Suzanne's Story

[SuzanneE]

In 1979 I was 14 years old and a horrid song called Nice Legs, Shame About Her Face by The Monks was at no 19 in the charts.

I had a Saturday job working on my aunt’s market stall, and noticed three boys leaning over the balcony above the main hall looking at me and laughing among themselves. Suddenly, they caught my eye, and all three, loudly and in unison, screamed down at me: “Nice face, shame about the legs!”

This horrible moment, combined with my own shame and hatred of my horrible, fat, ‘tree trunk’ legs set me on a path of madcap diet and exercise regimes. If I was too fat, clearly I had to diet and then I would get thin, right?

Well, if you have Lipoedema you’ll know the answer to that! My legs got bigger and bigger and despite my still slim waist I eventually became officially ‘obese.’ In spite of all the dieting, exercising, massaging and fat-pummelling, the only thing that ever shrunk was my self-esteem, and all I got for my efforts was an eating disorder.

It was 32 years after the market stall humiliation that I discovered my fat legs are not in fact my fault, that I had Lipoedema. I was diagnosed only by chance at St George’s hospital in South West London, while being examined for osteoarthritis by a consultant who knew about Lymphoedema and referred me to Professor Peter Mortimer’s team. I was seen by Sandy Ellis, now Nurse Consultant for Lipoedema UK. She diagnosed me within seconds of walking in the door!

The diagnosis was liberating and depressing. The first thing I knew I had to do was tell my daughter and my mother that they too had Lipoedema. My mum took it quite well. My daughter was at first devastated.

Setting up Lipoedema UK wasn’t an option; I couldn’t believe no one had already started a national patient organisation and that the condition wasn’t better known about or understood. Professor Peter Mortimer and his team came on board and so Lipoedema UK was born. It’s early days, but if we can help stop women growing up as I did riddled with shame, ruining their health by unnecessary, dangerous dieting and exercise regimes, and facing disability in middle age, we will have achieved our aim.

[ladydawny]

Is there any relationship with thyroid disease? I have swellings in my legs and my arms look like legs of mutton. This continues whatever state my thyroid is in meds-wise. I have wierd 'pads' below my knees and my left leg is fatter than my right My elbow hasn't been properly visible for years :(.

thanks

Dawnx

[MoonMama in reply to ladydawny]

I can't answer your question as regards your thyroid (although my sister has a thyroid condition) but I do sympathise. My elbows aren't visible either, and I have pads of fat under and to the inside of my knees. Also my left leg has always been larger than the right; I wonder why this isn't usually mentioned in descriptions of lip oedema as, clearly, it's not an uncommon 'symptom'.

[MoonMama in reply to MoonMama]

*i wrote lipoedema, but the computer changed it!

[AusBehcets]

Hi Suzanne,

I am looking around on the web & not finding much info at all. Nice to find this support group! I'm in Australia. I'm actually quite sick with chronic fatigue >16 yrs, fibromyalgia, multiple chemical allergies/sensitivities & seronegative spondyloarthropathy. A new GP has put me on a fresh food diet due to me having insulin & leptin resistance, central obesity, fatty liver. There is more to my story, but basically with the rapid weightloss I have discovered two ?lipomas, one on my inner thigh & one one on my upper inner arm near elbow. The leg one is not painful, but the arm one is tender to touch. Will see the Dr soon to discuss. (Did see another GP about the one on my leg and he said if it doesn't go away or gets bigger we will ultrasound it. That was before I noticed the one on my arm!)

[LipoedemaUK1 Volunteer Lipoedema UK]

Re Thyroid, problem is there is so little research on Lipoedema and it is so under diagnosed that we don't know, although I've known a few people who do also have it. And although Lipoedema is described as being 'symmetrical' I think everyone has one leg a bit bigger/smaller than the other, so that is normal, although another reason of course could be that lipo-lymphoedema has developed in one leg.

We're just getting this forum off the ground, all very new for us, so do please share and contribute! Many thanks.

