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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Justine. Welcome to HB. Although I am sorry that you have had to find us, I am very glad that you did find us. This is a great place to come for information, support, to share experiences, or to vent when you are having a tough time/day. Everyone here is extremely helpful and kind, and we all do truely care. You'll get better information here than you will anywhere on the internet, as you'll get information from people who've been there, done that, and can tell you about there experiences. What you choose to do with the information is up to you of course, but it will help you become more informed, which is very important when mapping out a treatment plan with your doctor.

I was going to suggest that you have you hair done while your daughter had her manicure, but a pedicure sounds like a great idea too. You will be surprised how your children will adjust, especially your younger ones. I know it is difficult for your alomost 5yo, but if you can find different ways to spend special time with her, then she will adjust to that and come to enjoy it just as much. It is you, the mother and adult that will have the much more difficult time with the adjustment in your life.

I know, first hand, I was in your shoes quite a few years ago. I had pinched nerves down my leg and groins, and I could not walk for alomst 3 years. This happened following a hysterectomy when my youngest was about a year old, and my eldest was about 4 1/2. My eldest had to adjust to what mommy could and couldn't do anymore, but he did, and it really didn't take very long. Instead of skating, I read more books to him, or sat and watched him play in the "kiddie" pool more often, or watched a movie with him or something. We found ways to have our special time. My youngest pretty much grew up thinking that it was all normal. It took almost 4 years before I was able to get back into the work force and do the things I couldn't do for years.

Like I said, that was all years ago, and I did get better. I think that is when my Sympathetic Nervous System got it's jump start in being screwed up, but I did get better. On 12-29-02, I was in an MVA, and had a fractured and severely contused left hand. RSD came to visit me (again?), and it spread to my left wrist after a few months. I had 5 good years, then this. I had emotional problems with the leg ordeal, but they are much worse this time. Like Destiny said, most of us are on one antidepressant or another, or on a combo of a couple of them. Depression and RSD go hand in hand, along with anxiety, irritability, and a mourning of the life you had but can't have anymore, plus a boat-load of other emotional symptoms. RSD affects your limbic system, and that messes with your emotions, body temp (and a few other things besides), so on top of mourning the life you can no longer lead, it throws in all thoughs other fun emotional problems, along with all of the physical ones. RSD isn't called a monster for nothing.

I don't know what kind of doctor you're seeing or what kind of treatment you are getting, but most of us go to Pain Management doc's that are anesthesiologists. The best way to get RSD into remission is early, aggressive treatment, and this usually involves blocks (in your case it would be Stellate Ganglion Blocks), GENTLE Physical Therapy, and medicines. Something for nerve pain, regular pain medication, anxiety medication, something for sleep, muscle relaxants, and antidepressants... all of these are some of what some of may or may not be on.

Like Destiny said, a positive attitude, (along with aggressive treatment), is vital to your mental and physical health. I know it is hard. I still have bad mental days. I always will most likely. But I'll have good ones too.

Please tell us how you got RSD, and when, and what kind of doc you're seeing and what treatments you've had or are having. We might be able to help you more if we knew these things. Do you use heat to help you on acute pain days? I don't know if anyone has ever told you this, but NEVER PUT ICE on your affected limb, and NEVER let anyone start an IV in it eather. Don't let them take your blood pressure with it either.

I'm sure this is way more info than you wanted , but I wanted to let you know that things will look up, and that your kids will adjust like mine did. It just takes a little time and imagination. I'm not sure what info you know about RSD/CRPS, so I wanted to make sure you knew a few things. RSD is not an easy thing to live with, plain and simple. You're going to have good and bad days, so please come back and let us know more about your dx and treatment and doc so we can try to help you as much as we can.

Sincerely,
Cathy





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