|
Member
|
|
Join Date: Sep 2013
Location: Georgia
Posts: 905
|
|
|
Member
Join Date: Sep 2013
Location: Georgia
Posts: 905
|
I've really enjoyed this thread :)
Quote:
Originally Posted by Susanne C.
Debi, I am so sorry. You are always so cheerful. Many of us here have been abandoned by our neurologists- they hate prescribing pain medicine and realistically they aren't going to see us often enough to do it. They also tend to feel that since there isn't any treatment they can offer they are wasting their time and our money. If your PCP is willing to work with you on adjusting your medication for maximum relief that is probably the best way to go. Given your other issues there should be no question of taking your complaints seriously.
The future. It is easy to say try to live in the present and don't worry about what you can't control, but it is only human to think about what will happen if things continue the way they are, or get worse. You have been hit pretty hard with this, and your frustration level must be running very high. This has been sudden, which is much harder to adapt to than a gradual loss of ability like mine. Your experience with trying to do a little shopping raises the question- overall is it worth it to you to be more active, get out a little, shop, go to dinner, even if it means paying for it tomorrow, or do you feel better conserving your energy and keeping your days quiet and consistent? Only you can answer that.
I wanted to help a friend make pajamas for her children. I knew it would leave me pretty exhausted and sore, and it did, but I felt great about having done it. I would not have felt the same way about housecleaning, though that will have to be tackled, with a lot of help, in the next few days.
Honestly I think you may need something stronger, or more consistent if the pain continues to limit you this much. For something to think about with doctors there is this
http://www.healthcentral.com/chronic...hronic-illness
For thinking about conserving energy there is the ubiquitous spoon theory, which really helped my husband understand-
http://www.butyoudontlooksick.com/na...poonTheory.pdf
Please keep venting here, we care about you, you're so sweet! And take care of yourself. It is easy to forget how much extra work this time of year makes, even when you think you are taking it easy.
Bless you,
Susanne |
Good morning everyone !
Susanne....thanks for saying I'm cheerful......it's nice to have confirmation that it comes through on my postings 
I got past the 'bad time' I was having and feel much better mentally. The lowering of my gabapentin has made my head clearer but the pain in my feet and hands worse. Of course I started a 6 day course of Prednisone on Tues of last week and even though it has not helped with any of the pain it sure has got me 'wound' up mentally.....lol......driving the kids and husband crazy with all the 'talking' !
About my pain meds......since all this is so new to me I've only used the vicodin and Xanax. At the end of Sept I did put myself on a pain mgmt. schedule (that my PCP had been telling me to do) 1/2 a vicodin every 3 hours during the day. I only use it during the night if the pain wakes me up. I add 1/2 a Xanax when it's really bad which is a few times a week....always when I use my feet or hands too much.
If I use a whole viocdin then I'm 'high' which is a feeling I hate. I've never thought about using something else for the pain. Would love some suggestions ? And info on how they work for different people ? I've used the 'pepper' cream on my feet that burned my hands but I felt absolutely nothing on my feet. I quit using it after 4 weeks. I am now using the Morton's Epson Lotion......it doesn't seem to be helping either but I'm going to keep using it for a while.
And accepting this.....severe small fiber neuropathy......my feet are 'devoid' of A and C fibers. Every time I see my biopsy paperwork I shudder. I'm pretty sure I haven't come to terms with it yet. I KNOW I have to pace myself everyday and really do try but I so need to 'sweep' that floor or 'clean the toilet'. We're leaving for Panama City Beach tomorrow morning. So yesterday I got the suitcase out and packed a few things. I was feeling pretty good and was 2 hours late taking my vicodin. It hits me like a bullet....BAM.....oops.....forgot to take my pain meds and now I feel like I'm going to die....have to go to bed for 2 hours to get my feet off the floor and let the pain med kick in.
Emory Dept of Neuro - Atlanta March 25, 2014.....my Gyn called me the week before Christmas and was upset that I cannot get in until March....she asked me to call Emory and see if they have a list they can add me to in case someone cancels a 'new patient' appointment before I have mine. I only live about 45 min to an hour away and could get there fairly quickly and easily. I'm going to call them when I get back from Florida and see if they can do that for me. At this point in my condition all I want is to be able to clean my house, grocery shop and cook. Simple....that's all I want right now. I have faith and will keep searching. Hopefully Emory will come thru for me.
I wonder if they will retest me on things I've already had done ? I'm sure they will order all new blood tests but don't really know what to expect after that.
I've jabbered on long enough. Thank u all so much for the support and info I receive here.
Debi from Georgia
|