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)

Thank you all so much. I said some brave things yesterday (bad mistake) I was going act like I don't have this!!!! Was short lived. Couldn't sleep last night. Woke about 3 and realized, I fell asleep before taking my neurontin so I took it couldn't go back to sleep. I readjusted my times today. My arm does have more pain today. My calves have been tight and sore for 2 weeks. Last night I had a slight burning sensation nearly over my entire right side including face!!!!! My feet froze while up watching tv , so today I ordered a massager and booties you can warm in the microwave. Thank you all so much. My husband still acts like I am the same as I was before the surgery. He is so spoiled. I did the spoiling so there are gonna be a lot of struggles there too.

Hi murgir :)

Everyone takes a while to get their head around this :rolleyes: and find a plan and meds and activity level etc that suits them. You'll get there, don't beat yourself up about it!

We all have struggles about the rejigging of roles that happens. My husband has been great and very supportive, but we still have had a lot of issues around the fact that I was the leader of our little herd :winky: like most gals, and he supported me. When I got this my first year was a wash-out and he had to take on a lot, bless him, and we both found it very hard. I'm into my third year and we are finally seeing a counsellor about it all, and it's the best thing we've ever done - I honestly wish we'd done it at the start. Not a psychologist through the hospital, but a counsellor - friendly and warm and someone to talk to who doesn't have any agenda... I'm very lucky that mine has experience of chronic pain illness, and she's really helped us both. I see her mostly, but my husband has also had a few sessions, and it's been amazing at opening his eyes to the effect this has on ALL of us. We can't afford it, but it is seriously money well spent :) Do it if you possibly can!!

Try not to worry about random feelings of stabby pains, burning heat or prickles etc in other areas - I've had a lot of this at odd times, and it hasn't been spread. The CRPS is affecting our nerves, and nerves are all connected. It also affects the part of our brain where pain and sensation are processed, and sometimes there's a little short-circuit effect... It's not fun, but you have to try not to panic. If it becomes very regular (every day) for weeks and in exactly the same area, then yes it could be spread, but otherwise it's likely just the CRPS playing its own sick brand of games...

Take care and have a good day. At this early stage of things, it might be helpful to keep a pain diary (or CRPS diary lol) - for each day, record your pain levels out of 10 in the morning, afternoon and evening, and note down any particular pains/sensations you have. Also note any activities you do like exercise, going out, housework, etc. It's a very useful tool for docs (they love it - major brownie points :D) and it's great for you because you can spot patterns of things that cause a flare in pain etc. A pain diary also gives you something productive to focus on at regular intervals through the day, and a feeling of control. Both very important IMHO lol.

Don't forget to have some fun, even if it's just watching a funny show or laughing at your pets/kids being daft :p Hope you have a better day.

Bram.

Thank You so much. I think that is a great ideal about keeping an activity/pain journal. Thank you so much for responding. Love this group already

Hi New Friend, Just got back to this site. Have been away for a few months.
I am in my 22 nd year battleing R.S.D.
To remember it at the begging stages I called it Real S---- Disease. As years have passed I have changed that to Real Special Disease, as a positive, calm attitude prolongs life when dealing with any problem. This is a special one I am here to tell ya.
Education and preperation are good keys. All the advice handed you so far is wonderful. And thank God fpr sites such as this one, I was so in the Dark 22 years back. So was the medical system. Not hat they can fix yu, but every now and then you will run across a caring, knowledgeable sympathetic doctor that can make your days a little easier.
Personally I turned to alternative treatment about 5 years into this. Had lost the use of my legs, right one afflicted greater with the original injury of an ankle sprain.
One important issue for me was to share with family and friends and to try and educate them on this new lifestyle. Make them know you are different and need different handeling.
Oh the Bad days, Just Leave me alone...I need to suffer in silence. That was a battle in itself, as they took for granted that they are helping or want to at least, but...
I would be happy to chat again, have to get some dinner now. Will keep you and all in prayer. Welcome and keep your whits about you and educate yourself. I am very much in favor of a new electrical therapy called Catmare. A scamble of nerve reflex's electrically.
Talk again? Peace & LUV, Andrea

Love the name ....... It fits. I am so new to this it will help me remember the initials.... I you go into remission do you get the use of your legs again. I am so afraid of losing my right hand. Evidently that's expected. I am right handed. I love (at 54) to play the Nintendo DS. Just got my new Zelda game and I am afraid to play it due to over working it. I told my son just to take it home with him, that I didn't want to look at, he but he said no you may get better and want to play it. I exercise it but you have to punch the button a lot to play it You made my day with the name. Keep in touch and I will also pray for you as well as a cure.

Welcome... sorry to hear you are joining us with this monster!

I have been diagnosed about 1 1/2 years. Probably actually had it for at least 2 years or more after multiple surgeries on my arm for median nerve entrapment at the elbow and wrist. I believe mine is spreading to my feet ( my doctor believes it is other disorders)

I get a lot of muscle tightness and cramping. I have a massage chair (was expensive, but worth it). It helps quite a bit. It reclines to zero gravity and has leg and foot massage too. The brand is human touch. I'm also on Valium for both the anxiety this damn RSD causes and as a muscle relaxer. In addition to that I am on Flexeril at night.

Right now I have a decent drug combination going that seems to be keeping things manageable. Of course I still have flares like today the pain is horrible!

What I have found the hardest is finding the balance of not over doing it and causing more pain.

Glad you found this site.

Very true fbodgirl :)

OMG I want one of those chairs!!!!! Do you think it might be inappropriate to ask my poor beleaguered husband for one as a Christmas present lol? :winky:

Bram.