Counseling for RSD
 

I have finally decided to go ahead and get counseling to help me deal with the RSD. I had felt that I have been dealing with everything fine, and have been able to work through it, but am feeling real down and really worn out from dealing with this lately. Perhaps it's because I am in a bad spell, but either way I have made a decision which will hopefully be in the best interest of my well being. I feel like I need to get counseling, and hope to avoid full blown depression.

I was wondering if any counselor would do or if it is very important to see one who works with pain. I don't know how I'd find one who knows RSD specifically, but I am sure I could find someone who works with pain.

Any thoughts?

Also, I am looking for input from those who've received counseling, and wondering what you felt was the best thing that came from getting it, and why you think it is important in treating RSD.

Looking for a frank open discussion.

Thanks! :grouphug:

Counseling
 

is a great idea if you find the right person. Because I had PTSD and RSD I was an emotional mess!! The first counselor I went to was not a good fit,was not understanding of my pain- either phyical or mental. Because I did not know I had RSD I sought out a counselor that had knowlege of PTSD and how to treat it. She also understood pain, told me almost anyone in pain is depressed. When I found out I had RSD she spent a lot of time looking up professional information so she could better help me with it, as well as the PTSD. She helped me to understand that it is OK to tell people not to touch me when I am having a bad day. Also that I am having a bad day, please not to take it personal. I am not the person I was before my accident and am still trying to find out who I am:eek: At least I know I am not crazy, so will not have to worry about how to pay for that padded room!!:D Good Luck in finding that special person that fits your needs.:hug: Carose

Your PM doc should be able to help you find a therapist or help you look in the right direction for one.

[COLOR="Blue"] Hi.. had to respond to this pain or not :D Hey sweetie, I too am going to see a therapist, am armed with all kinds of liturature on RSD . my app. is this July. I am just going to "get it all out"! I need to rant, and see a good therapist face to face. At this place where I am going, if I don't like or feel like I am being helped as I should, I can see another therapist.(same place) take care, sweetie.. all will work out for you, yo will see! :hug: Desi] P.S. I was asked if I wanted to see a female or male Dr. (I said a female) I feel more comfortable with a female, maybe you would too??):)

Hi Vanessa,
 

I think it's the best thing you could do for yourself.

Like the others said, you might not get the right on on the first try but don't let that get you down either.

I actually went to 2 before my PCP said he'd just take over doing my councelling. He's helped many with suicidal issues. He was taking care of a 12 year old boy with suicidal issues when I became a thorn in his side. He has councelled me for over 8 years. He saw how bad off I was and it scared him so bad, he jumped in and took over. He councelled Bill for the last year or so before he passed. Bill just loved him.

You will find a councellor that will help you through the pain and the mental issues. It just takes time.

The first one I had was worse off then me in some departments. She was going through a divorce and she proceeded to tell me her life story and you soon realize also that some can have book smart but no common sense. You want someone that has both.

You are very young and although you are very smart and have a lot of common sense you have enough to know that you can't get through this alone and that's good.

They will help you get through any bad past you have had, help you to understand what you are going through now and help you deal with things in the future that you can't deal with.

It's great to have someone you can talk to and you know they are not going to tell anyone else what is going on with you. You also can get input on each issue you run up on that you don't know how to handle along the way.

Good luck with finding that right one and don't give up.

Ada

it is great to see people share on what some may feel is a delicate subject.
i saw a therapist a few years ago, and then thought i could handle it on my own. i was wrong. i am back with the same person who works with several chronic pain people. i had quite a bit of trauma as a child also and so those issues have come up. she said when a person is in pain everyday, that person often needs to go back and heal other wounds. it is as if there is no more space left inside the heart for any more pain, and you have to purge it. i think it is true because i am so much better. those of us with rsd are dealing with a grieving process. we have lost so much and we cannot ever get it back. i have used antidepressants but the therapy is much better.
also don't give up on a therapist too quickly, sometimes they are getting to a nerve and you may feel like not going back but it is then that you need to go most. good luck. joan

Good Luck
 

Hello--
Just a thought on where you might go to find a good therapist. My daughter has been with a couple of different people. The connection we made with a person who worked with pediatrics in the oncology area. She seemed to understand the hugeness of chronic pain and children. It was a different area than RSD but was probably the closest the clinic could get for pediatrics. This last therapist she is seeing is a psychologist(not just for pediatrics) rather than a psychiatrist. I am sure there are technical differences, but it was based more on personality for us.

"Great Post, Joan... Thank you! I needed to hear this!! Love, Desi:Bow: :Thank you: :Heart:

Hi Everyone,

I thought I would let everyone know what has helped me.

I went to see a very good physical therapist recently. She was very good because she brought to my attention my body language that I have developed since being in pain.

