Lymphedema: Say I have lymphedema from head to toe... - LSN

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Lymphedema

Say I have lymphedema from head to toe swelling and nobody can help me the therapist is good for nothing what do I do

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Are you in the UK or further afield?

Who diagnosed you with 'global lymphoedema'? Do you have lipoedema?

Would you consider treatment at one of the large European clinics such as Foldi or Wittlinger? (Germany/Austria)

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Cold pressed Castor Oil and Lemon or Citrus essential oil. Pour some castor oil in your hands and then take 5 drops or so of lemome essential oil and rub it wherever you habe swelling. Not sure what stage you are in but if you have started to develop fibrosis, then take bromelain supplements as well. It will help to break down the protein that may be developing.

A REBOUNDER should BECOME YOUR BEST FRIEND! Just 5 min at least to detox and to drain lymph. Longer if u can tolerate it!

Plenty of water!

I have beem diagnosed with primary lymphedema in both legs. Have spent tens of thousands on treatments, bandages MLD and nothing has worked as well as these natiral remedies.

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Hi Helpishere. I found your information very good. I have Lymphedema in both legs and abdomen following Nov. 2017 bladder removal along with about 28 lymph nodes. MLD, compression, everything I try is not enough. Decided on a rebounder for Christmas, but wonder if the lower priced ones are any good. Do you have an opinion? I have never tried one, but will have to get one with a bar, as have bad knees and back. Hope I won't make that worse with bouncing. Need to try it though!. Thanks, too for the ideas about bromelain, castor oil and citrus oil. Will try that too!

Grateful, Mary Kay in Butte, Montana

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I have a lower priced one from Walmart. I know its not the best but it gets the job done. Just 5 min a day is gpod. There are better ones out there of course. Even if ypu cant stand to bounce you can sit and bounce. Hope this helps.

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Thank you, Helpishere. I just ordered one with a security bar. Off on a new adventure!. Hope Santa will let me use it before Christmas!! ~Mary Kay

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The thing is with a rebounder is that you don't have to bounce. You can just walk on it and let the natural movement of the rebounder do the work for you. Once you feel confident doing that then you could move to marching on the spot with your rebounder. ( you must make every effort though to raise your knees if marching to a height level with your hips. After a good three months you should feel confident enough to do a little bouncing. Combining this with losing weight means you could eventually skip or do hopping routines and exercise using your rebounder. Good luck with whatever you choose to do.

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Thank you, DeadfootMo. I will use it just as you say - walking until more confident. Sure hoping it works!

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I hope it works for you too. I know that this has been my best year for the reduction of the swelling in both my legs and feet, despite all the worries and stresses of a temporary move, spending weeks packing and taking stuff to charity shops and then putting all my furniture and personal things into storage and then when I get my home back after the council modernisation programme, I found myself totally upset with the mess they had left my walls in after the rewiring, the placing of new gas piping, radiators renewal. And a none centred new electric fire... But I came home to find the walls in a mess with holes masses of striped paper and in far too many places down to plaster work and I just cracked into tears, as I simply couldn't afford to have the whole place decorated with being unemployed, this meant I somehow had to do some of it myself. The awkward thing is it had to be done before I could move back in as after that would have been a disaster. So I gained as many quotes as possible for some areas and the rest I dealt with myself, lymphoedema and all my pains took second place. Then the next job was getting my stuff back in and I now know that storage and removal men are a breed apart. Totally illogical in where they put stuff despite all my boxes being labelled with the rooms they had come out of, so another horror was about to take place with the carrying I had to do, too and fro from one room to the next for about three weeks only to discover that two of my boxes had not been returned so some personal stuff is missing. But the news gets worse there was no come back on the storage company because I was not their client,. as the council was the client, so all of my late summer one party has passed the problem back and forth like a ball and I am still missing two boxes of personal things in the run up to Christmas. But the only good thing to come out of it all is that I only took out a loan for £2.500 to get my home into shape and with the work I did myself this was a lot of exercise up and down ladders, back and forth to DIY shops etc. At the same time I had my re-bounder in use for the first time in the ten years I have had it and I can tell you it has worked for me. And the added bonus for me has been that all my shoes from which 90% of them did not fit at the start of Easter by the time Autumn was here all of them fit and they still do now, even though the cold winter weather has made me I reduce the amount of exercise that I do. So stay confident and take it slowly is my tip.

