norberte

bl**dy h*ll ninewells - with your huge list of things to manage as well as the lymph, if i were you i wouldn't go anywhere near either type without talking to someone who knows their stuff

i know some mld practitioners use oscillating machines & you can buy them for use at home, but i'd talk to whoever you get mld from cos you need a very personalised assessment

i can't remember of arthritis (ra)'s on your list, but i've been warned away from anything like that cos it can very easily increase the inflammation in the joints

& i certainly don't need to pay someone to help me with that!

that's just my opinion, obviously - what do other lymphies think?

ninewells

Hi Norbete,

you made me laugh when i opened that....hehe, yip Arthritis is one in the long list, never knew this had any detramental effect on arthritis to, flippin heck am i glad i sold the machine.

Have to say the only pain i was ever left with whilst usuing it was in my neck, but i have crumbling discs vet 1 & 2 so i suppose i may have been agravating them by the vibration. It's not till afterwards you think of theses things.

(my hubby would have said the only thing being agravated was him LOL)

I think your spot on with this one, My Consultant will be having a list of can i can't i questions next visit hehe. But he is very good so i know he won't mind in the least.

Cheers

Ninewells

Kelmisty

I use a power plate at the gym, seems to help, which is for carrying out exercises on. My Lymphoedema is no worse for it and I'm sure it actually helps.

ninewells in reply to Kelmisty

HI Kelmisty, May be an Osilating plate, which are real good for you, but as you have said depending on our bodies and how we handle things.

Norberte said the same we are all at different stages of the condition and have different health issues so we all need to approach it with open eyes and take care of how our bodies react after we try it.

But glad that you are coping well with what you are doing. If it works for you i say go for it.

ninewlls

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Kelmisty

If you read the gym section of this they mention the power plate nhs.uk/ipgmedia/national/Ly...

Hidden

I have a redundant Circulation Booster...got it before I knew I had Lymphoedema.. in the hope it would help my legs...When I did get diagnosed last November I asked about using the Circulation Booster.. my Lymphoedema Therapist told me no way was I to use it... as it could worsen my legs... I guess it is best not to invest in these type of machines til a diagnosis is known...oh well I was just trying to help myself cos gee my GP had no clue...I also told him that I got the circulation booster and he at that stage thought it may help.. oops to him

ninewells in reply to Hidden

Hi Ronlin, I nearly bought this after seeing it on the TV, just shows you we think we are helping. If i hadn't met that rep i am sure i would be in a far worse state than i am. The only reason we actually approached him was he was using a machine to help horses with bad back problems and i got speaking to him about that, i sat down on a chair that was vibrating and you know that its like i said ohhh this is good, he actually just said, in a fly away comment as long as you have never had any blood clots or suffer from lymph. I stopped talking and said what did you just say. he then told me and immediately stopped the chair i was sat in. I suffer from blood clots and Lymph so two of the worse conditions to have and sit in a chair that vibrates. Always say at the airport i am going to have a go on one of them, glad i never did. Oh my goodness what is your GP like. I still think that all GP's need to be educated or have a staff member that has been on a full course. Glasgiow University does courses just for the Medical Teams, why don't they all do this.

Hope your care improves from your GP

Ninewells

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Maggymo in reply to ninewells

Hopefully oneday all GPS will have had training and awareness for recognising and treating their patients who have Lymphoedema , etc before they are out practicing in the community, and more people will get help to manage the condition sooner !

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norberte

kelmisty, if you've got lymphoedema on top of a fairly healthy body you've got more options for what you can get up to

but a lot of us have to take other conditions into account as well - for me, there's no point in helping the lymph but making something else worse at the same time, 'cos i end up in bed .. which of course doesn't help the lymph

i can't remember who was doing karate with stockings off without any ill-effects, sorry, but the point you make's really important kelmisty: if you know all the contraindications for something & they don't apply to you, then give it a go & your lymphoedema won't be shy about letting you know if it's helping or not

ninewells, glad you stopped before you became too much of a pain in the neck to you or your husband!

