Reflex Sympathetic Dystrophy (RSD)

[In Him]

I'm new to this forum. I was formally Dx'd with RSD following a surgery in November, 2007 to reconstruct my Posterior Tib Tendon. I say, 'formally' because following a prior surgery in March, 2007 my Neurologist started to talk about RSD but I dismissed it because I didn't have all of the symptoms. Following this particular surgery I was also left with continual spasms in my 5th toe. This is a rythmical spasm, my 5th/little toe moves in and out, the intensity changes at times, but it is continual. I've seen a lot of doctors and no one has ever seen anything like it and no one had a Dx for it - thus no treatment plan either. Following the surgery in March, 2007 - I had a lot of symptoms that aligned with RSSD, but I didn't have the continual/unrelenting pain.

That changed following my surgery in November, 2007. When I had my stitches removed it felt like someone was ripping open the side of my foot. I typically have a high pain threshold, but this was a different type of pain - a pain that I had never experienced before. I returned to my Neurologist and she reiterated that I had RSD and she felt the surgery just threw me over the edge I had been on. I asked my Ortho Foot & Ankle doctor about it and he dismissed the Dx. He refuses to say RSD he refers to it as 'nerve issues'. I then asked for a referral to a Pain Management doctor because I was told, by a couple associates that are doctors, that if I truly had RSD that it was imperitive that it was Dx early - otherwise '...it could ruin the rest of my life...'

My Neurologist hand picked the Pain Management doctor and took care of the referral. My first appointment with the PM took about an hour. After he reviewed my medical Hx, completed an exam, etc... I was told he had good and bad news. The bad news was that I had RSD and the good news was that it was caught early. According to my PM catching RSD early gave me the advantage that most patients never get. He stressed that he wanted to treat it aggressively. He adjusted some meds and added on to them and I started Physical Therapy We tried a local regional block, but it didn't work. Following that I was scheduled for a series of 3 Sympathetic Blocks. I did get some relief with each block. Following the last block I experienced relief for about a week and a half. Each day past that my pain has slowly been creeping back up. So, we are currently setting up another set of Sympathetic Blocks that will start next week.

My question is this... are there other non-traditional treatment options available? For other RSD/CRPS sufferers - what treatment plans have helped you? Do you have any suggestions for treatments or any input for someone fairly new to RSD?

I'm trying to research and read as much as I can. There are definately days that I feel I'm making progress and then of course there are the days that I feel dreadfully awful and just feel like crying.

[G0J0G0]

I'm trying to research and read as much as I can. There are definately days that I feel I'm making progress and then of course there are the days that I feel dreadfully awful and just feel like crying.

Hello In Him,
Welcome to RSD at it's best. Your PM doc is correct the "good news" is that he caught it early and has started treatment. Unfortunately there isn't any solid known treatments that magically work this disease away. Stay with the P/T as much as you can stand, for inactivity seems to make the pain and spreading worse. Some will say that RSD doesn't spread and other factors cause the symptoms to appear else ware, but I have had two physical therapist tell me remaining active will help in controlling the symptoms. You can research spinal cord stimulators and hyperbaric ozygen therapy, the latter of which is a bit more contoversial and isn't as widely accepted (my insurance doesn't cover this for RSD). And last but not least some have found some relief with ganglion or spinal blocks, these were largely ineffective for me.
So if you can't tell by now the options are limited here so I would suggest that you stick with your PM doc if he is helping to bring some relief to you. Join in here if any of us can help in any way, for we all know what you are facing. The journey you are embarking on difficult at best and painful, so chime in when we can lend an ear, g0j0g0

[nancyjtb]

Hi. I'm new, both to RSD and to this forum, but I want to share with you something that seems to work for me. After searching online, I found an old post that said that Hypericum (also known as St. John's Wort) works for RSD. It may be that my symptoms which, compared to what I've read, are pretty mild (I have had burning pain in my arms, color changes, hypersensitivity to cold, & bouts of "brain fog" since having carpal tunnel surgery) make it easier to treat. I don't know.

