new to board
 

I'm new to this board. I've spent so much time on the "back board" and didn't think I would be here. History...work injury (caught a falling IV pump) and herniated L5-S1 (piece of disc actually broke off), laminectomy ~4 1/2 months ago, two ESI's with temporary relief, still having "nerve" pain in buttock, hip, leg, and foot on right (where injury was) but now also on left. MRI last week shows no more disc material or herniation. Have been on Lyrica and pain meds. Now doc wants to do a sympathetic nerve block. From research I see that he may be looking for RSD. I don't have all of the symptoms, I do have burning pain in both legs (not always the same amount of pain), can't sleep at night, covers hurt to touch legs, no temp or color changes. One site I saw mentioned migraine headaches and I have had two this week alone and I usually just get them about every 4-6 months. Will the nerve block tell him if this is RSD? Will it help the pain for long? Any input would be greatly appreciated. :confused:

Hi there,
Please let me inrodruce myself, my name is Alison, I am 12 years old and I have RSD in my left leg. I also had RSD in my right hand but its got better. I developed RSD in my leg after an ankle sprain. I had six weeks of Physiotherapy and Hydrotherapy but it didn't help me infact it made things worse, I started developing muscle spasms, swelling and hypersenstivity. My foot started rotating out to the side. The physiotherapist told me and my mom that I was making the injury up. My mom went mad and took me to another hospital, I was admitted straight away and they did blood tests which said that I was at risk of developing Arthritis. The doctor told me that he suspected RSD but to be sure he had to transfer me to another hospital. The next day I was transfered and diagnosed with RSD type one. The next day my PM doctor performed a sympathetic nerve block (Guanethidine block) which did not work, instead it caused me to have severe balance problems. If I was you I would research about the block you are having and ask you doctor what the side effects are.

Two months later I was prescribed Amityriptyline to help me sleep. I developed a nasty side effect of Blurred Vision and this resulted in a knock to my right arm, I was diagnosed with RSD 2 weeks later.

It would appear to me that your doctor is looking to see if you have RSD by doing a nerve block. This does not help with the diagnosis because in some people the block works and in others it does not. Diagnosis is based on the symptoms you are experiencing.
The blocks can help your pain for a few days/weeks or months and in some cases even years! And some blocks don't help many people with RSD

The symptoms of RSD are:
Severe pain
Hypersenstivity
Muscle spasms
Colour changes
Temperature changes
Nail changes
Swelling
Migraines/headaches
Memory loss (in some cases)
Depression
Bone changes (in severe cases)
and many more, if you have three or more of those symptoms then the chances are that you have RSD (well thats what my PM doctor said) Personally I don't like my doctor.

Do you see a Psychologsist? Psychologist can help you cope with the pain and depression that you have.
Have you seen a Neurologist? They help with the diagnosis, although your PM doctor can do diagnose you.
Do you see a Physiotherapist? They help with your movement etc. In some cases Physiotherapy can lead you to a recovery.

If you think you have RSD do NOT put ice on your affected limb(s) this can cause more pain and it can cause you skin to crack, change colour etc.

I also suffer from something else called Dystonia which I developed as a result of RSD. Dystonia is a movement disorder than many people with RSD have. Dystonia causes muscle spasms, movement problems, locked limbs that you can't move, co-ordination problems and balance problems.

These websites might help you:
http://www.rsd-crps.co.uk/crps.htm
http://brain.hastypastry.net/forums/index.php
http://www.bbc.co.uk/health/conditions/rds1.shtml
http://www.arc.org.uk/arthinfo/patpubs/6035/6035.asp

If you need any help I AM here
Sorry that this is long
Alison
P.S: Welcome to neurotalk, you will find many other people that are willing to help you and they understand what you are going through
Take care

Hi and welcome to the forum,
 

I had 3 blocks that did put my RSD into remission. They can be used to diagnose RSD. Others will come on and tell you their experiences.

I have blocks before any surgeries to help keep it from spreading or coming back out and that has been helpful.

Some people don't benefit from blocks. Some say it's because of the time lapse between getting the RSD and getting the blocks but I believe that they can help some no matter how long it has been between getting RSD and getting blocks.

