You all are soooo cool! We are so much in the same boat LOL. I read everyone's posts and could have written almost every line when it comes to pain, paranoid feelings, anxieties, etc LOL!!

I bet it is the same when you all read these too. :grouphug:

One of the things I cant stress enough is dont mess around with your pain medication dosages. Like taking less without talking with your doctor. The withdrawals are not fun, and I wouldnt want anyone to go through any discomfort they dont have to. It took me 3 months before I even felt anything I could call normal, and the first month was something that I could only compare to a type of hellish near death experience. So please make sure you talk to your docs, they can work with you making it withdrawal free if that is your goal.

I think everyone will find their own path to dealing with this pain we call RSD, and medication has it's place. So again im not trying to talk anyone out of their pain meds. What happened to me was something God had planned for me. He knew I could handle it, otherwise it would have been different.....I think LOL. I do know I came out of this stronger than I was before, and with a sense of purpose like never before.

With something to share with my RSD family. He knows where we are, and he is right there with you. Did you read what I said...He IS right there with you. He didnt heal me, he gave me a peace in knowing he is right here making a way.

One of the things that work for me, imahotep uses, and it works so well. I call it pain distraction LOL
Plus there is this one nagging thing we all share....

I have a suggestion :)

Since we all are on the same page, and it seems we all have some good talent. Plus we all know our limitations LOL! We should look at putting together an online biz.
Most groups come together to organize some type of awarness group. Well thats all cool and everything, but we could use our disabilities as a real marketing tool. All we need to do is find what biz. :p

MsL, this so interesting
 

MsL, this is so interesting, Im glad you are using your cane, alot can happen to the other side of your body by postponement. MsL, your current situaltion affords me the opportunity to ask some questions about mine, I hope you dont mine.This was reversed a bit for me and with my wheelchair, I have to use the wheel chair to go anywhere that requires walking or standing for over 20 minutes or I can not go. My husband would keep saying do you really need your chair?/ over and over , eventually I just didnt go anywhere, My world with my husband has become very small. Different story with my sisters.
We went through this with the cane too,"do you really have to use that". The reason Im sharing all of this is because you too choose to work to be as normal as possible around your husband. I realize your situaltion may be completely different. But my question is have you found you have less pain now that you have the opportunity or situation to be alone and not need to do that? The reason I ask is because after a few days of trying to be normal when my husband is home I often think I wish could just live alone. I feel my acting normal creates so much additional pain for me that its almost intolerabe - Actually I know it does as I'm in bed the whole time my husband is gone recovering. Unless he is gone for two weeks, then by the second week my pain is better because i go at my own speed. SO basically I guess Im trying to find out, is the grass greenier in terms of pain on the other side? thank you so much. cz

Brillant Idea Allen
 

Allen this is brillant! I'm thinking:) cz

I just want to say one thing about this, and, I'm sure it's not your situation. It just brought this memory to mind.
Both of my wives knew, but the 2nd, actually had it in her to tell me, very calmly, but for certain in fighting words, "I Can Control You, With Your Pain".

I'm so happy about my divorce.(My sin, was I couldn't love someone who treated me that way). I'm not happy that I might need to give her my entire life, and what I inherited, from my parents entire lives. We all worked together, and Pfffft. It's gone!
(again, Allen knows.)

pete

Hi Everyone,
You'll probably laugh at this but there are still days that I swear I am going to beat this RSD and be all better one day. I've had other minor illnesses and have always rebounded. My neurologist told me I have to accept the fact that RSD is here to stay. My daughter and many of the friends on this site have told me I need to talk to someone about it. I have been searching but can't find anyone who is familiar with RSD and takes ins. The one Dr who my neurologist reccommended is a physciatrist and wants $450 a session and his office told me he really just sees you one time for an evaluation (medication prescribed) and then it is $125 for 15 mins. for follow-ups. Not what I'm looking for. I am going to keep searching.
I will say that the RSD seems to be getting much worse. I do still work and to tell you the truth I have to. I live in fear now of losing my ability to work. I don't know how we would be able to keep everything we have worked for or even pay our bills.
I do feel like it is headed that way. Well enough complaining. Every now and then I go through these really down times then I pick myself back up again and trudge on.
Hope everyone has a good (low pain) weekend.
Hopeful

Hi Cz,

It sounds like your husband may have a hard time accepting the diagnosis of your RSD and how it’s affecting your life. It sounds like he’s concerned for you and, probably quite scared too. I don’t know if that’s your situation but men often don’t know how to express those emotions.

