Serious answer to this question about pain and suicide
 

I haven't been on for awhile due to my computer going shot. I had to send it off since it was under warrenty.
Also seem to be too busy at times with the kids, grandkids, and other things I get myself into.
I was talking to a friend today about the RSD. She is having a horrible time with it and me, I am seeing a flareup due to the weather change. I am not on any meds at this time for pain but I have them here if I need them.
I remember on braintalk, people seemed to be more open and out there about things going on with them compared to here. We just all seemed to become a part of a family on there that bonded so closely that we all still talk by phone, email, facebook and so on.
One of the things we saw on there were people that did commit suicide due to the RSD and that may have brought out more of a connection for us.
When I talked to Diana today, I told her that according to the pain I go through, and what I feel when I am at my worst, there has to be more people that do think about suicide when they are at their worst. I had a day like that yesterday. My Dr. knows my situation and I can call him anytime and he will help me so I know I have that support.
What I want to ask is what percentage of people with the RSD do you believe thinks about this with what they are going through. To me RSD is hell on earth. I feel if more people were honest they would be more open about this and I think too they fear what would happen to them if they said this to their Dr. or Psychologist. I don't fear it due to my Dr. understanding me but do others feel this way?
Am I mistaken about this or not?

Ada

I think that it is a very large amount of us. I know I think about it at least once a week. My psychologist doesn't seem to want to touch the topic, which is kind of strange, but he helps in other ways.

Missed you!!
 

Dear Ada,

Sorry about your computer, and welcome back.

What an awesome topic...thanks for bringing it up.

As most of you know, my RSD started in my right shoulder, but quickly spread to my cervical spine and the occipital area of my head. When it first spread, I was a complete and utter mess. The nerve pain in my head was excrutiating. And it was triggered by all kinds of things, like bad weather, or raking leaves, or digging in my garden, or a cold wind, or sometimes I couldn't figure out what the trigger was. And worst of all, I had inadequate means to deal with the pain - no strong meds, no decent medical care, a full time job, and a WC adjuster with absolutely ZERO heart. It was truly a nightmare.

I was closer to committing suicide during that time than ever before in my life. I posted often on this board during my early days with RSD looking for help and ideas on how to relieve my pain. Eventually I ended up with a a doctor that I loved in Boston that tried to help me, but numerous SGB didn't put me in remission, so I took a one year medical LOA and added .75 mcg of Fentanyl to my list of meds. Ketamine infusions have really helped lately. I'm not all the way better, but I am back to work!! Yeah!

The feeling of isolation and helplessness of RSD has been the hardest for me. This site continues to provide me with a sense of connection to others wtih RSD. You guys are great, and I am really, really glad that I found you.

In answer to your question - when I felt suicidal - I really didn't have anyone other than this board to talk to. My pain doctor in RI dropped me because WC refused to authorize any new services. Thanks for being here.

XOXOX Sandy

I also really enjoy this site!! I should post more but I just don't have the words.........

Ada..
 

Hi everyone...

So nice to be back even for tonight.. I miss you all!! I must say this is a topic that will make us all search deep within ourselves and really count on our honesty.. With the depth and hopelessness of our pain and future with RSD, I dare say..we'd all be lying if we didn't think of 'the bullet behind the shed' tactic..but I also think we have decided to stick it out for some reason and that is why we seem to counter act the sadness of our RSD with a reason to stick around.... we just keep showing up at the breakfast table..everyday.. Either it be hope for future intervention or just the plain..one day a time out look.. Thats me..I put my energys into today..make the most of it..share the warmth in my heart ..allow yesterday to go as that is now my past..and welcome tomorrow once it gets here..in the mean time, take what we can get and think happy thoughts..cuz as we know..things can change on a dime... and when it comes right down to it..it does beat the ole' bullet behind the shed tactic..cuz if we did that..we will probably miss out on some wonderful times ahead in our lives... All I know is God didn't create RSD for the weak..We are built strong and can survive what ever comes our way.. we prove that... and.. all the time.. we are still smiling.. {even if we are in pain and don't mean it}..

