Hi...I am a Newbie

Hi all..I am new to this site..I live in New Zealand...have Secondary Lymphoedema..Lipoedema and Lipodermatosclerosis...in both legs... have had lipodermatosclerosis for at least 10 years...I got an infection in both legs last July which resulted in ulcers...then in November was diagnosed with Lipo-Lymphoedema...now wear compression stockings daily....and have 3 monthly reviews at the Lyphoedema Clinic at our local hospital..I am finding that it is a trial at times specially when my skin decides to react to some moisturisers..I mean gee I had been using a particular one for awhile then out of the blue I got a rash plus a burning itchy sensation and I had to wash it off immediaely....ha the District Nurse told me that it was unheard of for someone to have a reaction to the cream...I just told her I am different ...After while I did use the moisturiser again and the same thing happened after a few days...so I know for certain that I did react to it...Now I am using DP HC 1% Lotion prescribed by my doctor and so far so good..have been using it for a couple of months now with no adverse effects...and my skin seems to be improving...I also have beenwatching what I eat and have lost 11 kg since November and feel really good....my lower legs are looking slimmer but sadly above my knees where the lipoedema is there is no reduction in size at all..in fact I am very embarrassed about it..I call that area my "saddlebags"

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  • hi ronin

    welcome

    blimey, i bet you have fun when you have to fill in any forms that ask you for your diagnoses!

    i felt an immediate pang of recognition when i came to the word 'saddlebags' in your post - i've got what i call my bagpipes not-quite under both arms - 1/2 way between where a breast would be & where an armpit warmer would be

    at any one time each of them is more or less full of lymph & they do get in the way - they react really well to mld but harder to manage with sld - but i think with legs the lymph tends to be more stubborn & just sits there & refuses to budge?

    sorry you're embarrassed by them - i could type loads of guff like 'they're just a part of you' etc but it is difficult to manage what we look like as well as the pain & fatigue

    i'm lucky in that i'm v short-sighted - when i go for a little swim with my corset, sleeves & gloves on (i do tend to wear a cossie as well) my bagpipes still tend to peep out, but i can just about make out when someone's swimming towards me, not what their face looks like

    hope the site's helpful for you

  • Thanks Norberte.....so far I have found it very informative in that it is good to read and share with people in the "same boat" as me..

    My "saddlebags" are a result of lipoedema which means they will always be there forever and a day....no amount of exercise or dieting will make them shrink...my perceived embarrassment comes cos I so would love to wear leggings but gee the saddlebags just bulge out and look a real eyesore...but really I guess if I did wear them nobody would really notice so it just my thinking ...and as I am only 4' 10" I feel it is more noticeable...but I am making steady progress in shrinking the rest of me so that has to be GOOD

  • Morning I am a newbie too only been on the site for a couple of week. It is very helpful I am acclimatising to life with this added burden already have Fibromyaligia . Osteoporrosis, stennossis of my back etc I feel like a shopping list hah . Take care xgins

  • Hi Ronlin,

    I have the same as you and also many more issues like Gins does.

    I have had Lipoedema /Lipodystrophy/Lymphoedema now for 15 years. 2 years ago was the first of me being accurately diagnosed by an amazing Surgeon in Scotland. He took me under his wing and i am very happy to say after all of theses years of being misdiagnosed and having to have clothes altered to fit both my upper arms and both my legs from ankle to hip I am now starting to live my life again. The pain has reduced by at least 70%

    My legs weighed the same as a young child they were so large, my arms had what resembled what we call in Scotland spaniels lugs, (large droopy sacks).

    6 Months after meeting my new care team my Consultant agreed to start a treatment of Liposuction and de-bulking of my legs and arms. My arms are now at the stage of being able to wear coats and jackets, my legs are so fantastic I am now the proud owner of Full length slimline boots.

    Due to other conditions i suffer from i am fighting to keep them at the new stage as i have to taker steroids for my lungs and bowel and this always has a bad side effect with more fluid retention. I know i will have to wear my compression stockings for life but this is a small price to pay as appose to when i had to lift my legs manually each step i took, as at times they felt like water drums full to bursting and the pain caused major mobility problems for me.

    I go back again in May to discuss the next round of whats to take place, as i now have a large area of loose skin that hangs over both my knees. But the Consultant and I work together and he never lets me get low. I always come out after being with the Team a very positive person.

    But i am not stupid, I know this can change at any moment, i have to be prepared for having disappointing reviews at some of the meetings if my other illnesses have been effecting my progress. Also Lipodystrophy also hinders the skin from returning back as it's also been reported that it can cause us to loose the elasticity in our skin. Hence why my skin is hanging over my knees when i remove my stockings.

    I know this is all Guinea pig trials and errors, and nothing can be guaranteed, but i will take what ever i get the chance of in the meantime, if it allows me to live a life with less pain and more mobility i will not refuse it as long as it allows my body to stay that way. Keeping in mind at all times i was a very lucky candidate to meet the criteria required to allow this procedure to happen,

    My arms were operated on but due to our condition, as you will be aware our skin can also be difficult at healing. My surgeon did not remove all of my heavy arms, this was due to allowing for infections and tears, so he left an excess of skin in case we had to have repairs done. But my arms healed beautifully. So my next question at our next meeting will also be can we now try reducing them a little more.

    If you find a good Care system have faith in them let them know whats best for you but allow them to work with you and don't be afraid to try new things if its to benefit your life. I took a chance on my Consultant and he has changed my life.

    If i had not met him i am sure i would have been wheelchair bound permanently by now. Yes the procedures are very painful, but he always makes sure this side of things are taken care of so i am comfortable at all times during my recovery.

    The after care is very important as is dealing with the many weeks of dressing changes and stocking fittings, plus my own ability to push myself helps the recovery.

    I will keep you posted after my next meeting to let you all know what will be happening to me next. I hope this may give some of you a little lift and maybe even hope that if your a suitable candidate maybe you to will be given the same chance i was..

  • ninewells..

    It is sogood to read you have a great team working with you...it is somuch easier when that happens,

    It took them 10 years to finally come up with a diagnosis for me and that happened just last October..so theselast five months have put the positive back in my life...and yep I have to wear compression stockings for the rest of my life too...but I don't mind at all ...I have ideas to jazz them up during the winter months...it will be too hot to wear track pants and the stockings so I will stick with Summer capris but wear leggings under them ...have been able to buy so real jazzy ones so when out walking I am gonna look something else LOL..

    I would solove to get a pr of slimine boots but I really havent found any that fit my leg girth...I have small feet and the boots I try on...well um the zip wont do up...Maybe one day........

    I have a review with my Lymphoedema Therapist in April sometime which I am looking forward to ...hoping I have lost even more weight by then...

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