Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Just wondering if a hot tub or something would be of benefit. I noticed when looking up MG that it recommended NOT even using hot water to shower. Is this the same for PM? Have a great day all. I'm back to baby-stepping today I appreciate all your responses so far. Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Ed, Living in Augusta, GA, our neighborhood pool gets uncomfortable warm by July and miserably warm by August. It absolutely wipes out to swim in warm water. He becomes a wet noodle. He will swim for a little bit then get out and lay on the pool deck. We tend to avoid the pool come Augusta. I have never allowed him into a hot tub. I do watch the temp of his bath water also. has DM but I would think it would be the same for PM. Cari > >Reply-To: OurMyositis >To: OurMyositis >Subject: Hydrotherapy??? >Date: Sun, 25 Nov 2001 21:25:46 -0000 > >Just wondering if a hot tub or something would be of benefit. I >noticed when looking up MG that it recommended NOT even using hot >water to shower. Is this the same for PM? > >Have a great day all. I'm back to baby-stepping today I >appreciate all your responses so far. > >Ed > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 You're pretty close to us here in Crestview. It's the same, August being the unbearable month. Since this really started with us we've been back and forth about what would be the most benefit, a pool or a hot tub. Guess we'll have to see how I progress. When you said it made him a wet noodle did you mean with no strength or just too relaxed? I do remember reading that they recommended only warm water for folks with MG but didn't know if it was the same for PM. Ed > Ed, > Living in Augusta, GA, our neighborhood pool gets uncomfortable warm by July > and miserably warm by August. It absolutely wipes out to swim in warm > water. He becomes a wet noodle. He will swim for a little bit then get out > and lay on the pool deck. We tend to avoid the pool come Augusta. I have > never allowed him into a hot tub. I do watch the temp of his bath water > also. has DM but I would think it would be the same for PM. > Cari > > > > >From: " Ed " <ed@r...> > >Reply-To: OurMyositis@y... > >To: OurMyositis@y... > >Subject: Hydrotherapy??? > >Date: Sun, 25 Nov 2001 21:25:46 -0000 > > > >Just wondering if a hot tub or something would be of benefit. I > >noticed when looking up MG that it recommended NOT even using hot > >water to shower. Is this the same for PM? > > > >Have a great day all. I'm back to baby-stepping today I > >appreciate all your responses so far. > > > >Ed > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 By wet noodle I meant no strength. The exertion in the pool, with the warm water, would wipe him out in a few minutes. He would be lethargic the rest of the day. This summer was a little better as we had plenty of rain and that kept the water at a more pleasant temperature, but in August, he rarely asked to go swimming. Is old enough now to understand what helps him and what doesn't and we let him make those decisons for himself. Where exactly do you live? Cari > >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: Hydrotherapy??? >Date: Thu, 29 Nov 2001 01:45:26 -0000 > >You're pretty close to us here in Crestview. It's the same, August >being the unbearable month. Since this really started with us we've >been back and forth about what would be the most benefit, a pool or a >hot tub. Guess we'll have to see how I progress. When you said it >made him a wet noodle did you mean with no strength or just too >relaxed? I do remember reading that they recommended only warm water >for folks with MG but didn't know if it was the same for PM. > >Ed > > > > Ed, > > Living in Augusta, GA, our neighborhood pool gets uncomfortable >warm by July > > and miserably warm by August. It absolutely wipes out to >swim in warm > > water. He becomes a wet noodle. He will swim for a little bit >then get out > > and lay on the pool deck. We tend to avoid the pool come Augusta. >I have > > never allowed him into a hot tub. I do watch the temp of his bath >water > > also. has DM but I would think it would be the same for PM. > > Cari > > > > > > > > >From: " Ed " <ed@r...