It has been a while since I came to the board. I am still doing relatively well by regualting my pain meds myself. I rarely take one but I still am very limited by my RSD itself. I really can't do much of anything.
Yesterday my goals were to get out of bed, take a shower, take the dog outside, and cook white beans for supper. I managed all except cooking it was just too much. Today I am very sad and I really can't give you a reason. I think that in the back of my mind that this was gonna just poof go away and I would be able to return to my previous active life and work as a medical technologist and i think since this started in 2001 that i realize it won't just disappear. I know it is ok to be sad at times but as in pain meds I hate to be sad also. To stubborn for my own good sometimes I think.
I'm sorry you're sad today. The realization that you might never be as you were before you got RSD is a very sad one and it would be strange if you weren't sad right now. I remember that realization and it came for me, many years after my diagnosis. When I was first diagnosed, there was less known about RSD than there is today (not saying there's a whole lot of knowledge out there today) so I was told that it would go away and I believed that. Finally, about ten or so years later (when I was about 25), I realized that this wasn't going away. I was depressed about it for a while, but looking back on it now, I have to say that that was a very important step in my turning out of my depression. Now that I accept that the RSD isn't going anywhere (until that cure is found), I've been much happier. I hope this happens to you soon.
Brighteyes: As a sufferer of 2 years, I understand what you are going through. Each day , I am confronting with obstacles(WC,Health) that are put in front of me b/c my RSD is in my right dominante hand and can't do it all w/my left hand. By reflecting on how my body used to be before this, I only find myself becoming upset and I don't won't to become depressed. Basically, I had to come to the realization that I have to keep on fighting or I will lose the fight altogether.
Somedays , it seems like no one truly understands or really wants to understand what you are going through mentally and physically. During times like these, I try not to take it personally b/c I know that I could become upset if I think about it only making myself feel worse. So, I try to come to understanding that no one truly knows what you are going through unless they are walking in your shoes. As a result, I try to make them aware of what I am feeling and hopefully through the grace of god they feel where I am coming from. It has been a hell of an adjustment for trying to deal with medication(vicodin/ultram/neurotin) and painful procedures (stellate block).
I have my 2nd Stellate Block Today and god willing it will go well and push the pain that radiates from my hand away. Its one of those painful procedures that I dread having to go through. However, everyone on the board have been a help to me by giving me suggestions on how to deal with it.
Stay strong and know that all of us hear share your struggle. No matter what don't give up the fight..
I wish you luck with your nerve block today. I had one and unfortunately I didn't benefit from it, I so wished I would have, but it wasn't for me. But I didn't get to try one until I was well past the three year part, so no one had much hope (except me!), it was more a "just in case" thing as no one had tried one previously. But try and relax, concentrate on nice smooth calm breathing and think positive thoughts throughout!!
My RSD is in my right arm, fingers to neck now, so I know how you feel as its my dominant arm. Well, it used to be! I can write left handed and type one handed, but most of the time, if I can, I try and type with both hands, if only for a while. Gotta keep my fingers moving!! I was very frustrated when learning to write left handed. I had to buy Grade Two handwriting books and write stupid phrases (Bobby bought a blue balloon for example) over and over on the dotted lines! It did help, but I felt like a child. Then I tried crossword puzzles, keeping the letters inside the squares.
But mentally it feels like you are giving up a lot of your independance and your previous life, as you can't even use your dominant arm anymore. I'm having a down day today. It's partly because one of my nan's died a month ago, and now my parents have gone to england as my other nan is dying, and its kind of upsetting me. But I'm also sick of everything. Tonight I delayed taking my tablets. Some days I just want to throw them all away and not have to take them anymore, makes me feel like an old woman having my handful of meds before I can fall asleep. But at the same time, I know I'd just feel worse without them, so I reluctantly took them and once again accepted that this is all a part of my life now, like it or not.
Anyway, I'm rambling now! I'm sure tomorrow I'll feel better! Let us know how your block goes, I hope it goes well for you and you get some well needed and well deserved pain relief.
Sounds like everybody is having a depressing week... I must admit I'm in the same boat as the rest of you. The pain in my left arm has come back full force, its almost as if i'm back to january before i knew what was wrong. i'm making myself use my arm and hand and fingers. although even right now the typing is pretty hard with the pain and shaking. i haven't been able to sleep much the past 3 nights. i know what you mean kate, about not wanting to take the meds. i've been acting the same way the past few days. my boyfriend has been getting real worried cause all i really want to do is lay around cause i feel off balance and dizzy and weak from the pain. i've been keeping my arm warm, wrapping in blankets, using my parafin machine, a heating pad.... and still nothing seems to be helping. i've been wearing my glove again to help with the swelling in my hand and fingers, and my wrist brace, because even just walking is killing my wrist w/o it having support.
i just hope these 35 days hurry up... if things don't get better in a few days i'm gonna end up having to call my pm to see if he'll give me something else. if not for the pain, then something for me to get some sleep.....
i hope you guys are feeling better.... i sure hope i will be too!
Thank all of you for sharing. I am not so down in the dumps but in alot of pain. Last night I gave in and took 2 percocets. I forgot to mention that not only in my RSD effected areas flaring but I am having a problem with my right knee. Left arm, neck, back, hand is the RSD area. Is funny actually you should see trying to walk...I look like the Hunch Back of Notre Dame.
Hurrican Ivan is a big concern right now and stress levels are high and that never helps. I am from Louisiana and yesterday was crazy. My oldest daugheter goes to school in Mobile, ALabama. It was all settled that when school closed her boy friend would drive her here and they would weather out the storm here. Last minute boyfriends mom freaked out and said he HAD to come home to Georgia because I was causing them to come into dangers path. THere was no way we could get to her school in time to get her before they locked it down so I had to decide whether to let her stay locked in the basement of a dorm to ride out the storm or drive 6 hours to Georgia which is gonna get more of this storm then we are. I didn't like it but she in Georgia right now. THEN, my other daughter goes to school in THibedeaux, LA which is in south LA and I knew they would be closing her school and was just waiting for the call and my sister and I was gonna drive down to get her. So, I had to get x-ray of my knee before dr. appointment today so my sister and I left for Baton ROuge which is about 45 min north of where I live and we are within 5 min of clinic when she calls and we have gto turnaround and go south for 2 1/2 hours to get her before school locked down there. I knew we had to get her but they gave her 3 hours to get out or be locked down. Thank God my sister was available to chauffer. So, we leave THibodeaux going back to Baton ROuge and we are caugt in all the evacuation traffic . TOok 4 hours to get to clinic to get knee x-rayed then anouther 3 hours to get home. Needless to say I co uld not move without crying by this time. I just don't ride well in a car. A car really aggrevates the RSD and the knee too!
I know I am longed winded and as I sit here is comical. Thanks for listening again gang.
Car rides are horrible for me as well. It really does seem that everyone is having more pain lately.... wonder if there's an actual reason for it, or just because of more stress on us all. Here's to hoping we all start feeling better.. - Jessica