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