Lymphadeoma sufferer 😢: Hi my name is Emma I am 4... - LSN

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Lymphadeoma sufferer 😢

Emma73tree
Emma73tree

Hi my name is Emma I am 43 years of age and would love to hear from people with the same condition as me and would love to hear any information that could help me reduce the bulk of my condition I've tried allsorts but no luck in reduceing this horrible condition .

23 Replies
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Are you not under a nurse for this? They can show you self massage and check your compression sleave/bandage are working. 

Emma73tree - are you in the UK?  Have you been referred to a Lymphoedema Clinic?  Where is your lymphoedema?  Arm?  Leg?  Have you been provided with compression garments?  Have you been shown how to do self-lymphatic drainage?

Emma73tree
Emma73tree
in reply to Lynora

Hi lynora , thankyou for your message , I have lymphadeoma in both my legs I have had bandageing and massage therapy which took 6 months to have any effect then sadly I had cancer for the second time and had to have major surgery so therefor couldn't have my bandageing done any longer .i haven't had much help with my condition I had one specialist turn up to help with bandageing then she didn't come back after that .i feel quite alone with this condition , I just found a specialist who has the lymph press in haveing a two week trial of this product so I will let everybody know how I get in .i have nothing to lose by trying , I know that they are really expensive to buy maybe some fund raising I could do to help me buy this product .thankyou for your messages .kind regards .

If you have not already done so I suggest you contact the Lymphoedema Support Network lymphoedema.org. As well as a website they have a telephone help line (details on website).

Emma73tree
Emma73tree
in reply to AnneBury

Thankyou very much I will give them a call .

You must use your compression garments at all times.

Emma73tree
Emma73tree
in reply to floodc

I have had major surgery so bit difficult to put on at this moment in time thankyou for your time .

Hi Emma welcome aboard

I'm 48 now was diagnosed properly about 2-3 years ago. It is horrible living with this, there's no getting away from that, for me, getting my head around it has helped. 

It's my right leg that's effected. I am in UK. 

The access to treatment seems to vary quite a bit depending where about you are. I second all the advice you have been given in earlier posts - all good 

Emma73tree
Emma73tree
in reply to DebiMcC

Thankyou , I am going to London to try the lymph press I will let you know if it's effective or not , this condition is so horrid I get embarrassed even going anywhere .i can't find any proper shoes to fit that look nice or any clothing except in asda they started to have black jeans which are 20 pound each called wonderful very good for people who like to wear trousers . 

Sorry mistake not wonderful but called wonderfit . 

The Lymphadaema Support Network gives excellent advice. Well worth joining. They also lend a sympathetic ear

I have a flat knit sleeve but our Lymphadaema Clinic is severely overstretched and under funded.

If you need mld you will probably have to pay a specialist physio, depending on your area. Probably not a help but I know in France and Spain mld is part of the training for a physio. Cost is cheaper, so if on holiday make enquiries. Good backup

Hello Emma, welcome to the struggle

I agree that Lymphoedema care is very spasmodic in the UK and my surgery collectively knew nothing much about this condition. So, I became a member of LSN, sent off for quite a lot of their most helpful and informative leaflets (for which a donation is needed), photo-copied them for my own use and now plan to give them to my GP in the hope that the Practice as a whole will read them and educate themselves!

The only advice I have had so far is how to care for the skin on my feet and legs so my GP is actually doing some research herself which is a good sign. As for compression garments...well, it's a wait and see and I will bring this up at my next appointment.

Hope you too can receive help and advice wherever you are. Let us know how you get on

Emma73tree
Emma73tree
in reply to lizzie66

Hi that is very good of you as my doctors have no knowledge of my condition either , I know that you can get these pads called debris soft which get rid of dead black skin that we get from our condition , I am due to go to London next week to give the lymphpress a trial run for two weeks , I will let you know if this is effective .thankyou .

hi, and welcome to the group. I was born with full body lipodema and then in 2009 had pancreatitus and needed lots of live saving fluids and this caused lymphodema on my torso and legs. 

my gp new nothing of either condition, it was a vascular nurse who correctly diagnosed my condition in 2011. i am now 51, i do attend lymphodema clinic every three months, wear the full length compression garments, which help reduce the size and shape. i now carry over 20 stone of lymphatic fluid and lymphodema fluid, so am limited with mobility, i have a wheelchair from Nhs, my husband does mld every day, which helps relieve the discomfort, then the lipodema pain is high, so I am lots of medication, and oralmorph as needed.

