Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Deb, I am not Topper, but I am one that has had lymphedema for ages, and we are both in a lymphedema group. Lymphedema is serious. It lead to the cellulitis and other infections that landed me in the hospital twice earlier this year. Here is a group website that is very supportive and that has a lot of info, including about the massage . It might be best to avoid the sauna.Hot tub/jacuzzi may be beneficial, but watch the temp and if you have any open wounds, don't! The llymphedema lowers your resistance, and you are needing to be more careful so as to not get infections. http://groups.yahoo.com/group/LLLymphedema2 Hugs ThyroFeisty(Feisty)Proud group co-owner www.thyrophoenix.com Topper-Lymphedema? > Hi Topper! > > I was reading your post about lymphedema. I'm so glad you found some > relief for yourself. I wanted to ask you a couple of questions > though if you have a minute. After I read your post I went on a > search because I have had a problem with my extremeties swelling for > some time and don't know what to do about it. I have had three > different docs of the course of a year or so tell me it was no big > deal. I saw some pictures of severe lymphedema and some more mild > ones. I think I may have a mild-moderate case of it. My arms and > legs look very similar to the photos I saw. I'm kind of scared > because that's bad! > > Anyway, where did you find out how to do the massaging that you are > giving yourself. Granted, I haven't had a lot of time to go looking, > but I was wondering if there was a website that instructs you on how > to do it that you could refer me to. You have been such a wealth of > information already and I would trust any source you send me to. > Also, I am headed to my health club to see if I can stand to work out > for like five minutes to see what that does, but I also plan to go in > the sauna. It's an infrared one so no steam. Should I avoid that > until I get the thyroid/adrenal/possible lymphedema stuff under > control? I haven't found anything one way or the other. > > Thanks!! > > Deb :-) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 I joined a couple of lymphedema groups here at yahoo... I've learned a lot from those folks, great groups of people. I'm gonna plug their groups. We tar and feather anyone that just posts ads for other groups... but we also encourage anyone that finds a group that pertains to what we are discussing to share it with the rest of the group. Yahoo has probably a million groups around the world.. there is no way that any one of us could ever go through the whole list to see what is all available... so... anywhere here goes. The first is mostly for lower leg lymphedema: http://groups.yahoo.com/group/LLLymphedema2/ This one covers all over lymphedema: http://groups.yahoo.com/group/Lymphedema/ Both of them refer to a web site specific for lymphedema (I think this is the link): http://lymphedema.omno.org This is the site that they sent me to learn more about manual lymph drainage.. the massage that has helped me so much: http://www.cancerbacup.org.uk/Site/Resourcessupport/Controllingsymptoms/Lymphoedema/Massage#9023 And, last, but not least.. this is the diagram that showed me where the nodes are on the head.... I combined the massage basics with these nodes: I am having such a strong feeling that more of us may be having issues with this, or should be aware of things BEFORE they get to be as bad as some of the photos that I've seen of people with severe cases of lymphedema. As for sauna.... for anyone with lymphedema they say emphatically NEVER to exposed the lymph limbs to extremes in temperature... so no saunas or anything like that. It has to do with how the fluid moves, it's being sooooo prone to infection, you can ask about how awful that part is.... They do say that swimming and water activities in water that is not extreme is VERY good for lymphedema folks, the water pressure helps to press against the skin and help to move the fluid. Even the heat of sun bathing is bad, the limbs should be protected from the sun... There is a LOT to learn... if we have a few folks that would like to discuss it a bit more here, great... otherwise we can car pool over to the lymph groups!!! hehehehehehe Topper () On Mon, 27 Sep 2004 19:44:59 -0000 "Deb and " writes: Hi Topper!I was reading your post about lymphedema. I'm so glad you found some relief for yourself. I wanted to ask you a couple of questions though if you have a minute. After I read your post I went on a search because I have had a problem with my extremeties swelling for some time and don't know what to do about it. I have had three different docs of the course of a year or so tell me it was no big deal. I saw some pictures of severe lymphedema and some more mild ones. I think I may have a mild-moderate case of it. My arms and legs look very similar to the photos I saw. I'm kind of scared because that's bad! Anyway, where did you find out how to do the massaging that you are giving yourself. Granted, I haven't had a lot of time to go looking, but I was wondering if there was a website that instructs you on how to do it that you could refer me to. You have been such a wealth of information already and I would trust any source you send me to. Also, I am headed to my health club to see if I can stand to work out for like five minutes to see what that does, but I also plan to go in the sauna. It's an infrared one so no steam. Should I avoid that until I get the thyroid/adrenal/possible lymphedema stuff under control? I haven't found anything one way or the other.Thanks!!Deb :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 I joined a couple of lymphedema groups here at yahoo... I've learned a lot from those folks, great groups of people. I'm gonna plug their groups. We tar and feather anyone that just posts ads for other groups... but we also encourage anyone that finds a group that pertains to what we are discussing to share it with the rest of the group. Yahoo has probably a million groups around the world.. there is no way that any one of us could ever go through the whole list to see what is all available... so... anywhere here goes. The first is mostly for lower leg lymphedema: http://groups.yahoo.com/group/LLLymphedema2/ This one covers all over lymphedema: http://groups.yahoo.com/group/Lymphedema/ Both of them refer to a web site specific for lymphedema (I think this is the link): http://lymphedema.omno.org This is the site that they sent me to learn more about manual lymph drainage.. the massage that has helped me so much: http://www.cancerbacup.org.uk/Site/Resourcessupport/Controllingsymptoms/Lymphoedema/Massage#9023 And, last, but not least.. this is the diagram that showed me where the nodes are on the head.... I combined the massage basics with these nodes: I am having such a strong feeling that more of us may be having issues with this, or should be aware of things BEFORE they get to be as bad as some of the photos that I've seen of people with severe cases of lymphedema. As for sauna.... for anyone with lymphedema they say emphatically NEVER to exposed the lymph limbs to extremes in temperature... so no saunas or anything like that. It has to do with how the fluid moves, it's being sooooo prone to infection, you can ask about how awful that part is.... They do say that swimming and water activities in water that is not extreme is VERY good for lymphedema folks, the water pressure helps to press against the skin and help to move the fluid. Even the heat of sun bathing is bad, the limbs should be protected from the sun... There is a LOT to learn... if we have a few folks that would like to discuss it a bit more here, great... otherwise we can car pool over to the lymph groups!!! hehehehehehe Topper () On Mon, 27 Sep 2004 19:44:59 -0000 "Deb and " writes: Hi Topper!I was reading your post about lymphedema. I'm so glad you found some relief for yourself. I wanted to ask you a couple of questions though if you have a minute. After I read your post I went on a search because I have had a problem with my extremeties swelling for some time and don't know what to do about it. I have had three different docs of the course of a year or so tell me it was no big deal. I saw some pictures of severe lymphedema and some more mild ones. I think I may have a mild-moderate case of it. My arms and legs look very similar to the photos I saw. I'm kind of scared because that's bad! Anyway, where did you find out how to do the massaging that you are giving yourself. Granted, I haven't had a lot of time to go looking, but I was wondering if there was a website that instructs you on how to do it that you could refer me to. You have been such a wealth of information already and I would trust any source you send me to. Also, I am headed to my health club to see if I can stand to work out for like five minutes to see what that does, but I also plan to go in the sauna. It's an infrared one so no steam. Should I avoid that until I get the thyroid/adrenal/possible lymphedema stuff under control? I haven't found anything one way or the other.Thanks!!Deb :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 I joined a couple of lymphedema groups here at yahoo... I've learned a lot from those folks, great groups of people. I'm gonna plug their groups. We tar and feather anyone that just posts ads for other groups... but we also encourage anyone that finds a group that pertains to what we are discussing to share it with the rest of the group. Yahoo has probably a million groups around the world.. there is no way that any one of us could ever go through the whole list to see what is all available... so... anywhere here goes. The first is mostly for lower leg lymphedema: http://groups.yahoo.com/group/LLLymphedema2/ This one covers all over lymphedema: http://groups.yahoo.com/group/Lymphedema/ Both of them refer to a web site specific for lymphedema (I think this is the link): http://lymphedema.omno.org This is the site that they sent me to learn more about manual lymph drainage.. the massage that has helped me so much: http://www.cancerbacup.org.uk/Site/Resourcessupport/Controllingsymptoms/Lymphoedema/Massage#9023 And, last, but not least.. this is the diagram that showed me where the nodes are on the head.... I combined the massage basics with these nodes: I am having such a strong feeling that more of us may be having issues with this, or should be aware of things BEFORE they get to be as bad as some of the photos that I've seen of people with severe cases of lymphedema. As for sauna.... for anyone with lymphedema they say emphatically NEVER to exposed the lymph limbs to extremes in temperature... so no saunas or anything like that. It has to do with how the fluid moves, it's being sooooo prone to infection, you can ask about how awful that part is.... They do say that swimming and water activities in water that is not extreme is VERY good for lymphedema folks, the water pressure helps to press against the skin and help to move the fluid. Even the heat of sun bathing is bad, the limbs should be protected from the sun... There is a LOT to learn... if we have a few folks that would like to discuss it a bit more here, great... otherwise we can car pool over to the lymph groups!!! hehehehehehe Topper () On Mon, 27 Sep 2004 19:44:59 -0000 "Deb and " writes: Hi Topper!I was reading your post about lymphedema. I'm so glad you found some relief for yourself. I wanted to ask you a couple of questions though if you have a minute. After I read your post I went on a search because I have had a problem with my extremeties swelling for some time and don't know what to do about it. I have had three different docs of the course of a year or so tell me it was no big deal. I saw some pictures of severe lymphedema and some more mild ones. I think I may have a mild-moderate case of it. My arms and legs look very similar to the photos I saw. I'm kind of scared because that's bad! Anyway, where did you find out how to do the massaging that you are giving yourself. Granted, I haven't had a lot of time to go looking, but I was wondering if there was a website that instructs you on how to do it that you could refer me to. You have been such a wealth of information already and I would trust any source you send me to. Also, I am headed to my health club to see if I can stand to work out for like five minutes to see what that does, but I also plan to go in the sauna. It's an infrared one so no steam. Should I avoid that until I get the thyroid/adrenal/possible lymphedema stuff under control? I haven't found anything one way or the other.Thanks!!Deb :-) Quote Link to comment Share on other sites More sharing options...
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