Hello,
My daughter has full blown RSD head to toe. She just saw a dr at Drexel in Phila who wants to put her in a 5 day coma in a South American Country. Insurance will not cover. It took 3 years to get this appt, (was orginally for me, I was misdiagnosed with RSD for 10 years. My RSD was really Chairi.)

My daughter has been ill since middle school and is now in college. She needs relief. S/S: full body pan, rash, mottled skin, feet bluish, cold extremities, headache nonstop for at least 5 years. She has been to the "best". One dr at NY Presby said she will never be able to work FT nor would she be able to go to college. NEED ANSWERS.

My story started in 2004 with a simple left knee operation that refused to heal. I am one of the lucky ones who got a dx within 3 months, by going over my orthos head for a second opinion. Even so, I'd experience such rapid atrophy that my thigh muscles were producing near zero electro activity and it took 18 months of pt for me to learn to walk again. Since then, I've had 12 lsb, sometimes with remissions; developed allergies to neuronin and lidocaine; lost and regained use of my hamstring; and as the rsd moved upward, developed asthma, tummy problems, and allergies to everything.
My latest flare has encompassed my whole body and the neuros have decided it is fibromyalgia. Just started adding cymbalta to my drug cocktail. I still work, though do little else these days. My husband is a saint! I miss riding my horse and gardening, and hoping for better days ahead :-)

Hi my name is mike and i am 28 years old. I was currently diagnosed with Rsd of having it for the better part of 4 years. Everyone i talked to didn't believe me when i was telling them of how badly my pain was i mean in fact the funny part one orthopedic doc i had laughed at me and said to me i didn't know what i was talking about and that i was lying to his face! He said there is no way possible that i could have all these pains in random places at my age, that i was just milking the process because i was reluctant to work. Well that was 4 years ago like i said from the start so after that i was transferred to another orthopedic doc and he said that i had a little tear in my right shoulder of my labium i think that is how you spell it, well anyways i had surgery before on my right shoulder before and had 2 anchors placed in there to hold my rotator cuff in place. So at this point the doc thought that this was just a recurring injury so he tried to send me back to work while sending me to a RA Pains specialist. While seeing the specialist they sent me to physical therapy and aqua therapy and all the mean while my pain was intensifying and getting so much worse with my mobility. So they cut me off and said that i am just at my maximum treatment that they couldn't do anything further. So now i am still fighting the oh so reluctant Workman Comp trying to get my benefits back and stop them from fighting me to get these treatments down that i need. I am currently inline for keteamine infusion and blockage or the spinal infusion thing with the blockage with a pump implanted in my abdomen. I am in so much pain but i have gotten so used to the pain over the 4 years of having this but i just get so depressed because of everything that i used to do i am not able to, my rsd has gotten worse to the point to were i have a hard time taking a shower because of my pain. It has gone from just one hand and arm swelling and color changes to both arms, hands, and both legs now. There times that i just feel so helpless and all my friends just say i am just being mellow dramatic plz if u have anything opinions anything please tell me what i can do about this. Thank you for listening to me.

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

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

[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!

Hi all!
I'm 53, married with 2 sons, 1 grandaughter. I'm a professinal female in a customer service job.
I fell & broke my wrist 12-22-12 & had surgery on 12-28-12. I developed "complications" within 1-2 weeks and was diagnosed with CRPS finally 4 wks later with help of my P.T. alerting my surgeon.
I have all the "classic" symptoms. I was referred to pain mgt. Dr. but later found a better one. I have been given a whole coctail of drugs to take of course and am waiting for my 4th nerve block. However, the 1st one failed because they hit arteries twice (only x-ray guided) and caused too much bleeding. That's when I searched out another pain Dr. who uses both ultrasound and x-ray guided nerve block.
I'm horrible and slow at keyboarding now and that is a main portion of my job so I have not been able to return yet and I'm really afraid about that among other things.
I hope to offer support to fellow sufferers here and learn from others and share what I'm learning. CRPS is so frustrating!

