pain management support group

I am not familiar with that acronym "CRPS". If she has had that many nerve blocks since 10/09 though, I can tell you from experience that her doctor is needle happy and she should find a new one. In my experience, injections have just aggravated my symptoms (I've had 11) and doctors who are willing to do them one after another are looking for a quick buck (or more $$) because those procedures put more dough in their pocket. I'm not typically this cynical, but this has been my experience, and if you feel you would like to share with others on this, you are welcome to visit the pain management board:
http://exchanges.webmd.com/pain-management-exchange/forum/index

I don't want to run you off, believe me, 'cause you are one of the 3 I've seen here, but I would love for you to get the help that you need.

Also, you weren't very specific with your statement. Are you concerned about the med's she is taking?? The length of time she is taking them?? The amount of pain she is currently in?? Try and be a bit more specific...but if you just want some emotional support on how to deal with a family member who is in chronic pain, you've landed in the right place.

Take care, and thanks for writing, B

Hi,

I know what it is like to have had a daughter with foot surgery as mine inherited an ankle problem from me and it also lead to other problems. Her's appeared in her teen years due to the diffeence in the fact that she has a high arch and I have a low arch.

We both did not have the notch in the ankle bone that jutts out so our tendons just kept moving all around. I was very active in sports growing up. I hiked and canoed and got my children involved early with these things due to where we lived.

My daughter started to have twisted ankles from dance. She did the hiking, cross country skiing, soccer, crew competively (on a scholarship now). Due to being a single parent and getting sick, I didn't put the whole picture together. Yes, I took her for care of her injuries, but it wasn't until I needed care for my ankle due to the fact it was locking up when I was driving and I had problems with using the accelerator and brake...NOT GOOD!..did I find out about my problem. We just happened to mention about Nicole. The doc knew about her college scholarship and did the MRI on her. Well, her ankle was much worse due to the ligament damage. I had my surgery done, as many with my insurance as they threatened to pull away from this practice so this pushed us through. Nicole was on her dad's and it was diffeent. The discussion had started with her. He did push her through as fast as he could as it was her senior year ans she had this scholarship. He ended up cutting off the end of her foot and realigning it so all would be good for a very vigorous collegiate career.

Well, we didn't know about that until the x-rays post-op and saw the big screw! Now, she does have swlling still 4 years later from her running and rowing. She never had time to really do nothing after the surgery. She jsut shakes her head, When I talk about my swelling, and I have had cortisone shots due to the pain and they have been MY choise, she laughs at me. I do have the Lupus involvement and she doesn't and I have always had ankle problems. I take Topamax due to spinal problems and the nrve pain from that.

As B said, is this doc got her thinking she need this because he/she s pushing it? Is Pt cconnected to the doc's office ecause sometimes that is a problem? How does she normally respond tomedical stuf...illness, injections? Is she afraid of pushing herself and feeling the normal pain associated with this? (I don't mean to sound mean!) I coached a lot of softball and met a lot of girls with different temperaments and personalities. or some, being hit by a ball was a maajor occurance. For others, it was no big deal. Do you get what I mean?

So, some pain and swelling is normal. What is her level of tolerance. BTW, how old is she? Has she been an active person and is this getting to her that she is missing dance or sports or horsebackriding,etc?

Good luck!

Hugs,

Marilyn

My daughter is 24. She works as an editor for a publishing company. They have been great allowing her to work from home.She is unable to commute as it requires a 60 minute train ride and a four block walk. When she has her foot down for more than a few minutes the swelling begins and the foot changes to a blue/purple color. She is hypersensitive to touch and often has extreme temp. changes in the foot. She had a double osteotomy with 2 plates and a bone graft.She actually has a very high pain tolerance. She had 4 wisdom teeth removed and never required any pain meds. I guess my question is to anyone who has ever heard of rsd/cprs resolving or is she going to suffer like this for life.

hey there ajkkm86!

I personally do not have RSD, but some other members are suffering from it and I hear it's terribly painful. I found this link to a digest that may be of some help if you can get more info:

http://www.medifocus.com/2009/digest.php?gid=NR015

It's entitled "RSD Digest" and it was suggested by another member. I have not looked through it thoroughly, though. Please let me know if there is anything else I can do. I will try and contact another member with this condition to see if she is available to chat with you. Take care, B

Hi- I wasn'there 3 weeks ago but still want to answer in case you check back. I also have CRPS in my left foot following surgery in Dec. 2006. It's been so hard. Did your daughter get good results from the blocks? If so, she should continue having more to try to put the CRPS into remission.

I could spend an hour or more writing things to you that I've learned, but don't know if you're checking back since it was 3 weeks ago when you first posted. Please let me know if you do check back, and I'll sign up to get notfied to any reply and get back to you.

