Lipoedema Diagnosis

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parfia
parfia Posts: 184 Member
in Health and Weight Loss
Hi,

I've just been diagnosed with a disease called lipoedema. It is "a long-term (chronic) condition typically involving an abnormal build-up of fat cells in the legs, thighs and buttocks".

When reading through information from the NHS professional who diagnosed me - it states that "Lipoedema does not respond to dieting – this tends to result in a loss of fat from areas not affected by the lipoedema, with little effect on the affected areas

Now I'm feeling really disheartened :neutral: I've lost over 40 lbs with little loss on my legs and now I just feel that if I continue to lose weight, I'm going to look even more out of proportion that I already do - I'm kind of at a 'what's the point?' moment :(

Replies

  • kuranda10
    kuranda10 Posts: 593 Member
    edited May 2016
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    I wonder what happens if you get liposuction and get rid of the excess fat cells?

    ETA: from WebMD (at a place to start) Lipo works!
    http://www.webmd.com/women/guide/lipedema-symptoms-treatment-causes
  • tristramtrent
    tristramtrent Posts: 257 Member
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    Some interesting info and links here, http://www.obesityaction.org/educational-resources/resource-articles-2/obesity-related-diseases/lipedeam-and-obesity
    I have lymphedema not lipedema and it has improved greatly through exercise and weight loss, although it is not perfect in the lower legs. The article shows that the conditions are related.
    Well done on your huge weight loss! You are heading in the right direction. It looks like the condition can be managed but you may have to push to get good treatment eg lymphatic massage therapy, to keep on top of it. My GP was very uninterested in my lymphedema despite it having caused me a serious lymphatic infection in January.
  • parfia
    parfia Posts: 184 Member
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    @kuranda10 - Yes, lipo would work but unfortunately would cost me around £4,000 which I don't have - believe me I'd be there now if I had the money!! haha
  • JeromeBarry1
    JeromeBarry1 Posts: 10,182 Member
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    Cheaper in Cuba.
  • parfia
    parfia Posts: 184 Member
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    @JeromeBarry1 - but what about the plane tickets!?
  • yirara
    yirara Posts: 9,403 Member
    edited May 2016
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    Oh gosh.. liposuction is generally not available under the NHS! Is there a lipoedema charity? If so contact them and see what they have to offer. If nothing else I'm sure everyone even on a small income can save a few pounds each month.

    Consider what is least essential for you; prioritise!: get rid of tv subscription as soon as that's possible and use freeview (I use freeview over internet, using a 16gbp month internet subscription). Use PAYG mobile as soon as your current contract allows you to and only use the phone for essential things (I use Three PAYG without a bundle and do about 3 months with 5 pounds, including data, which is 1p per MB). Only buy essential clothes and not because you want to, see what items/groceries you can get cheaper. Cooking your own food is usually much cheaper than buying ready-made meals, especially if you buy bulk products like rice, lentils, pasta, etc. Negotiate expiring contracts for essential insurances, utilities, internet, etc.

    With just 50 pounds saved per month you'll have 600 in a year. Try to save 100 a month and you're at 1200 already. Eat healthy in the meantime and look at your best and be at a healthy weight when you saved enough for liposuction. You'd want to have a fairly healthy lifestyle then anyway because if you regain weight fat cells might grow on unsuspected places if a primary growth location is not available anymore. I'm sure you and your family can do it!
  • EvgeniZyntx
    EvgeniZyntx Posts: 24,208 Member
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    parfia wrote: »
    @kuranda10 - Yes, lipo would work but unfortunately would cost me around £4,000 which I don't have - believe me I'd be there now if I had the money!! haha

    Plus, the WebMD page is a bit off on prevalence and the impact of diet and exercise. You are better served by taking a look at:

    http://www.lipoedema.co.uk/diet-exercise/

    Good luck.
  • parfia
    parfia Posts: 184 Member
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    @EvgeniZyntx - Thank you. As moronic as it sounds, I can't face the fact that I can't run with this condition as it will make it worse. I absolutely adore running (as slow as I go) and really love the challenge of building up my speed and distance and don't like the thought of having to give it up :neutral:
  • dietstokes
    dietstokes Posts: 216 Member
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    I thought the NHS would cover things normally considered "cosmetic surgery" if it was actually related to a medical condition? Might be worth looking into.
  • EvgeniZyntx
    EvgeniZyntx Posts: 24,208 Member
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    parfia wrote: »
    @EvgeniZyntx - Thank you. As moronic as it sounds, I can't face the fact that I can't run with this condition as it will make it worse. I absolutely adore running (as slow as I go) and really love the challenge of building up my speed and distance and don't like the thought of having to give it up :neutral:

    If you enjoy running and it is not painful, you may be able to continue to run. Did your doctor say you should not?
    It might make joint pain worse in the long term but that depends on the advancement of the condition.

    Take advice from the web with a grain of salt.
  • KatKat1209
    KatKat1209 Posts: 229 Member
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    hi @parfia ! I was diagnosed with that 2 years ago I think - if you want to talk about it, feel free to add me as friend.

    But regarding the running: The doctors I've been to didn't restrict me in any sports (I even started Kickboxing fitness last month) The only thing that's really not a good idea is going to a sauna :smile:
  • parfia
    parfia Posts: 184 Member
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    Thanks @KatKat1209 - I have added you. I have quite bad pain in my legs at the moment, but only when sitting or lying down, so my Nurse has told me not to do high intensity activity as it can cause further accumulation of fluid in the legs :neutral: -
  • sdupadhye
    sdupadhye Posts: 2 Member
    edited November 2016
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    Rather late to Comment on this. @parfia please note, I have been diagnosed with Congenital Primary Lymphedema in both legs. There is a associated Lipedema too. This is a hugh obstacle for my Weight Loss. However I am continuing on my path. Running is a bad idea for me and my Doctor suggested Ellipticals instead. Those have been heaven sent for me.

    To your point, the leg pain is expected and predictable. What you need is Compression leggings either Knee high or Thigh High as the case may be. That will stop the pain almost completely. Please visit this Website for Lymphedema Compression Products.

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