Hello all, i hope this finds everyone well. I haven't been online in a long time. Everything here has gone unbelievably hectic.
I wanted to get some opinions if I may. As alot of you know, my fiance', Reed has RSD due to a crush injury to his left leg from the knee down.
He has an SCS, and has been on several different meds. He's in PT now, which doesn't seem to be doing much, but isn't hurting either I suppose.
Reed is about to see a psych. due to his depression , anxiety, mood swings... oh my.
Over the last couple of months, realizing that he will never have back the exact life he had before has really taken it's toll on him. At first, he was dealing pretty well, I thought. But it seems that the longer this all goes on (now we are trying to find a new attorney also, because the first one was ..well, crap) he is less and less able to deal with things.
He is more depressed, not suicidal, but literally hates himself and says he can't figure out why I don't hate him also. He seems to hate everyone else as well. He is separating himself from the world more and more, and is anxious and so very moody.
I know a large part of it is pain, but I really think the majority is the thought of "losing his life". I don't know what to do. I can't really help him, and when I try to talk to him, he either gets more down, or it lights his fuse and he ends up angry. I try to just deal with it and keep him happy, but it seems that nothing the kids and I do is good enough. Sometimes I really think he looks for reasons to explode. He's either angry, or crying. I am so worried!
I took him to our family doc (he doesn't have insurance, only wc) and the doc put him on zoloft. That seemed to help for awhile, but it's a low dose, and I guess he started building immunity to it.
Finally, his pm doc has gotten wc to approve a visit to to a psych. He's finally convinced them that Reed is suffering emotionally and mentally due to this accident and the big bully RSD.
I'm praying that the psych can figure out something, and can help him. In the meantime, I'm also praying that the rest of us can get some peace as well. I can't imagine how hard this is for him, and I really truly only want the best for him. I love him so much! But he doesn't know how hard it is for me.. and for the kids.
Has anyone else dealt with these symptoms, and how in the world do you deal with it? Any ideas on what I can do to help??
Any input is greatly appreciated. Thanks and hugs to you all!

I went into a deep depression after RSD to the point of being suicidal.

I have been in councelling for 10 years and am happy I have my councellor to talk to.

I think it's the best thing he can do is to go into councelling as most of us do have depression with RSD.

I was anxious, depressed, angry, frustrated. I took it out on Bill, sometimes my two grandson's.

I stayed in the house for years, Bill did all of my shopping and picking up my meds.

We use to be really active. We did everything together but I lost all of that with RSD.

After losing Bill I had to pull myself up and do some things for myself.

I was just getting to the point that I could do things with him again about a year before he passed away.

Bill spent time in councelling also to help him deal with his disabilities and dealing with me. I was a mess for years. It about drove him nuts and he was sick also.

I do know what he is going through and I do hope that he keeps at the councelling. I can talk to my Councellor about things that I can't talk to family about and he says I can take my anger out on him and then be good to the family. It worked and now I don't take it out on him either. Finally got there.

I am also pretty much in remission and that makes a difference also.

Hopefully your guy will get there and then you will all have peace and become a quite family. Give it time.

Take care,
Ada

Hi Rita and Reed,
I'm glad you checked in with us. I remember you and Reed from your posts. Always enjoyed reading them. There are so many emotions and life changing events with RSD. Not just with us, but many people, don't feel comfortable being around someone in pain, or something they don't understand. That's their issues.

