CanadianPain, I've seen plenty of photos of those with RSD over the years, my wife has RSD through-out but I've never seen anything like this. May I ask what treatments has he had? He really seems to be full of fluid of the likes I've never seen before. It looks like extreme infection.

Dear CanadianPain...

I'm so sorry we have to meet under these circumstances....RSD is just an ugly animal which we can not tame...not even with the biggest stick. I too, have RSD originating in my rt knee following knee surgery... Now I have it full body, internally also... At the very beginning of my RSD, My leg looked similar to your husbands...following a second surgery to try and restore as much mobility as possible...during the surgery they had inserted an external pain pump.... During the removal of the
external pain pump... My leg just spewed...I'm sorry to say it like this but I was at pT and as the Dr. Exited my room after taking out the catheter and remove the pump, I lost an abundance amount of fluid...it was under so much pressure.... course I began to shout for help...scared me and a mess but it did relieve much pressure and today 5 years later my leg is swollen and shiny...terrible burn and pain...I can't walk without a cane but the size of my leg has decrease tremendously since
the "explosion" fluid... Plz...ask his Dr. To drain his leg...and be doubly sure he does not have a severe infection....

I'm so sorry and remember you have us to talk with....

keep us posted....

take care....Kathy

I love the handle Kathy!
Your experience with RSD sounds terrible, but unfortunately its the nature of the beast.

My husband did have his leg drained but it was not successful; the same outcome as every other procedure. Only his big toe is infected currently from a small scrape. His foot/leg always look like this. We have both come to accept that his case will not get better and that amputation is inevitable..its just a matter of time. It is a matter of fact and not us being negative.

Every couple of months, my husband gets very ill. He says it feels like he is dying. The lymphnodes in his groin swell to the size of golf balls which is accompanied with a fever, chills and nasea. It takes a couple of days before the the symtoms disappear. I wonder if anyone else experiences this?

Thanks for reaching out! Take care. Tammy

I sent you an email regarding a special shoe that may just work for your husband. Let me know if I can be of any assistance.
Again, Love & Prayers

Hi Jim.
Sorry to hear of your wife and your battle. I know it can be very difficult, especially to accept, in the beginning anyhow. Has she had RSD for a long time? I imagine your wife had RSD in one area which spead? The ability for RSD to spread is one of my greatest concerns.

My husband has had sympathetic nerve blocks (MANY), spinal therapy, acupuncture and the doctors also tried removing the fluid from his leg but it refilled as quickly as it drained. He seems to have trouble recalling all the different treatments but I know there were lots. Unfortunately I could not attend any treatments as they occured in a city 5 hours away from where we live. Workers Comp had him in the city for weeks on many seperate occasions, going through tests and procedures. Every treatment done to him caused more pain without any benefit. Eventually, treatment stopped and now he only sees the specialists in the city once every couple of years and his GP every two months. While his leg/foot is extremely swollen, he has not had any blood clots (knock on wood) and the infections have been infrequent fortunately. The current infection is impacting the big toe only which looks a little more unsightly than before but the rest of his foot/leg have looked like this since surgery, right after the initial accident. Take care!

CanadianPain, my wife's battle with RSD started almost 10 years ago. She broke her wrist. Within a few years it spread to her other arm and both feet and calves, a little in the neck too. Her feet and calves did swell and turn red and purple but not nearly the degree of your husband's. Her doctor prescribe a strong steroid that she took for 2 weeks in which it worked very well. Recently she had another bout of swelling after a year or so and repeated the steroid with success. She also received ketamine treatments with no success because I believe she had the disease too long with no treatment at all (at least 4 years) with little to no benefit. I wish there was something I could recommend to help with your husband's swelling other than asking him if he had ever taken a steroid for the swelling before. Thanks for the response and I pray for good luck to visit your home soon especially your husband!

Ketamine has been demonstrated to work even if you've had RSD for 10 years or more. It's success rate is higher in patients when started earlier, but it still has a good chance of working even when used in long term CRPS patients. I would encourage you to try it if you have the opportunity.

Good luck, Sandy

I have read recently where people with long term RSD have had success with 10 day ketamine treatments. Suzy (who has the RSD) had a 4 day treatment and the dose may have been too low perhaps. If it were me I'd do it, but the wife? Different story.
Thanks Sandy

Hi CanadianPain, so sorry for what you're going thru. I've been very close to that myself so can really empathize. Fortunately, treatment brought my swelling down. I had the spinal nerve blocks,4, a massage therapy called 'milking' that really helped, and one of the big problems was Lyrica also whicch was causing swelling. I switched to Topomax instead with allmost instant results. I was lucky enouth to find the one in a million drs and pts that actually knew about rsd and the special pt really helped also. Now I'm in VA with a new spread to my hip, almost out of meds and in desperate need of a new pm dr and can't find one. At any rate, I hope some of that is stuff you can try.

Hello Canadian Pain....

I want to check back in with you to see how you are doing....! I have to say RSD plays havoic with our bodies...so badly right down to body temperature regulation is awful...My upper leg, lymph node area is very sensitive and ugly is the word for the pain....I'm sorry your have to meet us under these circumstances...this disease is an ugly 4headed animal...I know amputation in your husbands situation is probable but please, make that your very last resort...very last...as phantom pain is real...so real!!

You have us!!!

Take care,

Kathy

P.S..you like that keep smilin handle?? It is true to my heart...it has to be that way...bring the love from with in...