Reflex Sympathetic Dystrophy. (RSD)

RSD is now a days known as CRPS: Complex Regional Pain Syndrome. Do you know at what stage you're at? Typically there are 3 stages, and unfortunately most of us end up at Stage 2 simply because they do not always diagnosis it right away. Stage 2 is considered non-responsive, and all they can really do is treat your pain.

For me it all begin when I got injured on the job building slot machines back in October of 2007. What was supposedly tendonitis mutated into CRPS, but at the time no one could figure out why I was having this horrible pain in my right wrist and hand. Everything came back clean, so surely I was just another person faking it to try and scam the government out of money given it did start as a Workman's Comp case. Thanks to my WC doctor my case was closed, but my pain refused to go away.

Over 2 years later and my Pain Management doctor figured it out; by the time he did my pain had spread from my hand and wrist all the way up to my elbow. Now it is up to my shoulder and slightly into my neck.

I've been on narcotics as a result for about 3 and a half years now. They've tried other things on me, like Tramadol, Celebrex, Neurontin, but so far either I had adverse reactions or they didn't help. The Celebrex actually caused my heart rate to increase dramatically to the point where I would get light headed. Stopped that real quick. And the Neurontin made me excessively nauseaus. Recently they converted me from Loritab to Percoset, and that's all I take pretty much 4 times a day. Tomorrow I go to meet with a surgeon to discuss the risks of him doing a Spinal Cord Stimulator Unit. I've already done the trial, and found it to be a real life changer! But given where they need to place the paddle leads it's also risky.

I function as well as I can. I went from physically demanding jobs to being permanently disabled with CRPS at Stage 2. I can't really ride my bike, as the pressure on my arm to hold my handle bar is to much for me, and certainly trying to grab the brake lever is right out of the question! So instead I walk when the evenings are agreeable enough to it. I take my iPod as I found music to be a great distraction and a real motivator; it's easier to keep a quicker pace when your music is up-beat.

On a daily basis my pain levels are pretty high and affect me on my angles given my issue is now my entire right arm, which is also my dominant arm. There are days when it's a struggle to open a jar, and other days where I don't even bother to try and ask a family member for help instead... and that's even with a lil grippy thing to help me grab it.

Because I only take the Percoset I really don't notice the side effects. I drive my car, work with my friend's horse, and all without really noticing anything. My head feels a bit like swiss cheese these days, so I try to do mental exercises to try and retain what mind I have left. Some of it could be the meds, and others of it could merely be the fact that I'm not doing much other then word puzzles, number puzzles, crosswords, and reading as many books as I can get my hands on.

The depression you will find comes with the territory. Ask around and it's unlikely you will find a single person suffering from CP who doesn't have depression issues in one form or another. I know I don't take anything for mine right now, which is a combination of the narcotics and my pain attacking me, but I fully intend to next time I see my PM doctor.

From what I understand the Spinal Cord Stimulator unit has great success with CRPS victims, and it can restore an ammount of your life back to you, make managing your pain easier, and help you reduce the ammount of pain meds you need to take, if not completely other then as break-through control for when you have flare-ups.

Your son is in Afghanistan... congrats to you for being the proud mother of a military son, and please tell your son thank you, for his service to our country. My suggestion would be try and get in touch with the base chaplain, for whever your son is stationed, that way you can try and get in touch with some of the family members of other member's of your son's unit. While soldiers are deployed you'd be amazed at the support team behind composed of the spouces and family members of the various soldiers. This way also you might get put in touch with someone who has more regular contact with the unit and can help give you updates, depending on how sensative their information is on what they're doing and where they're at. What unit is your son with, what does he do? Alot of the action isn't nearly as hot as it was 8 years ago, but I do know how scary it can still be at times. Make sure if you get a chance to talk to your son you try not to let any of your worry be heard in your voice! You need to be strong for him. Laugh, joke, send him regular care packages! Find out what sort of ammenities his unit has where their at. Can you send him movies, or do you need to send him a portable DVD player too? Send him an Easter Basket! Some times it's the little things that keep them going. I used to bake cookies and send those constantly; home made goodies are a big hit. I sent books and blankets, socks and underwear, lights at Christmas time to help decorate the barracks, and even small cheap toys for the soldiers to hand out to the local kids. If they asked for it, I sent it.