She talked about deep breathing - and sort of meditating for a few minutes. I have found that this does help with pain. I do this twice-three times a day. Just closing my eyes - I have downloaded relaxation music on my ipod and just relaxing my shoulders, jaw (I was clenching my jaw because I was in so much pain), everything...

I have unconsciously altered my posture because I'm in pain. I have RSD mostly on my left arm - left side. I lean to my right when I sit - either I put weight on my right arm or I lean to the right - as to try to lean away from the pain. Just by being conscious of my body posture it has helped. It doesn't take the pain away by any means; if nothing else, it calms my nerves if for a few minutes...

I try to do this religiously. I'm working full-time still so I have an alarm on my computer to remind me to do this 2-3 times a day.

Hope this helps.

hi desi and all, i am always open for a frank talk. i tend to be very direct and open. i do hope people will go if they feel they need to talk. our families do not get it and are too close to the problem to really help and we can lose friends if we get too deep into out pain with them. we become very heavy and dark to them. so please get a good counselor. there is no stigma attached. i love my therapist and now that i have my grandson living with me she treats him also, and she is a great help to us all. so call and go and also i also do relaxation techiques. i love the idea of the alarm at work. i no longer can work but even at home you can get distracted and forget to take time for yourself.
great thread ..... joan

Hi dealingwithtos,
 

When you talk about the posture problem that goes with the TOS. I think DiMarie had said something about that in one of our post about her shoulders being up to her ears. Well so are mine. My Dr. has pushed mine down several times to try and teach me how to keep them down.

Also he has taught me the meditation and prayer and that does help.

I really don't know if the posture thing goes with the RSD as well as the TOS.
I don't know if Inhishands has the TOS or not.

Like you though, my posture is so bad and I go to therapy and get straightened up and then I get back into the same shape.

I do know that meditation and prayer helps but I believe councelling is a must when people are going through as much as some of us do.

Start looking for that good councellor girl. Good luck too.

Love,
Ada

Hey Vanessa.

I recently started therapy (2 weeks ago). I really didnt want to go because I felt I could handle it on my own. But its important to make sure that the person you go to is nice, easy to talk to, and knowlegable. And make sure you have a say so in who you talk to. I am highly considering getting a different therapist. She was nice, but she looked a little intimidating and just wasnt quite easy for me to talk to. And her specialty is eating disorders (why I have her, I dunno) and you can kinda tell when she talks but she had never heard about rsd and didnt mention pain management. She thought I might be depressed when that was just a bad week with rsd for me and because it was like 8 or 9 in the morning and I'm not a morning person (mom was like 0.o with depression).

But she really isn't helping me with the rsd. She is only talking about issues I'm over now and are learned to accept and just move on when my parents divorced 2 years ago and I am just tired of talking about that because I'm over that and it really shook me up initially when it happened. But I don't think she mentioned rsd more than once or twice. But what really made me a little upset was that my parents secretly talked and scheduled me to see her and then I didnt have a say so in who I talked to. But it is important to have someone that understands and can help. Hope you find a good therapist.

Nikki

Hey Nikki

Are you doing abit better?

Quick question- surely you are supposed to lead therapy? the therapist shouldn't be "choosing" what is important to you to talk about!!?! If you want (and need) to talk about RSD and how it is affecting you then it is very important to do that - and that is what she is being paid for, to help you deal with now. Not years ago.

IHH - I have seen both. It depends what you are looking for from therapy, in my case I wanted to have some help dealing with the changes the RSD and pain have bought into my life, and assistance for not only dealing with severe long term disability and how it affected my family and I but also wanted to look at psychological methods of pain control and disease management, such as relaxation, meditation, pacing etc. I personally found that without accepting the RSD and it's problems I found it very hard to move on to a place where I could go forward - but that's just me. I am an ostrich at heart who would love to stick my head in the sand and ignore horrible situations!

.....But, I digress. If currently you feel that you need someone to just rant at and to work out the frustration and the unfairness, and how your life has changed then I personally don't see why the counsellor should be specialised in pain.

....As long as they are willing to learn about what RSD is, and accept it as a disease entity that has severely impacted your quality of life and is willing to offer empathy, a listening ear and NO PITY then they would probaly be great. I have been helped far more by people like that, who listen, agree that life is tough, let you talk about it without making you feel guilty for being self centred than by specialist pain psychologists.

Have you considered someone like your pastor? or his wife? I imagine it would be less stressful to see someone close to you (geographically) and who understands your culture.

Anyway, you know where I am if you want to natter about it! and I now REALLY have to go because otherwise this stupid pain is *"£%"

Love ya tons

Frogga xxxxxxxxxxxxxxx

Hey Ada,

I don't have TOS. I have a dx of RSD and then migraines and some type of movement disorder. But I am bad with posture- I have to make sure I make the effort to keep my posture nice so as not to deal with more problems!