Much love to you all..Kathy:grouphug:

Jenna, you sound like a private person and there isn't anything wrong with that. Perhaps you would be more comfortable doing private messages. To do private message-look to upper right hand corner with your name and your notifications-push that and it will bring up a page. on the left you'll see private messages-push that and write the name like loretta, then subject
sharing thoughts. It will get you used to communicating with ones you feel comfortable with. Sharing thoughts that you feel safe-is a way to feel relief, feel understood, and emotionally feel understood. It is healing.
As you meet ones, you'll learn practical methods of relaxing, helping others feel better, and therefore feeling better yourself.
Jenna, you could tell about yourself-areas you feel comfortable with.
I am 62, married 42 years, one daughter 31. Live in Arizona and got RSD 15 years ago following surgery. Wasn't diagnosed for 4 years, but immediately did get pt because of frozen left shoulder. I had like 100 treatments along with massage therapy and got nearly full range of motion back. The therapist told me it might go to other shoulder. Had at least year remission, then went to other side. More pt. and another remission.
While water skiing, got RSD in left hand. Was misdiagnosed, then correctly diagnosed after flying from Arizona to Oregon. As I learned about it-it was devasting. No more tennis with my daughter, water skiing, snow skiing, later when I went full body, my neuro suggested seeing a psychiatrist. For me, that was a life saver. I was crying so much and devasted. When my neuro said I was full body or generalized, he suggested seeing a psychiatrist. When my parents died 10 years prior, I did have 2 years of grief therapy.Losing your health is like grief therapy. actually same stages. We have so many losses. When we deal with the changes and losses in our life and look to what we do have, we gradually take baby steps in living life.
I do miss many things, but just bought a camera to start a new hobby of photography. We used to travel a lot and I hope next year to do a little traveling. I have found journaling to be therapuetic. It took several Drs. to get the right one. We have to be our own advocate. I have a wonderful Dr.-I didn't like the two psych. docs my nuero suggested. But I found my own- out of the yellow pages LOL 6 years now, and I'm on the right meds and better than I've felt for a long time. Actually the last two days have been hell-it's been raining and high high pain. I see my Dr. Monday and am checking into a compounding med for skin and pain issues. I have internal RSD and parts of my body feel HOT like 105 degree hot pain. It's pretty tough. So hopt the compounding pharmacist can do something. It is tough. I have some goals to make my life productive again. Just a little goal or project brings accomplishment to our life. I know I always feel better getting out of house and doing an errand. I can drive after waiting 4 hours from taking pain meds.
Sometimes I have to wait 2 4 hr periods.
I don't have insurance anymore, so am trying to get SSDI. I loved what i used to do. Have a coffee business-delivery products and equipment to various businesses, and bottled water with refrigerated equipment. I really miss getting out and meeting new business, but pain limits me.
Tell me about yourself and how you got RSD and how long did it take to get diagnosed. I've written Dr. Oz. and asked for RSD to be highlighted on the show. Our neighbor is a Dr. that teaches at a University for Drs. and he asked me if I would speak about RSD to student Drs. I'm hoping to do that this winter. RSD just needs more exposure to medical students and schools.
I especially hurt for children that get RSD. I'm grateful I got to have a child, work and travel. My daughter was 15 when I got RSD. We played tennis 5-6 days a week, taking lesson, attended tennis tournaments-went to US OPEN 12 days-so much fun. I can't imagine a mother with a child with RSD-just breaks my heart.
I would love to hear from you. I'm going to do some research tonight. If I find something out, I'll write and share with you. One of your new friends, loretta with soft hugs:grouphug::grouphug:

Hi,
 

Thanks for the response.

Lisa, I wonder why some Psychologist don't want to tackle that issue also. I have 2 nieces that deal with major depression due to illnessess. Kristie calls me sometimes 11 or 12 at night to talk to me until she gets to sleep. She says that she can't talk to her Psychologist about her suicidal thoughts and he's been her Psychologist for a few years. I don't understand that. I think that they feel they might have to deal with it in a different way then they deal with other issues. Back in 98, I went to one that wanted to do ECT on me. I didn't know anything about it and my PCP made the decision not to have it done. He said that I was dealing with depression due to illnesses and that I wasn't mentally ill. He might have changed his mind by now though. LOL

My other niece does talk to her Psychologist about her suicidal thoughts and he's been helping her for years so it's just the difference in them. I would try and find another one or maybe just come right out and tell him it's something you deal with.