those last bits of disc might be a bit crumbly but you want to hang on to them as long as poss

it's great that you've got a good consultant, ninewells - you don't 'arf need someone who's on the ball

meanwhile i'll look forward to hearing 'what ninewells did next'! & hope you're as comfortable & safe as you can be, juggling your long list

ninewells in reply to norberte

Hey Norberte,

I loved that last bit what Ninewells did next hehe, Have decided to hit the pool with a spalsh i will let the life guard know to keep an eye out for the human washing machine that may go off at the deep end hehe. better to be safe than sorry i suppose. I think this would be a more gentle way of getting all the muscles moving and helping the lymph move better. Starting it on Thursday will let you know how it goes. Have a busy day day today and a full day Wednesday with my big lad so not making excuses i promise. But hey thanks to all the other guys for answering also. Its so true we are all at different stages with or condition and we all have other illness to deal with, my husband alsways says he feels i have borrowed some one elses and its time to give them all back LOL.

What ever you are all doing do it safe but enjoy it.

Ninewells

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Kelmisty

Norberte, I know too well about other conditions Ive have scoliosis since I was 12 and my back is full of titanium, which has given me arthritis, bad shoulders, neck and hips just to name a few. But even with all that I still find the gym/exercise helps all of it, as long as you recognise your boundaries and try not to cross them. My comment was based on my experience and what advice I have had from my specialist, so please dont knock me.

ninewells in reply to Kelmisty

Hey Kelmisty,

thats ok, you sound like you have your own hands full without having any more problems. But glad that its working for you.enjoy if it makes you feel good.

Just shows you others have also found out that different machines have caused them problems, good to share this info to give us the choice, but also let us see it may be a side effect of the machine that has added to the problem, so we can also look out for this if we wish to give it a go.

Norbete is correct go for it but be safe.

Ninewells

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suzie_danger_girl

I have a similar experience to you kelmisty I have diabetes and a knackered hip and a disastrous back and a dead bone in my wrist which makes my wrist go like its broken if it gets a knock and I can't lean in it..... BUT whatever exercise you can gently and carefully do is best.

With lympheodema you need to develop a gentle sense of what is doing you good and what is not. The pokey thing about lympheodema is you get exhaustion, but doing no exercise at all gives you MORE exhaustion, and over time you will barely be able to go on. Conversely sometimes pushing through the exhaustion will give you energy as your system clears. When I come back from swimming I am buzzing and running around.

The trick is to work out when you need to legitimately sit down, and when you should push through the exhaustion to get better.

Clearly we all need to find different things we've able to do, but the only thing I know with utter certainty is inactivity is the enemy of lympheodema and WILL make you ill so gentle careful trial and error is the answer.

I personally used power plates at the gym also and they were great. But all our lymph is at different stages and states too. I have got rid of the soft stuff, and now I'm takling hardened 20 year old stuff which requires hard pressure and is excruciatingly painful. I use hard massage to break it up, then gentle mld type stuff to move it away. Were you to use such hard pressure on soft lymph you woukd cause damage and it would be detrimental.

So you see gentle super careful trial and error is key, because even on the SAME BODY what is right for one bit of lymph is wrong for another.

Its not a simple right or wrong answer, it it was I would just write a nice paragraph about how to cure it and we could all go to the pub. Instead you need to carefully try each thing and see what is right for you.

Hidden

Yes what works for one may not work for another...we each have to find what works for us at whatever stage we are at...I at the moment walk for at least 30 minutes per day...and I have just bought a stationary cross cycle which I am managing to pedal for about 5 minutes a day and pushing myself a bit more on it at times what I feel I can cope ... I am happy if I can manage 2 kilometres a day on it....

ninewells

Anything i have to pedal kills my knees, just sold my Row machine i had invested in after surgery thinking i was helping, but it was so hard going, not worth the pain.

norberte

kelmisty, i've messaged you

i want to apologise openly that you felt knocked by something i posted

it wasn't my intention to leave you feeling bad - i experience this forum as open, informative, supportive, helpful, & i don't want to do anything that makes it difficult for other people

ninewells, swimming it is - much safer all round (as long as you can swim)