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Thanks again, DeadfootMo. Wow, you have really had a time of it. Amazing how we get things done that seem impossible. "One step in front of the other" is the only way we got through my bladder operation a year ago. But you really had a bunch of obstacles to overcome! I hope you get your personal boxes back. I had a similar experience ~25 years ago. I was moving and had put two boxes of my personal things -- ALL my pictures and treasures of 50 years in the dining room. But the things to be picked up by the mission thrift store were also in that room. A couple family members were doing the last minute clean up and told me to get some sleep, that they would take care of the mover and the thrift store. Long story short, it was two months before I realized my pictures, etc. were gone. The store said they never saw them... Gone for good. But life is exciting enough that I decided I just needed to make some new memories! And I have. I hope you get your things back

My rebounder has arrived. It has a safety bar to hold onto, and it is oval shaped because I couldn't get the safety bar on anything smaller than 40+ inches. I am grateful for your correspondence from half a world away, and wish you the very best as you continue to keep the swelling down and become more agile along with it! Happy holidays. ~Mary Kay

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Thank you and that is excellent news about your re-bounder coming with a safety bar. Mine doesn't have one, but when I bought mine I don't think they put safety bars on them. I also did that terrible thing I hid it away for 5 years but approximately 2 years ago, I realised needed to use it. So good luck for Christmas with one foot in front of the other. Bless you and yours and here's hoping that Christmas a really good one.

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To Deadfoot Mo,

You really have had a terrible time of it. I really hope that despite everything you had a good Christmas and that things will be better for you in the new year. And that someone finds your boxes. I hope in the meantime that you have had friends and family helping you. Btw some places seem to sell bars on their own if you need one.

Take care and best wishes, Midi. [I myself am on here because my mum has developed lymphedema after getting breast cancer (for the second time). She is mainly ok now except that she will have lymphedema symptoms for the rest of her life and I am looking for any info that might help her. So I thank everyone for the great info and advice.]

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Thank you so much for your kind thoughts. Christmas is continuing to be a good one but I do seem to get things going wrong in multiples. I have cellicitis or cellutitis in my left foot at the moment and despite winning the battle again it is the second time I have had this in 4 years, in the same foot. So I am thinking I must be predisposed to it, so my left foot must be my week foot. Anyway I hope Christmas is going well for you all here. Enjoy. Can't believe its only the 5th day of Christmas today.

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I think you may be in the US, if so does your current therapist have a CLT-LANA certification (the most advanced LE therapist certification in the US). If not then find a fully certified therapist through the search feature below. If you’re in the UK then you can source a qualified therapist on MLDUK.org.uk.

If you have a LE diagnosis then it’s important you’re fitted for compression garments. Do you do daily SLD on yourself? Its helpful and important to promote drainage. The instruction below is for legs and she gives instruction for all limbs, trunk and head on utube. Drink lots of pure water and stay away from packaged/prepared foods and salt.

lymphaticnetwork.org/living...

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I had swelling all over, and wanted to stick a knife into my puffy legs. But eventually using a combination of exercise, MLD and machines I am back to normal. I am NOT medically qualified,but wrote about what worked for me on aftercancers.com see under Lymphoedema category for different things I tried and check them out with your doctor.

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This is what I thought, after 2 years of swelling even in my eye lids I’ve finally found out I have a rare kidney disease, have you had your kidneys checked? X

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Talk to a couple chinese medicine doctors/practitioners and find one that you like that has some insight to helping with lymphedema and edema. Chinese herbs and tui na (chinese massage) helped me dramatically reduce my primary lymphedema that I had had for over 20 years. Its not instant but it works and it is natural so there is no downside to trying it. Good luck!

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