The best way to deal with the disease we have is don't hide it. Do not be ashamed of what you're fighting, do not make it your dirty secret, your skeleton in the closet. I know for me one of the first things I did was go out and do oodles of research! I wanted to learn everything I could about what I had, especially given how rare it is. I wanted to know what my options were, I wanted to know the best treatments, the best medicines. I still do given how things change constantly! But never have I tried to hide it. Hide it in the sence of how much it hurts, yes, that I admit to, but hiding what I have if someone asks me "hey, what's the wrist brace for? You got carpal tunnel?", no. If I take the time to explain what I've got, what's wrong with me, perhaps one person will understand a bit better, perhaps more research will get done on ways to treat our condition, a condition that slowly claims your body and puts it in pain. While I can't say I'm "proud" of the fact that I have CRPS, by hiding it you're denying it, and that only gives it that much more power over you. *hugs*

I wonder if maybe also a SCS unit would help you; it is one of the leading ways they treat or condition. Also perhaps you just had the wrong "cocktail" of meds. I know for me with my Percoset the rules are no more then 4 a day, but if I don't need it, don't take it. Perhaps you were over medicated and that added to everything. Do you see a Pain Management doctor? Have you seen a therapist to talk to? Is your husband and rest of your family supportive, emotionally and physically, of what you struggle with?

Remember, you're not alone.

Instead of going from all those meds to none have you looked in to a smaller amount that will allow you to function?

Are you under the care of a therapist? I can imagine that the stress and worry of your son being away is very hard. Even for me facing chronic health conditions and having someone to talk to can be helpful. I always says that being on meds for the mental side of things and therapy does not fix my physical pain but it does help me cope with it better.

I also don't hide my condition or pain. I am working on not talking about it so much with some people but if I feel scared,worried,angry to the people who do understand this condition I say it. I don't think it is healthy to stuff feelings cause it just builds up inside.

As for activity for me very and when I say very I mean it I built up the amount I could do. So when I started walks after many months in bed I started 5 minutes a week and gradually increased. On every level mentally and physically it was easier to take. I also think some is finding the right activity for you. I could not tolerate a bike with my rsd but can walk. So maybe try something different?

Hang in there

If you didn't have a good trail there's no way they should have bothered to do the implant. Of course what exactly was wrong with your trial I'd be curious to know. I know I had issues, but it was all stuff I've been told will be resolved with the more permanent, sutured leads. But on average these days, if your trial doesn't grant you a certain percentage of improvement, you don't get the implant, plain and simple.

I realize you've been dealing with this longer then I have, but the big thing I have learned in a short time is to pace yourself, even on your good days, if for no other reason so you don't get blind sided by that flare up at 2am.

Laura, I'm not surpried they have since stopped talking about it in stages with where you're at, but it's obvious you have not hit Stage 3 yet, just a real ugly Stage 2. I promised myself when I first researched this I would do whatever it would take to never reach Stage 3.

Oh, and Colorado Girl, you are very right. For such a rare disease (what, something like 2% of the world population) we all seem to manage to find one another and cling together like survivors in a life raft. If it helps us all keep our heads above water while we try to cope with this, you can count me in.

Laura, I did not know there was a Stage 4?!? It was explained to me that here are 3 stages: Stage 1 is usually when they can reverse it, or get it to get into remission, Stage 2 is non-responsive, and Stage 3 is when things get so bad they are forced to consider amputation. I promised myself I didn't care about the pain, but I would never let myself get to Stage 3.

Colorado Girl, for me without putting the leads up into my neck it'd be pointless for me to get the SCS implanted. I had a successful trial, with the leads all the way up by C2. The surgeon I met with today, the spine/brain specialist, has told me his process involves removing a small section of the lamina so they can position the paddle leads properly, and then he sutures them into the ligaments in that area. In all the years he's been doing this he's only ended up with two patients that have developed infections, and only one that actually ended up with reduced useage to one side of her body. Lead migration though is the number 1 cause usually to malfunctioning SCS units, which is why if I'm going to do this I want to make sure I don't run into that as a problem.

