Welcome to the forum; sorry for the circumstances!

I remember so well my diagnosis in 2009. The one issue with reading a lot about it is that it can kind of paralyze you. Education is a very good thing, but you have to remember to keep a sort of perspective. Sometimes a break from the internet information is not a bad thing.

The one thing that is evident about CRPS is that everybody is unique. Sure, many of us share similar symptoms, emotions, etc. But you are in charge of your own destiny.

It took me about a year to get a solid diagnosis, another year to figure out how to best handle it, and another year to reap the benefits of how to dial it all in. I'm not saying this is the case for all, but it has been my personal journey. Everyone is different.

I will tell you that things CAN get better. I am doing better in 2013 than I was in 2008 when I first contracted CRPS as a complication of multiple foot surgeries.

Is my CRPS actually better? It's still there to be sure and probably is not technically better, but I have learned how to MANAGE IT and I have had some success in taming it and that is making all the difference. And so my life is certainly changed, but it is better now than it once was 5 years ago.

Bram really summed it up very well as she has a knack for but I'll echo the sentiment of finding a number of professionals to help you along the way.
CRPS is always handled better using a "multi-disciplinary" strategy, a team approach.... meaning you'll need a primary doctor who leads the way, help in physical therapy, pain management, etc. It's up to you to determine and decide what disciplines you need. This condition is widely misunderstood even among professionals. Ask them point blank how much experience they have with CRPS. If they ask you what CRPS is, move on quickly.

I use a podiatrist (who is my primary CRPS doctor), a general practitioner who handles other medical issues, a chiropractor, physical therapist and on occasion a massage therapist. As for medications, experimentation with different meds is almost always needed. What works for one may or may NOT work for the next. Not only do you need to try different meds, you need to titrate dosage up and down until you find the "sweet spot" that helps you without taking too much of the medication.

It's a journey. But we're here to help you along the way. It's quite a community here. I've learned a lot and been helped a lot. It goes both ways.

Stay the course and keep us updated. And happy holidays. Don't forget to live your life; don't let CRPS define you.....

Thank You.Right now both feet are freezing, bilateral calf tightness but at lease no pain. Have not had severe pain. I have thought about getting a message, never had one but my whole body is tight. They could probably spend an hour on one area!!!! I can tell my BP is up. I am seeing a neurologist. My ortho surgeon put me on 300mg of Neurontin daily and said... do not look this up...will just scare you and its really not as bad as they say. Asked if I wanted PT (I had never heard if it...RSD) and I said sure if it will help then said just take one pills 3 times a day and come back to see me in a month. I decided to go to a neurologist he is increasing it over the next 3 weeks to 900mg. I have only had slight pain. Not sure why it was bumped up. I just said I had a little pain. He is very smart but did not explain why he increased it. I will ask when I go back. If my BP is not down next week will have to go see my MD. I will also lose my job if not back to work by Dec 27th.
I had carpel tunnel on the right

What symptoms are you experiencing other than temperature regulation dysfunction?

Because docs realize how urgent it is to get an early diagnosis, sometimes they jump the gun...

If you do have it, you have a good chance for remission if they treat you quickly and aggressively.

Hi again murgir

How are you feeling today? Hope that tightness is down a bit... Birchlake had some very good advice, and I'd completely forgotten about the massage bit lol!!!

I do self-massage because I can't really afford to go to one regularly, but it does still help a lot. It has improved my skin, suppleness and the tightness in my legs. At one point I was starting definite contractures (where your muscles and tendons tighten up), but because a good PT told me what it was I was able to tackle it before it got too much worse.

If you go for a massage (pro ones are lovely ) then just make sure you advise them that you have a condition causing you pain, and that touch can be very painful. Ask them to start very gently, and then you can tell them if they can go a bit firmer. Also, make sure the oil they use is natural and only has essential oils in it. Some stuff out there can cause a rash or other aggravation, and we really don't need that!!

I have roughly an hour nearly every morning (if I can) that is just for me. I start by putting on some calming music and stretching out my muscles gently, and then I do a series of Qi Gong exercises and/or "Exercises for those confined to bed" (from a diabetes site lol, excellent for rough days). Then I get out my Monoi miracle oil from the Body Shop and massage each limb in turn, including my hands and feet. All of me smells lovely then . Then I settle myself comfortably and do about 20 minutes of meditation, normally the 'Mindfulness Body Scan'. It always leaving me feeling relaxed and in control. At least for a few minutes lol!

I'm not saying my method is the best or anything, but try to find something you can do for yourself every day that has a calming effect and does you good too. This disease can sometimes make us feel that we are riding an uncontrollable whirlwind, especially when we try to do normal things and keep going like we always have... Relaxing your body and easing stress can do more for pain control than many meds I don't take much in the way of meds because of my work (I need my brain sharp!) and I think my hour saves my bacon on a regular basis. It doesn't stop the pain, but it lessens its impact and I cope better.

Anyway, lol, sorry for the wordiness! Have a good day.

Bram.

It started with my hand being stiff, purplish, scar area sore ,swollen, sweating, nails grew very quick. It was my time to go back to work and too much pain when trying to use at that point. (6 weeks after surgery)