I have dealt with suicidal tendencies all of my life and have came a long way but boy when my RSD really acts up, I go back to them. When I first got RSD I was so bad that my PCP put his whole office on call for me and if I wanted to walk in I could. I still call him if I am having a bad day and see him regularly.

I was just thinking of this yesterday due to having such a bad day and my thoughts are the same the whole time I am dealing with the pain, a gun. I don't have any in the house. My Dr. had Bill to let Travis keep them all 10 years ago when I was so bad. As far as my meds, he kept a close eye on me with them while I was so bad off.

I would think if that Psycholgist isn't going to let you talk about this subject, you might need to find another one. Find one that will let you say anything you want to say to him.

Jenna, As Loretta said, PM anyone if you want to talk. I will be glad to listen and talk to you. I'm very open about where I am in my life and where I was.

Ada

Dear Ada -

I agree with so many of your points. Over the last three years or so (not just at the point we transitioned from BT) we have lost a lot of serious participants. And BT was a more compelling environment - even if the mods weren't as carefully neutral as they are today. And for those many of you who weren't there, the factional politics could be intense. I miss all those folks, Artist, Vicc, Condor, Kit Deluca, Lisa, Roz and yes, Theresa. Just to name a few. What folks here probably can't appreciate was that we often had threads going on with 50+ entries and 1,600 hits. Of course, I always to the more serious topics while others liked their fantasy "Road Trips," but that was just a matter of taste.

And where did they all go? Well, some folks passed on, others got sicker and sicker and then we didn’t hear from them again, and then a lot of people just seemed to move on of their own accord and before you knew it, there went some of the critical mass. That said, it's great to see Rosie posting again!

If there was one big difference, it was the issue of institutional memory. And not just what was inthe heads of the people who had been there the longest. GUYS: there is a search key up at the top of the page. Use it. We love it we new folks come on, and are happy they've found the place and can tell there story. That's great. But if you want to use this place as a search engine, please, consider starting with the search function in the blue bar above, hit "advanced search," list this form and then just search by titles of posts. You will be surprised how much stuff is out there.

Now, as to the subject of your post, we have to be careful because the board's rules are very touchy on this of all subjects. Let me just make two points. Jim Broatch, the Executive Director of the RSDSA make no bones about the fact that most of his endowment comes from memorials. Okay? Secondly, here and off the board I have had too much experience with this issue in the chronic pain population. A young women in her twenties, married, but just a kid, her father was a magistrate in the Cincinnati area. She also wrote very beautifully and yet her poetry was so vulnerable she reminded me of a college girlfriend with a depression issue who had died about18 months after I last saw her. Of course, this young lady couldn't find anyone who would treat her on account of her age and a prior substance abuse history, way predating the RSD, so I tried to be helpful and encouraged her family to take her across the state to the Cleveland Clinic. Forgot to tell her though that it was important she be seen by Michael Stanton-Hicks, MD. As if was, she made a clinic appointment, and some young guy blew her off in 10 minutes, no way they would touch her. She posted about the disaster as soon as she got home, I sent her a PM apology and then nothing, for a couple of weeks, until a lady on whose board my friend assisted in wrote in to tell us that she had died, attaching a copy of the funeral notice from the local paper, name of her folks, her husband, her age, 25.

With what I know now, I should have made an MBSR program the first priority. Heck, today I can teach meditative coping skills myself. But I didn't see it then. So yeah, that one hurt.

Another friend of mine, much more senior in every respect, was going mad with cancer pain, and the palliative care physician said they had done everything they could for her, where she was already on a Dilaudid pump! One day she quietly checked out of the hospital to OD at home. Except that two things happened: she was so endured to heady meds that a six month supply of everything just put her to sleep for a couple of days. And when she woke up, she was feeling better! Turned out her team of top doctors had missed what should have been an obvious case of "hyperanesthesia" and she was consuming so many opioids, they actually started to magnify her pain! Bottom line, she got several more months if bearable pain to spend with her grandchildren until her cancer became unbearable again, only this time it finally took her.

