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.

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The whole concept do CRPS developing in stages (called "staging") is out of date.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

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

#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