Weight lose and lyphoedema

[Brandish54]

I have lymphoedema so when I had last problem with it what landed me in hospital I decided to try to reduce my weight as I was told this would help 4years later and I have lost over 25stone that also comes with problems. I now have problems walking because i have no strength to lift my badly swollen legs it is a real struggle everything is an effort I am even putting my back out because of weight of legs .I have only one side of heart working caused by extreme dieting even though I went to a class what doctor sent me to . To help with the weight also legs are swelling like mad which doctor has giving me water tablets for . I have farrow wrap straps on leg from ankle right to top every time you tighten they slip and cut into skin it's Sod's law the doctors have no clue they look in their books read up about it but have not experienced it so they have no clue I have explained till I am blue in face

[Lynora]

Where are you based Brandish54? Are you male or female (not that it's important - just gives a bigger picture)? What age are you? Are you registered with a lymphoedema clinic?

[Brandish54 in reply to Lynora]

I am female 61years old live in oxford I have had lyphoedema for 27 years but have only had major problems with it for 12years I have been to clinics for the lymphoedema only to be told there is nothing they can advise that doctors has not

[Lynora in reply to Brandish54]

Is it secondary, primary lymphoedema or lipoedema? Other than farrow wraps, have you received CDT (daily bandaging/MLD) or been prescribed compression garments? Are you seen at the John Radcliffe clinic?

Have the diuretics made any difference to the recent extra swelling?

[Brandish54 in reply to Lynora]

I have had pressure bandages they work but as soon as swelling goes down they stop using them and prescribe straps and water tablets have made no difference to swelling it was the lymphoedema clinic that told me they could do nothing it all comes down to costs .The district nurse passed me on to nurses at doctors they after a few months said just to get in touch if I have problems at the time I had weeping legs they said the y would supply with stuff I needed after two months that stopped leaving me with a bill of about £200 a month

[Lynora in reply to Brandish54]

Have you been prescribed diuretics because you have the heart problem? They will make no difference to lymphoedema. What form of lympheodema has been diagnosed? Primary or secondary or lipoedema? Are you arms affected? I'm not sure what else can be suggested if the GP's and lymphoedema clinic have nothing else to recommend.

[Brandish54 in reply to Lynora]

My arms are not affected what kind of lymphoedema I have never been told the diuretics I was prescribed I was told would help with the fluid in my legs I seem to be wasting my time as I feel ill enough as it is people should not have to fight for what they need as I was told by a nurse a while ago in these days you should not have to suffer in pain and discomfort it is a pity doctors do not think the same

[Brandish54 in reply to Lynora]

I am 61 years live in oxford female I have had several appointments at clinic only to get there is nothing they can suggest than the doctor already has i have had this for 27years but only had problems for last 12years

[aepyornis]

So you have only been diagnosed for lymphoedema. Would it be possible that you also have lipoedema? It could explain why your legs remain painful and swollen in spite of the heavy dieting.

Good info about the disease here: talklipoedema.org/

Otherwise, do you receive MLD? Have you tried other kind of compression, as the wraps do not seem to help much?

[Pjtrant]

I am so sorry to hear of your struggles. I live in the US and know that the health care coverage is a bit different but was wondering if you would have the ability to visit a lymphedema therapist who could better measure and fit you for compression garments? A good fit really helps. I think its great that you've lost weight but I think its also good to build strength and have.an excercise program that works for you. Swimming is a great exercise that would not only develop strength but would also not allow the heavy legs to cause difficulty for you. Do you have a regular GP that could recommend a healthier diet for.you? Losing weight should not cause.weakness unless it is.done too quickly. You still need to keep your strength up!

[veriterc]

Only suggestion I can say is to write to your MP, and copy in your local CCG. It may not help you - but if enough of us do this it will go down as a voter concern, and Govt. will try and curry favour (votes) and do something.

I have just been asked to write something, by an official body, but told NOT to mention how much better cancer care is in Europe - as UK can't access this treatment.

[greens42]

Have you had a referral to a specialist Lymphodema clinic who have more experience than GPs of different lymphodema issues. Your weight loss sounds amazing, I keep thinking if I just lost three stone it would change my life with Lymphodema.

[Brandish54]

I have been to several clinics Churchill and John Radcliffe they all said the same thing which is frustrating as I get no straight forward answers. I even had a specialist that the nurses got to come to me at the doctors surgery she explained in more detail but still the outcome was the same.

[sharon1234]

My heart goes out to you xx

[joanc]

I have just lost 6 stone and when I went for my lymphoedema clinic my measurements had gone down. I have gone from wearing size 4 compression socks to size 2.

[mlt_burford in reply to joanc]

well done joanc, loosing weight is difficult without lymphoedema. I myself have to loose half my current weight.

[Brandish54]

I am pleased for you the trouble I have is the swollen in my legs does not go at first when I started losing weight the legs went down slightly but then swelled with a vengeance and have not stopped the doctors and clinic have hit a brick wall of suggestions if I sit lay or put my legs up they swell more I cannot stand up all my life .Even the doctor did not believe me he said what makes you think they have swollen I told him they swell that much the straps cut in and I have to get up and walk about to help the swelling to go down

[A22-a]

A22-a. Dear brandish I also have been diagnosed with lymphoedema last year and have attended the Churchill clinic. At the moment I am wearing compression stockings (full length) I have carers who come to wash my legs and oil them.It is upsetting to be told that you will always have it but you have to try and remain positive .I dislike intensely the fact that I have to sleepin my stockings and they only get removed when the carers visit. I cannot take them off or put them on myself. Thank goodness I have good friends who call to seeme.

[Brandish54]

I have had it for many years going through clinic appointments and nurses coming to me to dress legs I was told by doctor years ago that I would have it the rest of my life and would have good and bad days . I thought great there is nothing I can do about it just get on with it . My legs from time to time break out in ulcers which can take up to 18months to heal because when they go they leave openings in skin which leek clear fluids . It is very frustrating as in the end it held me back from doing a lot of things I enjoyed . When I take my straps off my start swelling immediately but I have take them off to wash and cream legs

[Ainebh]

I would get referred to prof Peter mortimer in London to get a second opinion and takes both nhs and private patients. He is the expert in uk,