Does anyone use a stationary bike & find it moves the lymph directly into their abdomen & what do they do? I’ve primary lymphodeema affecting my body from the chest down. The pump, sld & overnight reduce things to normal. I was wondering does it reduce with time, the more you exercise & if it continues to reduce once you use mld, sld , exercise & the pump etc or does the stomach inevitably stay.... I don’t think I could bear that.... it’s bad enough going up over 6cms in abdominal girth following exercise, with or without compression .... I couldn’t bear it to stay up.... thanks. Meg
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How often are you using the bike? If you are doing ‘moderate’ exercise, it should be beneficial, not exacerbate swelling. Have you discussed your regime with your clinic/therapist?
Hi lynora, 3 times a week for 30 minutes on a low level because my spinal issues would only create pain if I work the worst leg , in particular, any more intensely..... it’s brilliant with my legs , empties them out completely of swelling & floods my abdomen which gets big on a daily basis anyway, but this is more. It’s possible it’s just early stages & once my legs even out & are more healthy with the bike, that there will be less to off load into my abdomen? I have no clinician... none in Ireland & my therapist (mld), would probably suggest experimenting & keeping a close eye on everything, measurements etc. I will see her again soon. Either way I have to continue to experiment as my mobility has deteriorated so much in the last 5 years, pain, etc etc. Despite the issues the bike is the best I’ve felt in a long time & although my mobility for any long distance hasn’t changed totally there are some improvements & I feel way better. By morning I have normal legs & only a small amount of lymph floating around my abdomen. Megs
Well if it’s making you feel ‘way better’ it’s obviously beneficial, so keep doing it! Make sure you enjoy it, rather than making it a chore. I use my bike, and have found ‘bike rides’ on YouTube, which I watch on my iPad while I pedal (arthritic knees) - currently touring Cornwall via virtual reality, whilst static in my Scottish bedroom!!
Remember you are dealing with ‘fluid’ and gravity at the same time. The lymph is reliant on muscle movement (and other systems) to move from the limbs, which can feel like trying to reverse Niagara Falls. It’s very encouraging to know that your lymphoedema reduces overnight.
Thank you Lynora, that’s reassuring. Your YouTube cycling sounds great! I’m at a local gym where the trainer has taught me lots of safe stretches with all of my issues. I find the more lymph I move the more alert I feel & generally way better... moves even more than swimming for me! 😊
I’ve got Primary legs and lower trunk/ abdominal LE and find draining my trunk before I exercise is essential to avoiding what you’ve described re lymph filling your belly.
Before your go on your bike, drain your front trunk to make space for lymph drawn up from your legs.
Below is link to a SLD video series that usually costs £25. It’s presented by a MLD trainer for Klose training. (Klose trains MLD/lymph therapists/CLTs worldwide, it’s very highly regarded). The videos are currently free, available via live stream. Just go to details, and then scroll down to the video for right lower extremity - follow the trainer’s instructions up until she starts on her leg. You should find it helps a lot to ameliorate your situation. After you finish cycling repeat the trunkal and tummy work, or do lymphatic breathing to stimulate drainage/move lymph out of your belly
My oncologist endorsed my idea of bike riding a couple years back. While I realize this does not address your lymph fluid displacement concern I feel it does speak to bike riding as a healthy, permissible activity. If I recall, he mentioned any moderate activity for my right leg would likely help facilitate circulation. Best to you,
Many thanks.. quite scary at times with no medical back up , knowledge based here, dr wise. A lovely consultant, one for the whole of Ireland, but it’s not her speciality as such... so your adrift! 😂
megs2, Thanks for this conversation. I'm learning a lot from it. My lymphedema came from 28 lymph nodes removed along with my bladder in Nov. 2017 (due to bladder cancer). I had ovarian cancer in 1977 and I still wonder what caused that. I do suspect industrial cavelier attitludes. We are all expendible. Like you, I'm in a rural place WITHOUT a lot of knowledgeable help - Butte, Montana USA. Two important doctors here thought lymphedema was edema and insisted I take water pills. So I go 120 miles to Missoula, MT for basic questions about my urostomy and about how to wrap my lymphedemic legs. But I definitely feel that this web link to healthunlocked provides important and cutting edge info. My extended family's in Donegal and I'd be there in October with my sister if it were not for the cramped lifestyle that I find I have with lymphedema. Butte Montana is an old copper mining town of only 35,000 and there is no one who can help people like us figure out how to deal with the complication of bladder surgery (my Irish mother died of bladder cancer in 1973). I hope to establish a local bladder cancer and lymphedema support group. Nothing here yet.
Methinks it turns out that the bladder cancer complication of lymphedema does isolate or marginalize people with lmphedema - a disability we did not bring on through our own negligance. Excuse that outburst,! But I believe I live in a fascist coutry, the USA. I"ve volunteered 28 years into Superfund environmental cleanup issues, asking whether bladder and MS and ALS and other diseases are related to mining contaminants like lead and arsenic and mercury, etc. The fascist in the White House today doesn't care. Health issues here in the US will not get any attention under the present administration. Sorry to get into politics. But how else might we and those we love get decent health care and get well?
I'm not near you geographically, but I sure do relate to the issues you bring forward. And I am very concerned about future generations and what we are leaving for them. PLUS, because of your experience, I will ask if I can use the cycle at my Physical Therapy appointments. Thank you!
Hi, I find you get a lot of valuable information on this site & would be lost without google & YouTube for gathering further info. I’m no where near a distance to major hospitals, unlike the distance you have to travel in America, the luckier aspect of Ireland... short distances! However no consultant who specialize solely or even a lot in lymphodeema care. Patients who get secondary lymphodeema due to surgery do get some care from their cancer specialists. But as yet there are no specialist clinics. What care I’ve got I’ve organised myself. My Gp is sympathetic & supportive of anything I come up with but has less info than me! You sound like you’ve been through the wars health wise, life is kind of tough & it’s as well we don’t know what’s out there for us! Pumping food full of chemicals etc etc cannt be too good for us but unfortunately there’s not much listening going on. I think the best way I deal with my problems health wise is to enjoy the good bits, keep as up to date as possible & source what treatments I can affoard & keep on plodding. Your support group idea sounds good, there are a lot of people with lymphodeema post pelvic /abdominal type surgeries particularly for cancer from what I’ve read. Would keeping the support group open to those post such surgeries w lymphodeema make the group more sustainable or do you have lots of people locally with bladder cancer & lymphodeema?... that w not be a good sign... my old nursing hat!! Good luck w it, a good support network keeps you sane I think. The bike definitely works for me. However as it’s a gym bike I can control the level of work I put on my legs, which is important as I get a great deal of increased pain otherwise due to my spine. I also at the moment, couldn’t affoard to swell post biking at this level, any more than I do. Using my compression pump the evening afterwards is essential & the sld or my stomach would remain about 6 months pregnant! But I have abdominal & leg lymphodeema & my abdomen blows up badly from day to day. The biking has initially to date made it worse, but improves post sld & pump & nearly completely gone by morning... back to my am pre bike, lymphodeema stomach! My legs have improved w the bike & my leg strength which was deteriorating rapidly has improved, even over only a 2 month period & I feel better. It makes me feel safer that I might be able to slow the frighteningly rapid decline in mobility that I’ve experienced over the past 5 years, keeping in mind, that like yourself but for different reasons, I have other health complications like many on the site, which increase the lymphodeema issues/complications. I’m also retired on I’ll health grounds & was able to invest in a physio Med, deep osscilation machine, expensive, which helps with my sld & is good for emptying out my abdominal lymphodeema when it’s particularly bad... not quite what I planned to spend retirement money on but blessed to get it. Good luck with your biking , sometimes only you can figure out what’s good for you, the stationary bike is a safe way to do things gradually I guess! Megs
Thanks for the very informative reply. I'm in physical therapy twice a week and expect they'll let me use the stationary cycle soon. My left thigh has started swelling much more than ever in the nearly two years of lymphedema. This occurred right after I had a new procedure done to help the knee pain. It is radiofrequency ablation. I've had it done to my back many times, so took the risk of eight needles into the knee, thinking it would work. Instead it got worse. I really need to get some good leg wraps or a pump. I'm intrigued about your Hivamat deep oscillation device and will read up on it. I've tried laser LED devices, but can't say they did anything notable. Just got a TENS unit to try. I have a mini trampoline, and I'm just wishing I ould figure out how to create a tall bucket to stand in so that the water pressure would push the lymph fluid up to my neck. (A hydrologist told me it would work.) Maybe I'll find some kind of plastic tank that could be repurposed, but then I'd need a ladder and a place to put it. So my better idea will be to stop worrying about going out in public in a swimming suit. Just haven't been that brave yet. Again, thanks for your note, not to mention your bright outlook passed along to me. I have had some fun lately ...just need to enjoy that. Have a great day. ~mkc
😊 Good luck with it all.... it’s all a bit of a mind field really! .... like a full time job . I’ve noticed people here using shorts and a T-shirt to swim in at the pools... seemed like a good idea to me... it’s hard enough having your body shape going all over the shop with lymphodeema etc, the shorts etc seemed a good way of being able to swim in peace.
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sld motivation tips anyone?
Compression garments
Pubic/Pelvic area swelling
Bike Ride
