My Lipoedema story…

Recently, I’ve been looking at other blogs talking about lipoedema (and to a lesser extent, fibromyalgia), there is not much out there.  A few perhaps, focussing on liposuction as the answer to the disease.  If you are still young (and loaded) this seems like a viable option, unfortunately, I am neither of these.  Also, the procedure seems more painful than the condition itself.  I wonder, if I were still young, whether I would pursue this option?  Who knows.

I first heard about lipoedema after a chance visit to the doctors about another problem; I’d going on and off about aches and pains for many years, particularly coccyx pain and leg pain and swelling.  I’m not sure what triggered the coccyx pain, it feels like its been there for many years, and one day I just noticed it more.  I was referred for an MRI but couldn’t go through with it, maybe its because I’m big, but I just couldn’t go into that tube!  I find sitting down for long periods of time quite painful, especially at work, which can be very exhausting.  I now take one Zapain® (30mg/500mg Codeine/Paracetamol) before I set off for work, so that it has time to work before I get there, and another at my desk with my morning coffee.  Although you will hear more about my bum pain, I will focus on my legs and lipoedema for the moment.

I thought the leg pain and swelling was the result of two seperate accidents, the first happened at work when I was in my early twenties, a door clipped the back of my heel and cut right through.  At the time, I remember going to hospital because it was bleeding, I don’t know if I got stitches but I  remember being off work for about a week or so because I couldn’t walk.  It wasn’t until much later that I realised this may have caused some longterm vascular damage.  (This was way before the compensation culture of today, which is a shame, ‘cos I could really have done with a £10k payout then).  The second accident happened about ten years ago, I fell down the steps at the front of my house and knocked my left shin quite badly.  I didn’t need hospital treatment but went to the doctor a few weeks later due to a red patch of skin, swelling and pain which didn’t heal well.  He thought it was cellulitis and gave me antibiotics, which helped a little but never really resolved the problem.  I kept going back and all I got were more antibiotics but the area still remained discoloured and my leg would flare up episodically.  I had many investigations over the years, taken tons of antibiotics (multiple GP’s thought it was cellulitis); I’ve seen dermatologist’s, had DVT investigations and nothing has helped longterm.  I thought these two events, coupled with my being overweight had weakened  my leg, so much so, that every bump or scrape created a lot of pain; even the slightest touch can be excruciating (like when my big cat walks over my legs).

In frustration, I gave up going to the GP as each time I went they didn’t listen to me, they seemed fixated on my weight, high-blood pressure, whether I was diabetic, or had heart problems; (I know now this is because they get more money for patients on the Diabetic Register or the Heart Disease Register).  I tried to accept my leg problems as something I would have to live with, until I was able to lose weight.  Over the years I’ve tried dieting, almost starving myself (maybe not quite starving, a little bit of added drama goes a long way); I’ve tried exercising which was difficult because I found moving tough, even walking was a struggle as my legs felt like lead.  I never once thought my physical health problems were anything other than my own failure at not being able to lose weight.  As I became older, and menopausal, my symptoms got worse.  I was getting bigger, more depressed and my pain was becoming increasingly more difficult to manage.  I was on a lot of pain killers (Ibuprofen and Co-codamol) and was worried about the long term affects of taking these.  In desperation, I went back to my GP’s but once again they ignored the leg problems and focussed on mood.  I was tried on a number of antidepressants which they said would also help with pain; I dutifully went along with their suggestions after all they were the experts.

Fast forward a few years and my leg and weight problems still persisted, my depression was rooted in my weight issues, particularly my fat, useless legs.  I’d berate myself for my dieting failures, despite trying every mad-cap idea I’d read about.  Until, once again I went back to my GP, this time focussing on my legs; in particular the ugly discoloured patch and the swelling. I was determined and thought if I could get this sorted out, once and for all, I could undertake a diet and exercise regime which could help me lose the weight.  How strange, this time he commented on my unusually fat legs that looked swollen, like lymphoedema, but there was no pitting.  I can’t remember much else about the consultation, my mind was fixating on lymphoedema as a possible diagnosis, I didn’t know much about it so was keen to get home and investigate.

This was about two years ago, my research eventually brought up lipoedema, this was the first time I had ever heard of this condition.  I became frantic, trying to find out more; I spent hours trawling the internet desperate to find out if this is was what I had, and if so, how to cure it.  I scoured old photographs, looking for pictures of my legs to compare with the photos I’d seen online.  Unfortunately, like most big women, I’d never liked getting my photo taken so there were very few, less so of my legs.   I did eventually find a couple of holiday snaps, of me in my twenties, but I wasn’t quite sure if they showed lipoedema.  My legs were unmistakably trunk like, just like the photos online.  My upper body was small in comparison to my legs,  just like I’d read.  But I couldn’t be sure.  I looked at old photos of my mum, granny, grandma to see if they had it; I knew my mum didn’t and her mum didn’t look like she did either, but my grandma, my dad’s mum; she was a big lady, but her legs didn’t look particularly like lipoedema, just swollen with a touch of lymphedema, perhaps.  I do remember however, she wore support stockings all the time and seemed to struggle to walk.

blooming+legs.001

I became obsessed, I looked at everybody’s legs, searching to find others like me and then  comparing their legs with mine.  Constantly thinking, ‘did I, didn’t I’.  Was it just wishful thinking on my part, would having an answer, a diagnosis validate me?  Those first few weeks were very difficult, I both wanted to have lipoedema and not have it.  To have it sent me into a spiral of depression; knowing it was incurable, my dream of having the perfect legs was now well and truly unobtainable, but at least whatever was going on wasn’t all my fault.  I felt vindicated.  But what if I didn’t have it, my struggle with weight, dieting, depression stretched out endlessly before me.  I would continue to be a fucking failure and it would be all my fault.

I’ve known about lipoedema for a couple of years now, and this may sound strange but, it feels like it was borne out of my own imagination, a fantasy I invented as a way of accepting my failure to lose weight.  I feel like this because I don’t feel my having this condition has been fully acknowledged by any medical professional I’ve encountered.  Usually, when I say I’ve got lipoedema they correct me saying lymphoedema, and when I repeat lipoedema they just brush it off,  ignore me, as if I’ve made the mistake.  After all I’m  fat, and by association stupid, I could not possibly be as knowledgeable as them; I am merely a woman.  They are generally dismissive and disinterested; so much for the caring profession, eh!  I had to almost beg for a referral to the Lymphoedema service.  They did refer me to see a rheumatologist, due to the aches and pains, who diagnosed fibromyalgia.  The nurse in the Lymphoedema clinic was fabulous, she diagnosed lipoedema, measured me for my first pair of compression stockings but more than that, she listened.  At last I’d found a person to talk to about this, whose eyes didn’t glaze over; a perceptible weight had been lifted from my shoulder at last.  I felt re-born.  However, this feeling didn’t last long, it took a while to get to grips with the compression stockings, they are a bugger to put on but thankfully everyday my loving, patient husband helps me with them.  They are ugly and make me hot, but they stop my legs from aching too badly; I only realise how much I need them if I spend a day without them.  I still struggle with my weight, I have aches and pains every day, which are exacerbated by the things I eat, I am fearful for the future ‘cos as I get older I worry that my mobility (which is already affected) will get worse.  Although I now have a diagnosis for my problems I realise I am still a long way off from acceptance, not only from the medical profession, from friends, family, but most of all myself and I am still looking for a goddam cure.

 

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