> > > >Reply-To: OurMyositis@y... > > >To: OurMyositis@y... > > >Subject: Hydrotherapy??? > > >Date: Sun, 25 Nov 2001 21:25:46 -0000 > > > > > >Just wondering if a hot tub or something would be of benefit. I > > >noticed when looking up MG that it recommended NOT even using hot > > >water to shower. Is this the same for PM? > > > > > >Have a great day all. I'm back to baby-stepping today I > > >appreciate all your responses so far. > > > > > >Ed > > > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 We're in Crestview, Florida on I-10 about 50 miles east of Pensacola. From what I'm gathering, the weakness and fatigue isn't constant but rather flares up either by some direct cause or sometimes just cuz it wants to. I'm also assuming, thanks to numerous replies here, that the level of recouperation is individual and depends on types/dosage of meds, or lack thereof. I'm just trying to summarize what I'm up against here. A long battle? I suppose. I'm also assuming that it's imperative to rule out IBM before starting any medication, given that IBM has no treatment. One more question I can think of right now. How bad can it get? I mean if it takes a while to get a diagnosis and get on some kind of treatment. I seem to be walking a little better today, but have more overall soreness. More soreness in the arms and also in the neck which is new. The restless leg bit continues on as normal. Enough of my blabbering for now. Have a good night. Ed > > > Ed, > > > Living in Augusta, GA, our neighborhood pool gets uncomfortable > >warm by July > > > and miserably warm by August. It absolutely wipes out to > >swim in warm > > > water. He becomes a wet noodle. He will swim for a little bit > >then get out > > > and lay on the pool deck. We tend to avoid the pool come Augusta. > >I have > > > never allowed him into a hot tub. I do watch the temp of his bath > >water > > > also. has DM but I would think it would be the same for PM. > > > Cari > > > > > > > > > > > > >From: " Ed " <ed@r...> > > > >Reply-To: OurMyositis@y... > > > >To: OurMyositis@y... > > > >Subject: Hydrotherapy??? > > > >Date: Sun, 25 Nov 2001 21:25:46 -0000 > > > > > > > >Just wondering if a hot tub or something would be of benefit. I > > > >noticed when looking up MG that it recommended NOT even using hot > > > >water to shower. Is this the same for PM? > > > > > > > >Have a great day all. I'm back to baby-stepping today I > > > >appreciate all your responses so far. > > > > > > > >Ed > > > > > > > > > > > > > _________________________________________________________________ > > > Get your FREE download of MSN Explorer at > >http://explorer.msn.com/intl.asp > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 Hi Ed, DM patients (well, I mean myself, anyway) experience terrific discomfort when exposed to water that is too warm. Some of my friends have hot tubs. I tried, but then had an awful time trying to get out of the tub! It just seems to zap what strength I have. The " wet noodle " description is perfect; that's exactly what I feel like after being in water that is too warm. I don't know what happens to the muscles and I've never mentioned it to my doctors. Annette Hydrotherapy??? > >Date: Sun, 25 Nov 2001 21:25:46 -0000 > > > >Just wondering if a hot tub or something would be of benefit. I > >noticed when looking up MG that it recommended NOT even using hot > >water to shower. Is this the same for PM? > > > >Have a great day all. I'm back to baby-stepping today I > >appreciate all your responses so far. > > > >Ed > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 Ed, I can only speak from a caretakers point of view but from what I have observed: The weakness and fatigue does flair up either by direct cause or sometimes just cuz. I think everyone has to learn what their triggers are. 's are too warm water, and too much activity. We have a gas fireplace and can't stand to be near it, same thing on a really hot day. Bothers his skin too much he says. But he has DM, that may not occur with PM. His hip pain just seems to flare up because it wants too. It does seem the faster the diagnosis and the faster treatment is received, the shorter the battle and the better the outcome, but this can differ from person to person also. Same with the Medication used to fight the diseases. Everyone is so different with what works for them. Very frustrating. How bad can it get? 's Dr. also told us around the one year mark that if cancer had not reared it's ugly head by then, then it most like wouldn't. Also, if the DM hadn't gone to the lungs yet then it was very unlikely to, ever. Our fearless leader Vicki has the lung involvement. 's disease completely wiped away any and all muscle strength in 3 weeks time. I met a little girl a month ago with DM who was dx by a Dermatologist fromt he skin rash alone. She had had it for months. When I met her she had no muscle involvement at all! She was running around and playing. Again, everyone is so different. fell asleep on my lap last night watching a Christmas special. The first 1/2 hour he's asleep his muscles twitch and twitch. I don't know if he every experiences restless leg syndrome. I would have to say at this point and time he probably doesn't. He would be old enough to communicate that to me, but he tends to stay up later then my girls (ages 8 and 9) and we let him. He seems to need to go to sleep when he is exhausted so sleep comes easier. His muscles do twitch long after he is asleep. I don't know if I really answered anything for you. I think the most frustrating thing for me is not ever having concrete answers to so many of our questions. Have a great Thursday, Cari > >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: Hydrotherapy??? >Date: Thu, 29 Nov 2001 04:11:25 -0000 > >We're in Crestview, Florida on I-10 about 50 miles east of Pensacola. > >From what I'm gathering, the weakness and fatigue isn't constant but >rather flares up either by some direct cause or sometimes just cuz it >wants to. I'm also assuming, thanks to numerous replies here, that >the level of recouperation is individual and depends on types/dosage >of meds, or lack thereof. > >I'm just trying to summarize what I'm up against here. A long >battle? I suppose. I'm also assuming that it's imperative to rule >out IBM before starting any medication, given that IBM has no >treatment. > >One more question I can think of right now. How bad can it get? I >mean if it takes a while to get a diagnosis and get on some kind of >treatment. > >I seem to be walking a little better today, but have more overall >soreness. More soreness in the arms and also in the neck which is >new. The restless leg bit continues on as normal. > >Enough of my blabbering for now. Have a good night. > >Ed > > > > > > Ed, > > > > Living in Augusta, GA, our neighborhood pool gets uncomfortable > > >warm by July > > > > and miserably warm by August. It absolutely wipes out to > > >swim in warm > > > > water. He becomes a wet noodle. He will swim for a little bit > > >then get out > > > > and lay on the pool deck. We tend to avoid the pool come >Augusta. > > >I have > > > > never allowed him into a hot tub. I do watch the temp of his >bath > > >water > > > > also. has DM but I would think it would be the same for >PM. > > > > Cari > > > > > > > > > > > > > > > > >From: " Ed " <ed@r...> > > > > >Reply-To: OurMyositis@y... > > > > >To: OurMyositis@y... > > > > >Subject: Hydrotherapy??? > > > > >Date: Sun, 25 Nov 2001 21:25:46 -0000 > > > > > > > > > >Just wondering if a hot tub or something would be of benefit. >I > > > > >noticed when looking up MG that it recommended NOT even using >hot > > > > >water to shower. Is this the same for PM? > > > > > > > > > >Have a great day all. I'm back to baby-stepping today I > > > > >appreciate all your responses so far. > > > > > > > > > >Ed > > > > > > > > > > > > > > > > > >_________________________________________________________________ > > > > Get your FREE download of MSN Explorer at > > >http://explorer.msn.com/intl.asp > > > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 Seems like so little is really known about these things. Such a wide variety of onset, symptoms, etc. Really makes you wonder how much is science and how much is educated guessing. It will probably end up being traced back to canola oil or something LOL!! I think what really hit home for me was when I " physically " noticed the slight grade on our driveway up by the garage door. It has an instant negative effect on my stride, whatever that is at the time. I'm afraid of stairs. I've thought about doing a daily diary on the web. Have a great day. Ed > > > > > Ed, > > > > > Living in Augusta, GA, our neighborhood pool gets uncomfortable > > > >warm by July > > > > > and miserably warm by August. It absolutely wipes out to > > > >swim in warm > > > > > water. He becomes a wet noodle. He will swim for a little bit > > > >then get out > > > > > and lay on the pool deck. We tend to avoid the pool come > >Augusta. > > > >I have > > > > > never allowed him into a hot tub. I do watch the temp of his > >bath > > > >water > > > > > also. has DM but I would think it would be the same for > >PM. > > > > > Cari > > > > > > > > > > > > > > > > > > > > >From: " Ed " <ed@r...> > > > > > >Reply-To: OurMyositis@y... > > > > > >To: OurMyositis@y... > > > > > >Subject: Hydrotherapy??? > > > > > >Date: Sun, 25 Nov 2001 21:25:46 -0000 > > > > > > > > > > > >Just wondering if a hot tub or something would be of benefit. > >I > > > > > >noticed when looking up MG that it recommended NOT even using > >hot > > > > > >water to shower. Is this the same for PM? > > > > > > > > > > > >Have a great day all. I'm back to baby-stepping today I > > > > > >appreciate all your responses so far. > > > > > > > > > > > >Ed > > > > > > > > > > > > > > > > > > > > > > >_________________________________________________________________ > > > > > Get your FREE download of MSN Explorer at > > > >http://explorer.msn.com/intl.asp > > > > > > > > > > > > > _________________________________________________________________ > > > Get your FREE download of MSN Explorer at > >http://explorer.msn.com/intl.asp > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
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