& i find that going in with old sleeves, gloves & corset on & leaving my sticks by the side of the pool automatically gets the lifeguards keeping an eye on me .... can't think why!

i'm just waiting for some scars to heal (excuses excuses, i know) then i'll join you in the pool & meanwhile i'll stretch, work my diaphragm & move as much as poss

& ronlin, when the physio gives me the ok i'll join you on the bike - i'll be back to square one which is 1 minute of slow pedalling to 'warm up', 2 minutes of proper aerobic exercise pedalling then another 2 minutes of slowly cooling down

i don't know how far that gets me, but it doesn't burn that many calories .... but when i get the go ahead i'll start building it up from there again

suzie, couldn't agree more - we're all here to help each other out with ideas but we're also all different, which is part of what makes being a lymphie such a challenge

& i can't wait till i can ditch the post-op tight compression & get in the water - for me, it's the best even if wrestling the garments on & off isn't something i look forward to, i love being in the water & having a good workout that's safe for me, even if my technique's not quite what it used to be

have a good afternoon everyone

ninewells

Norberte,

That was very nice of you doing that, i dont think anyone will have taken your post as bad, but if were a little low then it may be understandable.

Will hold you to that day in the pool with me LOL...Need a date to put on the wall planner LOL...not that i'm pushy hehe.

You take care yourself.

Ninewells

naominorthenellis

I have used a vibration mat based on cycloid vibration and it is very different to the vibration plates that you find in gyms and health clubs. I also use the Lympha Press compression pump and trousers and they have been life changing for me in managing my bi-lateral lymphoedema. There are also full jackets and comfy arm sleeves.

violetta15 in reply to naominorthenellis

I hope you still check in as the whole vibration plate industry is saying the plates are good and there is so much info to wade through.. I am curious if what you are using is still helpful for you and say more about the machine.. what hertz that it is an oscillator brand etc..Cheers

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anami

Hello there, this reply is three years after the last one! I tried out a zen-chi machine once and it was so useful. I am on the lookout for an original machine. It is an oscillating machine. I donated the flawed version that i had to the hospital hoping their engineers would slow it down to make it useful for patients...

livingwithlymphoedema.blogs...

Maggymo

Hi nine wellsI enjoy reading your post as they are informative and your senses of humour comes through too.

I was diagnosed with Lymphoedema and Lipoedema about 3 years ago by a new GP who had some knowledge and awareness of what to look for.

I had suffered for over 10 years with oedema and painful heavy legs. I was treated for Fibromyalgia and chronic fatigue for years but I knew there was something more going on.

I also have arthritis in both knees and was offered surgery but I am trying to delay that until I retire in a couple of years if I can stand the debilitating pain and continue to work.

After researching online and finding more out about Lymphoedema I went back to my GP and asked her if I could be referred to see a nurse and I finally got to see a Lymphoedema nurse at my local hospice just before we all went into lock down last year. 2 years after my GP had informed me I had the condition. I was so grateful to meet the nurse, she is lovely, very gentle and compassionate and she measured me up for compression garments which have helped me cope better at work and keep the swelling down somewhat.

At first I never thought I’d manage getting the tights on ..and couldn’t as they weren’t big enough but my nurse arrange for more to be delivered and with I was pleased to master getting them on easier.

I asked my nurse about using a Vibro plate as was contemplating using one to help with balance, strengthen my legs and core and aid weight loss as I cannot ride a bike anymore or use certain machines in the gym as I used to.

My nurse suggested only using one on a low setting. It has helped with circulation and seems to have helped me break up hard swelling in lower right leg but I have been massaging my leg too after watching You tube videos on lymphatic drainage massage.

I wish there was funding available for us all to get massage or sessions in a warm pool free or at reduced cost as I cannot afford to pay for either

I did think once a week at my local pool may be affordable but they have their pool cooler than others to accomadate the professional swimmers that use it. I find the cold affects my arthritis and fibromyalgia symptoms.

I was told her do pools help but we don’t have one to access in my area.

I hope you enjoy your swimming

Kind Regards to you and everyone else on this great group

🤗

Maggymo

Hydropool