Thanks Ada! :hug: I appreciated all your input!

Thanks for all the input, girlie! :hug:

Yes, I was considering my pastor's wife. They do counseling, but I don't think they deal with chronic pain, but they still could be of help; or recommend another counselor.

Thanks! I know you are always here for me! That means a ton to me, too! And you know that! :hug: :hug: You've helped me get through a lot! Love ya!! :hug: :hug:

YES! I definitely think I'd prefer a female too, Desi!

Thanks! :hug:

Hey IHH!!!!!
 

I'll Counsel you!! For Free!! Ya Right! :D Heck I need to go back myself. I haven't even totally accepted the fact yet that I even have RSD/CRPS, let alone tell anyone else how to deal with it. Yes that is right. Strange as it may sound. I am in big denial. I am the first to admit. I DO NOT WANT RSD AND AS FAR AS I AM CONCERNED I AM NO WHERE AS BAD OFF AS OTHERS!!!

Did I just say that out loud??? Well that is how I think most of the time. Shame on me maybe but it is true. Embarrassed to have RSD I don't know Angry yes! I definitely feel JILTED at my age. 43 is way to young to be left half the person I was just a few years ago.

WAAA WAAA WAAA!! Some of you are probably thinking I'm just feeling sorry for myself but I get to once in a while. But as far as RSD/CRPS goes I truly am in denial and I will be going back to my therapist very soon to put things back into perspective. I too grind my teeth fiercely all the time in pain and that as you all know is causing me issues.

I have a good counselor, a lady who understands me. I shopped around for a while until I found her. She is a pain management specialist. But she is also someone who understands the mind, body and soul. And like somone else here I have demons from my past that have crept up and reared there ugly little heads and I now I must deal with them too. Oh joy!!! Mental pain is physical pain too. I wish you the best I send ya a huge hug and I tell you as I always tell everyone -

Chin Up!!!! :D :D Mark :)

I dont think you can go wrong here. Sometimes I think the depression is more devasting in that the mind games make everything worse. Keep us posted on how this goes, the good and the bad, if there is bad lol.

I was wondering how the Lyrica is workin? Are you still taking that?

This is a great post, and Ive learned alot from reading the responses. I also have some of the same problems, like grinding the teeth and clenching. Every so often I realize every muscle in my body is so tight that I have to make a real effort to loosen up. I liked the alarm idea, think im gonna try that one. Set it for every couple hours to remind me to loosen up.

Check this out
http://www.sermonspice.com/videos/114/that-s-my-king-

:winky:

Love ya much :hug:

Allen,

I definitely think that the lyrica is working- especially for the allodynia. I've still been having a rough time. I think lyrica has been most helpful out of all of the meds that I take regularly. Have you tried it?? It is newer than neurontin, but just like it... I think it's better than neurontin, as I take both. I think it works well as a mood stabilizer too- like the anti depressants.

I sure know about tense muscles!! I'll be in bed and realize I am stiff and like a log, not relaxed and flopped there. I have been practicing with the muscle tenseness.

Thanks! :hug: TY for the site too! :D

Hi IHH,
 

I am glad you don't have the TOS. That to me is just as bad as the RSD.
As far as posture, we probably do have some bad posture from doubling over with pain.

Mark, What I noticed is when I was at my worst that's when my past came out. I had things that happened to me when I was younger that just came flooding out when I first got injured. I couldn't understand that part, what that had to do with the pain, I actually think it all made my pain worse.

I spent over 5 years dealing with my past in therapy. It took me that long to get past the nightmares and fear. I am past it now and it hardly ever comes back to haunt me so the councelling had worked for me.

Unfortunetly, now I am dealing with the loss of Bill and more medical problems. If I weren't in councelling I wouldn't get trough it on my own. I realize that. I think you have to realize it to be able to say ok I need help.

Thankfully that is what Vanessa is doing. Now that she knows she needs the help, she will see a difference in months to come with it.

Mark, I think we all go through the I feel sorry for myself every once in awhile with this.

Allen, I wake up every couple of hours anyway, I don't need an alarm to tell me I need to relax and loosen up. LOL

This is a good thread, it lets everyone here know that we are not alone in the need of help with this nightmare.

Something else I wanted to ask that goes with this is if any of you have panic attacks. I have had them for years and they had calmed down but I started having them again around March.
That's when my breathing problems get worse.

Ada

OMG! Panic Attacks!
 

I started getting those last year, but thought I was having heart attacks. Went for a ride in the ambulance one day cause I couldnt even talk it was sooo bad.

They gave me ativan for them, and it worked great! Since January I havent had any medical insurance so I dont have all the wonderful meds anymore :(
I have noticed that the panic attacks are getting worse for me, even coming on when im trying to go to sleep. They worry me quite a bit still cause I cant tell if it is the panic attack, or if it is heart attack. Then that makes it worse, and I realize it must be a panic attack.

