Soft long underware, try diff. types and thickness sox and i also have custom fit diabetic shoe insuls.

Ambika - I sent you a PM about your post.
thank you for it!

Hi, everyone!

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

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. 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 do a proper diagnosis.

He 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 fingers which was really weird. The pain I was having was more than I should have been having from this surgery, which I had just had 7 months earlier on my other 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 signs that are left of the CRPS is a shiney and waxey looking left hand with minor sensitivity around my wrist, except that now my right hand is exactly the same. I live in Florida, so don't often wear long sleeves, but we have had a series of cold fronts over the past couple of months, and I have been wearing a sweatshirt in the house as we try not to turn on the heat all winter. I notice that my right wrist particularly rubs against the sweatshirt and does bother me. I also notice that my face will suddenly get very hot (it feels like a high fever coming on) and my cheeks turn bright red. It actually happened to me again about an hour ago, and my face feels soooo hot!

I have to see my surgeon again in a few weeks, and as it's an hour ride one way to get to his office, I am going to ask him to transfer me to someone closer. Crazy to drive 2 hours to see him for 5 minutes while he looks at my shiney hands and gives me a new prescription for the Gabapentin.

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 the body? I have severe arthritis in my left knee which I've been 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 7 weeks, so I just have to get through that time the best I can using what coping skills I have learned. Since the nerves in my back are going to be burned to break the pain transmission from my back to my brain, I keep wondering if all the back pain I'm experiencing could be from the CRPS. I also have something called Interstitial Cystitis, which is a bladder disorder and again nerves are involved between my bladder and my brain.

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

Hi Janet and welcome.

Before you have any more procedures done, I would get yourself to a pain management specialist asap. This can be an anesthesiologist with a specialty in pain management. There are a number of good ones in Florida. This specialist should treat you if you have crps and should direct any procedures from here one to minimize the risk of spread.

Sorry to make this so short, I have to run out to a doctor's appt. Good luck.

Thank you for the welcome and sugestion re a Pain Management doctor.

I do have a Pain Management doctor who has been giving me shots in my back for 10 months for chronic pain. My hand surgeon wrote him a note asking him to evaluate my hand. He concurred with what my surgeon was doing, and did suggest a lidocaine ointment to help with the pain.
He also said I might consider blocking the nerves somewhere in the neck area. He no longer does that, but another doctor in the practice does. The nerve block could not be done when he mentioned it, as I was having the epidurals in my back at the time, so I would have had to wait awhile. My hand surgeon agreed on the lidocaine, but thought a lidocaine patch would work better than the ointment.

He had me apply it at night as I was waking up in pain during the night. He also prescribed 25 mg of Amitriptyline at bedtime, which works like a charm for me.

I think it's a good idea to see if my hand surgeon will release me to the care of my pain management doctor. Sure makes sense to me.

Janet

Try to find a pain mgt. Dr. who uses ultrasound with flouroscopy (x-ray) to do Nerve blocks. My 1st one using x-ray only failed horribly as he hit ateries twice (x-ray only does not show soft tissue). Is Amitriptyline similar to Nortriptyline?

Can anyone tell me how to know if I have RSD/CRPS??? I've had pain much of my life but after a minor surgery in April, 2012 my pain became EXTREME. I can barely walk. I've been seeing a PM doctor since November 2012. A lumber MRI showed herniated discs, an EMG showed bad nerve damage/neuropathy. Since then I have arthritis, diabetes, and a few months ago I couldn't breathe through my nose. I assumed this nose issue was due to damage from years ago when I got pregnacy rhinitis. But no! It's a perforated septum and I've never used drugs in my life! Since the surgery I am falling apart! The pain is so extreme and it's constant. Without the prescribed Norco, I can't even get off the sofa and sometimes I can't get off it even when I DO take the Norco. After surgery last year I could no longer can even walk 2 blocks to the swimming pool! The pain is awful!!! I've had injections and nerves cauterized in my back. Even if that is helping my back, I still have pain all over, with swelling, burning, etc. I can not live like this!!! What is wrong with me? Thank you.

Hi, AZ-Di,

Amitriptyline is the generic of Elavil; I believe Nortriptyline is very similar.

My pain management doctor does use fluroscopy. He's given me 3 epidurals and 2 injections in the past 10 months, which are not working. He did a diagnostic test on my back last week to see if I would be a good candidate for Radiofrequency Lesioning. Turns out I am. Now I just have to get through the next 6 weeks until that appointment comes up.

Since he did an evaluation on my CRPS at one of my appointments for an epidural, he would be the logical one I should transfer to. More in line with his specialty, unlike my orthopaedic surgeon.

Janet

Hello I have rsd and have had it since 2009. my arm and wrist and finger have no movement, I did sgb in 2010 and now the same doctor wants to do 4 more on me . if it did not help in 2010 why do it again??

Daughter had RSD left leg about 12 years ago.She was 14. Hit back of leg on diving board, small bruise, next day called to school and leg had "blown up" to twice normal or more.

She had epidurals, pt. tens, 3 day fentanyl infusion in hospital etc. until a doctor friend informed me his partner had started a new pain clinic.

New doc had her on a portable infusion unit infusing fentanyl into her spine 24 hours a day. One week on. One month off. She did this for two years and the "monster" always returned.

Sometime after those two years the last infusion was followed by complete remission and the "monster" has not returned.

Thank God she did not become addicted.

For what it is worth!!!!!