[Wollyhat123]

Hi,

My daughter was seen by Prof. Mortimer some six years ago having been referred to him by the Lympoedema nurse at Royal Oldham Hospital (Ms Ready). He is a lovely man who did many tests on my daughter. He said at that time that, although her lymph drainage was very sluggish, he didn't think it was Lymphoedema. However, this year my daughter had to see the Lymp nurse again as she is suffering really badly at this time. Ms Ready has now suggested that my daughter is suffering from Lipoedema. Also my granddaughter looks very similar from the waist down (she is only 17). I think they both have this Lipoedema and I have been looking for ideas from other sufferers who might have found means of relieving it.

One post I have found suggests a rebounder helps (which I think is a small trampoline). Another said she had made herself some ankle slings which were helping her, but she did not mention how to make them or how to use them. It was an old post, so I did not get a reply when I asked. Just wondering if anybody on here has any ideas, or maybe it might be one of you who wrote that post.

[Magi54]

Hi I just joined this group 5 minutes ago .so sorry to hear your daughter has lymphdema I don't have much knowledge on this subject I am fighting with my doctor to send me to a specialist just now I asked my Dr for a lymphdema bandage for my left leg and he gave it to me with measurements he never took so I went to the chemist to pick it up low and behold the pharmacy has not got lymphdema bandage we live in a small village in Renfrewshire lochwinnoch and pharmacy said she has only ever heard of one other patient with the same condtition in her arm this patient was sent to a clinic or lymphdema clinic to get measured .There is not enough knowledge out there I am now getting measured for a stocking to help unblock the fluids I really am not clued up on this subject due to just getting on with it and not bothering the village idiot drs .Pray to God they find us the knowledge and help we need for our sufffering of this I also suffer from m.e. now for 28 yes Blessings and healing to all suffering and frusated with the NHS etc

[Rosesibbs]

Lymphoedema is slowly getting recognition it is important that you get aam appropriate garment size as well as class. Depending on your medical history and vascular status. There has been a huge success in the last 5 years with garment materials Nd colours even having pink and blue on the market. Some garments are costim made is the off the shelf are not within limits. Most garments are made mostly in German but we now do have French and Swiss. I would advise you to contact the manufactures directly and give them your measurements. They will go though with you the options that are available and this can be billed to your GP and garments sent to you directly within 2-5 days. You can look up the following companies online and give them a call: Medi UK, Haddenham Healthcare, Activa Healthcare, BSN. They have uk bases. If you have any queries please do nt hesitate to contact me. I would live to live in your village and open up a service lol.

[jay63]

I haven't been diagnosed with Lipoedema as have only just found out about it! Is it worth asking GP about it? Tests etc?

I came across an article by chance, showed the pictures to my son who said;' they are your legs!' From my teens I had extremely painful & swollen knees, I had numerous x rays and arthroscopies. They found nothing much apart from 'loose tendons & ligaments which I had 'tightened and my knee realigned. I now have quite bad arthritis in hip , and feet. I have always had comments about my legs, how weird it is that the rest of me was so slim and not my legs, 'advice' on how to lose weight by exercising more, ( no one ever believed that I did any!) People, including family, used to tell me that 'all' I had to do was do the 'right' exercises! AAARGH! Or saying they look like trotters. My legs are a very strange shape, apart from being big, like over stuffed sausages, with odd pads of fat at side and below knees. I also have an odd pad next to my ankle bone that I have never seen on anyone with normal legs. Even a hospital consultant said 'what funny legs! I can't wait to see your xrays'!

I feel that they have blighted my life and have never felt comfortable showing them in any situation. My EX husband hated them, and I had liposuction when we were married but I was left with even lumpier legs than before so they looked worse if anything! Any men I have gone out with have commented, it has finished many a relationship and I don't feel I can go through it anymore so stay alone.

Does any type of massage help? Anything help at all? Exercises firm up muscles ( I can feel that if I rummage in fat enough!) but the fat on top hides that! It's bad enough that they look awful, but they hurt and are tender too. GRRRR!

Blooming genes!