Hi. New here, so if I screw up somehow, break etiquette, my apologies. My story is I guess 'normal'...? I was working for a blasting company and sprained my left knee quite badly. I was informed if I went on workers comp, I would be canned. Yeah, I know that's illegal, but I had to pay child support, and I am quite aware of who holds the upper hand in these things. Anyways, I continued working on percocet from August of '03 until December of that year, whereupon they used the three whole days I had missed all year as an excuse to fire me. Nice folks. Anyway, the pain never went away, just mellowed out. I took it easy, and twice in the past six years it went into remission. I was accused of being a junkie three times by docs. (There's nothing wrong with your leg! You're lying!) Well, the third time it went nutso, the pain level was off the chart. Five years after the initial injury, I was diagnosed with RSD. I thought, at the time, 'great, they have a name for it, it can be cured!' Wrong-o. I now have a great job, making $20 an hour, and I saw it slipping away, as I was informed I could not be on any meds stronger than ibuprofen. This luckily was not the case, and I'm currently working. Thank The Lord. I've tried all the new drugs, with horrid side effects. Currently, I'm on two 20mg oxy's, four 7.5mg percocet, three 15mg serax, three 350mg somas, three 5mg vicodin and 150mg of welbutrin per day. The oxy's are soon to be 40mg, (the vicodin is going bye bye) for the pain is still underwhelmed...I haven't had much in the way of space-cadetage, as it were, and am a functional member of society, with a 13 month old son, a 15 year old son, and a wonderful lady.

All in all, I consider myself blessed, my bum leg being my only issue. I am, however, looking for non-invasive treatment options, for I would prefer not to be tied to the pill bottle or treated like a pin cushion. Frankly, I joined this site to talk/type to people who have the same problem. I've not met a soul with it, and most folks have the opinion that I'm weak for not being able to just deal with the pain. They just don't understand. Any thoughts would be appreciated. Thanks.

hey smoke and welcome to the group!!!!

i was 16 when i got RSD 11 years ago from a car wreck. i have it basicly head to toe and internal . like you i still work part time and i have two young daughters 9 and 6. i have a pump for pain control. and take zanaflex for muscle spamas . and nortriptylne for my cluster headaches.

i understand how you feel about docs i have seen close to 100 in the last 11 yrs and can count on one hand how many have actually treated me .. and it took one great doc telling me i had to chose to be stick in the bed for the rest of my life or choosing to live a different life then what i did. and i chose life. it may not be as normal as some but i try.

hang in there buddy. about non invasive there is a lady here named diana that has her own hyberbarric chamber and she can talk to you about it.

carrie

Enjoy the forum. It is a wonderful resource for information and support. I am sorry that you have RSD.

You apparently see a pain management specialist with the list of meds you take everyday. I hope you have relief from them.

I am Dew, and it is nice to meet you.

Pretty new hear myself// Have u tried any pain blocks yet?? I have had 6 or 7 so far and they seem to help with the pain or ease it up some where it is more bearable thank goodness.. I was dx about Oct of 2008 and still working 12 hours a day. Yes my job did not want me to take anything but ibuprofen as well But they eventually figured out that i could handle the medicine and do my job as well. Some peoples tolerance is not the same as others. I have had 9 surgeries in the last 6 years or so. So I think my tolerance is different than some people who had not had as many surgeries or problems as I have..Also taking 120 cymbalta and Hydrocodone. Talk later Lisa or SunshineGirl

Welcome to the forum. What has your doctor suggested for you in the way of non-invasive treatment options, besides the meds you're taking?

Hello Smoke and Welcome to Neurotalk!! It's great that you have found us and theres many great people here who i'm sure will try and help you in anyway they can!!!

I'm sorry to hear about everything that you have and are still continuing to go through!! I give you lots of credit for still being able to work and support your kids as I know it can't be easy at times, especially when you're in a lot of pain!

I also suffer from RSD. I developed it 2 years ago when I was 12 years old after an ankle sprain to my left leg and it has since spread to both arms after further injuries. I've tried all sorts of medications and therapies to help but not that many have helped really and some made me worse.