Bottom line: you never know when relief - in whatever form it may take - may be just around the corner. And if it's just in ever deepening acceptance and grace, that's no tragedy. Will I always (or let's be real) will I generally feel this way? I don't know. I hope so.

Mike

P.S. I am only responding here to your first post, just saw your second as I posted and have to run without reading it for the timebeing.

Hi Mike
 

I can be serious or joke. My PA always said I had a sick sense of humor. It does run in my family though, we could find something funny in the bleakest times of life. That said, I loved the road trips, recipes, jokes, reminensing, and just the laid back attitude everyone had on BT. What we couldn't think of!
I liked the seriousness also, we learned so much from each other and I do believe that has brought us to where we are today. I think of Allen, Vicc,Tallone, Claudia, Jose, Marilyn, and to many others to name. Just hooked up with one on Facebook yesterday that I didn't remember from BT.

I will say though, I don't like what I call drama or just plain fighting. In a family of ten I didn't see that. I think a person can get their point across without hurting other people. I am still from the old school where the golden rule was " Do unto others as you would have them do unto you." I'm not a control freak and don't care for being around them. We saw that at times on BT and see it here at times here. I also believe at times that comes from how much meds a person has in them. I notice some meds give a person more guts then at times is required from what I took.

As far as the suicide issue, I am sorry to hear you have dealt with it. I have known 5 people in my own life that ended theirs and I remember 5 from BT. I just have this strong feeling that there are more people with RSD that deal with it then we know of. If we can help them in some way then it is an issue that is important. I encourage Councelling all of the time to people. I just think you need someone to talk to that you can say anything you want to and know it's not going to get to someone else. I am sure some people in my life have been saved due to councelling such as my nieces and me for finding a Dr. that has stood by me like glue. I would not be here today had I not had his support and I hope others can find that in someone out there. I know we have the forum, but that is not enough in my book. I want to be able to call someone up or go see them and ***** if I need to about my life and know they can give me a different prospective on what I am thinking and get rid of the stress that it brings to me.

I'm glad your around Mike, it's good to have the help you give to everyone. People come into our lives for a reason.

Ada

Did I ever think about it ? Sure

Would I have done it ? I hope not. I don't think so.....but I do understand being desperate for any way to get the pain to stop.

I was on BT before the great crash, but on the TOS and CP forums. Couldn't have told you what RSD was back then. Finding out that there were others like me, who were being told it was all in their heads, was a great consolation during my darkest period.

The last few years have been different than the first few with RSD. Before I had the diagnosis, when I wasn't being taken seriously and only finding any pain relief with 20 hours of ice packs per day, it was very hard to be hopeful.

Finding a doc who would listen, dx, and try to treat the problem.....and feeling legitamized with SSDI approval have helped tremendously !

Now I need a new doctor, want better pain control, and am still fighting with WC to get any treatments approved, but life isn't awful 24/7. I know that I can have good days.

For me, that makes a HUGE difference.

Great question
 

Anyone who hasn't admitted they wish they could go to sleep hasn't had the RSD get bad enough yet, but if it does - I'm sure all people do think about what good is there in waking up tomorrow morning. To me the important question is why a person is tired of living.

I know I hate the financial waste of resources. In our situation, my damage has and continues to cost us a small fortune. That money could be better used on something else I'm sure. Then there's the physical waste. So many people have to waste their energies keeping us up and going when they should be out enjoying their own lives. Then there's the question about when we're still living v/s just being a body with a pulse especially when all you've got to face each day is pain, pain and more pain.

While I know I don't have the answers, I don't think there's anything unhealthy about admitting there does come a point where enough is enough. I have talked with my doctors very openly about this and I've been told that anytime I want to stop taking the medications that are keeping me alive, they'll back up my decision. In this situation we're not talking about suicide, we're only talking about moving my medical care to a palliative care approach which will in time end my life. I know I feel that for those where it's just medical care keeping us alive, there's nothing wrong with stopping all this nonsense. Now if I were to actually talk about ending my own life, then I'd be at risk of loosing all of my pain medication due to federal mandates and such that's are out of my control, hence the reason this is such a scary topic.