Maybe someday the SSI will come through, and I can get a doctor, and meds back into my life.

Yeah I need the alarm all day just to remind me to concentrate on loosening up LOL. The tense thing makes the pain worse too.

:grouphug:

Hi Allen,
 

Mine have gotten worse also In March the panic attacks started, it might be because of my decision to move out of my home with Bill In April after I moved in here I ended up going to the ER before I had the VNS put in. I knew though that I wasn't having a Panic attack that night. I ended up having a heart attack and it might have been from the stress from the panic attacks and what I was going through.

I have sense had quite a few panic attacks. I had one tonight. I had a Drs. appt. and we discussed my sleep apnea test and then we talked about the 4th of July and what each of us were going to do. I was fine until I got home and then it hit me. On my computer desk we have pictures from the last 4th of July with Bill. On's of me and Bill, one with Bill with each of the boys and one of all four of us, one of all 6 of us, then some of Bill with each of the men that I call our adopted kids. I just went into a major one and was crying and panicing so bad that I will dealing with all of the symptoms. I called my Dr. and he talked to me about what I should and shouldn't do. At this point I don't know if I can go to the picnic that the kids are having out at our place Wed night. The memories just came flooding back and I haven't been able to get to sleep yet. I have to get some rest though for a Drs. appt. tomorrow morning or I won't make it to it.

I do wish you could get your SSI. I will do a lot of praying for you, I know exactly what you are going through because of what I went through to get mine. The stress of what we all go through brings on these attacks.

Back to Vanessa, I didn't mean to take away from your post, I just wanted to touch up on the panic attacks also. They do come with the councelling.

I realize I most likely talk too much about Bill on here also and I'm sorry for that but I just wanted to tell Allen about what brings mine on.

Hang in Allen and you too Vanessa. I'm glad to see so many of you getting the help you need for the depression.

Ada

I did try the Lyrica when it first came out. It reacted with another med I was on, so the doc changed it to topamax. Im glad it is working for you. I heard when it does work, and there is not many side effects, it really works well.

The topamax worked real well for me, but had its side effects also. They got bad enough that I had to stop taking it.

My problem is getting a prescription. When you dont have any money, and no insurance the ER is your doctor. You might get one prescription, but the refills are hard to get. It is frustrating because I feel like RSD has bound me up. Back before RSD I was a dynamo! People had a hard time keeping up with me, and now I have a hard time just walking. The rug was pulled out, and I am at the whim of RSD. It is this helpless feeling, always present, and no cure in sight.

My mind has all the answers, but my body cant deliver.

RSD has slowly transformed me from a workaholic, career chasing, dream making person, and turned me into just a person that just dreams about life. Totally against every fiber of my being, I have all my hopes on SSI. Talk about goals :rolleyes:

I hope everyone can chase away the depression, or at least find ways to deal with it. :grouphug:

Thoughts
 

Hi Nikon-
Just a couple of thoughts from a mom's point of view on the counseling that I have been through. As a mom, I am desperate to help my daughter with any tool that I may have. If it is a chance at helping my daughter get better, I look at options and decided if it is worth it. Talking to the counselor is an option that can be helpful in so many ways and selfishly, can be another way I can try and help my daughter. I know one of the hardest things she has had to do is try to find a way to open up and talk and one of the ways her therapist has tried is to talk about all sorts of other things to get to know her and to start a line of conversation. The therapist may just be trying to break the ice, get to know you and give you something that you are confident in to talk about, working up to talking about RSD. She may be trying to learn how you best cope and handle situations so she can guide you with RSD better--why try techniques you've tried in the past that didn't work?

You are probably the teacher here in teaching your therapist about RSD. She might not know what to say when bringing it up.

It is quite common for therapists to talk individually with parents during therapy. The dreaded RSD affects so much in a family that often it helps moms and dads to talk it out. My daughter's therapist was also very good at telling me to try and relax a bit.

Allen-
I have severe TMJ, no cartilage left in one of my joints, and most gone in the other. I have had it for years and the only solution I have found that has been incredibly helpful is to get a splint from my dentist. I wear it every night and can tell when it is just a bit off. I have mostly done away with headaches from my TMJ etc. I have cracked and broken many teeth from grinding and clenching and this splint has really helped. It is not an athletic protection splint but one for TMJ. Wearing it has also helped my back as I am not so tense in the morning, and saved my teeth!

As far as panic attacks go, while my daughter doesn't seem to have these, I have them all the time. I am so on edge for both of my girls that they are going to get hurt (my other daughter has had symptoms of RSD) and that her RSD is going to spread etc. Thanks to everyone here for helping me along the way, it is a good place to go when I am panicked as everyone here helps me get through each one.:hug: