Reflex Sympathetic Dystrophy Support Group

Hi everyone. My name is Emily and I'm new to this site. I'm newly diagnosed with RSD, and I'm trying to find some other people out there that know about this disorder and have experienced it also.

I had an ankle injury last month which turned out to be due to a tumor (benign). I have since developed RSD in the ankle, and it's been a pretty crazy experience so far.

I've had a sympathetic block, which worked wonders for about a week, and has since started wearing off. I've recently started taking Lyrica, which does help, but impairs me mentally to the point where I can't perform my job duties, so I'm at home this week. I'm working with therapy and doing accupuncture religiously, doing everything I know how to make this better. At times I think it's starting to get better, but then I have spells where my foot turns purple and swelled up again, and has even progressed to my knee at times.

I'm frustrated and scared. I have 2 small boys and I'm scared for what my future holds and not being 100% for my kids.

Hi Emily,

I'm so sorry to hear about your recent diagnosis. Are you aware of how critical it is to get treatments fast? The first months are said to be the only time that remission is very probable, although one treatment is now being done that gives us some hope, you really do need to get treatments quick. It's very good that the block helped as well as it did. Do you have another one scheduled? I had them once a week but since they only lasted about 12 hours for me, we had to stop them. It's said that you should get one every 7-10 days. My original pain doctor believed in very aggressive treatment and that does seem to be our best hope. If you don't have one scheduled, talk to your doctor immediately about when you should get another one.

Also, read as much as you can as quickly as you can. This might be the fight of your life, so really get information to fight. A good book is Living With RSDS by Linda Lang and Dr. Peter Moskovitz. There is also good information from the RSDSA,org site. Also, one of our leaders, Howard, has a site with lots of good information from basic to many studies on lots of topics. It's at http://thblack.com/links/RSD/.

I can't emphasize enough how much you need to pursue this quickly, as it sounds like you are. Also, it sounds like you might be working with a good pain doctor who knows RSD/CRPS. That's great! A really good pain doctor will be probably the best thing you can do for yourself right now. Also, Lyrica or Gabapentin, which are very similar, are what most doctors would want you to take at this point. Depending on pain they might give you something else, but those might actually have some benefit beyond just pain relief. I know what you mean about the side effects of Lyrica, but they might get better after a couple of weeks. Honestly I didn't do well on it and had to switch to Gabapentin a few months after I started taking it, but just as many people have trouble with Gabapentin and do well on Lyrica. Sometimes the side effects have to be put up with in order to help the pain, but that's really a hard one if you're having too much trouble thinking to work. I was on WAY too much Lyrica, but I forgot to pay bills and really made a mess of some things while on it. Also I gained a LOT of weight which has been hard to take off since I can barely walk. Try to watch what you eat because it can happen fast.

I feel a little silly how quickly I'm typing right now and how much I'm putting an emphasis on doing things quickly, it's just that it's very difficult to treat RSD after the first months and can lead to a life of disability, which I would love to see you avoid. It's almost the opposite of everything else I've said, but also do what you can to remain calm and not get too stressed because that seems to also makes things worse, if not truly worse at least feel worse. If you're working with a good doctor then try to trust that he/she is doing what you need, but don't blindly trust them because this is something many doctors don't often see or know much about. So, you have to take responsibility for educating yourself. If your family will even help you research this that would be great, too.

It might sound silly, but this group is a great group with people who have walked through having RSD for many years and new ones both. It's a great place to learn about the disorder as well as a good place for support. I really recommend the group and hope it will be helpful to you. If you have any questions, please don't hesitate to ask. I wish I had more positive things to share, but you are in a much better place than most who get to this group far too late to hope for remission. Be sure to do everything possible and let your doctor know that you want to treat this aggressively with blocks and physical therapy. I wish you the best and hope you're able to come back and tell us you think you're in remission. Good luck.

gail

Welcome to the group Emily. Unfortunately you have a long road ahead of you. Just always remember that everyone here will try and help you through everything as much as possible. I have had RSD since about 2004 and did not find this place til recently.

Stay strong and don't give up.