Everyone has different symptoms for the RSD. I had both temperature changes and color changes but since the blocks I only get the color change when I walk and let my hands swing and swelling comes with the swinging the arms too.

What I remember talking about on here too is how different symptoms come at different stages of the RSD.

Ali had a bad experience with her nerve block and sometimes people do. On my 3rd one I had a bad experience but I believe I had a panic attack that messed me up.

I am not sorry I got those blocks. They were the best thing I could have done to try and help put my RSD into remission. It kept me from having to take a lot of meds also which I hate to do.

Good luck and let us know how things go with you. Stick around, you will get more answers here soon.

Ada

Like, Ada The nerve blocks were a God send to me! I had 2 nerve blocks so far and I will know for sure if I am indeed in remission.(I go to my PMD in 3 weeks, or is it 2 weeks? LOL gotta check my calender). I have no pain, since the 2nd. nerve block was done on Nov. 1st. I don't know how to act anymore, since pain was my shadow . It's great to feel "0" pain. My first block lasted 4-5 hrs. the 2nd. block lasted a good 14-15 hrs. I would also like to welcome you here and I hope you stay, because there are lots of nice people who can give you good advice. Good luck ~Love, Desi

dham,

Welcome, this is the best place for you right now. I've only just arrived myself and I have received so much good information and support from the nice people on these forumns. It will defiantley change your life reading what others have through here and what experience they have to help guide you.

I wish you lots of luck in your journey to come, I'm thankful you have found this site as well. It will definatley be a good support system for you in so many ways. I do hope you feel better as well. My heart goes out to you.

Please keep us posted on your treatments.

:welcome_sign:

Hi there. Nice to meet you. Sorry it has to be because of RSD/CRPS.

I had an ankle sprain just over 2 months ago. I told my doctor that I felt pain up the sides of my lower left left to my knee and a couple spots around me knee. The pain kind of came and went. I was told to wear an ankle tensor or wrap it in a tensor. The pain from wearing it though just got worse and worse as time went on. I finally couldn't wear it anymore and then I couldn't even wear my boots or shoes or a sock. The pain was just too much and yet it was all so inconsistent that I didn't know if I was really experiencing it as bad as I thought or ? After a month of my doctor not knowing what was going on I saw another doctor that said CRPS. Even when he saw it there was very little swelling, I told him it hadn't swelled yet so? And that the skin was drying out in patches on my left foot but not on my right (actually I just noticed it at the time of my appointment) and that I thought my toes/foot was colder on my left than right foot. He said yes it is colder. But, he could move my ankle around no problem but I couldn't put pressure on it for too long without getting pain. Within a week I was having severe migranes, though I never thought to associate it with any of this. My foot would change color every once in a while and the swelling stayed minor.

I had an MRI and nerve conduction testing over the next couple of weeks which showed nothing. My toes then started to feel like they were sweating a bit, like a cold sweat was covering my foot/toes.
I then had a functional assessment on a Tuesday for WC. Friday the pain was INCREDIBLE in my foot and leg. I didn't realize that the pain in my other leg had started off/on for about a week. It would burn in all the same places as my other foot and has followed a similar pattern as my left foot/ankle/leg up to and including now. What's worse. About a week later both my arms started to burn. They burned so badly and my wrists hurts so much I couldn't chop vegetables without crying. I was also freaked out. That pain would come and go in both hands. They would tingle, get shooting and shock like pains and burning. I tried to squeeze them and the pain would slowly start, aching and cold burning and more aching.

A week later I started physio. Two days into physio and my whole body was set off! I burned from head to toe and didn't know what was going on. Wednesday I couldn't stand the feel of my clothes anywhere on me. I was so uncomfortable and burning. Pressure made things worse. It was horrible. I was then given something to help knock me out and relax my muscles. It was a strange sensation when I woke up because some of the pain was still there in all the key places it had initially shown signs of starting but the rest of me calmed down. The next two days weren't too bad but then today I am back to burning head to toe. Mild and manageable but gets to be trying. So, now I have pain in my arms, shoulders, neck, back, legs, butt all the time now. I am on gabapentin but it takes 6-8 weeks to prove effective. Some sites suggest that if no progress has been shown after 8 weeks to stop taking it. Now I have Amitriptyline to help me sleep at night but I don't seem to be getting a results from that.

