Hi all,
As some of you know, I havent been very good lately. I still haven't got over that "flare" or whatever when I had the problems breathing and still have days of bad joint pain, extreme tiredness, headaches etc.
I can "cope" with most things including the days of such crushing tiredness that I simply can't do anything I had planned on. For example, I had to cancel my work on Friday (the only day that I work outside of home).
What I am having real trouble coping with is my lack of mobility. Although I can walk a bit and not very energetically, I have such incredible pain in my feet that standing is impossible. Now, when I say standing I mean standing 5 minutes. This means that shopping is torture as walking around the supermarket and then standing at the cash desk almost has me in tears.
When my son was choosing his birthday present last month, I ended up sat on the floor in the middle of the toy store as I simply couldn't take it any more. Another time, at IKEA (short 30 minute "in/out" visit) I ended up sat on the thing for baskets and handbags at the cash till. I got real odd looks from an old couple behind me!! Last week at dog training (the only activity I try to keep up) I did, literally end up in tears. The lesson was longer than usual and, worst of all, involved loads of standing around.
This foot pain thing is a big problem for me as I really can't find a way to relieve it. I wear bouncy shoes. I also have insoles which are supposed to help but, although they don't make it worse, they don't improve it either.
I also have extreme pain in my hands but that mainly affects me in the evening and at night, and, like most people, I don't walk on my hands :lol: The rheumy and neuro think that it is neuropathic pain. I feel as if all the bones in my feet and hands have been crushed in a vice, very sharp pain. My rheumy put me on cymbalta to try and help. Unfortunately, I had really bad side effects. She now wants to try "anafranil" which is another anti-depressant.
I guess the reason why the feet are getting to me is that it is stopping us have any semblance of normal life. Everytime we think of going somewhere with the kids I end up saying no as I simply can't. We can't go to the zoo, we can't go to a shopping centre, we can't go to a show or exhibition...
So, basically the question is...have any of you found any way to relieve this terrible pain - other than never walk or stand again?
Sorry to moan like this but this one thing has been seriously getting to me. I mean, I know it's all related to disease activity (this problem totally disappeared when I was in remission a few years ago) but, as we can't seem to control my disease activity more (and the rheumy is not worried as bloods etc are good and things are stable), I am worried I'll never see the end of this.
thanks,
Katharine
As some of you know, I havent been very good lately. I still haven't got over that "flare" or whatever when I had the problems breathing and still have days of bad joint pain, extreme tiredness, headaches etc.
I can "cope" with most things including the days of such crushing tiredness that I simply can't do anything I had planned on. For example, I had to cancel my work on Friday (the only day that I work outside of home).
What I am having real trouble coping with is my lack of mobility. Although I can walk a bit and not very energetically, I have such incredible pain in my feet that standing is impossible. Now, when I say standing I mean standing 5 minutes. This means that shopping is torture as walking around the supermarket and then standing at the cash desk almost has me in tears.
When my son was choosing his birthday present last month, I ended up sat on the floor in the middle of the toy store as I simply couldn't take it any more. Another time, at IKEA (short 30 minute "in/out" visit) I ended up sat on the thing for baskets and handbags at the cash till. I got real odd looks from an old couple behind me!! Last week at dog training (the only activity I try to keep up) I did, literally end up in tears. The lesson was longer than usual and, worst of all, involved loads of standing around.
This foot pain thing is a big problem for me as I really can't find a way to relieve it. I wear bouncy shoes. I also have insoles which are supposed to help but, although they don't make it worse, they don't improve it either.
I also have extreme pain in my hands but that mainly affects me in the evening and at night, and, like most people, I don't walk on my hands :lol: The rheumy and neuro think that it is neuropathic pain. I feel as if all the bones in my feet and hands have been crushed in a vice, very sharp pain. My rheumy put me on cymbalta to try and help. Unfortunately, I had really bad side effects. She now wants to try "anafranil" which is another anti-depressant.
I guess the reason why the feet are getting to me is that it is stopping us have any semblance of normal life. Everytime we think of going somewhere with the kids I end up saying no as I simply can't. We can't go to the zoo, we can't go to a shopping centre, we can't go to a show or exhibition...
So, basically the question is...have any of you found any way to relieve this terrible pain - other than never walk or stand again?
Sorry to moan like this but this one thing has been seriously getting to me. I mean, I know it's all related to disease activity (this problem totally disappeared when I was in remission a few years ago) but, as we can't seem to control my disease activity more (and the rheumy is not worried as bloods etc are good and things are stable), I am worried I'll never see the end of this.
thanks,
Katharine