Advice on small trampoline for lymphoedema: Hi, I am... - LSN

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Advice on small trampoline for lymphoedema

1965Katy
1965Katy

Hi,

I am considering getting a trampoline to use for my lymphoedema.

Background: I developed secondary lymphoedema in my left arm following breast cancer surgery last November and then radiotherapy/tamoxifen triggered four limb late onset primary lymphoedema which showed on my lymphoscintigram. I only get symptoms down the left side of my body including left side of my face. I am devastated.

I am 54 and have always been skinny and really into my exercise particularly running. I have now noticed that running makes my symptoms worse so I go swimming every evening which helps, but if I miss one day I feel back at square one. I also have quite bad osteoporosis and need to do weight bearing exercise for my bones.

Anyway, I have read that trampolines are good for lymphedema and also good for osteoporosis so I was wondering if anyone had any experience using trampolines or advice on which ones are good.

Thank you and best wishes

32 Replies
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I used to do a clalaa called boogie bounce for the reason its good for lyphies as i call is lol it seemed to be great for a while but then i found it seemed to stop helping of anytjing i coukd struggle making it through hroygh the clapss sometimes. Maybe before you invest you try a few classes like that pand see how you go

Jclinton
Jclinton in reply to Erika_N

I was told that would help. I can't because I have osteoarthritis and osteoporosis. I sure hope it works for you. In y case .I need a miracle

Erika_N
Erika_N in reply to Jclinton

I think its a lottery to some degree some things work realky well but for no reasin what so ever your body will just say nope and you have to find new routes and plans im a firm beliver try everything till you find your path that works for you x

1965Katy
1965Katy in reply to Erika_N

Thank you Erika_N, I can't really go to classes because of Covid as I am immunosuppressed. I know I go swimming but I am taking a risk and I go when it is very quiet. I am also worried they are going to close swimmming pools if there is another lockdown. I like the idea of being self sufficient and being able to do all my exercise at home or outdoors. I will see if I can find any Youtube boogie bounce classes! You're right, it's all trial and error with this condition. Thank you for your help x

1965Katy
1965Katy in reply to Jclinton

Thank you Jclinton, I hope you can find other exercise that helps you

StellaM
StellaM in reply to Jclinton

Hi JCLINTON,do you know why its not good for people with osteoporosis and arthritis? I know what you mean about miracles,I wish I could wave a magic wand and free us all from this horrible illness x

I use a vibrapower and find it quite good. You never know exaxtly.

I only have secondary Lymphoedems in my left leg though.

1965Katy
1965Katy in reply to roysome3

Thank you roysome3, I will have a look into vibrapowers. For some reason the my left leg and left buttock are most affected by my lymphoedema even though it all started after treatment for breast cancer. Apparently this can happen, rarely. I am so pleased you find your vibrapower helpful. Thank you for your help x

I got lymphedema after my ovarian cancer surgery 4 years ago. Swimming helps me a bunch too. So do weights. The more muscle I get, the better my lymphatic system works. I’ve also found that biking really helps. I did try running but it seemed to make one leg flair up a bit. Plus my knees don’t like running. I’m 47. I also have a mini trampoline and a big one (for my kids). I really feel like it’s helped but I’m not positive. I don’t jump super hard or long.

The best thing besides swimming that I’ve found (since I don’t have access to pool anymore) is Solidea leggings. My OT recommended them. They go all the way up over my belly and I exercise in them. It’s like a mini lymphatic massage. I feel like my legs have improved since getting them 7 months ago. They are expensive ($130) but I am desperate to keep this under control since I am so young. I hope this helps! I’m so sorry you are having to deal with all of this.

Perido
Perido in reply to JanCan15

I was wondering about Solidea leggings. May I ask how they come up size-wise - would you recommend going by their size charts?

I have secondary lymphoedema on my right side (since cervical cancer trreatment) extending lower abdomen to toes and it's worse below my knee. I'm wondering about having a Solidea legging with a compression wrap below the knee then compression toe caps + compression anklet. That way my knee should have good mobility - I'm usually in a class 2 flat knit stocking which works well but restricts my knee.