So, my symptoms have been getting progressively worse with time. They have come and gone. I have had cold limbs, warm limbs, cold sweats on my limbs and at night early on. I have had migranes, they went away after I started the gabapentin. Discoloration off/on. My nails on my toes are starting to ripple/groove. Swelling has gotten a LOT worse in my original injury area, that is when it decides to swell. I have a tough time tolerating the feel of fabrics or pressure on me. For the most part I can tolerate it but it is like when it brushes my skin it is similar to getting a rug burn. When I stop moving it calms down. If I brush my arm with my hand lightly it will be followed by a burning sensation. I find my limbs outside of the original injury to be more sensitive to lighter touch. I cannot tolerate any prolonged pressure or standing without experiencing severe aching, throbbing and outright pain.

That's me. Sorry it was so long winded....hope I was able to help. Take care J

Thank you all for your input. On one hand I hope it is RSD because then I would know why I hurt so bad. But then I read that it can be very dibilitating for some (wheelchair!!). I just kept thinking it was all related to my back, and it is, just indirectly now. If this shot helps will that be the diagnosis? When I see the PM will he decide from my symptoms before we schedule the injection? This is the PM doc who did my ESI's when he and the ortho surgeon felt it was still related to the disc. Now after the MRI the ortho recommended the sym nerve block. I haven't actually talked to the PM doc again, I see him on Tuesday. What are some questions I should ask him? I see that the Neurontin has helped some of you. Side effects? What should I expect after the injection? Down time? Pain? sorry so many questions.:eek: I'm really struggling here!:Help:

Again....are any of you able to work with this? I'm on W/C and struggling to work 4 hours day. Thanks again! By the way...I now had my third migraine of the week.

Hi,
I am only a child so I do work, I am in high school. I find it really hard to go to school. My schools letting me go on a part time basis of 1pm while 3pm but I find it extremely difficult to go. It is the pain that stops me from going.
Love Alison

sorry ment to say I am only a child so I don't work

I have my appt tomorrow with the PM doc to discuss the sympathetic nerve block. Any suggestions for questions for him? Again, are most of you able to work with RSD? Thanks for your input.

Deb

Hi there,
Hope you are Ok, good luck with seeing your PM doctor tomorrow.
Questions to ask him about the nerve block:
1. What are the side effects of the block?
2. How long do most people get pain relief for?
3. Am I awake or asleep when you do the nerve block?
4. Where do you inject into?
5. How many people have you treated that have had some pain relief from the block?
How are you
Take care
ALISON

hey i am lauren and have been off for a few days but i wanted to try and answer some of your questions.
the sypathetic block goes into the tier of your back that is involved...i have lumbar sympathetics...in my lower back.
i have had a lot of sympathetic blocks (once a week) and only once did i walk out in worse shape than i went in. the problem with that one was when my meds werent given until seconds before and didnt start working before she started poking me, so all of my muscles tightened and i was in spasm for days after.
the blocks really are the best way to figure out whether or not the problems are related to rsd...and the docs are usually very good at making sure you are comfortable throughout the procedure.

Thank you all so much for your responses and support.
I saw the PM doc today and he feels that although I have some of the symptoms of RSD he doesn't feel that he can make that diagnosis at this time. He said it does not mean that I don't have it though. He is still recommending the sympathetic nerve block. He thinks there is a good chance that it will give me relief over a period of time. I have it scheduled for Dec. 5 and I'll continue with the Neurontin until then and if I feel better I may put the block on hold. He feels the scar tissue from my laminectomy is causing most of my nerve pain.
Thank you all again, best of luck to everyone and God bless each of you!:Girl(angel-flying):

Hello there. First, Welcome! Secondly, I sure hope the doctors find a dx for you and can help you. I went around with doctors saying I had RSD and some saying I didn't but finally saw an experienced doctor who recognized it was RSD with a rare presentation. What area do you live in? I have several doctor recommendations so if you'd like, please PM me.

I found this video of sympathetic blocks and thought it might help you. :)
http://www.rsdfoundation.org/en/en_c...l#NEWNerveBLKS
Pain free hugs xxx