New Member butterflyLisa
 

:confused::confused:I was looking at the post. I seen you that some of you have it in the same area as I do with RSD. I haven't walked in 7 months an go to PT 3 times a week. My fear is when I learn to walk again. Can Rsd attack an knock me down where I have to learn how to walk again? I broke my foot back in Aug of 08. 4 cast later foot no better. Seen another Doctor an he knew right away. I get depress but keep on going. I don't like people to see me! Is this common? Oh an can it spread up my leg. It has made it from my foot to my knee. It is always cold,swells,changes color an some days hard to even get up. Yet I force myself. I refuse to give in. I have a walker at home an just got fitted for a prosthetic AFO. I know I have along journey. I feel so alone. Friends have been dear to me. Family members don't understand.
Thank you for your time

Hello butterflyLisa,
bumping up for poll answers and welcomes.

Hi Lisa,
 

Welcome.

Yes to all 4 of those. I think we deal with depression from RSD. I see it around here. I am doing much better, but I have several friends with RSD around here and we do deal with the same issues.

I had spread, I was tired which I finally ended up with Fibromyalgia and Cronic Fatigue Syndrome. A lot of us end up with Fibro along with the RSD.

Yes you do get scared that it will spread and you really have to watch and not fall or hurt yourself in other areas to cause spread more but it can spread anyway without cause.

I think a lot of us deal with depression with it due to the unbelieveable pain that comes with RSD and the frustration of not getting the right help for it.
It's time consuming and they have to find the right meds to help and the right treatments.

Have you had blocks? A lot of people see good with them.

What I have found with my RSD and others around here, we basically become recluses. Even though I am pretty much in remission, I don't like going out of the house.

Hope you start walking better again soon and become painfree. Keep the faith.

Ada

Welcome Lisa.
I've had RSD and TOS since 83. In 98, I got a TBI, and some discs. The brain injury really cost me my life, and it's very slow to rebuild.
My story is posted elsewhere, so, I won't rewrite it.

I can tell you this.
RSD (and all chronic pain things) can be looked at like a triangle of care.

First, your Medications. Your Doctor works with you on this.

Second, your Psychology. Your mood, and how you deal with it mentally. If you are fighting depression, you need to see a psychiatrist who deals in pain management.
There is no reason that depression Must be present with Chronic pain. But, since it "Naturally" occurs, some of us need the support of a psych doctor, who understands pain, and can help you "Build a defense Strategy" to the depression and fear, which are in your head. And, after that runs it's course, you may need to visit again, occasionally, to remind you and help with your strategies.

Third, Exercise.
I see so many people who say they're fighting. Well, it IS a fight, but it's what you make of it. If you're not getting out, and walking and if the RSD or pain has stopped an active lifestyle, sitting on a sofa is going to help the disease take you down quicker!
Exercise is a MUST!
I don't want to sound harsh, for instance, here today, it's cold and rainy, I'm NOT going for a walk outside. But, when the sun shines, so too must I. I get outside and walk!
Your heartbeat must be taken higher, and all organ functions need oxygen. That means working the cardio system. If you don't, the disease will strike at you harder.

This becomes a lifelong process, for most of us. The only ones who have been cured of the disease that Im aware of, are those who Exercised through the pain, early on.

You've come to a good place Lisa!
I only arrived this week myself.
Welcome!
Speak your concerns, and ask your questions!

Best Wishes to you!

ASB
Pete

Hello Lisa,

You have some very good concerns. RSD effects everyone differently. No two people have the same nervous system. The heart muscle is somewhat the same so Western Medicine has come along way with heart surgery. They still have a lot to learn about the nervous system.

You need to take control of your health and become an active participant in your care. Depression is a side effect of chronic pain don't let either run your life. Your attitude to refuse to give in will be important to your health. The advise from Aintsobad couldn't be more helpful. You need to put together a medical team that will be working for you.

Don't shut yourself in your house that's telling RSD it has won another battle in this fight to keep control. You need to get out and see people. Walking can be an issue for me so I walk in the pool at the YMCA. Sometimes with a class sometimes by myself. The water allows you to be weightless so you don't feel the pain as bad. Don't be ashamed to need the support of a walker or cain in public. That's your pride getting in the way. I had that issue to but the cain allowed me to enjoy shopping with my sisters. Something we always do together I just can't do it for as long.

The pain from RSD can take over all aspects of your life if YOU ALLOW it to happen. It causes us to change how we do things in life but don't allow it change who you are.

Welcome to this site I'm a new member but not new to RSD/CRPS.
Sbowling

Hi Lisa, :) Welcome to the site. I say yes to all of the above choices. `:) Dew

Lisa
I got RSD from two stress fractures in my foot.

I wore one of those big "moon boots" on my foot, and was on crutches, no weight bearing for 10 months. Still had pain. Then, some weight bearing, but still crutches for another 6 months, still in a boot, and then no crutches, still boot -- I was in a boot for almost 2 years. Then, got an AFO that went to my knee, wore that for over a year. Still no real improvement. Fractures healed, but pain didn't. They bounced around RSD, but I wasn't sensitive to touch, so thought it couldn't be RSD - well, now we know it was. I went to physical therapy because so much crutching hurt my shoulders, and in the exam for PT, they had me do some movements to test my range of motion, and I hurt my left shoulder, and RSD hit it right now, and HARD. It is my worst spot.

After the AFO on my foot for so long, and the cast boots, I was loosing flexability in my ankle. So they then made me a foot plastic cast thing that lets my ankle move. I still wear that when ever I am going to be on my feet alot. I broke my foot in 2001, so you can see that it has been a long haul.

My foot no longer turns color, the toenails have returned to normal. The skin still gets shiny sometimes, and foot still swells, and it still hurts 24/7 but not quite as bad as it once did.

Bad part was --- I over used my left foot when my right one was casted--- and so 2 years ago, had stress fractures in my left foot. RSD now in that foot too.

Good thing is -- I hardly limp now, cause they both hurt. :D

I don't have any advice, other than the AFO was a lot better for me than the cast boot.

I wouldn't let anyone talk you into a regular cast. When I broke my left foot, now that we are 100% sure I have RSD, I went to a foot ortho specialist... and he said NO CAST! wear cast boot so that you can take it off for swelling, at night, and loosen when sitting so not to aggrivate the RSD.

Best of luck to you on this....

OHHH---- if you have not tried them, Birkenstock shoes, although expensive, have been a godsend to me. Ones that lace work best, but all of them are wonderful. I love the sandals with lots of straps, as they adjust really well to swollen feet.... and you can loosen the area over where your foot was broken.

Jules