New user with CRPS and TOS
 

My left hand burns so this will be quick. But I need help please.

According to my new pain specialist, I have CRPS due to my TOS surgery. He says I am in the early stages. I have burning arm/hand, upper back&neck pain, sweating from chest down(possibly due to hyperhidrosis surgery for profuse facial sweating and redness, sounds pretty huh?)hand weakness and I am unable to do ANY kind of activity without "setting off" the symptoms within 15-30 minutes from the start of the activity. He wants to do the ketamine infusion. I am not really sure I agree with his DX of CRPS, but we are out of options. I do not have severe pain with light touches, such as the feathers seen on video clips, and I do not have swelling or color issues with my skin. What do you think? H owever the burning can be hurt as bad as a
8 or 9 on the pain scale.

Hx: Arm burning and neck pain began in 2004, "Pop" while scanning a patient in neck resulted in Annular tear at C5-C6 with herniation at C6-C7, fusion done May 06. Dx with TOS, but they had to fix neck first to make sure.
Feeling great 6 weeks post op I went back to work as a sonographer. Had sympathectomy for facial sweating and redness, seemed to work. Arm/Hand Symtoms returned within one month of my return to work. Went in for TOS surgery. Felt great for two weeks. Symptoms returned. Only difference, I can hold the hairdryer over my head with out my arm falling down. Negative nerve study and negative carpal tunnel. Last MRI showed buldging above plate in neck at C4.-C5 Age, 38, two small boys, not working, Workers comp rejected. No disability help from uncle sam. BROKE!

Please give me your thoughts, stories, theories, and inspirations(hopefully)

Thanks.

First welcome,.....second, I'd never ever ever have a sympathectomy with RSD, ever...thats like the worst thing to do....read up on this alot...

third....if your early stages, get stellate ganglion blocks asap..read up on them..they can help with remissions in very early stages......


Good luck .. read and research everything, never jump into anything when it comes to RSD.

Debbie

I didn't do the sympathectamy for RDS. I did it for hyperhydrosis, however, it may pay a role in my symptoms. Oh, and I did get the blocks already. No help. Thanks for listening, I'm doing all the research I can. Thanks.

hi Dianna, I hear your frustration and concern over this disease. It leaves a person just sitting there in shock when everything was fine previous to the trauma that occurred. I have had RSD now for almost 4 years.

Go the Department of Vocational Rehabilitation in your town. They can help with employment supports and signing up for any programs you might be eligible for. It is a free service and is all about assisting a person to obtain or keep their employment with their disability issues. You don't need a referral just get the initial appointment.

I will be praying for your pain level to be low and that you will find the right treatment. Do get things done in the beginning stages. As I am reading too that that is the best prognosis.

I keep jumping back and forth about the ketamine infusion. Have you done this yet? Do my symptoms sound familiar?

It really does sound like you have it Dianna. The best way that I have had to describe the pain is its like a porcupine, electrical feeling. The burning is just that as if you had been burned. My feet now are red and swell. I have RSD and lymphodema in my left foot.
I do need to keep the medication levels up. I take neurontin 1500mg a day and hydrocodone 750 (4) day.
I tried Methodone and could not do that one, I had slurred speech and not able to get my thoughts out. It wasn't a high either it was like a delay. I felt perfectly fine. Just couldn't talk so not able to work when I was in that state. I also tried cymbalta that did not work for me.
I have had 2 nerve blocks. The first did not work and they went in and did it directly into my leg rather than the spine. That helped a lot.
I am only now hearing about the Kenatine so I didn't realize that was a treatment.
How frutstrating Huh? I almost fear when night comes and the need to try to sleep. The worse time for me.

Hi there,
I am so sorry about what you are going through ((hugs)) I really do hope that things start looking up for you soon
it does sound like you have RSD.
I haven't had the Ketamine pump done. Most PM doctors will only consider doing the ketamine pump if all other treatments fail.
If you need anything just ask, I will try and help you if I can.

Take care
Love
Alison

Hi Dianna,
 

Welcome to the forum. Sorry to hear that you are going through this.

You sound a lot like I did when I first started. I had TOS surgery and ended up with RSD. As Gigglebabe said, I have never heard of the sympatheomy working for anyone for any long length of time. Most people get worse because of them I do believe.

A lot of people are talking about the ketimine infusions on here. How are you having them done? My Dr. gave me ketamine shots along with other meds along the way. Triggerpoint injections they are called. It takes many of them but it was one way of getting it calmed down. I had the burning in my chest, neck, hands arms, back. Like you, I was a mess. I had 3 SGB's and they did help.

I had TOS surgery in 2000 but I do believe I already had the RSD and it just wasn't diagnosed until after the surgery. I was pretty bad off before the surgery.

As far as the disablility. Someone will most likely find this article for you that I am talking about. It's for Social Security for RSDS. I believe it's some new bills SS has passed. You can get SS on this. It might be a fight but it can be done.

As far as work, if you want to go back to work, do as one said and check into rehab. It will be a long battle and they might still tell you they can't get you back to work. That's what happened to my husband years ago. They tried to rehab him and then decided his health was too bad. I hope that won't be the case for you.

Welcome to the forum and you will get a lot of advice from these good people here. It seems like we have been through everything there is to go through at this point all together.

I am on Methadone for pain. Most people can't handle it. My dosage is very low but I have noticed that if I up my dosage my pain does pretty much go away for what time it's in my system. I am close to remission though. It took 7 years to get to where I am.

Like you though, I have neck and back problems. I was also diagnosed with Fibro, Cronic Pain Syndrome and Central Sensitation Syndrome around the same time as the RSD. The TOS Drs. in Denver diagnosed all of those. The reason I am telling you this is sometimes people have more going on then just the RSDS so you might want to address that ideal. Fibro comes a lot of times with RSD.

Lyrica is a new med out for nerve pain. People are swearing by that one.

Good luck and welcome again to the forum.

Ada

Yeah, nights are hard for me as well. My kids keep me going with or without pain. At night, when its quiet, I am more aware of the pain. The porcipine electrical feelings are a perfect description for my pain.

I had two ganglion nerve blocks and two trigger point injections. Cymbalta gave me TERRIBLE nightmares! It seemed like I tried neurotin or trazadone for a while but it was to hard to get up in the AM and my 3 & 5 year old dont give me any breaks in the AM! My doctor feels that the ketamine is my final hope.

I cant help wonder if my c4 buldging disk is causing all my problems. My pain is constant, but worse in different positions.

Would you do the ketamine infusion?

Thanks Alison, How long have you been in pain? What treatments are working for you? I'm so sorry you are going through this at such a young age, I hope you get out often with your friends. I feel like such a shut in these days. Good luck to you.