aascvt:
Regarding heat, me too. So much so that I wear sandals in the winter here in Omaha. No socks! Not only do socks warm things up, they also rub me the wrong way. I'd love to just go bear-foot and leave it at that. Heat just kicks off the redness, inflammation, and burning pain. I use ice too when I am desperate, though I have read warnings against it here on this forum. Doc has me trying Ketamine-Gabapentin-Lidocaine-blah-blah-etc specially compounded lotion by Sheffield Pharmacy in Alabama. It does help, though not completely. After using it coupled with my pain meds, I find I do drift off to sleep much easier. So it must help to ease the pain enough I can get to sleep. When I wake, I generally feel better.

I have an 15.9 year old dachshund named Frank Furter. He is 11 pounds. He tries to help me out as much as possible, but other than providing me comfort he is not much of an assist dog. He is just too small.

I am new to this forum too. I tend to read mostly. I see my Doctor in early February. I plan to bring a list of questions generated after reading other forum members' posts. I would have liked to have landed here sooner.

Hope you also find helpful info that you can put to use too.

BTW: I am Type II Stage 3. My Doctor doesn't mislead me about a cure. My medical care is about pain management now. Those things I used to love to do, well, they are really great memories. I use a wheelchair if I leave the house. On really bad days, I use it in the house, if I can get out of bed.

Hello Alt..

Thank you for the welcome and the kind words. I have just begun to understand (yes, through this forum) the dangers of ice therapy with CRPS. I feel sick realizing what I've been doing to myself. All along I've felt that it was odd how much of the ice I felt I needed.. and how "responsive" the swelling and pain was to it. I checked again and again with each surgeon and physical therapist that I've had. "Keep icing if it helps and as long as you avoid thermal burn". Now that I have a pain specialist.. I would have hoped that she would have warned me from my dangerous habit. I made her aware of my need for ice as well, weeks ago when I started to see her. I will be contacting her about this.. as I'm quite upset.
I've just read this article.. and the last paragraph or so in particular makes complete sense, in a very real and painful way to me. I am very concerned about damage that I may have already done.

(Ice and Crps article on the RSD hope site.. I'm not allowed to post a link yet and had to remove it. : (

Again, however disturbing.. every bit of information is powerful. I want to fight this with everything I have.

A

Hi Djhasty..

I insist on being sock-less around the house until extreme cold.. then just thin socks. I can only wear very thin pants at night.. my scrub pants, due to the burning.. and I have to pull the blankets completely away from my legs. My doctor just prescribed a Ketamine topical cream.. it was in combination with a few other things.. my insurance wouldn't cover what she wanted, sadly. So they suggested something "similar" and are asking the doctor if she'll OK that. Waiting.. waiting waiting.
I love hearing that many of us have a dog at home to cheer us up. They're so amazing. I love your dachshund's name! : ) My dane is not an assist dog at this point.. but I know that she would certainly try. I can lean on her shoulders on the icy driveway and she doesn't mind.. so I do appreciate that.

A

Djhasty

The whole concept do CRPS developing in stages (called "staging") is out of date. It worries me somewhat that your doctor has told you that you are in"stage 3". All of the modern texts and thinking on CRPS is that the myriad of different symptoms will develop in different people at different times and they don't follow a pattern which correlates in any way to the historically defined different stages. I raise this not to be smart but because it raises a question mark about how up-to-date and current your doctors knowledge actually is.

I can't recommend strongly enough that you do a bit of reading up from reputable sources like the RSDSA.org website and you will understand where I am coming from. Over the past few years there has been quite a bit more research and effort that has gone into CRPS and larger studies have taken place looking at the way in which the condition can progress over the short, medium and long term. This has increased understanding of the condition and is one reason why staging has been discredited. It's really important that your doctor is fully up to date with the latest thinking so that you can get the best care.

You also need to expect that you are going to have to be your own advocate. You will sooner or later discover that doctors' hearts sink when they have CRPS patients because they don't have a nice quick cure to offer that gets rid of us!! It's important to get rapidly familiar with the condition and the various treatment options. Places like this are great but its important to get the basics and refresh your knowledge periodically from reputable, medical sources. If you don't feel up to reading the research papers or medical journals then i think the next best place to look is RSDSA.org - they have recently expanded their resources library and it has a wealth of reliable information.

A properly informed patient is much harder to fob off or ignore and you are less likely to miss out on potentially helpful drugs or other treatments because you can be suggesting them to your doctor rather than waiting and hoping he will mention them - the worst thing you can do is assume your doctor actually knows best! You will also need to be able to tell when a doctor or other health professional doesn't actually know much about CRPS - many profess to be knowledgable but aren't. The more knowledge you have, the easier it is to spot and then get rid of these people because they will be no help to you and may actively make things worse.

[QUOTE=Neurochic;952342]Djhasty
The whole concept do CRPS developing in stages (called "staging") is out of date. It worries me somewhat that your doctor has told you that you are in"stage 3". All of the modern texts and thinking on CRPS is that the myriad of different symptoms will develop in different people at different times and they don't follow a pattern which correlates in any way to the historically defined different stages. I raise this not to be smart but because it raises a question mark about how up-to-date and current your doctors knowledge actually is. /QUOTE]

I agree with much of what you said here.

I realize that government run institutions can be behind. Unfortunately, this NIH site describes me quite well. ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility, and involuntary contractions of the muscles and tendons that flex the joints. Limbs may become contorted.

I believe the stages noted on this NIH site and used by my Neurologist indicate severity of symptoms, rather than measurements of time. Short, medium, and long-term periods of affliction are not a consideration. Most likely acute, dystrophic, and atrophic are at issue, with the final stage also in the atrophic stage but involving the internal organs. A quick search on the web brings back lists of sites noting the stages of RSD/CRPS. The accuracy of the information can remain a debate here. As you note, it is up to each of us to do our homework, and not everything we read on the net is up-to-date and accurate. Also, in my case, when being considered for disability, stage (severity) of the disorder was taken into consideration by the reviewing committee. That was 2 plus years ago.

The RSDSA.org site does contain a lot of really good information. I agree. I have used it extensively, especially at the time of diagnosis. Anyone can use this resource to find valuable information.

Here in mid-size Omaha, I feel my best bet is with the University of Nebraska Medical Center and my Doctor who is a Board Certified Neurologist. She diagnosed me before I had heard of it. I believe her view to be up-to-date. As far as being on the cusp with experimentation regarding CRPS, maybe not. I do believe she is providing me the best care that Omaha has to offer.

I admit I am not always my best advocate. Much of it was my own denial. I left the Doctor's office stunned and confused. When I look back, I believe I have had CRPS for much longer than anyone has expected. I had/have many of the symptoms. Medical tests showed it. 2 plus 2 didn't happen for me until it was almost too late. Without proper medical care, what started in my left foot, took over my left side including my eye, both feet, legs, hips, and bladder.

Neurochic, your input is always valuable. I enjoy reading your responses. Thank you for taking the time.

Thank you for your post. I just want to add one thing.
What you said about being an informed person, goes for all conditions. As patients we owe it to ourselves to talk to our physicians armed with all the knowledge we can muster. You are right, they are less likely to push us aside. I learned this lesson the hard way by not questioning a neruosurgeon and reading my own records. Your post was great. ginnie

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.

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!