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.

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.........

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

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

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.

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.