As for the pain attacks, I haven't had one like Colorado Girl described; I wasn't arched and screaming in pain... but then I rarely scream in pain, normally I'll bite my tongue, my lower lip, grind my teeth, whimper, or just let the tears stream silently down my face as I struggle to get things back under control. I did have one attack one night, in the middle of the night (while my boyfriend was with me at least) that had me curled into a tight ball ... all my muscles had contracted, so I was pulled into an extreme fetal curl, trembling violently to the point where I woke Mr. "I sleep through anything". In the back of my head I felt guilty for waking him and scaring him at the same time; I know he felt helpless to protect me. All he could do was hold me gently and stroke my back while murmuring to me, and it was enough to help me gain the focus to get things back under control, or as much as possible. Once I go all my muscles to relax I passed back out and went back to sleep. That's normally what happens too; when my pain levels get so bad I don't cry out or scream, not even a whimper or tears.. I just lay down and pass out. My family knows if they find me curled on the couch, bundled under my thick blanket, just to leave me be. I normally won't sleep more then two to three hours when this happens, and it happens almost every day about mid-day.

I'm so very sorry that you've been trying to go this alone... CRPS is a beast. How recently were you diagnosed? Have you had any treatment? Are you on any medications for it? If you have any questions at all, please just ask. I think between those of us here, we (sadly) have some 20+ years of experience with CRPS so together I'm sure that we can come up with some answers for you.

Look after yourself - if you need to cry here, vent, rant, rave, whatever, do it. We know what you're going through and we're here for you if you need *hugs*

Laura

My neurologist had put me on trleptal, neurontin and a couple of other things (I can't remember what) thinking the pain was related to the stroke I had. He kept telling me to go to the Pain Medicine M.D. I am now seeing but I was very resistant. I worked in the Health Care Industry as an Administrator and know first hand about all the quacks that are out there that specialize in Pain Medicine. As such, I resisted going. My primary care provider tried her best to help me. The only thing that worked was fentynl patches at extremely high doses. At that time I was being so over medicated because of my complex medical history that I was literally a walking zombie. I couldn't handle that with a 10 year old child so I took myself off of everything except the meds that I knew I really needed for my heart and stroke. I was good for awhile then the pain came back full force. It is to the point that it hurts to wear clothes because it triggers pain just by the cloth rubbing my skin. Anyway, my primary care doctor finally insisted and convinced me to give this new doctor that she was getting a lot of great feed back about a try. I did. OMG what a blessing she has been. After she examined me on my first visit and explained to me what I have I broke down and just cried. She explained to me how our nervous system handles pain and why I got to where I am. She totally understood that I couldn't be a zombie again and started out slow to try different drugs on me until I found the right mix. We're still working on it but I'm much better then I was. In addition to meds for my heart, stroke and psych meds (for depression, PTSD and anxiety brought on by the health issues I'm dealing with) we have finally figured out that I needed back on fentynl patches and a pain pill for break thru pain (i can't recall what it is at the moment). She also put me on Cymbalta but I found that it wasn't working and my depression is pretty bad at the moment. As such, we decided that I would go back on Sevella and see how that works. While it's not for depression, I found that when I was on it before it took away that deep, dark despair you feel when you're dealing with pain and other health issues. It's still one step at a time for now in trying to figure out what meds I need. Baby steps. Once we get that figured out then she said she wanted to try mild PT to stimulate my muscles.

The hardest part for me is not being able to do anything active with my daughter or partner. It's taking a real bad toll on our family life and my relationship with my partner. When I see that happening I get really depressed/stressed which in turn triggers more pain. What a vicious cycle we deal with. No one understands what is wrong with me. My partner does his best to be supportive but after 10 years of this I can see that it's getting old for him. My daughter just goes with the flow since this is all she knows.

This is how sad it is at the moment. I literally live in my P.J.'s all day. I am either on the couch watching T.V. or for some reason, being on the P.C. playing FB games helps distract me from the pain. I will go 4-7 days without bathing. I have completely given up on taking care of myself. I don't leave my house except to go the doctor. When I go anywhere else, I get panic attacks. Part of this is because I've fainted on several occassioins from my heart condition and had to be taken from the store by ambulance to the hospital. The other part is it literally wears me out. I can't even walk/make it through the grocery store without being totally worn out and in pain. I can't drive most of the times because I'm too dizzy or lightheaded to drive. I will not take the risk of hurting anyone. I can't clean my house. I'll try by sweeping one room, then resting, then I move on to the next or by doing a few dishes, then rest, then do a bit more. I have difficulty cooking. Not only does the meds cloud my mind and I can't remember how to cook but I can't lift anything heavy such as a skillet or bag of sugar. My partner has to take up the slack. I am so tired of this lifestylet but don't know how to get out of it.

Not only am I ill but both my partner and 10 yr old have ADD. This means I have that burden too. I can't go to school meetings yet I have to be my daughters advocate to ensure she gets the education she deserves & needs. My partner was diagnosed at the same time my daughter was. He's dealt with ADD the best he could his entire life w/o knowing what was wrong. Now he knows and is resisting getting the help he needs for it.

Anyway, I'm getting tired and depressed just writting about all this stuff. Today is Easter and I was in such horrible pain. Yet I had to manage to put on my fake face to go with my family to an Easter egg hunt at the beach. I am worn out but can't sleep. I am in pain. I am resentful that my partner is sound asleep and I had to put my daughter to bed tonight. At that time she informed me that she needed her school clothes washed because she didn't have any pants or bra's to wear tomorrow. I did it but it hurts. My brain is racing. I really resent the lack of help at the moment yet I know he was exhausted or he wouldn't have gone to sleep so early.

Is this the way life is when you have CRPS/RSD? Is this what I have to look forward to? How can I change this vicious cycle I'm in that seems to be deteriorating daily. I'd appreciate any input anyone has for me. I'm good at handling constructive critisism if it's called for so don't hesitate. I know I rambled on a lot but it's because my mind is racing.

I just want to say to anyone that reads what I wrote 'THANK YOU'. It feels good to know I may have found a place to vent and learn. Thanks again and have a great week.

Aloha,
Venus

Post Edited (venus2471) : 4/25/2011 3:08:04 AM (GMT-6)

My son is boarder line ADHD, so I understand being your child's advocate. I also understand the level of care your precious girl must require too, due to activity level. Oddly the focus of caring for me seems to keep my son pretty level and calm. I'm grateful, but sad, as like you I can not play video games with him, I can't even ride my bike with him due to the fact that trying to use my right arm/hand causes me to much pain. Plus it doesn't help how spacey I can get because of the high levels of oxycodone I take. It's amazing how my son seems to remember many things, where I'm lucky to recall what I ate or did the day before. He is my anchor to the here and now, and my drive on the days when I have none. It's hard some days, and I hate when he sees me cry; it distresses him so much. My 8 year old son should not have to comfort me when I break down into tears from the pain and the hopelessness.

One of the big things I was told was that you have to fight against CRPS, you can't just roll over and let it defeat you. I know unfortunately the depression makes this difficult, the pain makes it hard to stay motivated to do things. Do you have any hobbies you like to do? I know Laura makes teddy bears, and I like to knit of make no-sew blankets. I don't do beading anymore, it's to hard on my hands, but I'm still "crafty" in other ways. The point is it's something you do, that you enjoy doing. Most of the stuff I make I give aways as presents; makes me feel good to see friends and family smile when they receive one of my hand made gifts... more so because they know about my disability. You need to find something you can do -- doesn't matter how long it takes you -- just something to help keep you busy.

Your Pain doc sounds like she's got you on the right path; looking for the right mix of meds, and eventually starting you on some PT. I know your head tells you your hurting, but you have to fight this, Venus, so your muscles don't waste away. I know it's hard, but don't let this evil disease beat you.

As for your question about is this what your life will be like, I wish I could answer that. I know mine seemed bleak for the longest time; the pain continuing to spread, no one wanting to share my life with me because of my issue, etc. But I have my family, and I have my son, I have good friends here, and I spend most of my mornings at a friend's place helping take care of her animals -- chickens, duck, geese, goats, horses. I'm getting to watch my son grow up, and shape the man he will become. I've got up coming surgery for my Spinal Cord Stimulator in a few weeks, and hopefully that will restore back to me some of my previous life. I try to walk in the evenings as the desert heat isn't something I do well in with my CRPS, but the stars are beautiful, and it helps keep me in shape. I've thought about voluntering at the local animal shelter, but know it'd be to physically demanding for me. Still, I could foster instead as a way to help. Again, it's the little things that are fulfilling and make me feel useful, that gives me something to look forward to, something to do. Something to help keep me going.

I think alot of us can relate to "The Spoon Therory".

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/