Do you currently have any Physical Therapy?? PT can be really useful in treating RSD and it is extremely important that you move your affected leg as much as possible, even though it hurts a lot!!!! I go to PT once a week and also have exercises that I do at home on a daily basis that are supposed to try and help with the RSD and Dystonia (a really bad movement disorder caused by my RSD).

Have you looked into the natural options such as HBO (hyperbaric oxygen)? There's a few people on this forum who have tried it and had good results from it. We looked into it for me but in my case, my dr didn't think it would help.

Some people say that things like Epsom Salt Baths, TENS units help. Like everything with RSD though, everyone is different and therefore you cant determine what will work and what wont - it's a matter of trial and error.

I completely understand your worries about medications. I don't like taking any meds due to the side effects and my dr also fears that they could affect my hormones because of my age etc. I dont take any medications at the moment as none worked. I only take Ketamine when I am in a really bad pain flare as that is the only thing that works a little and doesn't cause any severe side effects.

If you need anything, please dont hesitate to ask - i'll try and help you if I can!!!

Take care of yourself. You're in my thoughts!

Alison.

Smoke,
I've had rsd since 83. It's a horrific condition, and worse, it has a big possibility of spreading.
Be sure you have a good neurologist, possibly a PM psychiatrist, and get exercise!
RSD, is "Use it or lose it".

Have your visited rsdsa.org?

there are other good sites, listed at the top of the page.

Also, when someone tells you, that you're not strong? You're not talking to a "friend". You are talking to a Non Compassionate Zero.
This disease will "Mark" your friends and non friends for you.

Learn all you can, from this site, and any others.

You can get a gel to apply locally that has such goodies as lidocaine, baclofen, and others.
(I don't use it, as my rsd has gone full body), but, many folks do) Someone will help with that.

All the best,

Pete
Asb

Hey Smoke,
Welcome, to the site. There are a lot of good people on here with helpful information.
When it comes to others not understanding it's hard. They only need to go to RSDS.org to unerstand the condition is real. You can tell by looking at some people that something is wrong with RSD that's not always the case. I have it full body with organs involved. When I'm sitting I look normal. There are some people that will never understand no matter how much information you give them. Don't worry about what others think about how you feel. Don't allow others opinions to have a negative impact on you. Use your energy and strength to win the battle against RSD itself. I like Pete's wording the insensative people are a "negative zero".
In addition to the medications I take. I see a chiroprator 3 times a week (he is an activator doctor no hands). Workout in the water. You are weightless in the water and the pain is soooo much better.
Sorry you need us but glad you found us.
Take care,
Sherrie

Hi Smoke,

Welcome to the group, there is a lot of information here, and the people are real friendly. I've had RSD for 4 yrs., it started in my right ankle, then spread up my right leg, over to my left ankle, up my left leg, into my lower back. Next it spread to my arms, so now I have full body.
Don't let anyone tell you, you are weak because you are taking pain meds. RSD is one of the most painful diseases rated on the McGill Pain Index, side by side with Cancer. I contracted RSD by 3 failed back surgeries, and I've been taking pain meds since March of 2006. I've taken them as prescribed, and I've been lucky to have a good Primary Care Physician that has treated RSD before, so she understood the disease, and I have read about every thing you can read on RSD, so we worked together treating it. She was not afraid to prescribe meds that were strong enough to make a difference. I'm seeing a Pain Management Doctor now, who gives me injections, and prescribes the pain meds. I'm happy with him so far, but he is really pushing an SCS, and I don't want one. As someone else mentioned, read every thing you can on RSD, so the Doctor's don't push you into something you don't want to do.

Good luck and God Bless,

jmac51

Smoke,
Where'd ya go?

And, I wanna know, what's with the 666?
Aint' that the Devil's number or something like that?
If so, Change it!
Or we'll attack you!

I'm of course, only kidding, teasing.

But, please of course, come back.

It's kind of frustrating, (It seems to me) when we all chime in, and answer, and the original questionnaire is no longer there....
Hmmm.

Did Satan Come?

Just teasin.

Anyway.
Please,
let us know, if we've been of any help, or not?

What can we do for you?

We're all in pain here.
And, we're All here to help...

Pete
Asb