Howdy all
 

:cool2:

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

welcome to the forum
 

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.

Welcome Smoke!!
 

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:Scratch-Head:

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!!:hug: 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

New here
 

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

What's an SCS?

I don't see a pain management specialist, family doc, but he's apparently up on it. As screwed up as it is, as long as I work, move, etc, the pain stays localized in my left leg. I've been off work, laid off for we have no orders coming in, and I screwed up and just laid around for a bit. Well...that was really stupid, the **** spread down my leg and it felt as if a nail was being driven into the top of my foot, as well as for some reason where my leg meets my butt cheek. I ate more pills and fixed the roof, and although it hurt more in my knee, it went away from the two new areas. I feel so horrid reading about folks who have had it go whole body, jeez, that is my nightmare, and as I think about this situation, and read of organ involvement, well...I am really scared. I, along with 150 others, might get permanently laid off tomorrow, goodbye insurance, and I know I can't keep moving without the meds. Too much agony. I dunno what I'll do then, but I know it ain't good. Dammit.

Hi Smoke and Welcome,
Talking, typing, about our RSD is so comforting. It is very difficult for others to 'understand' what we are going thru. They love us, but how is possible to really understand when most of us before getting it had never even heard the words before. It's been 13 years for me and now full body. This forum has been wonderful for comfort and learning so much and a wonderful feeling of just hopefully being there for someone else.
Other things that I've tried that have kept me mobile is physical therapy, lots of it. Probably 150 and also massage therapy maybe 250. I had zero use of left shoulder-beginning of RSD and later right shouler and later left hand. Therapy gave me most of range of motion to both shoulders, arms and about half of left hand. At least can cut my own food now and type. Swimming, water therapy has been a life saver, saving the use of my feet when it hit my toes and they started turning up. Health clubs or YMCA could be options. Water needs to be 86 degrees. Cold water or ice is not good for us. I use music, candles, meditation, prayer, visualization for relaxation. animal shows, comedy. Anxiety is a large component to RSD. For me, my Dr. has me taking Lorazepam, an anti-anxiety med. I feel it is as helpful as pain med. He is a psychiatrist and when I went full body my neurologist suggested I see a psychiatrist and I am so glad that I did. Actually, for the past 5 years he has been my main Dr. He also is a Neurologist and Pharmacologist. so naturally he ismy pain mangagement Dr. and truly understands as he has had RSD patients before. He is building two clinics with HBOT and I'm very excited about trying HBOT. I've read about it and have some printed info from the RSDSA if you would like a copy, I'll fax it, mail it to you or anyone if you want to PM me with your address or fax. I attended the RSDSA annual meeting this year here in Arizona and talked to others. Hope this helps and again welcome and take care, loretta

wow...
 