For those who feel they're being forced to be alive even though they don't want to, please look into the various palliative support groups and learn more about how to change your approach to care. All books/lives have their final chapter and to me I'm the only person who has the right to choose when that chapter has arrived. Meanwhile, make sure you're getting positive support along the way. Believe it or not, there are many medical providers who also agree that we're no longer using medicine as a way of creating a better life, but instead only that we just keep extending it. I'm proud this topic has finally being brought up for all to admit and talk about.

wow, for some reason i headed to this page tonight......
hi ada, miss talking with you....
as for the topic here, frank has been going to va for medical care lately.......they sent him to a doctor thursday, to discuss his depression......(remember mr. macho man?) he has been in such misery that he is having a harder time hiding it.....why does he try? i don't know....but he has said he thinks about suicide often, but won't go ahead with it because he won't hurt me like that......
i remember all the others on the old board, and miss them...i know who michael is talking of about the young girl..that was awfully sad....she felt no one believed her....so sad....
vicc is still missed for his knowledge and sharing....i too loved the road trips.....still see mark in the coconut bra......
i should participate more in this group again..i miss the closeness that we had, altho i do talk on the phone with several ladies still........
have a great night.............................
claudia

Hey Claudia,
 

I know you are there if I need you. I was just thinking of you a few minutes ago when I read a joke you sent me. Everyone says you send the best ones. LOL
Sorry about Frank. I do hope he finds the councelling he needs to get through this. It is important.
I think support groups are good to a degree but you have all of the people in the group that have the RSD so it sometimes turns into a pity party. A lot of times too a lot are just not able to make it to the meetings. We tried it here, I did meet several people though and continue to talk to them.
I'm learning that I have to find other things to keep my mind off of the RSD, such as volenteering.
I do realize though that an RSD patient has to get to a certain place in their lives before they can do anything to get their mind off of the pain. They have to have the right medical treatment and councelling. A lot don't seem to find that. Going to different Drs. seem to be something we have to do. I finally quit going to them when I realized I had one right in my back yard, my PCP. The PM's I saw were jokes. Pill pushers, SCS pushers, and anything that benefits their pockets. I feel like people need to find that Dr. that is in it for something besides big money.
Bob I disagree that people lose their meds by talking about suicide. I have seen addicts that are getting meds for their pain. If you have a councellor and Dr. that work together I wouldn't think that would be a problem. I know a lot of people getting councelling and on heavy duty meds in my life. If that feeling gets out there then no one will seek help for their depression. How many lives could be saved if this topic is brought to life to get the help for someone who needs it?

Ada

When I was very young (6 or so) I considered suicide as a rational reaction to a life where everything might go wrong and would necessarilly be followed by death anyway. After weighing the evidence it seemed one must make the decision to live and stick to it. But this monster saps the will and lessens the reasons to go on. First you mourn for the health and life you lost then you have to come to grips with the idea that you might have to reneg on your decision to live.

I've never felt like I was close to ending it all but it's a thought that crosses my mind very frequently.

There are a few ways I deal with this. First I've got a plan A that involves a do-it-yourself "cure" for the disease. This should at least buy me a few months and will be much more difficult than suicide so it moves it away from me. Secondly I try more and more to concentrate on what I can still do. I was very powerful and now one handed, I am in some ways even more powerful. I still have things to do and things to enjoy. I'm still in contact with many of my friends and family. I did not lose "all" of my health, just much of it. One doesn't have to be "tossed upon the rocks" if one swims out of the surf.

Sometimes it's very difficult to enjoy anything and my heart goes out to those whose pain and anguish make it difficult. This condition might not get better but it seems we can learn to control our reaction to it. Perhaps this last doesn't apply to us all equally but where there's life there's hope.

People here are an inspiration to me quite often. If you guys can make it then it should be easy for me.

