RSD?CRPS Is Suicide The Only Cure?
 

Shocking title but I've already planned a way I just can't bring myself to do it due to my faith. I don't want to meet God in person that way. The Bible says nothing about suicide maybe because some circumstances its the only option. I'd also hate my wife and daughter to deal with my death. Problem is at this point I believe that is my future.

I aquired RSD in '98 after twisting my ankle. The pain slowly progressed to the point, after there years, of being unable to were shoes. Now I walk as little as possible, less than a hundred feet a day, to the car and back. Sleeping is becoming more difficult. I spend about 4 or 5 hours in bed and a few more in my lounge chair. Waking up with pain and dreading the day is getting way too old!

My pain was originally in my left foot and is spreading to my right foot and both arms.

We almost declared bankrupcey due to the doctors milking every drop of money from us. I'm now on Medicaid and finally headed to a pain doctor on 8/27/12. I've been taking 100mg of Tramadol and 600mg of Lyrica three times a day just to ease the pain while sitting down. While walking the pain meds do very little.

I'm running out of options just to stay in the picture. I'm fighting to stay out of a wheelchair and can't stand the thought. I'd rather just rot away in my lounge chair.

I've tried all the AMA approved treatments plus Hbot, Giant 4' electric magnents, the Water Cure, and becoming Vegan. If you know of anything else I'd love to hear it!!!!

How about aqua therapy, Ketamine, t.D.C.S., spinal stimulator, morphine pump, a different med combo?

I wish I could help.

For me this disease is about the little things. It's about finding all the triggers and avoiding them as well as finding the things that help and using them as much as tolerated. Ghinko biloba and warm water help so I take 180mg of GB per day and try to keep my hand in a warm bath 45 minutes a day. Mostly it seems to be about distracting myself from the pain.

Sleep is exceedingly important to most of us as we tend to improve in our sleep. I'd talk to the doc about finding something, anything, to improve sleep. I have to take tizanidine to suppress a hardly noticeable tremor that keeps me awake as well as other meds to help sleep. If you're taking anything that tends to keep you awake see if you can take it in the morning instead.

Getting the meds right is job one. I hope you can find something easier to deal with. I often think along the same lines; that ultimately my choices will be exhausted but in the meantime I plan to fight this sucker with everything and see if a more natural death is possible.

Polarisgold,

first I want to welcome you to the group. Second, obviously you have some faith in your background, so you must believe that GOD has a plan for all of us and I don't believe it is for us to leave here before our time.

I understand the pain and the feeling of everyday impending doom. When I reached my bottom I finally got put on an antidepressent.

I am glad you got a pm appt. coming up, there is lots of med options out there. Also I am on a rollabout because mine is primary in my right ankle. This helps a great deal. and has kept me active and able to get around outside my home.

You are doing the right thing by reaching out to people who understand what you are going through. Please don't go through with it. It is as you (not in so many words) put it, but it is selfish and your wife and daughter would be hurt so very deeply.
:hug::grouphug: WE are here for you.

Answers
 

If Medicaid would pay I might be open to a few of these treatments. I've looked into the ketamine thing and don't think it would work for me. I've had this daily torture thing called RSD since '98. I'm looking into t.D.C.S and will try to save enough money to buy the device. It may take a year.

My wife supports myself and our daughter with her office manager job. There is very little left over after paying the bills. I will be going to see a pain doctor 8/27 for the first time and hope he will give me something different that may help. Everyone says don't do narcotics but what else is there?

Thanks for asking.

My trigger is movement like walking or sitting with my bad foot on my good knee. I even drive like that. Makes it hard to get to the brake pedal but I have not hit anyone yet.

I will be going to the pain doctor 8/27 and will remain hopeful until I know better.

Thanks for answering my original post.

Reply
 

Thanks for responding. I am trying to believe the same thing about God. It is so hard to think God is loving and yet allows this daily torture to go on and on. My daughter has grown up with me here but not able to participate, same with the wife. What a burden! They have told me that they love me and I believe them.