I am overwhelmed. I truly expected a blast of ** in regards my meds, as I have become used to being looked down on for being on them. (*****/weakling/etc) Also, I am amazed that anyone actually cares. My apologies for being so long to get back on here, but my little man takes up a great deal of my time. My lady is not able to deal with a crying baby, and well, I have the bulk of the childcare. You may draw your own conclusions, suffice to say, it's damned hard being me. Oh, and playing on the puter makes me hurt, sitting still too long, with my leg bent as well, not good. Ouch. (taking another percocet) Ok, all better soon. As far as the 666, it's in my social security number, and I have used it since I first got on the net. I found it amusing that the number of the beast was there, ya know? For the record, I am a real Christian, not one of those plastic ones. I read The Book, not as much as I should, but I have faith, thank The Lord, or I'd have been dead long ago. My life has been hard, even prior to this crappy RSD. (mostly my fault though) I've looked down the barrel of a gun many times, wondering...but I decided that it wasn't honorable, nor something Jesus would approve of, ya know? I'm not scared to **** off anyone on this planet, but that fellow we felt should be nailed to a tree, well, different story there. I am totally against being operated on, in any fashion, and I have a complete phobia against needles. I'd have to be screaming in agony 24/7 before I'd take a needle at all, no joke. If God wanted us to be injected, we'd all have easy access ports. I am not a crying type of person, I know for a fact I've only cried twice in the past three years, when I found out how horrid this thing was, and when my son was born. All that being said, I nearly did when I read about some of your stories, and felt the compassion there. As far as the meds I'm on, I found out that percs and soma worked for pain when I sprained my back in '93, so when I thought I had a sprained knee, I asked my doc for them. He obliged. The serax was prescribed by a shrink when I 'acquired' panic attacks. It really mixed well though, and I found the three together really hammered the pain, for a while. Only after I was diagnosed did I find that the three I had stumbled upon were the best combo. Lucky, I guess. After I was told what I had, I found it somewhat depressing, hence the wellbutrin. Twice it went into remission prior to the most current attack, year and a half ago or so, and then the pain was pretty tame, comparatively. This time it hit hard, felt like a blowtorch on the inside of my knee, water running down my leg feel, nails being pounded into it, little charley horses as well whenever I tried to walk at a normal pace. I was told I was a junkie by an ER doc.Bastard. Had evil thoughts for him. Took me 45 minutes to walk out to the car, three steps, then stop, and grit my teeth, trying not to puke, seeing colors from the pain, un-freaking-real. Never felt pain like that before. Anyways, I just looked at the clock, I must go, gotta get up at eleven and get little man some diapers, food, and wipeys, then drop him off at Grandma's and off to work. Oh, does anyone on Earth have any idea exactly what the hell causes this horror? Virus? Genetics? Chemicals? A theory even? Not knowing what caused it is eating me up. Well, gotta go.

Later,
Smoke

Oh, and in the real world, yes, most people actually call me Smoke, nickname from work, and it stuck.

Glossary
 

Smoke,

As you start reading the threads, you will see that a lot of us use abbreviations, rather than typing out the whole thing. Unfortunately, new people can become confused. I will try to get a glossary started and maybe others can add to it.

SCS - Spinal Cord Stimulator. This is an electronic device that tickles the nerve bundle in your spinal column. Eventually, a doctor might suggest it as a treatment option. It would not be a bad idea to start doing a little research on this.

PCP - Primary Care Physician. This is your family doctor, Internist, etc.

PM or PMP - Pain Management or Pain Management Physician. Self explanatory.

PT - Physical Therapy - Large muscle treatment and rehab.

OT - Occupational Therapy - Fine motor skills and adaptive equipment/use, etc. Often concentrates on hands, arms, etc. and works a lot with life skills, like "how do I open a can of pop when my fingers don't work?"

I can’t think of others right now, but hopefully other people will join in.

Welcome to the forum.

Mike

good morning smoke. im glad that you found us. it does help alot to talk to others that know how you feel and how things get hard. like i said i work part time for out business and have two girls and like you take most of the grunt when i can of daily parent duties. and its hard it really is there are others that do this also we know how ya.

about your job that sucks i hope that they keep you on (fingers crossed) i live in TN and there is alot of industrial work here and a major car manuafactur where i live. the county next to me unemployment rate is 24% and ours is 12% were next in line .. this economy crap sucks to say the least

about being full body or not RSD is horrid whether you have one limb or all. pain is still pain .. dysfunction is still dysfunction.

hang in there you can pm when ever

carrie

Dear Smoke,

Sorry to hear that your RSD seems to be spreading. Mine has spread also. Along with the spread I've experienced intensifying pain as well, which gets worse, or "flares," when I do too much. This is common for most RSDers. The key is to find the right middle ground, where you are using your affected limb just enough.