i have registered myself disabled with the local council, on their website, and this got me an occupational health visit, and now i have a funded tilt in space electric chair, and a bariatric electric hospital bed, and other aids and grab rails.

i have never been able to lose even a llb of weight, pitting on an average of 1 stone a year in lympatic fluid. with lipodema a person can not lose weight, as its not being over weight its the lymphatic fluid storing in the adipose tissue. i do the live and eat right for your blood group, and I have started to lose inches all over my body, so fingers cross this continues. its really easy to do, my blood groups B-, and there are foods i should avoid as bad for lymphs, and foods that are neutral, and foods that are beneficial to help my body, so i have stopped eating the avoid catergory, and eat daily some from the benefit catergory, i have been doing it for a month so dar, and fell optimistic. 

with this condition, I find, I have to research and be the expert as gp's have no idea, consultants not interested,. i got a referral to st Georges in London, who confirmed the diagnosis.

i keep my spirits up,, as I am self employed as a psychotherapist, and ave just become a grannie, to a beautiful grandson. 

hope this might have helped. with warmth Cathy,in  Cumbria

I had a very bulky arm and had liposuction last October. The result has been very good and I don't find the sleeve wearing onerous. Have you looked into this at all. Catolo

Emma73tree
Emma73tree
in reply to 62carolo

Hi thankyou for your message , I have had the massage and bandageing I started to get results then found out I had cancer again for the second time I had major surgery on my back and therefor couldn't carry on with my bandageing on my legs .both my legs are bad and bulky I have found a place in London to have two weeks trial with a Lymph press so I will let everybody know if this is effective treatment thankyou .this condition is so horrid it makes u feel like a beast .😢xxx

Emma73tree
Emma73tree
in reply to 62carolo

Hi thankyou for your message , I have been wondering about liposuction on both my legs but have been told that it may not work or be very effective , I am going to London to try the lymphpress for a two week trial so I will let you know how I get on .

Hi Emma you haven't said where you have lymphodema mine is in the arm and trunk and is  secondary. I'm under a lymphodema practice who manage my compression garments if it swells I get massage treatment and bandige I also use a trpudio movement system  tripudiomovement.co.uk it's on a dvd . hope you get the help you need as it dose depend on where you live good luck .

Emma73tree
Emma73tree
in reply to Shazp

Thankyou for your message , I do apologise I have lymphadeoma in both my legs from past radiotherapy treatment .i have had bandageing but then couldn't continue with this as I found out I had cancer for the second time and I had to have major surgery .i have just found someone in London that I'm going to go to who is given me a two week trial with a lymph press I will let everybody know how well this helps .😢😢my legs are very bulky .

Hi all

We all become experts in our own conditions as our GPs rarely have any knowledge of lymphoedema never mind expertise. But it's defo worth taking in LSN leaflets and also LSN did a postcard about their Learning Module for GPs that you can drop off at your local practice. Good luck with lymphapress. There is someone on this forum who is now an agent for them I think.

Hi Emma, I'm 41 and have had Lymphodema dor over 2 years. Have had it since a mastectomy at that time.

I have it in my left arm and have to wear me a compression sleeve and glove the whole time.

I do hate it and am Embarrassed to wear t shirts in the summer! I guess I do get used to it and just think that other people have worse things, and this gets me through! 

Hidden
Hidden

Hi Emma ,I am so sorry to hear your struggle with this condition and that you were diagnosed with Cancer for the second time. I hope all goes well with the trial of the Lymphapresss , and look forward to hear your thoughts on this treatment . 

I have had  lymphoedema in my left leg and trunk ( lymph nodes removed as part of treatment for cancer 13 yrs ago ) for around 4 years now , leg has been huge at times ,but due to various treatments and lifestyle changes it now measures around 18 % larger than other leg over all . My calf and ankle being the worst offenders .I am horse mad and ride long distances  ( endurance riding ), my key aim is to keep my leg as small as possible so that I can ride my horses.

I agree with the comments posted earlier such as having good compression , and supporting treatments such as bandaging MLD etc if these can be used as part of your treatment . 

The best thing I have found to help me personally was making changes to my diet . I have moved to a plant based diet ie vegan . This made a massive difference to the volume of my leg after 4 days of making this change . I'm not sure if this can work for everyone as we are all different , but it maybe something for you to look in to ...

Good luck 

Cathyleigh I am under St.georges and they are the best,they try so hard for everyone.

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