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Re: MED: Exercise & about CFS
2005-08-24 09:14:21
bobbie sellers wrote:
> > It sound like the Provigil effects deluded you into >attempting too much activity. Some medications will relieve >some symptoms which may be secondary to the cfids. As soon >as you attempt to much the cfids hits back. > > too little and I sink into depression. If it really is a trade-off, I'd rather live with pain than inactivity. > Having extreme arthralgia(pain) in my ankles was one >of my early symptoms of cfids. I gave up wearing sheer hose >and put my high-heeled shoes aside. I went to exercise socks >and exercise shoes. > > anything on my feet at all. > What sort of exercise are you doing? Weight-bearing >exercise is not the best thing for some types of arthritis. >Too much exercise will aggravate cfids arthralgia. > > vacuuming. I got a YMCA membership and they have several programs of extremely gentle exercise (two in the pool, one yogo) plus I can go swim anytime. But I can never seem to get myself to go. My knee was an excuse for a while, and now it's my arm. I used to have a wonderful program of graded exercise I did everytime I had a good period, that started with a few yoga-type back exercises I did laying on the floor and progressed over about 6 months, to riding an exercise bike. But since my knees have gotten bad, I have a hard time laying on the floor, and forget about getting up again. And the biking REALLY made my knees worse. But the specialist I just saw told me an exercise bike was ideal exercise for arthritic knees, so go figure. I've noticed a couple things lately: my knees and ankles are better right after my period and got much better when I got dehydrated recently. So I started on a diuretic to see if that helps. > Maybe it is time to see that physician again? > > give me an appt for more than 1/2 hour at a time. > > Are you taking anything to help your immune system? > > No. I tried tons of stuff and none helped the fatigue, but I suppose I could hope they affect pain differently. At first, I tried to be scientific about it, trying one new supplement at a time, and, yes, giving it months to work, and taking careful notes. After a while, though, it was when I had a relapse and was desparate, I'd try everything at once. I'd get better eventually. I always get better eventually after a relapse, even if I take nothing. So then I'd stop the supplements and see if I got worse. If I continued to get better, I concluded the supplements weren't doing much and quit taking them until the next relapse. Since I started on the Provigil 1) things that used to set off a relapse don't always, 2) relapses last weeks instead of years, and aren't as bad. And, yes, this makes me risk pushing the envelope more. I hate doing less than I can just because I'm afraid it will make me worse when it might not. Goshdarnit, I spent 15 years unable to do much of anything! I've got a lot of catching up to do! --Lisa
2005-08-24 09:54:53
"Lisa"
> > I've noticed a couple things lately: my knees and ankles are better > right after my period and got much better when I got dehydrated > recently. So I started on a diuretic to see if that helps. I'd be careful about that dehydration. I've been on diuretics for a long time, to control my hypertension. Then I developed swollen feet and ankles, and my legs felt heavy and tired all the time. So then I started drinking more water and less coffee/tea/soft drinks, and the leg/feet/ankles problems went away. -- John Richards
2005-08-24 10:14:51
Alright, you convinced me. I got out my collection of supplements and
will at least finish off the bottles. But, add insult to injury, the house I'm living in now has NO medicine cabinet. I've moved a lot in my life and twice in the last year. It's pretty likely I'll have another move soon. Between the moves and trying to find medical help, I've seen an awful lot of doctors and there's something that really mystifies me because it happens almost every time. I go to a new doctor with fatigue, pain and depression making my life miserable and the first things they jump on are: 1) my blood pressure's too high, 2) I should have a PAP smear. This time I told her flat out, "I don't want a PAP smear, but I'll have one if it will make YOU happy." I got a lecture, but at least it got me out of the PAP smear. --Lisa bobbie sellers wrote: > > Are you taking anything to help your immune system? > > Remember you have to take something for much longer with >cfids than a month or even two months to see if it is helping >you. When I start a new supplement I give it a minimum of >three months. I only stop taking it earlier if it seems >to be affecting me badly. > >
2005-08-24 14:43:18
Perhaps related to something, but I'm not sure what. I've never heard