I've been seeing a wonderful psychiatrist, Neurologist, and Pharmacologist 3in1 for about 5 years now. Knowledge about RSD, and he has been wonderful. My husband and daughter have been once. Our daughter 29, understands a lot. She and my husband have both done research, plus she is a court reporter and done depositions on RSD for prerial. I had been in coundseling once before when I was 30-my parents died, mother was 46-cancer and I cared for her and we sued the incompetent Dr. Won 100% Cared for my Dad, he was hearbroken and died too.
If you look at RSD as a major loss and completely changing your life, feelings, abilities, moods, memory problems, because it affects the limbic part of the brain,depression. Especially a man, has lost control of his life, ability to provide, All of us miss all the things we loved to do with our families. We used to travel, play tennis, water ski, snow ski, bike, hike you name it. I tend to hole up in my office. It has a day bed, tv, music, desk, laptop, printer, . I just like to be alone, then I don't have any pressure on me. I had appointments, because, you never know how you are going to feel. Never morning appointments, can't sleep half the night. The lack of sleep really affects how we feel the next day. Being on the right meds are so important.
One thing that helped me while going through major grief with my parents and in counseling was keeping a journal. I still journal some days. I can totally put down my feelings, cry, without anyone seeing what's writtin, my guilt, emotional pain, and then put it in the shredder if I want.
Most hospitals offer grief seminars. You can call the education department and get a schedule. That really helped me. Also in the self-help section of book store have books to help us look at life differently-grateful, positive, joy of helping others. reading motivational books of ones that have overcome negative emotions. One book I loved was You can't afford the thought of a negative feeling. It was so good for me. I love flowers in my room, lavender candles, music, massages, nice ones now, not like the torture chambers I went thru at the beginning,strapped down. Have you been desensitized? That is truly a blessing to get past that. Love to write cards-e-mail all friends. We moved from Oregon to Arizona so our daughter could go to this specialized school. We just stayed here and love it. We have friends come and visit every year. They know my limitations, and do all the cooking, and I help clean up. I sleep in, and they go on walks, It's so wonderful, we had two couples last month and one couple next month. We turned down 3 couples, We just weren't that close, and it would have been a hardship on me. In fact the couple coming next month, she is a counselor and he a neuclear med tech. Both couple come every year.
It sounds like you needed to get rid of first WC attorney. Hope you like the next one. I certainly would want the medical portion open-ended. so expensie disorder, meds and treatment.
It was eight years into RSD when I found my current Dr. One thing that really helped me was an anti-anxiety med Lorazepam mg 3xday, Cymbalta is one of the newer anti-depressants I started on a year ago. Worked up to 240 mg. a day. It works very well on nerve pain and fibromyalgia. I was able to go of two double dosed other antii-depressants. I take a sleeping pill, two blook pressure bills double dosed, and Vicodin 2@3xday. I was onNeurotin and thenLyrica, but wanted to go off and have been off now for 6 months. Have lost 30 lbs. xtra weigh it put onme. That was depressing, as I was such into sports. After another 30 lbs. Dr. and I hope I can cup back on blood pressure meds. I've been using natural supplements etc. My Dr. also teaches, and just part time with pain management and psych. It's really a long process, with set backs. Did you see Larry King Live with Michael J Fox with his MS. He has just written a book. Always looking Up, I'm going to get it. He was down for a long time after his diagnosis.

Do you have a pain management Dr.? They seem to be the best ones to management RSD complexities. I attended the annual national RSDSA convention here in Scottsdale about 3 weeks ago. Friday was for us, we had 135 a Sat. was for Drs. pt's etc. It was excellent. They videotaped it and will be for sale soon thru RSDSA. They fully supported a structured med program. Ther were about 4-5 Drs. and Scientist.
You are welcome to PM me anytime. If there is anything I can say that would help, I'm more than willing. I have my ups and downs. Been going thru a flare last few days, but today is better. I've got to get my laptop fixed, as I do better laying in bed writing than sitting in a chair typing. Hang in there, and please know we all care about you here on Neurotalk, Loretta

Thank you both for answering. I really do try so hard to understand, and do as much as i can to help Reed, but trying at the same to time to help him keep what he has left of his self sufficiency. Geeez what a job!
Reed does have a pain management doc, and he's really great. Even WC said they've never dealt with a doc that is so involved and thorough. (They don't know how he bad mouths wc at every visit lol) I do have to say though, that I've heard and read some real horror stories on wc, and apparently, Reed has a very good company in comparison. They have yet to deny anything his doc has recommended.
Now, both of you have talked about depression, and anxiety. Did you both suffer with severe mood swings and alot of anger? Sometimes, it's hard for me to see depression in Reed because of all the anger. He truly hates the world, and doesn't mind telling it. He can be so mean sometimes, and he regrets the things he says later, but at the time, he really feels justified. I realize that it's part of depression, but have mercy.. this is killing me! I love him, and I would never leave his side, but sometimes I feel like running away for a few days. I have to admit, I've even had some evil thoughts like "if I took off on vacation for a week, you'd realize how much I really do for you and then what would you do?!" Not that I would do that.. not that we have the MONEY to do that..lol but this is affecting us all, and I am really hoping and praying for some help. I know things will never be the same, but I just want my smiling, happy Reed back. I just want him to find his smile again. And now, here I sit, crying. lol What a sap I am. And i'm rambling.. so thank you all for the support. You are really a comfort, and I am so glad to have found this forum!

I suffered from mood swings and anger. It's like you become a 1000 sticks of dynamite that keeps going off one at a time. All Bill had to do is look at me wrong and I'd explode. I think it was from the pain. The pain is so unbearable and when you can't get the Drs. to understand the extent of it then it makes it worse.

I too have a great Dr. He's been with me through 18 years of everything along with the RSD. He also councels me and does my PM. I couldn't find a good PM around here.

It takes time to get back to where a person gets the pain down and gets some kind of a grip on what they are dealing with and can finally deal with it some.

If he starts councelling and keeps going then you will see a change in him if the councellor is any good. Some aren't. If the first one isn't any good then keep looking until he finds one that he likes.

There were times I wanted to run away from Bill and I was the one with the RSD. He was disabled also though and it was so hard for us. He pulled himself back up to take care of me for about 8 years until I got better.

It's a long road but you can both get there.

Hang in.

Ada

Hi Rita,

I understand your frustration that your post communicates. I have been seeing a psychologist for depression,anxiety, and grief counseling, for over a year(every 2 weeks). The grief counseling is for the loss of my active self since RSD/CRPS I became a part of my life(3/24/07;diagnosed 6/08).