What is a rollabout? Sounds like I could use one.

Not going to off myself anytime soon, just fells like my future.

Paul

Hi paul. first a hug out to u man ..a soft manly one.
I too have been on the brink of loosing my house, as well as wife and kids.
I too am on mdcd. and comp covers the red. my wife works to support myself and four kids. (in NY) so I feel your pain. RSD started in my right foot knee and hip. to now every thing below the waist and working on both arms belly head and surgical scars. and walking sucks. i have gained over 125 lbs in one year. and I too am fighting a wheel chair. the roller walker wheel chair is great.(its by DRIVE) cvs might have it for 200. or less. it has helped me be a part of my kids life if only as a spectator. I want to address an remark you made. its about suicide not being mentioned in the bible. It has!! in fact it is a commandment, and we all know it. "thou shall not kill" suicide is taking a life and if I may add a life worthy to keep around. I believe you have much to still offer the world, and much still to learn from it,(it is my belief this is why we exist, to tend gods garden, learn the benefits of life , to experience them, and to bring our experiences back to our great whole..(god). your child will learn from what ever you decide to teach. And you have much left to teach. and love wow even in pain and misery the love you still have to give to your wife and child. focus on that:) I know it gets me through every day. yeah my kids argue, they are a pain in the behind!! but thats why they r kids. I am still amazed by the ,their energy , the way they approach new things and the way they soak up new information. ..Its selfish but I know I live to not miss out on their lives. I try to imagine it and well this is where I'm a tad of a mush..If I live to experience this pain, Just so my kids do not have to then I will do it. well my friend (Paul). I want you to also considerate this as you read my response..
My name is Paul as well>> lol... ok silly but as I saw what you wrote then I saw your name, I said god means for me to answer this. so yes I also agree that we are all here for a purpose to serve a larger design.
god gave us a family, god gave us our life , god gave us guidelines to live by, and yes god allowed us to get this beast. I teach my kids that they were born to a mother and father whom both wanted and loved them, but we didn't choose their form, or order, god did, and the trials of life . so we may not know why or how but we do know that we get only what god believes we can face. challenges and all. you were brought to this site to help you through. you pray often for guidance. I live my day by day with one phrase or (poem )always in my mind. read it . believe it. "foot prints".

You are loved , and admired. that is worth it all. but when it gets to hard to deal with alone. come here and find companionship, understanding, and love.
good luck my friend. I hope this has helped you. I look forward to you future postings. and when you feel weak come her for some strength . god speed and god bless:hug:

If you feel suicidal, then go to an ER. Call the pm and see if you can get in sooner, they frequently have cancellations. You definitely need a psych evaluation asap, which will be covered by medicaid. The YMCA has sliding scale memberships--sometimes even free ones, which would get you into a warm pool.

Regarding meds, it is not uncommon at all to require opiates with RSD. I went without for years, and my quality of life is substantially better with meds that help lower my pain levels (it doesn't take it away). I've had RSD for 10+ years and recently tried Ketamine and feel it gives me the best hope for a decrease in symptoms. Everybody reacts differently to every med and treatment--and new ones are discovered every year.

Good luck.

Sounds like ketamine might be your biggest bang for the buck. I've seen a couple on this list go from desparity to nirvana....just say'in

Keep in mine what happened to JOB. He also suffered, but through it all he never faulted against GOD and in the end he prevailed.

Look on my albums there is a picture of my rollabout. You put your knee on it and push with the other foot.

I too would most definitely recommend ketamine. It as helped my daughter so much with her pain.

You've had RSD since 98 and never seen a pain specialist? If that is the case keep in mind not all pain specialist are equal, so don't get discouraged if you run into one who knows absolutely nothing about RSD. Educate them if at all possible and bring your wife with you if possible too. Very important to have someone bat for you, very important.

Reply
 

Thanks for taking the time to reply, Paul.

