Newly diagnosed
 

Hi there
Ive just been diagnosed with RSD in my left leg following a recent ankle injury. I was wondering would anyone please be able to give me some adive please?
These are the symptoms I am getting:
Breathing difficulties
Colour changes (for example one minute its mottled the next its bright red)
Temperature changes (one leg warmer or colder than the other one)
Sharp stapping pain
Burning pain
Swelling.
My ankles turned out to eversion

Ive been prescribed Gabapentin and recentley Ive had problems with my balance, could you please tell me if this is a side effect? Ive also had a nerve block under anastetic but that was several weeks ago
Please give me some advice.

I'm sorry to hear that all of this is happening to you! All of the symptoms you mentioned are classic of RSD, except for the breathing difficulties. That one is probably important to get checked out further, to see what's going on.

I had some balance issues when I first started Neurontin/gabapentin. It's a very common side effect. If you can stand it, keep going with the medication. Eventually, the side effects might get better. I stopped it after two weeks the first time I tried it, but when I tried it again later, I lasted longer and the side effects subsided after a while. Unfortunately, it didn't really help me much!

I don't have much advice. For swelling, I usually wear a long soccer sock on my RSD leg. It keeps the swelling down a bit and has the added benefit of acting as a barrier between my leg and the rest of the world...so my pants leg doesn't directly touch my skin. That helps a bit.

A warm bath might help with the temperature/color changes temporarily. It may also help a bit of the pain. I find that it helps a little bit, and also loosens up my muscles. I take a hot shower before bed every day as a result.

Other than that, please find a good doctor! From your posts, it looks like you're in the UK. Is that right? Hopefully a girl called Frogga will come along soon. She's also from the UK, so she understands your medical system (the US is completely different, so most of us don't get it at all)!

Oh, one more thing. I really recommend that you find a hobby (if you don't already have one) that doesn't cause extra pain and immerse yourself in it. Maybe find several hobbies. Distraction is the best thing for RSD. If you're not thinking about the pain, it won't upset you as much. I found that I needed to keep myself in the "real world" (as opposed to the "RSD world") or I would get depressed.

So if you like art, spend time drawing or painting. If you like games, play lots of them. If you like writing, write lots of stories. Find an activity that will take up some of your spare time and make you feel good about what you CAN do, because it's so easy to feel bad about what you can't, especially when school starts and you'll be around other kids who do all sorts of stuff you wish you could. So find something you can do, that you ENJOY, and concentrate on it. My distraction is music (playing it, not listening...listening isn't active enough to count because you can still think about the pain while listening). I really think you should find what you like to do, and make sure it's something that requires your full attention!

Good luck...I hope I'll see you around the teens list soon.

-Betsy

Hey Alison,

As Betsy said - I am one of the few UKers - so if you are English then hey! (but actually, I guessed from your email that you were American!, please tell and put us all out of our misery waiting to know!)...

swelling - keeping your leg up when you are sitting might help. As Betsy says things like tubigrip (UK), soccor socks or other stuff can help with reducing the swelling as well if you can wear them. Also trying to keep the blood moving will help pump the fluid back into your body so it isn't sitting in your leg.

colour changes - keeping your leg up when you are sitting might help with this as well as well as with some of the pain. Heat helps some people as does things like wiggling toes/ keeping blood moving in others.

Eversion - so your foot points outwards? Can it be twisted back in to straight? or strapped straight? Did I get it right and that the RSD affects both ankles or simply one?

Breathing difficulties - you should contact your dr about this!

But, as I said earlier. Many young people/ teenagers get better and recover/ go into remission.

Love

Frogga xxxxxxx

super advice betsy.
i cannot wear anything with elastic on my legs. it hurts so badly. i use all cotton socks and in the winter fleece socks for warmth and they have no elastic.
also epson salts in the bath are the best . i get some with lavender in them and they are sooo relaxing and do help with the swelling.
the eversion might require a brace to protect the ankle from weakening. that needs a good physical therapy doctor to advise.
and i put my feet up and down so much in one day and i try to keep my feet moving whan i am sitting.
the breathing could be a side effect of fluid build up from meds and needs to be addressed quickly ....
joan

Get to an RSD specialist and get a block. If this is done early the chances of success are high. If you wait more than two years it tends to become intractible.