yeah I'm a teddy bear lol!)

Well that's my story, I'm going actually make an effort to be involved in this forum. I wish you all a good day.

Hi everyone here, I've not really been on this thread before, but I meandered over today...:winky:

Luthier, your story really struck a chord, I have a lot of admiration for you dealing with this and trying to remain who you are rather than let this thing overwhelm you and change you too much. Everyone here is amazing though lol. We need to be. I'm a musician myself, although a totally different type - I play the piano and cello. Our musical abilities might be in very different directions, but that fear the CRPS affecting your ability to do it is the same. I have my CRPS in my left leg and feet mainly (following knee surgery 3 years ago), but it has spread to my left side, including my hand. I'm not as deft wi those fingers as I was, and I play every day to try to keep things moving and as supple as possible. Its scary stuff, there's no denying it.

Love the language and attitude :p I think we need a bit of that to get through all this!! There are plenty of friendly folk here, and we do understand the fun cripsy things that friends and family just can't understand...

I wish you and everyone else here loads of luck as you fight this. We might not win in terms of getting cured (ha, we wish), but we can win in other ways.

Gosh this is rambly and strange. I swear this thing has got to my brains and scrambled them lately! This didn't come out quite as I wanted....but it'll have to do! :winky:

Bram.

Quote:

Originally Posted by Luthier (Post 1061930)