this from other folks with CFIDS. One of the things that always convinced me that this wasn't "all in my head" was that, before CFS onset, I always slept through the night. Since, from Day One, I have to get up and go to the bathroom a minimum of 3 times a night. (So my first self-diagnosis was, naturally, diabetes) Even during my really good periods. And if I'm not lying down during the day, and then lay down to take an afternoon nap, I often have to get up for the bathroom every 15 minutes. My theory is that it has something to do with NMH and my weight, which is greater than most PWCs. I've been fiddling with my habits a lot over the years to see what makes a difference and not much does. If I drink anything after 3pm, that changes to bathroom breaks about 6 times a night. Of course, it's at 4pm every afternoon that I'm most thirsty. I have not been happy with the effects of diuretics in the past (for blood pressure) but, as I said, the swelling in my feet and ankles is now so bad it's really effecting my mobility, so I figure it's time to try them again. --Lisa John Richards wrote: > "Lisa" > news:430C9CD2.7000300@webenet.net... > >> >> I've noticed a couple things lately: my knees and ankles are better >> right after my period and got much better when I got dehydrated >> recently. So I started on a diuretic to see if that helps. > > > I'd be careful about that dehydration. > I've been on diuretics for a long time, to control my hypertension. > Then I developed swollen feet and ankles, and my legs felt heavy > and tired all the time. So then I started drinking more water and less > coffee/tea/soft drinks, and the leg/feet/ankles problems went away. > > -- > John Richards > >
2005-08-24 20:39:28
Lisa wrote:
> Perhaps related to something, but I'm not sure what. I've never heard > this from other folks with CFIDS. One of the things that always > convinced me that this wasn't "all in my head" was that, before CFS > onset, I always slept through the night. Since, from Day One, I have to > get up and go to the bathroom a minimum of 3 times a night. (So my > first self-diagnosis was, naturally, diabetes) Even during my really > good periods. And if I'm not lying down during the day, and then lay > down to take an afternoon nap, I often have to get up for the bathroom > every 15 minutes. My theory is that it has something to do with NMH and > my weight, which is greater than most PWCs. Lisa, I'm over 300 lbs, have had CFIDS for about 25 years, and have never had that problem. When's the last time you had a basic chem panel blood test done? If your electrolyte balance is off, it can cause both swelling and frequent urination. You might have a kidney problem going on and not know it. In any case, I think you really should consult a doctor about this. You may need to be on a kidney-preserving medicine, or a diuretic, or take a potassium supplement. But please don't try to self-diagnose and self-treat for this - see a doctor! > If I drink anything after 3pm, that > changes to bathroom breaks about 6 times a night. Of course, it's at > 4pm every afternoon that I'm most thirsty. I couldn't just stop drinking fluids mid-afternoon; I'd have a migraine by night's end. If you get your electrolytes right, you may be able to skip such drastic moves. -- Andrea Frankel (andreafrankel at sbcglobal dot net) "wake now! Discover that YOU are the song that the morning brings..."
2005-08-25 06:33:10
Andrea Frankel wrote:
> Lisa wrote: > >> Since, from Day One, I have to >> get up and go to the bathroom a minimum of 3 times a night. ... My >> theory is that it has something to do with NMH and >> my weight, which is greater than most PWCs. > > > > Lisa, I'm over 300 lbs, have had CFIDS for about 25 years, and have > never had that problem. Very interesting and I guess that blows my theory. Still doesn't mean my problem isn't CFS related somehow. I wasn't even going to admit that my weight is about almost 300 pounds. I'm so used to doctors blaming my weight for just about everything (as well as feeling guilty as heck about it myself) I was afraid I'd get that from folks on this list, too. I should have known better. As I said, I've had this symptom since CFS onset 19 years ago and mentioned it to the dozens of doctors I've seen. I haven't had a blood panel lately, but I don't know how many I've had since this CFS onset and had one or two since the swelling problem started. (Aside, I really hate blood panels. The doctors always cheerfully inform me that my blood work is all normal, as if telling me this will convince me to stop feeling sick. Or at least stop teling them that I feel sick.) No doctor has ever offered me an explanation of this phenonmena nor seemed particularly interested in it. But thanks kindly for the concern. It's nice that someone takes me seriously. --Lisa >
2005-08-25 09:47:30
On Wed, 24 Aug 2005 20:38:42 -0700, you wrote:
> >Lisa, I'm over 300 lbs, have had CFIDS for about 25 years, and have >never had that problem. I'm another counterexample. I'm over 300 lbs; I've had CFS for 18 years, and I've never had that problem either. -- Meredith Dixon Check out *Raven Days*: http://www.ravendays.org For victims and survivors of bullying. And for those who want to help. |
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