The faster that you are treated with the right combo of meds, PT and other medical treatments the better your chances of minimizing your pain and possibly halting your spread. For me, my PT has been really helpful in keeping me sane - he believed in my pain when others didn't (and that was BIG) and has supported me while I fought WC for meds, doctors, treatments, etc. I now have really good docs in Boston at teaching hospitals that know their stuff, but it took me a while to get to where I am. For Loretta on this board, she has her combo neuro, physch and pharm (I think I got that right). You will notice that others on this board also have PM docs, or anesth, or rheum that treat them for their RSD, it depends on where you live and who specializes in what. Your best bet is to combine the care of your PCP (I really like mine, and he writes some of my scripts) with the very best docs you can find that are RSD knowledgeable - usually the best are going to be at teaching hospitals or really large medical centers.

This is the best advice that I got from this board when I first joined, so that is why it is the first thing I am telling you. Especially since your RSD is starting to spread.

Good luck, Sandy

Smoke,
Sorry for your situation.
If God brings you to it, He'll bring you through it.

I apologize, for bustin' yer chops about not being around.
(that seems to happen all the time on the tbi board)...

Anyway,
We'll all be here for you, and in a short while, you'll be one of the gang.

WE all suffer, and somehow get through.
I'm on my way to my neurologist, and my head is pounding. I overslept.
Dam.
I wish you well Smoke!
(I have another friend by that name)..

Pete
Asb

Good deal
 

After I asked what a SCS was, I looked it up on wikipedia. Should have known. I have looked at all the medical stuff on this, and consider myself incredibly lucky to only have it as little as I do. Seems as though emotional stress is the worst, makes it pretty bad. My lady is preggers again, puking constantly, and in an 'interesting' mood. Makes it fun. She told me this morning/late late late last night, 6:30 am, after I snapped and said something I shouldn't have (I'm sick of your attitude) that she couldn't even look at me, and wanted to stab me in the heart, and twist it, for she wanted to watch me die. I dunno 'bout you, but that really sucked. Methinks I'll be right careful what I say in future. And buy a level three tac vest, you know, the one with the knife proof trauma plate...lol...good Lord, whatta long strange trip this is being. I appreciate all your support, I need it, I think. Well, later. Smoke

Smoke, I am sorry I havent posted before now. You had so many people posting to you I thought I would wait. I am sorry you dont have family support. I think next to not having the support of our medical proffesionals thats the worst. You need support at home. You have so much on your plate right now. You must be a really good father if you do the majority of caring of your child. I really hope your RSD isnt spreading & you were having referred pain. You really need to find a doctor who possibly look at doing more for you to stop that from happening. Aroubd here dont hesitate to ask any questions. Everyone here is so good about helping. I hope you find someone to help you.
Take care, Denny

Family support
 

I should clarify something. My mother has been gracious to watch Niki for me when I'm at work, as my lady is lacking in patience with little man, and just loses it. She's a good woman, but hasn't the maternal instinct, I guess you could say. In a way, that has helped me, for I am forced to be the primary person with him, getting up in the night when he's crying, etc, and I feel that has kept the RSD from spreading. I hardly notice it when I'm holding him. Mind you, I'm on meds, without them, I'd be in trouble. I did get laid off yesterday, so by the end of summer, I've got no insurance, and I'm stressing how I'm going to pay for the meds I need. But it's all good right now. I also want to praise the people at Volvo, they have treated me with great kindness and cut me breaks that have made a huge difference in my life. Unfortunately, there isn't enough work for us all, and I was let go. Hopefully things will pick back up and I can get back in. Basically, most everyone has been there for me, with a few exceptions. I know this sounds strange, but I hope the folks who look down on me for being on DRUGS never have any reason to understand the pain I'm in. May they never need drugs for pain. Oddly enough, most of these people are alcoholics, which I found very ironic. Rocks and glass houses never occurred to them, I suppose. Sorry, rambled. I have had great emotional support from my family, and I just wanted to make that point. Well, I gotta go, a friend of mine is needing some help, her mother is dying and seeing Niki makes her forget.
Later all,
Smoke