I may have a plan to off myself but seriously doubt I'd do it unless it becomes totally unbearable. I have rsd in my left foot and after 13 years it is starting in my right foot. Saying walking sucks is an understatement! I am generally upbeat during the day unless pushed to do too much. I don't know where I'm going with this post......so I'll end it with a question that can't be answered: What is the measure of the verse that goes something like " God says he will not give you more than you can bare"? I feel like He has allowed more than I can bare and yet I'm still here. So I guess He has not given more than I can bare......gotta go this post is going nowhere. sorry..

feel for your predicament
 

Paul, Sadly this disease robs us of a full life. As another said, Life is about the small things. I was diagnosed in 2000. In 2004 I carefully planned and tried to execute (excuse the pun):winky: my plan for suicide. Much to my dismay I awoke intubated in an ICU two weeks later. The recovery from my botched attempt left me worse off than before. Now, I just have that as another RSD related diagnosis on my health record. I understand getting to the point of no return. I understand the struggles. The effect we have on our family and what friends we have left. BUT. had I been successful, I would have missed my daughters wedding, the birth of my darling :D(now 4 yr old) grandaughter, and now sharing my daughters second pregnancy. I pray you can find focus away death. Today is a really bad day for me. I'm diverting my attention to avoid further frustration. I now understand the adage "one day at a time" Sometimes "One minute at a time" Look for the small things an avoid the elephant in the room. There's no doubt, this disease sucks but until God calls you home, there is purpose in your being. I will pray for solace.:hug:

rsd
 

hi i know where you are coming from if you want to talk please call me i have had RSD since 1980 from a car accident an they did not get it right ontil 1988 and i'm still going today Jerry 807-274-6907

Paul, I'm Pete... I've had RSD, tos, several vertabrae, and apnea, then an aquirired head injury since '83 then another traumatic injury in '98. Add them up.
Just had a full body bone scan and results last week It's All bad.
Full Body pain Constantly even with methadone, and other meds, anti depressants, etch.
Still, I've come to realize mostly from the folks here, that I'd only be Increasing the Pain on my family (whom don't even speak to me). They're right!
Why the hell would I want to do that?
No pain that God would allow us to go through, that he didn't let his Son, is worth it!!!!

So, what kind of Puss would that make us?

Get your *** to a doctor who will give you the meds that will help!
This is NO WAY to talk!

Print this entire list out, and take it to the doctor with you!
GET Help, you've got painful depression~

I love you, and so do all of us here!

Please, Paul, I want to hear back from you!!!! OK?


Do this, and do us All a favor!

Stop this crazy thinking, and get the relief you need!
It IS AVAILABLE!
SEEK IT OUT!

I'm Here For You!

I'll be checking back!

(We can't leave phone #'s or email Addy's here, because the search engines will pick them right up, but, you can PM Me, or any of us!) OK??????

Gonna be looking out for you!


Pete

Remember, I've had this bear, and More, since '83! That's taking me on 30 years! Have lost Everything..... Now, I've got to start rebuilding! And, You can too!!


XO

Brother, your life can be joyous again. But the doctors are only going to mask your pain, not tear it out by the roots. I was diagnosed with RSD same year as you, 1998, but I learned how to rid myself of it by 2000. I haven't had any symptoms since then. It would be my honor to share with you what I learned. Shoot me a direct email or respond to this post I'll tell you what you need to know. (btw, it doesn't involve any medical treatment -- it's all stuff you do by yourself in the comfort of your home and -- best part -- doesn't cost anything.) Whatever you decide to do, my heart goes out to you. No one should have to suffer like you are.