JanCan15
JanCan15 in reply to Perido

What is a class 2 sock? Is it a 20-30 compression? That’s what I wear in knee highs. I had a flair up where one thigh was getting affected. The Solidea leggings helped it. I feel like when I wear the leggings, I have less swelling in my feet and legs. Sort of like after I swim. But I hate swimming and don’t have access to a pool. My therapist says the little waves in the leggings are similar to a lymphatic drainage massage.

As far as sizing. My therapist recommended an XL but I went with a L. They stretch out a bit as you wear them. And the sizing chart seemed bigger than what I usually wear. I usually wear a L in everything. So I guess I’d go a size down. It’s so hard to know!

I ordered the long legging and then a pair of the ankle socks since I do get some swelling in my feet occasionally.

Let me know if you have any other questions! I hope this helps. So glad we can all help each other out.

Perido
Perido in reply to JanCan15

Hi, thanks for sharing about the Solidea sizing - I guess it might depend how one's own measurements sit within the sizing range e.g. if on the lower end of a medium then maybe go down a size. I checked - my class 2 stocking is specified as 23-32 mmHg compression.

Like you I'm not keen on swimming (unless the weather is crazy hot) and it's such an ordeal trying to get the stocking on in a tiny changing cubicle. I think I would only be really motivated to swim if somehow my lymphoedema miraculously disappeared when I got out the water and remained that way for a good few hours without compression - I wish!

I think it's good to try out different things to find out what works and what doesn't - trial and error - and as you say helping one another and know we're not alone in this thing.

I also have found that doing a little self drainage massage/stretching after exercising everyday helps. I noticed you live in the UK. Do you have an occupational therapist that specializes in lymphodema?

1965Katy
1965Katy in reply to JanCan15

Hi JanCan15,

Thanks for your lovely and very helpful reply. I am sorry that you are having to deal with this condition too.

I agree with you, the more muscle the better and stretching really helps. I get swelling around any tight muscles. I walk my dog every day and always fit in exercises from the helpful LSN website as I'm walking and waiting whilst my dog sniffs around. I try to filter exercise into my normal activities throughout the day rather than doing all at once, apart from swimming and previously running. Cycling is good for the lymphoedema in my lower leg but not good for swelling in my left buttock. Regarding your mini trampoline, when you said 'I really feel like it’s helped but I’m not positive', what did you mean? How often do you use it? I'm wondering whether it would be worth buying?

I wear a compression sleeve on my left arm all day every day and I find that really helpful.

I haven't managed to get the right compression for my legs yet. The tights I have been prescribed are graduated compression from the bottom and I need it all the way up. I also don't like wearing black tights with shorts or under jeans. I like the sound of your Solidea leggings. It's nice to look as normal as possible! plus I like wearing leggings anyway. I looked at their website but wasn't sure which ones you mean. I am based in the UK but I am sure I could get some. Did you mean these ones ?

solidea.com/en/acquista/wen...

Also, did your OT measure you for them or did you just go on the website size guide? I am seeing my therapist tomorrow for the first time in ages because of Covid.

I'm not very good at doing SLD and I find it quite depressing but I know I should. I haven't really been shown how to do it properly as my session with therapist stopped abruptly in March because of lockdown. I prefer exercise and stretching, ideally with compression.

Anyway, thanks for your help.

All the best x

JanCan15
JanCan15 in reply to 1965Katy

Solidea Active Massage Silver Wave Compression. I don’t think what you had was the same. I think it’s from the correct company though. The site I used was solideaus.com They are made in Italy. They also have it in a sleeve for your arms. They have little ridges all the way up. And my therapist measured and recommended a size but I double checked it.

And I’m not sure about the trampoline cuz I don’t use it regularly. I’ve seen no proof it works. I just feel good when I use it. But I have seen proof that the leggings have helped.

And I know the self massage also helps. But I’m like you, it’s depressing that I have to spend so much time on self care at this age. So I don’t do 20 minutes probably like I should. I just add a few minutes to my stretching.

