[KrisC]

Hi everyone,
I am hoping so much that you can help me.

I have had inner ankle pain since November 07. It's been burning. In April, it spread to my other ankle. The pain is so strange, comes and goes. I've been through every test, nothing. Early this week I was excited to get surgery scheduled with my ortho this afternoon. But now it looks like what I really have is RSD.

The neurology staff at Mass General cannot see me until October.

I am desperate to try treatments to reverse this while there may still be time, but no one seems to be able to help me.

Do you have any advice? I am willing to travel. I am in Massachusetts.

Thanks,
Kris

[ali12]

Welcome to the forum - I am sooo sorry to hear that you too might be dealing with RSD

I myself have RSD in my left leg and right arm, I have had it for about 15 months now - it started in my left ankle when I was 12 years old after an ankle sprain (I am now 13)

I really hope that you are able to get the help you so desperatley need really soon, I am not aware of any doctors in the area you are in as I live in England but I will have a look and see if I can find any.

The best advice I can give you is to keep your ankle moving (even though it hurts a lot!) Start by doing gentle movements and then gradually build them up. Some of the exercises I do, include trying to move my ankle (this is very hard as I also suffer from dystonia as a result of the RSD), bending my knee etc.

Some people say that Epsom salt baths help there pain and swelling for a little while. I have also read that Grape Seed Extract (GSE) can help with inflammation - I have tried it but it didn't do anything for me, but it might help you - i'm sure you are aware that what works for one RSDer will not work for another unfortunatley!

Also NEVER use ice on a limb that has RSD, you can use hot water but not ice - I used ice before I was diagnosed with RSD and it made my pain worse, it was only when I was diagnosed with RSD that my doctor said that I shouldn't have used ice!!

I have also tried a lot of medications whilst I have had RSD, these include, Lyrica, Gabapentin, Amitriptyline (this caused my vision to go blurry and resulted in a knock to my arm and caused the RSD spread), Tramadol, Diazepam, Baclofen, Propranolol, Kenadrin, Morphine, Guanethidine nerve block (this affected my balance and co-ordination), Paracetamol, Ibuprofen and many more.

I also go to Physical therapy on a weekly basis and I also have some exercises to do at home. I am currently waiting to stat an intense PT program and I will start that in July. I also have Occupational Therapy (OT) and see a Psychologist to try and help me come to terms with RSD. I also see a PM (Pain Management) Doctor who prescribes my medications.

If I can help you in anyway please just let me know - I am more than happy to help you.

Love and best wishes
Alison
xxx

[GJmom]

Originally Posted by KrisC

Hi everyone,
I am hoping so much that you can help me.

I have had inner ankle pain since November 07. It's been burning. In April, it spread to my other ankle. The pain is so strange, comes and goes. I've been through every test, nothing. Early this week I was excited to get surgery scheduled with my ortho this afternoon. But now it looks like what I really have is RSD.

The neurology staff at Mass General cannot see me until October.

I am desperate to try treatments to reverse this while there may still be time, but no one seems to be able to help me.

Do you have any advice? I am willing to travel. I am in Massachusetts.

Thanks,
Kris

Get into physical therapy if you can! But make sure it is with someone that know about RSD. Also if you are being told you have to wait till October then you don't want to see that doctor, since all doctors that deal with RSD know that time is very important with the prognosis. Find any neurologist that you can, and go see them. Even if you have to pay out of pocket.
I am really hoping you DO NOT have RSD. But here are some symptoms...
1. It turns purple or blue
2. Very cold to the touch, and I have heard it can also be very hot to the touch, but I'm not sure since mine is very cold.
3. Shiny skin on the affected area
4. Loss of hair in the area affected
5. Pain to the touch
6. dry skin in the area

There are a lot more, but those should help you get started.
Like ALi said make sure you use it. with RSD if you don't use it you loose it!

[Goodn'Plenty]

There are many more hospitals and teaching hospitals in Boston
It is the HUB of University Life.
Tufts University Hospital and Beth Israel come to mind right off the bat
Do a google search and look for their Pain clinics - find a doc that runs it with great credentials You can't go wrong!!!
These are GREAT institutions! There must be others.

Good Luck

GnP

I sent you a PM with more info

[KrisC]

Thanks everyone. It's been a tough weekend for me. It has spread to my arm.

I have been doing nothing but icing it for seven months.

I am just so scared. I think I have to start with a neurologist right, before going to a pain center? The pain center at MGH wouldn't talk to me until they receive a fax from my PCP, so I am working on that.

I feel desperate for a nerve block. I feel like that's my only hope to be pain free again. I can't live in pain for the rest of my life, I just can't do it. I'm not strong enough. The only thing that got me through the last seven months was the belief that the problem would get fixed, and now that hope is dead. I feel so upset that none of my ortho doctors knew. I've gone to five. I thought I was doing everything right and I was doing everything wrong.

Thanks again. I'm sorry I'm such a big baby. I just don't think I can do this. I have kids and I want to run with them. It's in both my ankles and now I feel heat in my right arm, where I got a sunburn two weeks ago.

Thanks for listening, you've all been very kind.
Kris

[Linmarie]

Hi Kris,

So sorry about your pain. If it is RSD, why are they doing surgery? I've had RSD for four years & have seen many ortho docs. Most advise against surgery because they say the possibilty of increased pain is high. But I have heard that if you have a block prior to surgery that will help. Soaking in epsom salt water helps me. Hang in there. Why can't you see a pain doc before a neurologist? I did. Sounds like you need help asap.
Good Luck,
Linmarie

[Desi]

Hi Gary! I do hope you find a good RSD pain management Dr. Gary, first rule... no ice allowed if you do indeed have RSD that makes it soooooooooo much worse. You mentioned your not strong enough in one of your other posts. Hey buddy, if we all can tolerate, sometimes not.. so can you!! You will be helped with some meds, physical therapy, if need be. And the nerve block shots will be given if that is ok between you and you PMD So, just hang on, You will be a- ok, ok darlin'? Love, Desi

[KrisC]

Thanks everyone. I am in a better place. My neurontin dose was way too low the new doctor said, so that will be increasing and may help with the pain. Still not sure if it's rsd, they don't htink so. Just "small fiber polyneuropathy"? I believe she called it? We shall see. I'm set up for a nerve biopsy and another nerve study, different than a regular EMG/NCV. This one's 2-3 hours and measures sweat among other things. We shall see.

thanks again for the kind words.

Kris

[CZZ74]

Kris, good luck to you. Sounds like you are having all the right tests. I have full body rsd. So hang in there. No more ice. you have been given some really good advice here. try to relax the best you can til you find out what is going on- stress agrevates every disorder - I am sure you are aware of that- but if it is RSD- stress really causes problems- so really try to relax.
You must keep the pain level down in case it is rsd- it spreads when you have pain. Take care and keep us posted. CZ