I just got a diagnosis of Reflex Sympathetic Dystrophy

[cali]

I suffered a bad segmental fracture of my tibia and a segmental fracture of my fibula 7 months ago and the tibia still isn't healed. I have an IM rod from ankle to knee. An IM rod is placed within the bored out bone and fastened with screws. I had another surgery 6 weeks ago to help the tibia heal faster. I'm still on crutches.

(So why is pain so embarrassing? I'm embarrassed that I'm still in pain. )

Anyway, I saw my surgeon today for the first time in several weeks, and he diagnosed me with RSD. I'm still trying to figure out how to deal with this. I mean after all, I thought I broke my leg and I'd be walking fine within 3 months. Now it's 7 and it's not just he pain, my leg, ankle and foot swell horribly whenever I don't keep my leg up and immobilized for most of the day (and night) That's one of the symptoms of RDS. So is the stupid pain and the discoloration.

I think I'm going to have to break down and buy new crutches (mine are old, wood and duct taped).

I think I'm going to have to get a handicapped thingie for my car.

I think I'm going to have to think about all this in a different way.

[libodem]

1. So sorry

Expecting to get better and then not sucks. My last back surgery was a bust. I feel empathy but I'm sure that doesn't help much.
I limp and it makes me feel embarrassed. I'm at an age that I would prefer to disguise, not accentuate. Dragging my leg around really inhibits my sexy walk.

Bone pain is awful.

[Warpy]

2. I'm so sorry about this. Nobody knows why it happens

just that it does. However, telling you to buy a better set of crutches while leaving you in pain is inadequate.

Some of the treatments are described here: http://www.aboutrsd.com/treatment.php

Referral to a pain specialist will get you some of the better treatments, drug and non drug. Referral to physical therapy will allow you to regain as much function as possible.

You'll probably get a handicapped thingie for your car. Since you'll have good days and bad days with appropriate therapy, you can decide whether to park close or leave it for someone having a worse day than you are.

In other words, what you have now isn't going to be like this for the rest of your life if you get treatment.

[cali]

3. thanks Warpy. that was encouraging.

[ProfessorGAC]

4. Wow, That's A Drag

Is the pain localized at the break or is it the whole leg? No science behind my question, just wondering.

I have MS pain in my lower legs all the time. For more than 15 years. Believe it or not, a lot of us learn to block out some degree of it. It makes getting through the day much more possible.

I don't, however, have any disability or dysfunction from it. A minor hitch in gait, but nothing that really affects me.
GAC

[cali]

5. It's pretty much the whole leg

and that includes the crazy swelling. Of course I still have a bad fracture that I'm walking on so.....

I can block out the regular backdrop of pain to some degree but walking really sucks.

[Drsdman]

6. Cali

You didn't mention what the pain feels like. Now that the medical community is finally becoming familiar with it, some doctors are incorrectly diagnosing it when they cannot figure it out. My wife is a surgical nurse for your type of surgery. If it feels like something isn't healing then something went wrong in the surgery, out the rod may be defective. For instance, several years ago, a company that makes some rods altered their cleaning process to save money and was unintentionally leaving a microscopic later of oil on them. The result was the binge could not heal by adhering to the surface, which also resulted in chronic pain, discoloration, swelling, etc, due to rejection. Bone infections also have similar symptoms. The product had to be recalled and the patients needed follow-up surgery to remove, clean, and put new rods in place.

I have RSD, and also belong to a support group with over 20 members. If you have RSD, you would have unending and crippling disabling FIRE for pain, and the pain is so severe it would be your ONLY concern. Days would pass without sleep until exhaustion causes several hours. You would be so obsessed by the unimaginable pain that nothing else matters. I feel for you, but you should get a second opinion. I know that getting a diagnosis is somewhat comforting, but your problem might be fixable. RSD is not, at list not in this country. It causes lifelong disability and the severe pain never end. I have broken my arm, suffered from shingles, cluster headaches, chronic migraines and the RSD is significantly worse - the pain is off the scale. It doesn't feel like you got burned - it feels like you ARE on unending fire. There are simultaneously other pains, like shredding nerves, barbs, and such, but the fire is the worst... It is all consuming and I have had periods when I couldn't understand what was being said to me because it seems like the all of the brain is so busy processing the pain that it couldn't process language, and the words sound foreign.

So, be glad with what you have because another doctor may be able to figure out out and fix it.

[cali]

7. No, there's nothing wrong with the IM rod.

Yes, I have terrible burning pain. I don't sleep for multiple nights in a row.

I hope I don't have RSD.

But please don't tell me about my pain.

You can't possibly know my condition. Neither can your wife.

[Vinca]

8. Cali, you poor thing. I'm so sorry.

I'm afraid I've never heard of the condition so I can't be much help. Have you thought of getting a second opinion? It seems odd the surgeon wouldn't be seeing you more often given the slow healing, pain, etc.