Help other then suicide
 

Pleaase re-think all your options. I have had rsd since 1997 but, was not diagnosed until 1999. I recieved it due to a work related injury and had several surgeries. I tried Trigger point injections, Acupuncture,a tens unit, a hot tub (medical reasons=tax right off), massage therapy,physical therapy for 14 months. I'm on a variety of pain killers but, only takes the edge off. I thought of leaving this world many timed because of pain. But because of my children I find other things thast actually work. I noticed when I hold my pet cockatoo, my pain level goes down. Somethiing about caring for an animal helps. I also listen to music that calms me. But, the one thing I did find that helps, and this is for information only. I was advised by a relative who works in the medical community to try a little marijuana, I found out just by going to Google and type in "Medical Marijuana" and you'll find over 15 states that have it legal for certain diseases including RSD/CRPS. I tried it and found within minutes my pain was diminished enough that I can live a life. I can leave the house, visit friends, do gardening and a lot of thiings around the house I couldn't before for 11 yrs. I'm in contact with my state legislature who is in favor for legalizing marijuana for medical use, We would be the 16 or 17th state to legalize it for medical use. It stopped my ides of going to sleep for good. Just type in "Medical Marijuana" on Google or ASK.com and you'll be surprised. Be sure to consult your Dr. before trying anything not prescribed. Good Luck

I survive daily with this knowledge.. Tomorrow will happen no matter what we do. look to today and today alone and deal with what is thrown at you when it comes. again tomorrow is going to happen any way just live the best you can . today. and when it gets rough " and it gets rough a lot" come see your friends here.
We are a community built on the mutual need for friendship, understanding, and a home to vent... to find our perspective.... " If you have friends and family that are willing.. have them visit this site and learn from ll of our pain... also try to find a local RSD group that you may join. It helps to know that some-one lives close to you understands you and this "BEAST" called RSD
and of course we are here too as you have seen..

Repl
 

There is only one pain doc available to me due to Medicaid and our small population. This doctor does have experience with rsd....fortunately.

Up to this point I've gotten by with Lyrica 600mg and Tramadol 300mg a day. Sometimes I can move around and bare the pain most times I can't. The drugs really only help when I stop moving and preferrably sitting in my lounge chair.

I've tried my best to stay off narcotics due to all the bad things I've hear about them but now I'm ready to become a zombie if thats what it takes and maybe get somesort of electric scooter thingy.....I hate the thought.

Thanks for writing me....

Job was healed.

Thanks for taking the time to write me.

Reply
 

I've tried to do the ketimine thing and money was always a problem that stopped me in my trackes

I even had a doctor that would do all the work for free but the hospital would not help me.

Its sad that a life is worth so little to some people.

I'd love to know the details of your daughters Ketimine treatment to show my wife.

Polaris,

Try the rollabout before going electric. Your insurance should cover it. Also, people who are in pain, do not usually have addiction problems as long as they are taking medication because of pain.

it is the others who become addicted. (YES you will have withdrawls, but not like an addict would)

P.S. Yes JOB was healed. So hold that thought close to you that GOD knows when he will heal us, we just have to have faith and use the dr.'s that he gave us.

reply
 

Excellent words! I wonder sometimes how long it will take for inactivity to kill us. Certainly its not good to sit around all day. Yesterday I spent about 18 hours in my lounge chair, an hour outside and the rest in bed. I know I'm wanted and needed by my wife and daughter but sometimes that just does not seem to be enough.

Thanks for sharing with me. There is an afterlife, if certain of that and I think that will keep me from offing myself. Lord willing the pain want get worse!

Thanks again.....Paul

Thanks Jerry. I will keep your number handy. It would be nice to know what treatmnets you have tried.

I will let you know what the doctor says but that want be until the end of August. I'll be hanging around untill then.....so to speak.

mrpaulpoole@gmail.com

I'll be waiting on your reply.

My state of Idaho is anti pot. There are a few legislators that may introduce a bill to legalize for medical use. At this point I don't care about the stupid law. Wasinton is medical pot legal. I guess I need to find some on my own. All through high school I belonged to a group of kids that delt pot...kind funny now. Thanks for letting me know of your experience.

If you do it on your owe be careful. If you start seeing a pain specialist most likely they may drug test you periodically (seems to be extremely popular these days). If they find a drug in your system not prescribed or even an elevation of those prescribed drugs can put a damper on doctor-patient relationship.

I second the "be careful" post just above mine. I've never been drug tested, but they do generally have you sign a narcotic agreement that allows them to do this whenever they want. They want to see that you're taking your meds and not hoarding nor selling, and also that you arent taking any they didnt prescribe.

Im not one to recommend suicide, but I can absolutely understand where you're coming from. You feel like your world is crumbling and there is nothing to live for. I get that. Completely.

Please see a good pain management doc. Explore all avenues. Maybe you need an antidepressant. Lyrica can actually case depression so that might be adding to the problem. Dont be ashamed to let your PM doc know about your thoughts. Assuming you arent currently suicidal they wont involuntarily commit you to a psych facility. However, if you need that treatment... GO! I know we cant get rid of CRPS, but imagine how much life would be if you could come to a point of acceptance and find a reason to live.

I hope things are better
 

You mentioned Ketamine in your ideas of treatment... I have done very well, as I understand your pain, I have had RSD since 98 just as they where trying to find out why I was always in pain vs. just in my head...

I normally live with a pain level of 6 and sometimes I can keep it their with both meds as well a spinal cord stimulator..

What I have done to help me through things is to talk with others, you are not alone... I used to think that, my therapist has an open free session with a group of others just to talk and learn. It is a great help, to help keep your head clear.

My wife and I have worked hard to find out what works and what does not work with my meds and times of day pain.

Here is what has helped keep my pain under control..

7am Cymbalta, Caffeine Pill, 1 Hydromorphone 8mg
8am 2 Tizanidine 4mg
10am Ketamine Oral 100 1ml
11:30 am 1 Hydromorophone
1pm Caffeine Pill, 2 Tizanadine
2:30pm Ketamine 1ml
4pm 1 Hydromorophone
6pm Ketamine 1ml
8pm 1 Hydromorophone
9pm Ketamine 1ml 2 Tizanadine

and if I wake up in pain I have a hydromorophone since I have 1 left based on my scripts.

*** YOU CAN TELL IN THIS LIST WHERE MY HIGHEST LEVEL OF PAIN (EVE) ***



This has also helped me to stop falling as much, when my pain level goes past 10 I normally pass out and fall.

Hi my name is Wendy and I have CRPS TYPE II for two years and 6 months. It's the most life altering pain I'm having to go through. My pain originally started in my right side,(my working hand) then spread over to my left side, then before I knew it I had became full body. I use to be independent, happy, go lucky. Now I count on my husband and friends to help me out. Anyway I found this site thought it may help. Well so Long for now, I have been typing with my left pointer finger

Welcome
 

I hope you find the support that helps you on here. It is tough making the adjustments. Some of us have it easier than others. I am one of the more fortunate ones because I do not have excrutiating pain all of the time. I am mobile most of the time. It has altered my life, though. It took away my career. I even went back to work three years ago, determined to work again, as an office manager. Then, I slipped, fell and injured my right arm. CRPS set in, as it had in my right foot/leg, and like you I had a hard time typing. In fact, I could no longer do the job. That was another blow. I worked for 6 years after having it in my right leg. So, now I do what I can by helping out my grown kids with their children, when able, support others with CRPS, on Facebook and other outlets. You will find ways to cope as we all do. Please keep coming back!

Have you tried avinza? You take it once a day. It will make you sick the first week. That will go away, but it also causes constipation that you will have to take something for daily. That being said, a month into treatment, your pain will start fading away, and you will become more functional.

An answer
 

Take your power back. Get effexor. It has given me my life back. RSD right hand x 5 years w nerve pain body wide. Calmed my brain and in three days I awoke and for the first time didn't have a searing pain body wide within seconds of waking up. Your wife and child will be as grateful. Ambien cr has also assured I get sleep. You wear out if your body doesn't restore itself. All the best.