Hello all,
I joined this site hoping my husband will reach out to others with RSD. We live in a small city in Canada and feel very alone. Its amazing yet so unfortunate to read the posts of so many others affetced with this disease. While My husband Ron is not the fastest typer, I know he would be happy to share his experience and answer any questions. His RSD resulted from a work accident where an industrial pipe fell on his shin and rolled down to his toes. Ever since he has had the terrible burning and stabbing pains that are so common. His leg has been excessively swollen since the injury; 9 years ago. The swelling has stretched the skin so much that it is extremely thin and occasionally weeps a yellow/orange coloured fluid. A very minor nick on the big toe that recently occured has caused a blister, hense the bandage. Anyhow, I could go on and on but will spare you. We welcome any response.
Ron and Tammy

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Wow, those pictures sure tell the story.

I have CRPS in my toe/foot, but it is not anywhere near the level that your husband has.

How is he being treated? A case this serious needs multi-disciplinary attention to be sure...........

Thanks for sharing.

Yeah, as offensive as some may find the pictures, it is reality. He has been through all of the usual treament to no avail thus its basically pain managment only with home treatment for small nicks and medicine for infection, when necessary. He does see a doctor regularly but this is for Workers Comp and not for any treatment, unless a prescription for infection is required.

I wonder if anyone could suggest a site to order footwear for such a large foot?

Thanks for the response as I never get to talk to anyone about this other than my husband! Take care!!

I wouldn't have a clue as to where he could get footwear.

I purchase "over-sized" footwear (extra length and width), and can get by with that, but the swelling on your husbands foot and ankle is to such a degree that regular footwear almost assuredly won't work.

What does he currently wear? How well can he walk? Is your husband seeing an actual podiatrist, or can he see one? I realize the limitations of workers comp, etc. but I am wondering what a good podiatrist that is versed in CRPS would have to say about his condition. My podiatrist is the primary physician for my CRPS, and I would be lost without him.

Yes, this is a good forum for information and sometimes to just "vent" as people and families of people with CRPS, or any chronic pain condition, go through so very, very much. Welcome to the forum.............

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 developed Stasis Dermatatis a few years ago. The swelling in my feet, ankles and legs was unbelievable but nothing like your husbands.I developed Edema and I take Spironolactone and Furosemide daily in order to keep the swelling down. I am fortunate it really helps. I Also, Take Klor-Con as well.
The only shoe I found to help were velcro slip on sandals (no backs) with 2 or 3 straps to adjust with the velcro. If my memory serves me at this time, www.shoebuy.com has almost any size and type shoe out there. You might look into this site.

Hi Birchlake,
He currrently wears sandals with a homemade velcro strap attached to extend the length. We have also had a pair of isulated booties made however they got wrecked quickly as they did not have a rubber/hard surface sole. The lady who made these could probably enhance the design. It would be nice though to have a website and some options to choose from. He can walk fairly well inside our home however has a significant gait from years of bearing most weight on the good leg. Whenever he walks any distance or outside, he is dependent on crutches and just touches his foot to the ground which is why a soled boot is desired. Furthermore, it gets quite cold in the winter and the sandal is not adequate. No he does not have a podiatrist. We are going to look into this though as he certainly needs help.
All the best to you!

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!

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