Feather....I haven't posted in over a year but when I saw your post I had to respond. Our stories are so similar. I fell on ice about 3 years ago and broke my ankle, suffered a third degree sprain and tore a tendon. The bone healed, the sprain resolved but the torn tendon remains. Like you, I've been told by 3 ortho docs that they could not touch the torn tendon unless the RSD resolved. I've done extensive research on the subject and it seems that what the orthos are telling me is accurate. They also told me I had only 2 years to have the tendon fixed otherwise they couldn't do it. It's been 3 years now so I've lost my window of opportunity but I hope you have better success. Have you had any nerve blocks yet? I had 2 in the beginning of this and while they didn't make the rsd resolve, I do believe they slowed down its spread. Like many here I've tried different meds but none have dulled the pain enough to be able to walk. What has helped me the most with the pain is a leg brace also known as an AFO. I use this along with a cane...without it I can not walk because of the pain. I would look into the nerve blocks. Most pain clinics do them. In the meantime if you are having trouble walking your ortho doc could give you a walking boot or send you to be measured for an AFO (ankle foot orthodic) Where do you live?
I hope this helps a little...at least it's a place to start. Please let me know how you make out.....Jeannie

Hi Jeannie. As for the nerve blocks I have had three Sympethiact Nerve Blocks in the time from the end of May to the begining of July this year. They helped with improve the tempetaure and dull or slow the pain for a while. I found that they helped because for a while there the air was burning my skin. I use crutches to walk mainly, sometimes I will try and walk with out it since I have been told that if you don't use it could lose the abilty to.
I am really not able to walk or sit for more than about an hour because of the swelling increases the pain. The problem is when I do try to walk my ankle has something pop in it and then it swells for days and bruises.

I am so glad you replied it helps to have someone who understands.

Feather

[QUOTE=Feather;362628]Hi Jeannie. As for the nerve blocks I have had three Sympethiact Nerve Blocks in the time from the end of May to the begining of July this year. They helped with improve the tempetaure and dull or slow the pain for a while. I found that they helped because for a while there the air was burning my skin. I use crutches to walk mainly, sometimes I will try and walk with out it since I have been told that if you don't use it could lose the abilty to.
I am really not able to walk or sit for more than about an hour because of the swelling increases the pain. The problem is when I do try to walk my ankle has something pop in it and then it swells for days and bruises.

I am so glad you replied it helps to have someone who understands.


Hi Feather and Welcome, It's unfortunate you found 'us' other RSD friends, because that means you have been diagnosed too. You'll find a vast amount of knowledge, experience, and compassion here. If you could spend some time reading other posts, like the introductions, and pictures, you'll find out how to compare your experience with others, and maybe what has helped others and what has further increased pain and spread of RSD. It's the usual consenus, that if you aren't diagnosed within 6-12 months and have the blocks, there is less of a percentage to have a remission. Children have a better chance of remission than adults. The purpose of the blocks are to interrupt the pain signals to the brain and reset or stop the pain signals. If it doesn't happen with that period of time it usually doesn't stop. Were your blocks lumbar blocks? I've always understood if the RSD injury site is below the waist you have lumbar blocks, if it's an injury in the upper extremity, you have the stellate ganglion blocks (neck) Mine began in about 96 following breast surgery. The next day my arm swelled up and was painful. After removing the excess fluid 2 or 3 times, they sent me to rehab Dr to oversee my physical therapy for frozen shoulder. After about 100 therapies I got the use of my arm back, about 95% It wasn't labeled RSD, but really was. About half way thru therapy, they wanted me to see a ortho surgeion who wanted to break the shoulder area. I said no, I'll just stay with phsio, which was really torture, being strapped down to a table and manipulated. I went to massage therapy before had to get warmed up, (which I paid for) and that helped a lot. The therapist said it was very possible for it to go to the other shoulder- that's called mirror spread. We moved to Arizona and that's exactly what happened. Went into therapy again, and was much shorter length of therapy. Had about a year relief, and then felt a nerve pull in my left hand while water skiing. Hand swelled up bad and stiffened up like a board with no So flew to a sports injury ortho group in Eugene, Or where we were from, where the Olympic Trials were held for track and field.The hand Doc. diagnosed RSD in less than a minute. Comfirmed at the hospital with Nuclear Med tests.You get bone loss in the RSD site. When back to Arizona and saw a Neurologist and Orthopedic Dr. More confirmation and got partial use of my fingers back thru physical therapy. I can partially bend my fingers kinda like a claw, but at least I can cut my own food, and peel a potato. By putting my hand thru different textures, the fingers got desensitized. I would think the same thing would apply to your toes. Everyone says surgury is the worst thing you could do, making it worse. Like a lot of people here on this forum have had happen to them, my RSD spread full body. My toes started to curl up and my Dr. had me do exercises in the pool and after a few months they touched the ground again. Stretching is good exercise. My Dr. is a Neurologist, Degree in Pharmacology to manage the pain and spasms, jolts, stabbing pains, and I've had one bad seizure. He is a Psychiatrist, who has really helped me a lot with the depression and adjustment to loss of your health life to what is now. There was a study on Ketamine for RSD here in Scottsdale Mayo Clinic. A friend of mine worked with these 5 Drs. Two of them are now at the Hershey Hospital in Pittsburg, One went back to Germany. Ketamine is an anesthetic that induces a close to going under that helps some people break the pain signals to the brain. It's not a cure, Gives some people relief for different time lengths. I'm so sorry you have this, you'll find a lot of support and caring friends here. Hope this helps a little. Loretta

[QUOTE=Feather;362628]Hi Jeannie. As for the nerve blocks I have had three Sympethiact Nerve Blocks in the time from the end of May to the begining of July this year. They helped with improve the tempetaure and dull or slow the pain for a while. I found that they helped because for a while there the air was burning my skin. I use crutches to walk mainly, sometimes I will try and walk with out it since I have been told that if you don't use it could lose the abilty to.
I am really not able to walk or sit for more than about an hour because of the swelling increases the pain. The problem is when I do try to walk my ankle has something pop in it and then it swells for days and bruises.

I am so glad you replied it helps to have someone who understands.

Feather[/



Hi Feather, In your post you don't mention physical therapy. Have you tried that yet. It's usually the first thing they try around here. A good therapist will work along with your ortho doctor and if they feel some type of orthodic will help you they will get it for you. Also, have you tried a TENS unit. Some of the nice folks on here have had relief from using them. You are right that it is important to try to use the RSD limb. I give it a try every AM and every Pm for a half hour at a time. It doesn't make it any better but I like to think that it keeps it from getting worse. The rest of the time I use my brace and my cane to cover short distances and my scooter or wheelchair for longer distances . Don't overdo it though. I find that when I push too hard the pain increases and becomes hard to take. Hope this helps a little..Jeannie

[QUOTE=used to be;362998]Hi Jeannie,

I keep asking about physical therapy and have been of no success in recieving any; keep getting told that there is not a lot to be done. Finally in August I decided I need to at least do some minor strechting and non-standing excersise. I figured I need to do something to slow down the muscle mass that I have started to loose in my calf and thigh. I am not sure what a TENS Unit is could you please enlighten me? I am going to the pain clinic sometime this week and my Ortho in 2 weeks. This way I can ask them about these things. I know that my Ortho has not worked with RSD before, I was sent to him to see if he would do surgery thankfully he said no not possible. After the short term working of the Sympethicat Nerve Blocks ( Lumbar) I was trying to see if I could do Ketamine, instead was refered to a psychologist for Bio-feedback whom told me that she did not think I was in bad enough pain for that. The other day I spoke with someone who said she did warm water therapy an that it helped alot.

Have a wonderful day.
Feather

[QUOTE=Feather;363499]




Hi Feather,......A tens machine is used to deliver a small electrical current to the injured site through electrodes that are placed on the area. They are used most commonly by physical therapists and chiropractors but you can get a smaller version for home use. I tried the warm water therapy in a heated pool as well. It does allow you to exercise the limb with far less pain but as soon as I got out of the water the pain crept back in and by the time I made it to the changing room I was right back where I started from. But I didn't try it until a year after the injury so you may have better results. Hope this helps...........Jeannie