I think we often forget just how difficult it can be for our spouses to have to watch us go through what we do, it makes them feel helpless. I'm very fortunate that my hubby supports me as he does and that he encourages me to maintain as normal a life as possible, he also is very understanding and encourages me to rest when it’s clear I’m doing too much.. I think that's healthy for me. After speaking with Dr. Rohr in Germany for 2 hours he has a very deep understanding of what exactly RSD means for me, for him and for our future. There are times when we are walking hand in hand and my pain starts to slow me down, I know he feels my pain and it hurts him too, just in a different way. We do need to talk about it from time to time. I was afraid to tell him I decided to get the cane but when I did he just told me that he hoped I would feel better soon and that it would help relieve the pain.

Since he’s been gone I find it is very hard to do many of the things around the house that he would just do without me even having to ask him. I married a man who happens to have an A type personality, he is focused driven and very active. I miss him very very much.

Any pressure to live as normal as possible really comes from me trying to keep up with him and the fear that if I don’t he will leave me. That fear by the way is totally unfounded and merely a deep rooted insecurity of mine left over from a very dysfunctional family and childhood. I came out of that as a people pleaser; which was very evident during a recent visit of a very close friend who brought her 90 year old mother and husband. The visit was very challenging for me and my pain shot through the roof. There were some very difficult family dynamics between them and they were putting me right square in the middle. It was stressful needless to say. At the end of the visit we were chatting about just how difficult it was for me to entertain now. And my friend said you don’t have to do all that stuff just for us! I replied by stating it’s the way I am, if someone comes to my house I feel obliged to make them feel comfortable, feed them, make everything perfect. I’m the same way with my husband, so in a way I have a bit of a break right now. I can't imagine what it must be like for those of you that have children to care for.

Is my pain any better now that he is away than when he is here? No not really, it still boils down to daily management of my activities and stress. I can be my own worse enemy.

The bottom line is that I put this stress on myself and I pretend things are normal with everyone I meet. Until now I’ve had an invisible disability!

If my friends who know what I’ve been through ask me about my foot & or health, I always underplay the realities of what it’s like to live with this. I always show the bright side because I don’t want people to worry or feel bad.

The grass isn’t greener on the other side; the RSD pain still has a mind of its own. It’s just up to me how I manifest my emotions around all that.

I hope you can talk to your husband about how his coming home affects your pain levels so you can take the pressure of yourself. I’m not so good at this but I am getting better. I’m learning how to say NO and not feel quilty about it. When I can do that it feels great.


I hope your doing well tonight.

MsL

Hi Hopeful.

I love your optimism and honesty because there are days that I feel the same way exactly.

I'm not in therapy either for the exact same reason it's just too bloody expensive. I'd love to find a professional to talk to about this but it's not covered under my insurance here.

Thanks for sharing.

MsL

Great Suggestion Allen
 

Have any ideas about a the type of business that could work for people like us? I'll put my thinking cap on too.

MsL

Pete, thank you
 

Pete, thank you for sharing this very personal and powerful part of your life. I appreciate it.

I hope this is correct where you are, but spouses get nothing given to you by your parents, nothing.If you had it before your marriage and/or if it was gifted to you during your marriage, they have no right to it. that is the law in lforida. I really hope that applies to where you are. thank you again Pete, cz

Hopeful I do the same thing, and that was one of the things that I had a hard time dealing with because of the reality. It always came back to that dumb RSD making it difficult for me to do normal everyday things, how in the world was I going to function at a working pace?

Wasnt going to happen. One thing you did find though......the cheapest therapy in the world! A bunch of people that understand, and will listen, offer their shoulders, and be there anytime you need. :grouphug:

Wow CZ that is interesting, I think that is the law here in California too. I sure hope that is an angle you can take Pete. You are one of the strong ones here, and it is from over coming, but it would be nice to see you get some things that are rightfully yours back.

I do have some ideas on a online biz. Since we are all fairly versed in medical gadgets, we could sell all things RSD/chronic pain and everything that fits with that model. We could use the fact that we are all disabled with RSD as a marketing tool. We could tell our stories to the news about each of us, and how we came to start this biz.

It would do a few things right off the bat.
1. Create awareness of our business
2. Creater awareness of RSD/chronic pain
3.Give us all something to do LOL!

But im open for suggestions too, heck with all the brains in here you never know what we might come up with!