Hi Ada, as you asked the question; "What I want to ask is what percentage of people with the RSD do you believe thinks about this with what they are going through." Well this is a sensitive but rational question, in my opinion, I think a high percentage if not all at one time or another has this thought ponder in their mind. For me, I have been dealing with this pain for almost ten years, not always severe, but there. I recall a few years ago I told my husband that I really just wanted to die. But really I just wanted to live...just not with the pain, the lifestyle changes, the mental challenges, the family, the treatment plan...etc. It is to say the least a very degrading demoralizing illness that you just can't make peace with. And I still have days where I just want to sleep so I don't have to deal with the pain but unfortunately, I, like everyone else on this board have sleep problems. :eek: But to answer your question, I would never take my own life, I know that. I believe that is not my choice. God knows what I go through on a daily basis and when he chooses for me to not suffer any longer I will go home and that I have made peace with. Who knows maybe we are all part of a greater plan, he chose us for this experience. I have chosen to ride it out with dignity and grace, not anger and frustration (although somedays I have to put myself in check!!) We are so much more than just this illness, we are mothers, wives, sisters, brothers, cousins, unique individuals with an enormous amount of compassion and creative to survive. When I think or hear the word RSD, I think of STRENGTH and LOVE, and those are two qualities that I can live with. God Bless

Jeanie

I so have to agree with Jeanie.. She has said it so eliqently in that our choice in how we care out our days living with RSD is certainly our option but only God should have the right to call us home..and only when the rolladex spins and bam..!! Up comes our number.. that will happen and we will be on our way.. I understand our patience and strength is put to the test with our illness, on a daily basis..no doubt..And do you not agree with me when I say I hate it when someone says..Kath, look around..others have it worse .. no doubt, that is true but it does not help my pain level knowing that...but when the sunsets and we bed ourselves down for another night of sleeplessness.. we still have to be thankful for all that we are and for all that we have.. never to sell ourselves short..as RSD is only part of who I am.. I couldn't imagine not being here and enjoying what I still have..even with RSD...RSD has only enriched life and taught me to realize that life is wonderful and only the simple free stuff is what really matters...my view of my llife now has changed..for the better.. the race is over..now its time to smell the pretty flowers and share a smile with others, (even thru my pain) with others who can't appreciate all that they have...

Bless you all.... for you are stronger than your know...live for today..pray for tomorrow and place yesterday in your memory bank...


Love, Kathy:grouphug:

Hi,
 

I'm up to take Devin to school. He got his first deer with a bow Sat. 2 years ago he got his first one with a gun. Dustin got his first one at 14 too.

Jeanie, I think you are right most do think of it at one time or another with RSD. I know I have and still do at times. I talked to my Dr. Friday evening about it. It's an open book with us. It's just something that when I am at my worst with the pain, it really does cross my mind. I know it does others and some moreso then others.

I just had someone tell me that God had a reason for me being here a few days ago. I haven't figured it out yet. That line is as common as " you look great" with RSD.

As far as sleeping, I finally ask my Dr. for some sleeping meds a few months ago. They seem to help. I do know there is a difference in brands too. Steve gave me the red ones and some white ones last month due to not having enough of the red ones in, the white ones work a lot better. It's a generic form of Ambien.

I've been in councelling for 10 years and it has helped me come a long way. I do think that some people also feel ashamed of the fact that they need it. I know I was glad when Bill started going a few heres before he passed.

If you have lost people in your life to suicide then you do tend to ask about how many people think about it? With or without RSD.

Ada

No, I've thought about it plenty. I don't see how anyone with this nightmare could possibly not look at it as an option.

I too think of this offten. I have lost friends, friends of friends, and friends family to suiside. I could never do it but I do think of it. Being 26 and not able to work full-time on s.s. cant walk very well/long ect...

Suicidal thoughts
 

When the pain is unrelenting and way off the charts, I'd be lying if I didn't say I wished I could just die to stop it. There's also plenty of times where I feel horribly depressed over how this has taken over my life. What keeps me going is my 3 wonderful children and a fiancee who is an absolute angel, of course that's a point of depression to as I feel he deserves more.

I would talk about it with a psychologist but the last one I met just wanted me to use imagery to make my pain go away as she decided it was all emotional and with no physical basis. :(

I doubt anyone who has these thoughts is alone and I tend to think it would be more of a rarity if someone with this nightmare of a disease did not have those thoughts at times.

Hi,
 

I knew I wasn't alone in this. Today has been one of the worst days I have had in a long time. I have had to take extra Methadone to try and calm the pain today. I am going to try and get in to see my Dr. tomorrow for some triggerpoint injections.

It is very hard to keep your head on straight with the RSD pain when it is at it's worse. I am hoping this is just a flare from the barometer change and not what my whole winter is going to be like.

I saw my Dr. Monday and he sat with me for over an hour just listening to me and trying to help me cope with the RSD and feeling alone in this mess. Because we look normal people think there is nothing wrong with us. We don't have to be alone to feel alone.

Ada

Ada - You're definitely not alone. I feared all day that I would wind up in the ER tonight, unable to control the pain again.

I think I was able to hold it off by taking my meds closer together and employing every pain management technique I can think of.

What I always try to remind myself of when the pain is at it's worst is that tomorrow could be so much better, you just never know. My 3 children are what keeps me going more then anything tho at times I do feel like they and everyone else I love would be so much better off without me. As grateful as I am for the love and support all of my family shows me, I hate that I have become such a burden to them at times.

I hope the evening has brought you some relief.

Dawn

Trigger Point Injections
 

Ada -

I noticed you mentioned trigger point injections. I was receiving them in my left side and thought they may have been what sped up the spreading of my RSD.

The injections did not really seem to help me but actually increased my pain which was when I began to seriously question my diagnosis of myofascial pain syndrome. I then also tried acupuncture which again seemed to make things worse.

I'm curious how long you have been receiving the injections and if you think they help.

Dawn

Hi Dawn
 

I wouldn't try the accupuncture when it was brought up to me. That didn't sound good to me. Too many needles.

I got the tpi's at the U of Denver Hospital back in 91 in my stomach. I was just a guienna pig to them. They never diagnosed me

My PCP started doing them in around 2000. I got him Dr. Hooshmands book for Christmas and it talks about tpi's as one of the treatments of RSD. He doesn't use a big needle though like the Hospital did. He uses Lidocaine, no streroids. They do work for me. Sometimes it takes 2 or 3 rounds to do the job. They can help for months too.

When he first started doing them, we did them weekly. Now it's only when I need them. It's time consuming. I think it's why Drs. don't want to do them. It's not like getting 3 steroid shots a year.

I also spent 4 years in PT. That helped a lot too. It helped get me moving again.

I was so bad off by the time we started the injections, I know they didn't make my RSD spread. Had he not been determined to keep me alive I wouldn't have made it. I'm glad he was sure of himself enough to do what he felt would get me better. I have seen too many Drs. that wouldn't try to do anything to help.

How long did you have the tpi's Dawn? It's just like blocks to me, I think a series is better then just one. It gets more meds into you and has a better chance of calming things down.

Ada

truth
 

There are alot of people who do think of this, and probably more often than is admitted on PC. It is a hard subject to bring up, even with your doctors. I have been releived with some of my pain due to a wonderful surgery I just had. The truth is, I did think of suicide often during the cloud of my pain. Humans can only stand so much. I did reach out. I joined final exit 6 years ago, and will remain a member for the rest of my life. I have alot of life left in me, but when the time comes that I have no quality of life, I will again re-visit choices all humas have. The right to decide for themselves what is right and wrong for them. I do have a phych, that I do talk to, thank God I have him in my corner. He does not think I am crazy at all, nor depressed. I also have faith and pray often. This subject is taboo for most, so forgive me if I offend anyone, that is not my intention. I promote life, but for me personally, I want a choice when I have no quality of life. Please do get council, keep close to your friends and family if you can. Reach out to get help with all your medical problems, and your inner feelings. I will continue to do that for myself too. I will also live each and every day fully.

The way to combat these feelings
 

Anyone who hasn't thought about how great it would be to get away from the pain once and for all is denying the truth, but from my point of view there is something we can do that really works so our brains don't head down this wrong way street.

Instead of allowing your head to focus on the negativity of life, you simply have to do anything and everything to really reevaluate the positive - and trust me, we've go a whole lot more of that than we think.

For all of those who think it can't get any worse, then maybe now's the time turn on the TV and take a lot closer look at how the rest of the world lives. For example there are 2.4 to 2.6 billion people who don't even use or have a toilet (by the way there's only 6 billion on this whole earth). Things like hot showers and a roof over our heads that includes such luxuries such windows, heating and cooling and a refrigerator are unheard of in so many areas. Meanwhile we think nothing of it.

By staying focused on the good we have in life, we then shove out the bad.

One last thing: The easiest way to move out those thoughts of just checking out is by getting our head out of "how I'm doing" and instead start looking at how we can do something for someone else instead. There's nothing that can heal the heart faster than through the selfless acts of kindness for another human being. I don't care how handicapped a person is, there's ALWAYS something we can do for someone else if we really want to bad enough. As we're focusing on others our minds quickly fade away from our trivial little problems of the day, and yes most of them really are trivial when you compare what it would be like without our health care and social system that at least is trying to help us day to day. Meanwhile we get a dose of inner joy because we hopefully made at least a little difference in someone else's life.

Suicide doesn't make sense. Self deliverance does, but there's a million miles between the two. Suicide is an act of selfish "I'm unhappy and I don't like the way things turned out." Self deliverance is when a person is gasping for breath with ALS and they're tired of not being able to breath because those muscles don't work anymore.

Life really isn't half as bad as we make it out to be. Now of course all it takes it the smarts to realize it. Meanwhile this old gimp with all sorts of implants and missing body parts is off to figure out what I'm going to do next so I can keep myself from staying focused on myself for the rest of the day. Personally I can't think of a more boring topic. Meanwhile I know that I'd love to learn more about someone else. How about you?:winky:

I bring it up probably once a week. I have mentioned it to my therapist and he said"what else are you going to do?" implying that the pain is so bad that planning my death is about all that is in my control to stop my pain. I have gotten a great life insurance policy and I am constantly thinking of the best way to end my hell without loosing my insurance. I need my children to get my insurance money, I am a single mother and all they have. So I continue to live, work as much as I can, take a bunch of pills-shots-accupunture anything that will help, and plan for the best way to end this hell. I'm sure that almost everyone with RSD (well if it's as bad as mine) has felt this way atleast some of the time. The only thing I can really do is take one day at a time....today I'm pretty good, today there are no plans :)

Hi,
 

Bob, you do have a point. There are people who are worse off then we are. I think of people fighting cancer when I think of people worse off. There are also people who have other debilitating diseases that make them worse off.

What we are dealing with though is that our illness isn't being acknowledged like others to the point that we are getting what we need to get through the worst times. Cancer patients have chemo, radiation and cancer is very acknowledged and the patients get as much help as they can to get through whatever part of it they are going through.

The scale shows RSD pain is higher then most pains out there. The weather has changed here and has thrown me into a tizzy. We lay in bed at night when our pain is the only thing we can think of laying there and trying to get it to calm down to a point to where we can sleep and not go nuts from it or commit suicide from the pain. I took Methadone last night and finally got to sleep with my sleeping med. I was still in pain this morning and I called Diana and we chatted and talked for quite awhile. I think when we are at our worst we do have to reach out to someone to help us get our mind off of it.

I keep busy and it still doesn't help when I am in my worst pain so I know others have to be the same way.

Knowing that others are worse off then me is one reason that i don't go out and scream, what the hell part of this do people not get, I'm in pain. So I scream it inside. It's not an easy feat for us to bite our tongues and see how much worse others are. I'll admit I have trouble doing it.

I have God in my corner too but he's leaving an awlfully lot up to me. Strength is not always one of my better virtues.

Ada

Just..
 

to mention a few little diddys...'Life is what you make of it'..oh how about..'what doesn't kill us makes us stronger'.. and 'it's not about the cards you have been dealt..it's about how you play them is what matters'!

I am such a fan of helping my heart feel better, just as Bobinjeffmo said.. share whats in your heart..As painful and debillating as it is..reach out to others and share a smile.. this could make someone elses day.. sure as heck my heart is on the floor.. this does my heart good..I can feel it when my heart is heading for the floor..We all hate that feeling eh'?? Well it does take alot of will and drive to counterbalance that feeling by doing something nice for some one else..ultimately, I always feel better..It could be as little as holding the door open for someone..share a smile or say you look nice.. We do have our days..we will have our days..days of sadness and feeling jipped but where is that going for us?? Dig deep..past our sad feelings and reach out to others...because it really is about dealing with the cards we have been dealt..personally, I have learned so much about myself since RSD has entered my life..good things, that I would not want to trade for anything in the world..One of which is each and everyone of you reading this post!!

Bless you all and much love, Kathy:grouphug::grouphug: