Hi and help please
 

hi I am currently in Australia with my husband for his work. Our home in in America. Last August we went skiing and I injured my ankle, had surgery to place tightrope fixation. I was in a soft cast then a boot with no weight bearing for a little over two months. I then started physio both hydro and regular exercise 3 hours a day 3 times a week. My ankle and oddly enough my foot never looked or felt right it was constantly swollen would look red or even purplish at times was alway hot to the touch and felt to me like I had heaps of coals on it and around it. I have spasms that cause my foot and ankle to jerk up then there is pain at times that is so deep and intense I think it's in my bones. I. Can not wear a proper shoe or a sock it just hurts to much. I was told for six month that this was unusual but that we should see if it didn't calm down on its own. In Jan of this year I developed cellulitis on my foot, I think it was because of the constant sever swelling, the doctors thought it was a reaction to the hardware and that maybe all the issues where from the hardware so back to surgery to remove the tightrope. I have continued to have all the same symptoms constant burning discolored skin jerky feeling hypersensitive to touch so they decided to put me in the hospital and run a bunch of test the Mor showed inflammation and I have a bone scan on Tuesday. The doctors are saying they think it maybe CRPS but they need to rule everything else out first. .

I'm just over whelmed and tired of constant pain. I can not stand or walk with out the swelling getting worse, but who can stay down with there leg elevated all day every day. We do not have a support system over here or family, we won't be going home until the end of May at the earliest. I have looked online read about CRPS it sounds like what I have been living with, the pictures of some of the feet and ankles look like mine. What will allow them to make a final diagnosis instead of we think or we are leaning towards CRPS. What do you all think? And do you have any advice?? Thanks in advance for any thoughts ....

According to the Budapest Criteria you need 3 of the 4 main symptoms here. I suggest printing it out and taking it to your next appointment
http://www.painmanagement.org.uk/com...iagnosing-crps
Full symptoms here
http://www.rsdhope.org/crps-symptoms.html

Hi Aussie,
If I may suggest, seek out a neurologist with a good knowledge of CRPS so valuable time would not be wasted on ruling out things and get right to the problem.
IMHO to much time goes by ruling out stuff and when the dx of CRPS is reached unfixable damage has set in.
I'm just saying!

Welcome Aussie Land,

So sorry you had to come find us but it is a soft place to land. I agree you need complete work up and the possibility of nerve entrapment or damage should always be explored after surgery. This can be checked with a nerve conduction study or "scratch collapse" test. But Russ is right, DON'T lose valuable time, there's no reason not to start treating for CRPS. You need pain control and light exercise, moving the limb is imperative. This might mean getting in a pool every day to keep the blood moving and start working that leg without strain. The water feels great when you can't walk. Use a buoyancy belt if you have to.

How far out are you post-op? Feet take longer than any other body part and have more problems because of their position. I feel like the swelling and inflammation become cumulative. I say this after 3 foot-ankle procedures in a year. My surgeon, who is on a lower extremity reconstruction team at a tertiary referral center, says starting to put the limb down is imperative to retrain the autonomics, which can go haywire in the LE even without CRPS. This can mean beginning at 5 minutes per hour and progressing very slowly. It can take a number of weeks to months to come back even in normal circumstances. It is okay to go slow. You don't want pain flare up.

If your wound is healed they may consider a short round of steroids in addition to whatever they are giving you for pain. These can be helpful in the beginning and knock down the inflammation enough to let you participate better in rehab. Also a German researcher Franz Blaes has shown an autoimmune component to CRPS and steroids can address that.

Try not to panic. All the hyperbole on the Internet can convince you this is a sentence for life but in reality most people do get better over time. Many of the big researchers support this. My own doctors all subscribe to this concept after their own experiences with CRPS patients. Ignore the doomsday websites and arm yourself with knowledge. Watch the video by Dr. Pradeep Chopra on RSDS.org, it is informative with lots of tips on diet, meds, therapy, etc. He does not recommend jumping in with a spinal cord stimulator or anything like that. He gives a rational platform from which to start. Most importantly don't give up, get your stubborn on and fight this thing five minutes at a time. Slow incremental progress is the way. I am now walking a mile after nine months on crutches. Used every assistive device you can think of to get there and took my time. You WILL make improvements. Come here when you need support and hang in there!

Sending Healing Love,:hug:
Littlepaw

Hi Aussie,

Sorry your going through this, you couldn't have come to a better place for support and information!!

:hug:
Dawn

Welcome aussie land. :Wave-Hello:

Thank you all for the warm welcome and information. I am currently still in the hospital my surgon doesn't want to discharge me until we know what is going on. In his words, which I totally agree with this has gone on long enough. I am 8 months post op from the first surgery and six weeks from the one to remove the tightwire. I will ask my doctor today about getting a neurologist to consult. He said that the bone scan on Tuesday will rule out the last of the non nerve diagnosis and may point more to CRPS. IM GREATFUL I have a surgeon who is being very proactive with this and I know the hospital I'm in has a pool and the hydrotherapy was my favorite part of physio....it is good to feel more normal and taking a few steps without pain in the deep end was always a huge blessing! Thank you all for the information and suggestions it makes me feel better just having a bit of knowledge and a safe place to ask questions! I have spent time reading old posts and can see that this a safe helpful healing place!

I have another question that im sure is going to sound silly but hey I'd rather ask and know the answer than assume. What is the difference between CRPS and RSD?

Thanks again for the help and welcome :grouphug:

Same thing. The name was changed in recognition of the fact that the sympathetic system is not always involved. A lot of doctors still call it RSD.

Hi Ozzie Land:)

RSD/CRPS sucks by any name, period.

Littlepaw's right on as far as internet hyperbole goes (and with just about everything she posts. You could do a Littlepaw post search and just follow her advice and you will see marked improvement. No pressure Littlepaw:))

Also, since you're not that far into this (relatively), here's a list of all the stuff I did to fully recover: http://neurotalk.psychcentral.com/thread205597.html

The physical stuff I'd wholeheartedly endorse is mirror therapy, water therapy, massage/densitization, DMSO and NAC, and an alkaline focused diet.

Mentally speaking, put everything you have into knowing that you're already healing, RIGHT NOW. Past is past, future is veiled; now might suck royally but it's all we have. :hug: