Orthopedic therapists may not be very knowledgeable about RSD. Do some research urself *admin edit*and don't be shy about taking information to your therapist. Any good therapist will appreciate adding to her knowledge. and remember NO ICE. cailinruaidh

Frustration
 

You sound so tired of all the fighting to get what you need and the frustration of doctors being ignorant about RSD. We all hear you and sympathize. Many of us have been through it. It seems that you are on the cusp now of finally getting the treatment you need and I hope that you do.
You can justly be proud of this achievement. Being a fighter will stand you in good stead with this disease. Hopefully it won't always be so difficult to get the treatment but you will always have to fight the RSD. If you feel you need an anti-depressant, I have found Cymbalta to be great, not just for the depression but for pain too. Just a thought. cailinruaidh

#513 re Therapists and RSD. The RSDSA has resources for therapists which are great. They also have a therapist called Melanie Swan who has done a lot of work putting RSD protocols for other therapists together and videos of her work are available.
The biggest no-no as I said is ice which is often usually used to reduce inflammation and swelling, or alternate immersion in hot and then cold water for the same reason. An uninformed therapist could unintentionally do a lot of damage, so it is important to work with them and share your knowledge. Kind regards, cailinruaidh

Podsantus I've had some further time to think about your dilemma, Mike. I've had the same problem with the shower. I stand back from the stream of water and use a baby sponge (pharmacy). If' I'm tired, I sit on a stool or shower-chair (medical supplies/internet), and use a plastic jug to rinse my hair. But whenever I can now, I take a bath with 2 good handfuls of Epsom salts to relieve inflammation (pharmacy or some grocery stores). Add some lavender from the health food store for relaxation/sleep or sandalwood to raise your spirits. Experiment with other oils. Keep warm after the bath and get to bed quickly for a good night's sleep.
Arn't you on some drugs while your doctor decides what to do next? There are Ketamine creams you can rub into your skin, various pain drugs in patches, anti-seizure meds etc. You don't mention any drugs.
Get a referral to a psychologist or counselor who specializes in pain to talk over the big changes ans in your life.This is especially important if you're not getting support from friends and family. The RSDSA keeps a list of Support Groups in different areas. If there isn't one, find out if the American Pain Association or Fibromyalgia or Trigeminal Neuralgia have support groups who meet. Your local hospital may have a list of groups.
Show your friends some information from the RSDSA to see if that opens their minds a bit. Take them to a support group meeting ot even to a doctor's appointment.
Unfortunately I tried all all of the above with my family and best friend and nothing worked. But at least I tried. I don't see much of them now. You will make friends with new people who understand your situation. In the meantime, use the internet to share your life. There are many good pain groups who will be delighted to hear from you, and people like yourself on Twitter and Facebook.
RSD is a life-changing event but strangely I'm happier now than I was 5-10 years ago in spite of leaving a husband, friends and family behind. cailinruaidh

Podsantus
 

[QUOTE=cailinruaidh;969235]Podsantus I've had some further time to think about your dilemma, Mike. I've had the same problem with the shower. I stand back from the stream of water and use a baby sponge (pharmacy). If' I'm tired, I sit on a stool or shower-chair (medical supplies/internet), and use a plastic jug to rinse my hair. But whenever I can now, I take a bath with 2 good handfuls of Epsom salts to relieve inflammation (pharmacy or some grocery stores). Add some lavender from the health food store for relaxation/sleep or sandalwood to raise your spirits. Experiment with other oils. Keep warm after the bath and get to bed quickly for a good night's sleep.
Arn't you on some drugs while your doctor decides what to do next? There are Ketamine creams you can rub into your skin, various pain drugs in patches, anti-seizure meds etc. You don't mention any drugs.
Get a referral to a psychologist or counselor who specializes in pain to talk over the big changes ans in your life.This is especially important if you're not getting support from friends and family. The RSDSA keeps a list of Support Groups in different areas. If there isn't one, find out if the American Pain Association or Fibromyalgia or Trigeminal Neuralgia have support groups who meet. Your local hospital may have a list of groups.
Show your friends some information from the RSDSA to see if that opens their minds a bit. Take them to a support group meeting ot even to a doctor's appointment.
Unfortunately I tried all all of the above with my family and best friend and nothing worked. But at least I tried. I don't see much of them now. You will make friends with new people who understand your situation. In the meantime, use the internet to share your life. There are many good pain groups who will be delighted to hear from you, and people like yourself on Twitter and Facebook. Write to us again.
RSD is a life-changing event but strangely I'm happier now than I was 5-10 years ago in spite of leaving a husband, friends and family behind. cailinruaidh

Hi,
My name is Pepper and I have CRPS in my left ankle and foot, and I have a suspicion it is moving to my right ankle and foot. I say I have a suspicion, since neither my podiatrist nor pain management doc agree with me, although my right is feeling a bit stiff from day to day. I knew absolutely nothing about CRPS a year and a half ago, when I developed it after I broke my left ankle and foot for a second time falling down some hotel stairs. The first time was just before a job interview when I fell down some cement stairs, which also caused me to sprain my right ankle. I have also torn ligaments in the left ankle back in high school, which was many years ago.
When an orthopedist saw me the second time I broke my ankle and foot, he declared me "cured" after wearing two different boot casts for 4 months. My ankle and foot were still swollen, but he said he saw nothing interesting or anything to worry about and told me to go back to the shorter boot (up to my knee), and try wearing that for another couple of months. Okay, I took nursing classes at university, and I knew there was something else going on, so I sought out another orthopedic doc. He put me in an unna boot for a week, and took x-rays he said showed nothing. After a week my swelling was still there, and my foot had red splotches on it. He said I had CRPS, and he didn't know what to do about it! What?
So I went to a podiatrist I found who put CRPS on his treatment list on his website. He took x-rays right away, and found there was a "body" (piece of broken bone) in my ankle. Neither of the other docs caught it, but it was obvious in his x-rays. He said normally he would remove it, but he also said I had CRPS and didn't want to make things worse, so he referred me to another doc in his office who only dealt with CRPS. She then gave me a nerve conduction test, which was negative, a bone scan that was negative, and an MRI that was negative. I met with both docs after all the tests, and even though they found nothing, they agreed it was CRPS, since my foot and ankle were still swollen, very painful (even to the touch), and had red splotches on it. They said, and I have learned, even though those tests came back negative, CRPS could be and was still present.
I was then sent to an anesthesiologist who has been giving me sympathetic lumbar blocks for over 14 months, and prescribed a cream, with ketamine, lidocaine, clonidine, gabapentin, and some other meds, which I was using about 6-8 times during the day. There was some relief, but we kept up the nerve blocks, since I would get some relief for about 4 weeks at a time. The last time I had a lumbar block, about three weeks ago, I didn't get hardly any relief at all, and I had an appointment with the podiatrist, so I mentioned it to her. She then gave me a most painful shot of cortisone in my ankle, slapped an unna boot on it, and told me to see her in 4 weeks, even though she didn't think she could do more than that for me. The shot caused a great deal more pain than I already had, so needless to say, I won't be going back to her.
I called my pain management doc and left a message for his nurse regarding the last lumbar shot and the cortisone shot, and included I was in some severe pain. I didn't get a call back for several days, so I called again, and when she called back, the same day this time, she said she had given the message to my doc and they would get back with me when he responded. When I finally got a call back, a few days later (this took a week and a half!), I was told he wanted me to come by his office for a consultation on what to do next, what my options would be. The kicker is the appointment was a month later! I have no oral pain meds (he doesn't believe they work), and I have been in pain, though the degrees of pain vary dependent upon my activities, or just when I'm not sitting with my ankle and foot propped up. Once I even got out of bed, just after a four hour sleep (I don't sleep a lot, which oddly doesn't bother me), and I couldn't walk on it.
I do have my cream, which I have been putting on about 6-8 times a day, but my pain just continues, although at different levels.
I have heard about ketamine infusions, outpatient and inpatient, and I don't believe my pain doc performs them, but I'm not sure till I see him about three (OMG) weeks from now. I did get in the internet to see if a doc in Nashville performed these infusions, since we have Vanderbilt Hospital, which is always on the cutting edge and performs lots of procedures most hospitals around the country don't.
After searching the Vanderbilt website, I found nothing about ketamine infusions. I have searched ketamine infusions in the state of Tennessee, but find nothing. I have read about others in Florida, Oregon, and California, and I think one in Pennsylvania, but have yet to find one here.
I am pretty desperate right now. I also have fibromyalgia, which has been flaring up (no surprise there), and so I have quite a bit of pain every day.
Does anyone here know of a hospital or doctor in Tennessee who performs the ketamine infusions? I have read they have a high success rate, and I have responded well, up until recently, to the lumbar shots, even if it was for only 4 weeks.
I have been reading the posts here for a while (sorry I didn't sign up till now), and on other sites these infusions really have helped quite a few people.
Any advice or information would be awesome!
Seems there are some really great people here, so that is why I've joined this board.

BTW, so sorry that was a long story! I also haven't been able to find a support group in the Nashville area, so I guess I had to spill it all out here. Also, my husband is tired of hearing about all this, and I don't have any real friends here; Long story cut short, I have lots of interests, but one isn't church or religion (which is huge meeting place in my area), although I wish it was, might help, and the other interests, my love of different types of music, movies, my love of writing, and so forth, don't appeal to women in my age group, or anyone I've met here period. I feel a bit lost.
Thanks for reading! :)

Oh sorry! I forgot to mention I don't tolerate Lyrica, savella or Cymbalta.
I got no relief from oral gabapentin or clonidine. I haven't tried opiates for over a year, since I took them for fibro, but I gave them up since the dosage got higher and higher, and I was afraid I was beginning to get too dependent on them. I have also read a lot about how they don't really help.
So I have gone through some meds to be sure!

Hi Pepper
 

I have several Ideas for you to find out about Ketamine infusions. If you have a teaching hospital, contact the patients advocacy person. Also on the internet, there may be a contact for American Medical Association. There also may be help through your local library to find resources. I can't believe your state would not have this type of medicine available to you.
I had two ketamine infusions in my neck which did help. Different problem, but I did get some relief before my spinal fusions. I wish you all the best. ginnie

Thank you ginnie! I should have thought to contact the patient's advocacy person! Glad you brought that up! :)
I will also look up the AMA. I didn't think of that either. I was busy just Googling where to get a ketamine infusion in TN, and other thoughts along the same lines.
Thank you for responding! I have heard good things about the infusions.

Hi peppercross
 

Let me know if you find something out about Ketamine. Somebody on Neuro Talk always has some ideas. It is important not to run out of hope. Keep plugging away to get the treatment you need. Ketamine has been used alot in our military, for wounded vets. There have been some good results for RSD and CRPS. The American Journal of Medicine also has published some results. I am in your corner. ginnie:hug: