Hi all, I've joined this forum because I am both a patient with RSD and neuralgia, as well as a professional who sees children who often have neurological issues (not RSD). Actually, the professional interest was what brought me to NeuroTalk initially, but I was delighted to see you also had support for me...

I have had RSD for about five years now. It started with nerve damage down my right leg due to a spinal issue (trapped nerve in my spine had to be stripped some during surgery when the surgeons tried to removed the bits and pieces of a mangled disc, and the nerve swelled etc--I wasn't moving for some weeks at that time and surgery was the only option left). I think they docs knew I'd have some nerve damage, but the hope was that I'd get more movement and at least be able to do a little better. Well, the surgery was a success on that end--I needed a lot of rehab, about a year, I think, going from barely weight bearing to a walker to crutches to one crutch to a cane (still using a cane some of the time), but I am walking again, and I can sit, and I can put on my own clothing (always nice to be able to pull on one's own underwear...after heathaides, friends, family, and pretty much just about anyone had to do that for me for a time...goodbye modesty...).
I have nerve damage going all down my right leg, with loss of sensation, loss of strenth, reduced range of movement (the nerve is trapped in the scar tissue from the surgery but they cannot go in to release it out of fear of making more scar tissue and because I had a reaction to the anesthesia which makes additional surgeries a problem unless they are for life-saving reasons only), etc. I also have neuralgia in that leg and less neuralgia in the 'good' leg (from pressure of the spine on other nerves where the other discs in my lumbar spine are messed up, but at least allowing me some functioning--and anyway, another surgery isn't an option now due to the anesthesia issue). I've developed RSD in my right foot pretty much after the surgery, but it took a while to realize what it was becasue of all the nerve swelling and other stuff.
I've been fortunate that my RSD isn't spreading much--it is pretty much relegated to my legs, worst at my right foot and affects both calves. It is not too bad on the bottom of the foot, thank goodness, so I can put weight on my leg, but it is very bad on the top of the foot and the ankle area. It got somewhat worse after I sprained my right ankle (the nerve gets pulled when I walk and then my leg falls asleep--how it can both hurt and fall asleep I am still wondering, but it is true, it does happen--and then I step on it funny) and tore ligaments in it which cannot really heal well and haven't fully healed a year and a half later.
I have a hard time tolerating ANYTHING touching my foot, but life being what it is, I have to (I'm sure you know the drill....). I found some socks (100% cotton, thick, no seams, cushy, extra softener in washing) that I can tolerate with the least pain, and shoes that open wide in the front and close with velcro but securely enough that they don't rub-around as I walk. I don't look like anything's wrong (sans cane, when I need it). I'm sure you know the drill of that, too.

I'm taking some medications to help with the results of the anesthesia affecting my autonomic nervous system (makes me lose conciousness without warning, basically, and affected my heart--something they couldn't have known beforehan, it wasn't really a malpractice or anything), and that condition also affects my choices as far as RSD treatment goes: I cannot get any of the injections or nerve blocks because they can aggravate the condition I have and throw it off balance again. It is not only that losing conciousness in the middle of the street is a little risky and that I have been to more ERs that one usually would see in a lifetime, but also every time I fall like that I mess up my already messed up spine more...and risk more RSD...so it is important to keep the relative status quo (read: me staying concious) that my cardiologist labored to achieve.
I took Mobic for about 3 years, but then got a recurrent gastric ulcer and had to stop that.
I was also on Neurontin for about 4 years but we recently tried to taper it down and realized it was no longer doing anything much (other than controlling some of the more annoying--vs. painful--neuralgia symptoms) so it wasn't worth it to keep taking it.
I'm taking Tramadol (helps a bit with the calf and back and hip pain)
And Morphine (does nothing for the RSD but helps with the calf-back-hip pain and therefore reduces my overall pain a bit to make it overall more manageable).

I don't know anything that actually helps the RSD directly, other than continuing to use my leg as much as I can, not letting myself develop too much avoidance around it (you know--not to keep it away from the water in the tub or from the sheets at night or socks and shoes etc or even the sand on the beach--though I will not do THAT again!!!). And learning to live with the pain and relegate it to some corner in my being so I can go on with my life the best I can.

It always helps to get support and hear from other people who have RSD, because it is a rather lonely disease, in the sense that one might not LOOK like one is in pain or anything is wrong, and therefore it is hard for people to relate to the fact that I am in constant pain (not that I need them to relate to it, but it does help if they understand it...).

Thats it. I probably wrote more than any of you ever wanted to know...
Looking forward to chatting with yas,
Annie

Welcome Annie! You know, its always sad to hear another has fallen prey to RSD but you are among friends here. I don't post a whole lot but I have been around for a while. I have full body RSD. I was diagnosed in 1989. I have tried and done everything. I mean everything, and I have talked to so many with RSD here and in the UK. My current source of relief from the big RSD/CRPS is HBOT. And this treatment for me has to be ongoing to maintain
pain relief and give some normalicy to my life. Sorry we had to meet like this, but some of my best friends and support comes from this forum. Also, a wealth of information can be found through the posts and threads.
All the best to you. Let me know if there is anything I can do, anytime.
Diana:

Hi Diana, Thanks for the welcome. What's HBOT? I don't think I know what it is or at least don't recognize what the letters stand for. I'm glad to be a part of a support community. Been supporting other people with RSD some time now, through a place that is a chat room that's always open but in the last few months has had less people in it than used to be--last year it was a pretty active room with good ongoing support). I'm not new to RSD--almost five years now--but I'm one of the luckier ones in the sense that it is not all over my body. And my hand aren't affected, so I can type, and I do have one better leg, which helps give me a leg to stand on...
I've been to the UK and I love it. A good friend of mine just went to the UK and she'll be there a while. She loves it, too, more than any other place on earth. Where in the UK do you live? (not trying to ask for specifics, just generally what area--I know about internet security and all that good stuff).
Take good care, and thanks for writing back so fast!

Annie

Hi. Are you seeing an anestesologist pain doctor? I am not sure where you live but I would suggest that and one that deals with rsd. I have seen 4 this year and really feel one that deals a lot with rsd is important. My issue is inner ankle/foot/calf so the shoe/sock thing really hits home. For me though I need a very supportive walking shoe and basically wear them every waking hour. The sock is a huge issue for me and I could open a sock shop from all I have bought and I did alterations on many. Pretty soon I am going to be working in pt with the desensitizing them. I so agree about the avoiding and how hard it is not to get into that cycle. I try to push myself as much as I can and not allow myself to often not to wear socks etc because the more I stay away the harder it is to be able to get used to it again. I heard something at the day program I was in for pain that every day someone in pain takes off it takes a week to get that progress back. This may be off a little so correct me if I am wrong but the basis is it takes extra time. Well anyhow hi and I am sorry for all you are going through too

Annie,

HBOT stands for Hyperbaric Oxygen Therapy. That is oxygen under pressure in a Hyperbaric chamber. It was orginally use for divers who got the bends, or decompression illness when diving. Now HBOT has been a treatment for burn injuries, stroke, ms, cerbral palsy, and RSD to name a few. The oxygen under pressure floods our extremites with badly needed oxygen, increases stem cell production therefore aids in healing. You can do research on HBOT there is plenty out there. I orginally went to Canada for my first series of 40 dives. I have had two series of 40 dives in the US and now have purchase a chamber of my own. I have full body RSD swince 1989 and my life is better with the HBOT.
I don't live in the UK, I just visit. My husband is from England and his family lives there. HBOT is also a treatment for RSD in the UK.
I hope you are doing well today. I look forward to visiting more wiwth you. If you have any questions....ask away.
Take care,
Diana