Hi, everyone!

I am new to this forum, so hope I don't mess up trying to send my message...

I am 66, married with 3 children and 5 granddaughters. I now live in Ocala, FL, after growing up and living in the Washington, D. C. area for most of my life.

I am new to CRPS. Let me say right away that I feel very fortunate that I have a very, very mild case after reading some of your postings.

I had thumb joint replacement surgery 7/31/12 on my left hand. I started with hand therapy 2 days after surgery. After a month, both of the hand therapists I had seen suspected I had CRPS and started me doing the exercises that would help treat it. One of them called my surgeon and moved my appointment with him up a whole week so he could see my hand and confirm their suspicions of CRPS.

My surgeon started me on Gabapentin (Neurontin) and increased the dose very slowly to 300 mg 3xday, which I understand is pretty much a normal dose. I had a very shiney hand that would sweat with any exercise, even my individual fingers, which was really weird. The pain and swelling I was having were more than I should have been having from this surgery, which I had just had 7 months earlier on my right hand. My hand was usually very hot and a mottled red. I had sensitivity around the scar and on my forearm near my wrist. Those were pretty much all the symptoms I had. Oh, yes. I did have some weird hair growth on both forearms with dark hair growing wildly. It isn't that noticeable, so short of shaving my forearms and hoping the hair grows in normally, I don't know what to do about that. I also had 3-4 hairs on the outside part of my left eyebrow that grew straight up towards my hairline and were very coarse. I yanked those suckers out as soon as I noticed them!

Now, 7 1/2 months later, the only symptoms that are left of the CRPS are a shiney and waxey looking left hand with minor sensitivity around my wrist, and sometimes my hand will get very hot or very cold. Also, those same symptoms have now spread to my right hand. My surgeon told me the best treatment is to use my hands as much as possible, which I am doing.

I also notice that since my last surgery, my face will suddenly get very hot (it feels like a high fever coming on) and my cheeks turn bright red. Looks like I've been out in the hot Florida sun, but I haven't. This will last for a few hours and then goes away. Does anyone else experience anything like this?

I'm hoping my surgeon will transfer me to another doctor closer to my home at my next visit to him. My pain management doctor would probably be best.

I learned here that you never really ever get rid of CRPS once you have it. I'm wondering if any of you have had it spread to another part of your body? I have severe arthritis in my left knee which I've been successfully getting shots for, and a really bad back which I have had 3 epidurals and 2 shots in the facet joints over the last 10 months. I'm going to have Radiofrequency Lesioning in my back in 6 weeks, so I just have to get through that time the best I can using what coping skills I have learned. I do wonder, and I have asked my pain management doc, if the nerve pain I'm experiencing caused by my back could be from CRPS. He says no, but I know that not a whole lot is known about CRPS, so while I do trust my doctor, I just keep wondering.

I also have something called Interstitial Cystitis, which is a bladder disorder where the nerves between my bladder and my brain are not communicating correctly. I started taking Gabapentin just in time to keep me from having to have an Interstim device (like a pacemaker for your bladder) surgically implanted in my back.

Sorry this was so long! It's just so nice to have a place where I can kind of unload some of my worries and pick your brains about how to handle some of my problems/worries.

Thanks for listening.

Janet

Hello everyone!

I'm a 22-year-old third-year student at UC Merced, recently diagnosed with RSD. My pain started about four years ago in my right wrist from overuse syndrome. After enough time had passed for me to get decent at writing with my left hand, it spread to that wrist too. In both arms, I have overuse syndrome, tendinitis, de Quervain's syndrome, carpal tunnel, and cubital tunnel. I saw an orthopedist today and got a cortisone injection in my right wrist's tendon sheath, and was referred to an orthopedic therapist.

Nucynta and Lidoderm are my current pain medications, with Mobic to help with inflammation.

I'm here to learn anything I can in the realm of coping skills!