I've read some older threads on sympathetic nerve blocks, but I couldn't find much from people who've had RDS as long as I have.
I hurt my foot seven years ago, but it wasn't till about a month ago that a doctor finally suggested CRPS/RSD as the root of my pain.
I was scared to try Lyrica, so I'm sitting here with a crazy-numb foot, having just gotten my first sympathetic nerve block (administered in the ankle).
Finally, my question!: What have your experiences been with sympathetic nerve blocks? I'm interested in all responses, but in particular from those with old injuries. Though my foot is in bad shape, the pain's never spread and isn't constant--just when I'm weight-bearing, and I'm usually on crutches only a month or so out of the year.
I appreciate any insight! Thank you.

Hi Mimichicago,


Welcome to Neuro Talk. I'm sorry you have RSD. 7 years is a long time. I've had it 12 years and now full body or generalized. It started the day after surgery in my left arm, moved to the left shoulder, frozen, therapy and then right shoulder frozen, more therapy, then left hand, frozen, misdiagnosed, then went to a new Dr. and Diagnosed RSD 4 years after the initial trama. No, I have'nt had a nerve block. Have full use of both arms and shoulders due to a lot of p.therapy and massasge therapy/ My left hand not so good, had therapy but too late, partially frozen fingers and partial use of hand. Rest of body can use, but ongoing pain, skin lesions, the spasms, jerks, jolts, controlled by being on neurotin3200 mg, then lyrica 400- now down to 100 lyrica and symptons haven't come back. Have high blood pressure, and a very good Dr. that I see monthly to control pain and symptoms. Checking into have HBOT treatment now. Hope the best for you, I've heard blocks work even after long periods of time passing with diagnosis. Take care, Loretta

I'm going on 6 years now. It started in left knee/lower leg/foot. It spread to all 4 limbs,hips and tops of shoulders in 11 months, and in the past year and half I guess it's been or so, it's gone into upper back and lower back.

I was made by work comp to get 1 block, a lumbar since it was my leg, and well....it didn't turn out good for me. I was in agony from the neck down for 2 months without a break. All it did for the 1st couple of hours was bring the temp of my leg up to "normal" and made the color of my skin "normal". Then, like a switch being flipped, it went straight back to freezing cold skin and that nice purply-pinkish-bluish color it had been since the rsd began.

You said you got the block right in your ankle. That sounds like a bier block to me. I tend to think of a sympathetic block as being a lumbar (in the lower back) or a stellate ganglion (in the neck). I never looked at any other kinds but I know people here have had just about all kinds!

Hugs,

Karen

I have had RSD since 1989 and have had 3 series of 10 each blocks. They worked for me but only temporary. They were like a mini vacation from the pain, but not lasting. I now have full body RSD and have tried HBOT with sucessful results. I hope things get better for you. Keep us posted. Diana

Thank you all for your responses! I got scared last night when the swelling/heat/discoloration seemed to be getting worse and worse, but it's visibly calmed now. I haven't tried to walk farther than the perimeter of my apartment, and the pain's mainly been odd pinches in the side of my foot, where the suffused pain is usually the worst. We'll see if I can get to work tomorrow--four-block walk to the train, and the sidewalks are too icy for crutches. I have no backup plan at this point, so wish me luck!

First of all, Hello and Welcome to Neurotalk!! I am so sorry to hear that you also suffer from RSD and that you have had it so long . I suffer from RSD in my left leg and right arm, I developed it when I was 12 years old and am now 13.

I have only had one nerve block which I had about 5 months after the initial injury which caused the RSD when I was first diagnosed. I didn't respond very well at all and developed some pretty severe balance and co-ordination problems. When I woke from having the block (I had it under General Anaesthetic because of my age), I couldn't walk at all and every time I tried to do so, my leg would just shoot out in front of me and I would fall to the ground.

It was only when we eventually got home that my mum looked on the internet and read an article stating that you should never inject directly into a limb affected by RSD unless you absolutely have to. My Pain Management Doctor didn't know that at the time and injected a drug called Guanethidine into my ankle that had RSD. I spent 13 months in a wheelchair and it was only when I went onto an intense PT program that I begun walking again, although I can still only walk short distances.

I don't want to scare you at all and really hope that I haven't. I just wanted to share my experience with me just so that you are aware. I really hope and pray that the nerve blocks help you and am keeping you in my thoughts!!

Hi Ali,

I just wanted you to know how sorry I am for the loss of your grandfather. I was close to your age when my grandfather passed away. and that was 45 years ago. I often think of him, a gentle man, loved animinals, I spent every weekend on the farm, riding my horse, collecting eggs, helping feed all the animals.It was wonderful.

That's one thing that has helped me pass over the depression. being grateful for the many good things and people, the wonderful memories, obviously I have more years on you. I never give up hope for you. Have you been checking into HBOT. I talked to Diana A and was very encouraged. My pain mang. Dr. I see once a month, has just ordered two HBO hospital grade for two clinics he is building. He is a neurologist, pharmacologist, and psychiatrist. teaches regularly, and part time practice. The Two HBO's will be within 10 minutes where we live.I've very excited about it and now looking into our insurance.

We have one daughter, age 29, and are very close. We both were very active physically before I got RSD. She is married now and has a wonderful husband. My husband and daughter have both been with me to the Dr. and have done research on their own about RSD. It makes me sad they are so knowledgable. She is a court reporter and has done a deposition on a lady with RSD. I don't think it's a job any of us could handle, but very interesting due to the variety of subjects and ongoing knowledge. Her husband is a commercial airline pilot. I was injured 4 months after they married, water skiing, and was in remission before that, so we traveled a lot together, the 3 of us. My husband takes good care of me like your mom. She sounds so sweet.

Take care of yourself. Do you have skin lesions? I've had a rough two weeks and broke out in blisters WOW hurts. I have full body RSD, fibromyalgia, and left temple trigeminal nerve( bottom part of my face to half the lips.

Do you have opportunity to swim in warm water? pt in water is just the best and easiest on your body. We live in Arizona and have a pool, so it's wonderful to keep stretching and keeping the limbs moving. The only one that is permanently paralyzed is my left hand, kind of like a claw. had both shoulders frozen, but with about 150 pt treatments got nearly all use back. We really can slowly keep moving and not give up. I can cut up food, and have desensitized my whole body. It was worth it and massage therapy, played a huge part in it.

I have a cat named Sabrina, She is a maincoon cat, very 'one person' animal. She sleeps every night with me and has long fur and very affectionate.

I want you to know I read every one of your posts and enjoy them. What I see is your sincerity and caring manner. Your kindness and softness shows thru in all your letters. That's why everyone is drawn to you and feels so compassionate toward you. It hurts us all so much you have this at such a young age. We want you to have the freedom of health and youth that belongs to you. So keep stretching and doing what your Dr. encourages you to do. It's stuff managing that 'Stress' stuff isn't it. We all have it , it's how we react to it that makes the difference. I went into counseling after my partents died, and it helped a lot and then about 4-5 years ago I started again, to help deal with RSD in a positive way and focus on the positive the grateful things to think about.

Take care, Alison. Get your rest and pace yourself on your school work. Friends, Loretta Jewell

Hi Loretta,

Thank you so much for your kind words and for taking the time out to respond to my post - I truly appreciate it .

I am so very sorry to hear that you have full-body RSD, I really hope that things start looking up for you soon. We have looked into HBOT quite a few times but my Doctor feels that in my case, it wont help and isn't worth spending all of the money on. It is still something that we are looking into though and is always in the back of our minds. I haven't found any medications that help me so far so i'm not on any at the moment. I do take Ketamine when needed though - that is the only med that takes my pain down quite a bit however I am only allowed to use it on my really bad day's as my PM Doctor feels it is way too risky for a person of my age.

I am supposed to be going to London in January for a 3 week inpatient, Physical Therapy Program and the PT's are wanting to put my leg into a full leg cast. I am REALLY scared about that and don't want to go there but they feel that it is the only chance I have of getting my leg into a straight position (at the moment it is severely rotated due to the Dystonia). I've spoken to my mum about it and she doesn't really want me to go either, she would sooner have me try something else and have the casting as a 'back up plan' - my mums the best and it really helps when someone actually understands some of what I am going through. I don't have that many people that understand.

We don't have use to a hot water (aqua) pool here at the moment but I did do aquatherapy before I was diagnosed with RSD and it didn't help me at all. I found that the water was way too painful for me and I could hardly tolerate it. I have spoken to my PT's about it and they said that because it didn't work in the beginning, it probably wont work now. At the moment, I am having weekly PT at my local Children's Hospital and am also doing exercises at home on a daily basis.

I do have pretty bad lesions and they really hurt. My doctor say's my skin is really brittle because of the RSD which is why I get them. I was told not to do anything with them and to just leave them until they heal but it's really hard because when I have them, I am unable to wear any socks which I need to wear to try and get rid of the hypersenstivity.

I am so glad that you have such a supportive daughter, that's great and I know how much it helps when people actually take the time and effort to see how you are doing and to make sure you are OK; it makes the world of difference!

I'm also glad that you have a cat. I have a dog, hamster, African Grey Parrot, Chameleon, Chinchilla and some fish and they really help keep me sane. With everything that I am going through right now, they have really helped me to try and get rid of this depression that I have. I love animals, they are always there for you no matter what and don't judge you.

Take care of yourself and I hope you're having a good day.

Alison.

Hi, our "Little Yorkshire Lass!" I was wondering if you know about the story of Zoe? You probably do. I'm not sure where in Engalnd she lives, but she had great sucess with HBOT. Her story was on mystery diagnosis a few years back. Well "Happy Christmas" to you and yours across the pond. We have gotten Christmas cards from family in Scarbourogh, Blackpool, and Yorkshire. Snowing and cold I hear. Its 60 degrees here in New Mexico. If you have the option you might keep open to HBOT. There are a few people on the UK forum that have tried and have had benefits. That forum has been slow for a while. I use to talk to a lady named Sue in the UK, I need to reconnect with her. Well... All the best..Di

Thank You Diana for your kind words !

Yes, I have heard about Zoe Pearson, she was actually treated for her RSD at the same hospital has me and is now a medical student training to specialise in RSD and other Chronic Pain Syndromes. I have spoken to her quite a bit although have never met her in person ... my PT's have also told me quite a lot about her and her story and success with HBO.

I am keeping the HBO in the back of my mind however when my mum spoke to my Doctor, he said that in my case, he really doesn't think it will help me. I don't want my mum spending that much money on me also if it isn't going to work but I guess if I never tried it, I would never know if it would work or not. A while back, we went to a HBO centre in Leeds (UK) and was due to start the HBO however I went onto the Intense Physical Therapy program about a week before I was due to start so we never got round to starting.

Here's Zoe's story for those of you that haven't seen or heard about it:

http://news.bbc.co.uk/1/hi/health/3383965.stm

Thanks again!