Right off the bat I would say to read, read and read more about this condition. Doctors are not taught too much about this and unless they are pain management doctors probably have a pretty basic understanding at best. Then, even the doctors who have studied this extensively don't know the cause or what for sure to do... but a very few have some ideas. If you have the financial ability, there is a doctor who does ketamine infusions and has had good luck with getting RSD patients into remissions. His name is Dr. Robert Schwartzman and you can google him. Also, there is a doctor in Texas who says that he has good luck with an electric stimulation machine (all non-invasive), and I have more information on that. Other than that, the blocks are considered the best first treatments and then pain control medications.

You didn't mention how old your daughter is. My heart goes out to both of you. As a mom I know that it hurts you, too. I can say that she probably will never look like she could be hurting as bad as she really is, but please believe her. I've had 2 babies and major surgery (and many minor surgeries) and this is by far the worst pain I've had. I would keep her in P.T. if it is still helping, but you have to be careful with CRPS and not push past a point of making the pain increase. "No pain, no gain" does not work for CRPS. I would go to the RSDSA website and read all they have about everything. Then just google RSD (old name for CRPS) and read all you can. There are websites from that one that might give you hope, as there have been young patients who recover completely, especially if they are treated aggressively in the first months.

I wish your daughter and you the best in this journey. Come back sometime and let us know how she is.

Take care,
gail

Hi ajkkm86,

I just noticed that you did give more information about your daughter 3 weeks ago. I so hope that you do come back! Yes, there are people who can get their RSD to go into remission,but it needs to be treated asap, as she has been but even more. I am sorry to say that it is a terrible thing to get. I have trouble walking out to get my mail which is only about 20 feet, but have not aquired a wheelchair. My foot also has dramatic color and temp. changes, especially with any walking or standing. She is very likely to become depressed. It is such a drastic life change and so many things have been lost that it is almost universal to go in to some amount of depression. It would be helpful for her to take an antidepressant along with pain medications, and some of them also help with the pain. I take Cymbalta. Also, don't let her give up hope. There are a few doctors who are doing infusions with an IV of strong medication called ketamine. It is expensive and not many insurance companies will pay for it but if you or she can afford it or save for it, it has helped a good number of the people who have been able to get it. At this time not many doctors are doing it yet, but I am hopeful that this will change. Please let me know if I can help you. And, I would very much encourage your daughter to come here and read this site. If she wants to get involved, it might be an encouragement to her like it has been to me. There are some really nice people here... not many with RSD, but they do understand pain. Also, there is an RSD support group at MDJunction and one at jabberbox.com. I wish her the best!

gail

Hi Brennan,

I just went to this link and it is actually for a digest that is sort of a little supplement to the big book about RSD which is their Medifocus Guidebook on RSD (CRPS).

The link to the whole book, which is really neccesary to learn much especially all basics about the disorder is:
http://www.medifocus.com/2009/landing.php
The real book, rather than the digest, must be purchased. The digest is just a small email that has limited information, but it is updated information and good to get (free) along with the book.

This book is OK. I found another book called Living with RSDS by Linda Lang and Dr. Peter Moskovitz easier to read with good basic information. I think everyone with RSD should get at least one book, but I am book person and like to mark pages to go back to rather than just reading things online. Just go to Amazon or any large book website and do a search for books on RSD. I hope this is helpful.

gail

I was 26 with 2 small children and a husband that did not understand. This been going on for twenty- five years now. I have written a book called Shoveling Snow Through Hell. I need to get it published but don't know how to go about it. I can't afford to self publish. Need my money for meds and treatments.
As far as I know and been told it is for life...Hang in there.
This is why I'm writing the book, there are days I don't get out of bed.
There are new treatments, that they did not have when I was diagnoised, Ketimine is new, you can go into remission, but have to have follow up treatments, alot.

I just started on this website and haven't read much? I would like to know what part of your body is effected by the r.s.d.? I have been through many things since I was a child and it seams like each thing gets a little harder. I do have someone that helps me deal with it though. My husband like your case didn't understand it. I think back then r.s.d from what the drs. told us was not well understood. Do you have migraines?

have rsd/edema in my left hand and i have been going through this for over two years and the last couple of months it has gotten worse the swelling is moving up my arm the doctors cant help me any more they want to amputate my hand...every thing ur daughter is going through is happening to me i hope this is not forever but it seems like its getting bad i hope your daughter gets better

does your rsd/edema get worse when it gets cold out. mine has gotten really bad since it got cold out. i have rsd/edema in my left hand and now the swelling is moving up my arm and the doctors cant help me any more they want to amputate my hand

hi I see this is 4 months ago but havind rsd for a long time ,Im sure your looking for answers where ever you can .I do live here in midwest and yes for me cold is like a knife ,it spikes pain up and takes awhile to pull it back, I try very hard to avoid ggoing out in cold ,in winter I try to plan errands for milder days,if I have to go out I use auto start on car to warm it for going out { godsend for pain pts who can not tolerate cold } I believe its a common problem for RSD pts and many other pain conditions,Auto start worth cost for us , try plan when you can dress warm and get blankets that plug into lighter in car and use where needed as long as not causing driving prob, hope it helps a little . babyred