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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Frustrated and in pain. (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/89603-frustrated-pain.html)

ryguy 06-13-2009 11:44 PM

If youre stressed due to your issue (like I am) I was just diagnosed with syringomyelia. The vicodin isnt even coming close anymore so i'm looking for something different when this script runs out. On the other hand, i have been taking clonopin to relax me and it DEFINATELY helps you sleep. Its not classified as a sleep aid but rather a anti anxiety drug. These may help in both ways, as they are for me. Hope you get the relief you need. It is difficult however, walking into a doctor asking for a schedule 1 narcotic. I am to the point where i dont feel guilty asking for stronger meds, in hopes that this pain will subside soon. Be assertive with whomever you're talking to, its your life , your body. Hang in there.

kathy d 06-14-2009 03:41 PM

I want my life back!!!
 
I hear ya babe. Just hang in there until your family doc appt on monday. Tell them it is an emergency that you have to see him and can't wait four hours in an ER for them to look at you funny and think you are there for pain meds and are a drug addict (yes, that has happened to me in the ER. I contacted the ER owner the next day and gave him a piece of my mind about that doctor). Even if you have to stop the PT you can do exercises at home to keep your hand stretched. Make up your own program or ask them what can be done at home.I feel for you so much. Isn't it amazing how some tiny little nerve in your hand can hurt so badly! It really makes you amazed at how our bodies are made.

I was always in control and organized too. I was a single mom for over 10 years, worked full-time, went online to college full-time, and had two part-time jobs on the weekend and took care of my son (who is now 20 and having a hard time seeing me in the pain for all those years). Now, I am lucky if I can get out of bed and go potty. It is amazing how our lives change to be a new normal. You will have to grieve the old life you had but little by little you will accept the new life you have now. It is all a matter of time. Try to keep your mind occupied. I read alot in the evening because if I don't I will breakdown and cry all night. I have found that by reading (even if I have to read it five times to understand it) and keeping my mind focused on something else it gets me through the day. I have been blessed to have a very compassionate best friend (who lives about 4 hours away) and we call each other alot. If it were not for her and a counselor that comes to my house each week I think I would be ready for the funny farm! No one else in my family gets it. My son used to get it but is so frustrated at seeing me barely lives in my house now. It has been so hard on him. Well, hang in there and try to do something for you each day. Even if it is to lie in bed and look out the window. I used to have a fish tank near my bed because that was the only thing I could do...look at the fish. It was calming and I began noticing their behaviors and it passed the time. Do what you need to in order to keep yourself together. I will keep you in my prayers. There are people here that love you and care about you.
kathy d:hug:



Quote:

Originally Posted by stressedout (Post 523063)
Thank you all. I am still having lots of pain. It's better in the morning, stiff. As the day goes on though it gets really bad. I was in so much pain last nite I was nauseas. I am going to call my family Dr on Monday and see if he'll see me and help. I don't want to wait to see the pain Dr on Thursday. Feels like little electric shocks going through my hand and arm. How can something so numb hurt so much? I hope I can continue with therapy. I feel like we are getting somewhere even though I still have some swelling and all this pain. Sometimes my fingers just don't want to work though.I am afraid that if I stop now that it will get worse. I felt like my hand was going to fall off after folding one load of laundry today. This is not me. I was always in control, doing for everyone and very organized, now my world is crumbling around me.:mad: I can't come to grips with this thing. I miss all the things i used to do. My kids and husband don't understand. The Melatonin is definately helping me get to sleep but I can't stay asleep. I want my life back.


daniella 06-14-2009 04:58 PM

I am sorry you are still in a bad spot. I can relate. I am glad you are calling your gp but I would also call the pain doc and explain the need to be seen or at least to talk to the nurse for something to help you till Thurs. Are you only taking melatonin? I know it is hard to hold to hope in the flares but getting on better meds can possibly make a huge difference. I don't get too what your doc means by mild. Does he mean what it looks like because to me nausea pain is not mild and rsd does not have to look bad to feel like you want to chop it off so to speak from pain. Keep us updated

stressedout 06-14-2009 05:21 PM

Thank you everyone, glad someone understands
 
I am in NJ and the weather has been rainy and horrible. Today is nicer and the pain is down a bit but it's more swollen than yesterday (?). The pm dr told me over a month ago that the only thing he would do for me were nerve blocks. Well, I had 6 and they did take alot of pain away but only lasted a wk and a half. He was talking about sending me back to wk (I know I can't do what I used to), ordered a FCE that has since been canceled because of the pain return. I don't know what he'll do for me this wk but I don't really want to do more nerve blocks. I know there are meds that he can offer me. I want to continue w/OT so I can get more stregnth back, I can't accept that this is what I am left with, still can't touch my pinky and thumb. I use it as much as I can but too much and it hurts more.The only thing I take right now is the Melatonin at night. I think he means "mild" because it isn't huge, red and frozen or I don't have all the symptoms (my nails are fine but grow fast). I have lots of Pain, swelling, changes colors, stiff, tremor, burns and sometimes tingles or I get like eletric shocks running through my arm.

Another thing that happens is the cold...freezer aisle, ac too high really hurts my arm. Is this normal?I've started carrying a sweatshirt everywhere, feel like I need to keep my arm covered.


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