Also, I take Cymbalta( 180 mg) for the depression, xanex for the anxeity, and a multitude of other meds for the RSD. Some RSD patients need these type of meds to keep the world in focus; I am one of them.

The change that takes place once an individual has RSD, is mind blowing. You and Reed know this to be true. Reed's outburst reflect the "Change", and it is hard on everyone in the family. Please make time just for yourself and the children. You need to be able to "chill" to be able to absorb the RSD's byproducts that affect/effect Reed.

You have friend's here..reach out, and we will hold your hand, answer questions, and listen to your concerns.


Dew

Hi Rita!

Sounds like you have your hands full

A lot of the things you were telling us about Reed could be said of me LOL. For me the change was too abrupt, in one single day everything I knew was turned upside down. Then as I tried to reassemble some kind of normal for myself I ran into one brick wall after another.

I then realized that to get passed these walls were going to be much harder in the condition I am in now than it was when I was healthy. Used to be I could overcome obstacles with shear will power. Not the case now, and will probably never be that way again.

So these things, and fear began to erode me. Then I started thinking about how unfair it is to my wife and family. I even told my wife on numerous occasions that she could leave anytime she wanted, because in my eyes she didnt sign on for any of this.

Something she did totally disarmed me, and caused me to think before I spoke when I would run up against one of my new limitations. She said she would stick with me no matter how bad it got, and told me that if I needed to vent she would listen without judging me. That was one of my major fears, that because of what happened to me she would stop loving me, or leave me.

She kept on reassuring me that she was there for me, and was going nowhere. It took a while for me to process this information and realize she was telling me the truth. From the time I realized she was by my side through anything, I knew I could face it all with her by my side. It was so reassuring, it gave me a renewed vision of where I fit in this now upside down world.

Sure I still have my moments, but I will tell you that I try my best to not take out any of my troubles dealing with this awful RSD on her or any of my family. I now venture outside, and visit with friends and family.....things I avoided at all costs for a few years there.

I think it would be a tremendous help to him if you are able to articulate exactly how you stand on the issue of him and his now disabilities. Once he realizes you are firmly in his corner no matter what, will create some comfort from a fear that I know he is wrestling with. It will give him some confidence to take on other things that limit him. Just knowing that he will not lose what he loves most is like having a rock under you.

I will be keeping you two in my prayers

Thank you all so much. Allen, you give some really good advice, and I think I may need to try harder to let him know that I am in for the "long haul". I've spent alot of time avoiding his rants lately lol.
On the flipside, we saw the new attorney today, and he knew a tremendous amount about RSD..I was impressed. He also told Reed to file for disability now (which should have been recommended by the last attorney but wasn't). So hopefully, we are finally going in a good direction.
PT is nearly over, and Reed's most likely going to have to be fitted for a permanent brace on hid RSD leg. There is so much damage, on top of the RSD that the pressure needs to be removed from the ankle and heel. WC says once that is done, they will ask for MMI eval. and settle. I'm not sure if that's good or bad, but I think at this point Reed is just ready to be done with WC and get on with life, even though right now he feels like he has no life.
Again, thank you all so much, and maybe I can start checking in more often here. Reed seems to be sleeping alot lately. Hugs to you all!

Well, to update, we had a busy day last Wednesday. Reed saw his pm doc, the psychologist, and the ortho/prosthetic doc. I'll try to keep it short, but we got alot of info.
Pm doc said PT wasn't the best idea at the moment ( mostly because Reed said he couldn't tell it was helping and his pain was worse.) PM also said that Reed needs to have an offloading brace..looks like a prosthetic leg made. The PM doc, who we normally love, was in a "mood" apparently, and wasn't happy that in his opinion, Reed was giving up on furthering his education right now. Long story.. PM told Reed that the brace was the only option to relieve some pain.. short of amputation! Needless to say, that little blurb shocked me..but I think that was the point. He doesn't seem to understand that Reed's body, NOR his state of mind is in the right place for school right now. Grrrrrrr
Next we saw the psychologist. He was very nice.. told Reed that he isn't crazy which was a relief, as he was beginning to think he was losing it. Psych suggested that Reed's dosage of Zoloft needs to be raised, and so far, it's really helping.
Next we saw the prosthetic guys, and had the mould made for Reed's brace. The people there were great. They took time to talk to Reed, and eased his mind about PT. ( PM was making him feel guilty about it) The prosthetic guy said that with the sort of damage Reed has, he feels that PT could actually hurt more than help. He also said that he think Reed's a good candidate for "graduating" to a less cumbersome brace after some time.
Overall it was a good day.. getting some things accomplished. I'm just still upset with the PM doc. I can understand having a grump day.. Good Lord, Reed has them constantly, but to tell someone they would be better off having their leg chopped off.. to me was just unprofessional.
Anyhoo.. sorry for the long "short version" and I hope everyone is having a good pain free day! Hugs to all!

Thank you for the update. It takes a team of specialist to assist an RSD patient, and you and Reed now have a team! Things should be better and I hope everyone in your family feels the positive changes in the works.

Dew