And the biking may not work for you it sounds like. It might be hard on your arms too.

Good luck! Keep me posted.

JanCan15
JanCan15 in reply to 1965Katy

I just double checked. The leggings you showed me aren’t the correct ones. It should say Line Silver Wave. You should little ridges in the fabric. COD 0355A5. That might be the item number.

I also wear compression knee highs everyday for my legs. But these leggings really give my legs the extra help- sort of like swimming does.

1965Katy
1965Katy in reply to JanCan15

Hi JanCan15

So sorry for slow reply, I had a bit of an awful day yesterday.

Thanks for the info on the Line Silver Wave leggings. I had a look online and it it said they were semi opaque. Do you have to wear them under clothes or can you wear them like normal leggings? Do you wear your compression knee highs at the same time? I know that sounds weird but I am considering wearing a compression stocking on top of my compression tights on my left leg, my bad leg. I can't believe I am writing this, as this time last year I had no breast cancer and no lymphoedema. I was slim, fit and quite glamorous! I saw my MLD therapist yesterday and she suggested I wear tape on my face when I'm at home or asleep. It's unbelievable how much things can change in a year!

Anyway, I am so pleased the leggings help you.

Thank you again for your help. x

JanCan15
JanCan15 in reply to 1965Katy

I’m sorry yesterday was bad. It’s crazy what cancer treatment can change! And you’re having to deal with arms and legs.

Good question. The tights are a little see through. I wear athletic shorts, short tennis skirts or a casual dress over them. And I don’t wear my compression socks over them. I do wear their short sock (silver wave) on my feet since the legging doesn’t include a foot. If you do wear compression at the same time, I was told to put it over the leggings. You want the wave pattern next to your skin. I think it would be hard to get a compression sock over the legging but doable. The legging isn’t super tight so it will move a bit.

I sure hope something helps! I’ve heard there’s new imaging to see what your lymphatic system is doing but I’ve never done it. It’s called ICG or something.

Perido
Perido in reply to JanCan15

I've had an ICG lymphography scan - it cost me about £700 (in the UK) 2 years ago. I'm pleased I had it done as it gave me more insight into how my lymphatics are malfunctioning, which in turn has helped motivate and inform management of my lymphoedema. I really think the scans should be widely and routinely offered to anyone who has had any cancer treatment which has given them a risk for lymphoedema. I'm maybe biased but in my view the delayed diagnosis and haphazard treatment options for lymphoedema is shameful - on a global scale.

JanCan15
JanCan15 in reply to Perido

Thank you for your response. I’m going to look into what’s offered here in the US.

Hi JanCan15,

Thanks for your lovely and very helpful reply. I am sorry that you are having to deal with this condition too.

I agree with you, the more muscle the better and stretching really helps. I get swelling around any tight muscles. I walk my dog every day and always fit in exercises from the helpful LSN website as I'm walking and waiting whilst my dog sniffs around. I try to filter exercise into my normal activities throughout the day rather than doing all at once, apart from swimming and previously running. Cycling is good for the lymphoedema in my lower leg but not good for swelling in my left buttock. Regarding your mini trampoline, when you said 'I really feel like it’s helped but I’m not positive', what did you mean? How often do you use it? I'm wondering whether it would be worth buying?

I wear a compression sleeve on my left arm all day every day and I find that really helpful.

I haven't managed to get the right compression for my legs yet. The tights I have been prescribed are graduated compression from the bottom and I need it all the way up. I also don't like wearing black tights with shorts or under jeans. I like the sound of your Solidea leggings. It's nice to look as normal as possible! plus I like wearing leggings anyway. I looked at their website but wasn't sure which ones you mean. I am based in the UK but I am sure I could get some. Did you mean these ones ?

solidea.com/en/acquista/wen...

Also, did your OT measure you for them or did you just go on the website size guide? I am seeing my therapist tomorrow for the first time in ages because of Covid.

I'm not very good at doing SLD and I find it quite depressing but I know I should. I haven't really been shown how to do it properly as my session with therapist stopped abruptly in March because of lockdown. I prefer exercise and stretching, ideally with compression.