Anyway, I went to a health food store & bought St. John's Wort in capsule form. I also bought Hypericum in homeopathic form. After checking with my MD, I started taking both. It helped tremendously; the pain, hypersensitivity & brain fog all went away! Since then, I went off both meds and my RSD symptoms came back. As a result, I'm sure that these natural meds made the difference.

If you do a search on this forum for RSD and Hypericum, you'll find more information.

Hope this helps,
Nancy

[In Him]

Thank you for your input and information. The last week in a half have been pretty bad... that's an understatement. I'm a little over a month out from my last Sympathetic Block. I felt pretty good after my last block in March. Then I got close to a couple weeks out and my pain started to increase again. I'm scheduled to start another set of blocks the begining of next week. I never thought I would see the day that I'm actually saying that I am looking forward to a Sympathetic Block. I've been in contact with my PM and we've had to really increase my meds to break the pain cycle. He knows that I don't like to increase my meds (I keep wanting to get off of them) but I also understand the need for them at this point. I hit a wall the end of last week that my pain levels were off the chart, I felt hopeless, cried a lot, couldn't sleep, etc... I did call my PM and he increased all of my meds. I followed the new regiment all of last weekend and felt a little better on Monday and got the ok to drop my meds back down. That lasted until Wed of this week. By Thursday I hit the wall again just like the prior week, so I contacted my PM office again and again we're increasing the meds and keeping them at this new level until my Block. I can only hope and pray that this next block will substantially drop my pain levels again!

My PM has mentioned the SCS and I have said absolutely NO. I've heard some awful stories about SCS and for me that is just not an option. I'm researching the Hyper Baric Oxyen Chambers. My insurance will not pay for this treatment and it is about $250 a session. I've been told by an alternative treatment center that they've worked with RSD/CPRS patients and they have had success with HBO treatments, but it will take at least 10 sessions. Will all of my other medical expenses right now I just can't put that out too. But it is in the back of my head. I'm not counting it out at this time.

Has anyone heard of doing acupuncture for RSD/CRPS? I'm just curious if that could help...

I do continue to do PT 3x/week. It is difficult because I am rehabilitating a reconstructed tendon in addition to dealing with RSD. I'm over 4 months out from the Sx and I'm still having problems with the reconstructed tendon. The PT and I are concerned that I'm continuing to have quite a bit of tendon pain in addition to the RSD pain. I can differentiat between the two. We aren't doing as much on desensitizing, but instead working more on ROM and strengthening. At this time I don't have a set number of PT sessions. As long as we can show a medical necessity then the visits are covered by my medical insurance.

Thanks again for your input and information. I really do appreciate it! I need to head to bed... I have too many meds on board right now.

Take care,

In Him

[mrs_hippie]

Hi!
I have been having acupuncture for about the past 2 years. My acupuncturist told me that if I had been ableto see her long ago, that she may have been able to stop many of my symptoms of RSD, but since it has been so long (over a year) that it will take longer or may not be as effective. I find that it has helped to keep the pain down and maybe even the symptoms from spreading. I go 3 times a week. It doesn't hurt and is not scary as many people think. There ay be some minor discomfort depending on your pain and symptoms that day, but I wouldn't miss mine for anything! I found this out last year when I went on vacation. WOW, did I find out how much I needed my acupuncture treatments! I would check around to see is you can find an aacupuncturist with experience with RSD and has been in the business for awhile.

I also go to aquatherapy twice a week. The water must be in a very warm(92-94 degrees). Mine is located as part of a complete PT program. If you can stand the touch of the water, it is such a good, "free" feeling, as your pain is lessened from the warmth and you can move about with less pain. I have been working on rebuilding the muscles in my leg since I have not had any exercise for 3 years and the leg has atrophied. I am pleased with the results.

So, I hope I have helped you to look into some alternative treatments. I am always looking for new ones (I'm checking nito hyperbaric RX at this time) as new technology, etc. can possibly find a cure someday!

I wish you peace and pain-less days!
mrs. hippie