Donna

HI... everyone.... I think we have to clarify something,,,,, Remission does not only happen in the first 6 to 8 months of the onset of RSD... IT can happen to anyone at anytime... IT is more common that it happens in the early stages of the disease.. We can not make a blanket statement that the only time it happens is in the first 6 to 8 month... I went into a type of remission after having it for about 2 and half yrs... I have no idea what made it flare back up, but it did. I at the time was not totally out of pain.. but it was much less than now.... For that matter it is worse now than it was at the start I think...

Also I want to remind everyone, That we are not doctors here. We can only give our opinions on meds and treatments.... And that no one should take anything as fact, you need to research everything yourself, and talk to a doctor before you change your meds or add any new meds or anthing else to your treatment plan......

Thanks

Craig

Excellent point Craig. We always have a chance for remission!

Yes, that is a great point remission is always possible. However in my research people have the best chances in the early stages - From what I have read...

so the point is Never Ever Give UP..

Thank you so much everyone for your replies to my post. I am trying to take life day to day right now. The last week has been very scary for me because my symptoms have spread from just my right ankle/foot up to my knee and also to my left lower leg. I'm scared and I feel like most people in my life don't understand what is going on. I'm really thankful for people on this site who understand and can offer their experiences and a listening ear.

I do have one question: I talked about my nerve block helping very much for about a week. I got that block at Mayo in Rochester, MN. My doctor here in my hometown in North Dakota keeps saying I can have another block if I absolutely need one if I can't stand the pain, but doesn't seem to be encouraging it. He also said I could get an epidural block - that they do these more often. Can anyone offer advice or knowledge about this? I can't seem to find much information about the blocks - WHY it's important (is it just for pain control?) and epidural blocks for crps...

Emily, it is critical that you get a referral to a good pain doc experienced in RSD/CRPS soon. The nerve block injections in the first 8 months of the disease are not just for pain relief. A series of injections 7-10 days apart 5-8 in number and with intensive physical therapy to keep the affected limb(s) moving are the best chance for remission. Though spontaneous remission can happen at anytime and some treatments have put a few lucky folks into remission, the best, most likely remissions come in that early window at the beginning of the disease. Please read if you haven't yet the new paper from RSDS.org about remission in the Activated Glia section of site under the topic Remissions in RSD/CRPS Patients. Though I am trying to get more papers on the subject available on or through the site, remission seems to be a topic written about more in sufferers emails than in papers. I still search for further papers.

But you, not your doctor have to be responsible to get the early chance for remission since it seems your doc in North Dakota is unaware or unwilling to help you with it. By the way. a week help from the nerve block is a great result and I would be really pressing for another injection to see if it would help longer even without the chance for remission.

At this early point in your disease, find the funds and go to MAYO or somewhere else to get the trained, experienced docs in RSD/CRPS. Remissions can last anywhere from months to 20 years in RSD. That's what we want to here, though you know we welcome you here. We want you to not have to suffer as we have!

Rev.

I couldn't agree more with you, Rev! Nerve blocks, which would be lumbar sympathetic blocks for someone with lower extremity RSD, are the treatment of choice normally and are done each 7-10 days normally. This comes from extensive reading and many sources. A good pain management doctor who works with RSD/CRPS patients is still probably your best bet. I have the utmost respect for Mayo but can't imagine a doctor not doing another block immediately, since you had such a GOOD response to the first one. That is a hopeful thing! I hope you're able to ask questions and get more help as soon as possible! As Rev said, we don't want you to suffer as we have.

gail

Thanks so much for this advice. Today I called Mayo and talked to the pain physician on call. She agreed that a series of nerve blocks is recommended for the best chance for remission. They will be calling me on Monday to set up another one. During my last appt, I saw a NP who admitted she was not all that familiar with RSD and kept leaving the room to ask the physician questions. This time, I will be seeing a physician who is knowledgeable about RSD/CRPS for a consultation before the block.

Thank you guys so much for this valuable advice - I am feeling more hopeful now. I really appreciate your comments and information about the importance of getting more blocks. Thank you.

Emily

Post edited by: emilycarol33, at: 05/19/2012 02:26 PM