Anyway, thanks for your help.

All the best x

My heart goes out to you.I have blood cancer, breast cancer and had vaginal cancer years ago. After many years I developed lymphedema in my right leg. It is devastating. With all of my other problems lymphedema is the worst.

I swim every day and love it. I don’t really know if it benefits the lymphedema leg but I know it can’t hurt. Because I have blood cancer and my blood is extremely thick and slow moving, the trampoline is good for that as well as the lymphedema.

If I were you I would purchase one- it’s a very small price to pay in case it does help you. Everybody is different. I can’t imagine it could hurt. Especially if you have osteoporosis, I’m pretty sure that movement like that is a good thing. Good luck to you. You will get through this.

1965Katy
1965Katy in reply to Lynneza1

Hi Lynneza1

Thank you for your message and sorry for my slow reply.

I am so sorry to hear that you are having to deal with so much. I feel the same as you, lymphoedema is much worse than all my other conditions too. It's a real struggle.

You're right, I should buy a trampoline and give it a go. My MLD therapist yesterday said I should give up running so I am pretty disappointed as I have always loved running and used it as my prozac. If I could replace it with trampolining perhaps I would feel better. Do you have yours inside or outside? What type of mini trampoline do you have?

All the best x

Lynneza1
Lynneza1 in reply to 1965Katy

I have it inside. It’s not an expensive one. I bought it on Amazon. Good luck to you.

Danicatt
Danicatt in reply to 1965Katy

I bought a bellicon. it’s lasted years and it’s high quality.

Hi katy,.trampoline..I got one,a good one ( was v lucky and was helped with the cost,it was about £300. )

I dont think it can do much harm,as its supposed to be good for general health. I can only bounce gently on mine,which Im not sure is enough to help lympho,tho maybe it helps in other ways.

Ive had my mini trampo now for about two years or so.

I have other health probs which means I don't go on it as often as I wd like to,I just dont have the stamina,and am not sure if its a good thing or not to go on it at times when I have pain in my legs and feet,which is quite often!

Like JANCAN said tho,I too do feel good afterwards

Perhaps you could buy a cheap one,or a secondhand one,and see how you get on?

Start off slowly and build up very gradually.I dont think Ive ever been able to do more than twenty mins at the very very most,and I started off just a few minutes per time.

Even if you only jump on it for a minute or so several times a day,it could help.

I read its very good to jump/ bounce when you first get up in the morning,even if only for a minute or two. It certainly helps you to wake up!

I wish I could tell you that this is a wonderful solution to all our Lympho probs.... .... * 🙁* sigh*.....I had high hopes when I first got it.

But Im sure sbody who could use it more often than I can,and can jump a bit,might well get better results than I have

Ps mine is from the Maximus Pro range x

1965Katy
1965Katy in reply to StellaM

Thanks, that’s really helpful. I am going to invest in one. I’m bored of going swimming every night so this could make a good substitute.

StellaM
StellaM in reply to 1965Katy

Good luck Katy! Let us know how you get on!

I have LE in my right leg from toe to top of hip and have found that rebounding on a small trampoline really helps move my fluid. I am a triathlete and have struggled with running in particular since LE developed, but if I rebound for about 15-20 min before I run I find I can run more easily. I have a Maximus Pro - the metal springs make a lot of noise but its very good quality.

1965Katy
1965Katy in reply to SWOT

Thanks, that sounds encouraging. I long to be able to go running again. I really miss it.

StellaM
StellaM in reply to SWOT

Oh well done swot on the rebounding and running! Im glad it helps! Yes I agree,the maximus pro IS a bit squeaky!😁

I have had lymphoedema in my right leg for 10 years and I LOVE my rebounder (mini trampoline). I go to classes but I also bought a home one from Decathlon and do YouTube classes. It’s brilliant for getting the lymphatics going and it’s low impact, unlike running. It probably depends person to person but I love it. I always wear my garment when using it, and trainers too for extra compression

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