LYMPHOEDEMA IRELAND

Providing information and support for people with Lymphoedema

One Day at a Time

Lynne Wood's story

And now for a story from Lynne Wood. A primary lymphoedema sufferer living in the UK. Those of us with the same condition can all empathise with Lynne. We thank Lynne for allowing us to feature her story in our newsletter and we send our best wishes to her.

Lynne Wood is 56, and lives with her husband Brian in South London. Lynne is registered disabled on account of lymphoedema and rheumatoid arthritis. I expected to have a conversation about swollen legs, but it just showed how little I knew about lymphoedema. Lynne’s story began with the diagnosis of her condition.

‘It was 2001, and I had been working as a receptionist in the doctor’s surgery for a while. I started to get a lot more problems with my legs. I had to keep sitting down, especially if I had been standing for a while in one position. I went home from work one day, and I had this terrible throbbing in my foot, and my leg swelled up bigger and bigger. I stayed off work for a few days, but it didn’t get any better.

‘I went to the GP, and he thought I might have had a deep vein thrombosis. He measured my leg, then sent me to the hospital. They did a load of tests, and then said it wasn’t a DVT.
‘I went back to the GP, who just said he didn’t know what the problem was. I’d been in agony, and insisted on seeing a new doctor. The new doctor was very nice, but the first thing he said was: “Have you ever been told you have lymphoedema?”’

‘He explained what the problem was, and sent me to see a vascular surgeon. He confirmed the lymphoedema, but said there was nothing he could do. He measured me up and said I’d need to have made-to measure stockings. I got one pair, and then had a hell of a job getting another when those wore out.’

Later, Lynne got a referral to a lymphoedema consultant, but the experience was less than satisfactory.

‘They ran a load of tests, and confirmed primary lymphoedema, and that was it - I never heard from them again. I asked if I could see a nurse, or someone to talk to to try to understand it, but they said they didn’t have any nurses, although I knew people who went to see lymphoedema nurses at that hospital!

Having primary lymphoedema, rather than a cancer-related condition, has meant that getting help and support with her lymphoedema has been far from easy for Lynne. Even though the diagnosis was reassuring, she has had to go out and find out about her condition herself, and still doesn’t feel she really understands the condition.

‘Since I’ve been off ill from work these last five years, I’ve tried to find out more about it. I spoke to some people, and found out some stuff from the internet.’
Also on the internet, Lynne found a lymphoedema nurse from Greenwich who, by encouraging Lynne to think back through her life, has helped her realize that she has had this problem most of her life.

‘I was the baby of the family. I had two sisters, who were 18 and 16 when I was born. My eldest sister said that when I was little, I used to sit on the pavement and cry and say, “my legs won’t walk no more, I can’t walk”. I always wanted to be carried.’

There have also been other ‘trigger’ incidents from childhood right through to the present day.
‘About 30 years ago I had a problem with spondylitis in my neck, and had acupuncture for it, just when the hospitals were first starting to use it. It helped - I felt much better. Then about a year or so later, I started feeling really ill again - weak, weary, bloated, all my hands and arms swelling up again. I couldn’t get an appointment at the hospital, so found a local acupuncturist. He said to me “you’ve got bad oedema in your legs”.

I said I’d been told that before, and had been given water tablets for it.
‘I started feeling much better after some sessions with the acupuncturist, and went back to work. Everything was alright, and I kept going for acupuncture for quite a while. It gave me more energy, and I was better able to cope with things. It kept me feeling OK, and I could go back to work.

‘Then in 1994 I slipped on an oily floor at work and chipped the bone in my left leg. I had to have a plaster for it, but the leg really swelled up, and the plaster had to come off and another one put on. I was off work for about 15 months, and couldn’t walk or work.
‘About 6 months after the accident, I had to have a jaw operation because of my arthritis. I was in hospital, with my jaw wired shut, and I thought I was going to lose weight. Well, while I was in there I put on about 16 pounds. I couldn’t believe it. I couldn’t figure out why I’d put on so much weight.’

A comprehensive history might have indicated some long-standing problem, but the most upsetting thing for Lynne has been the succession of GPs who blamed her weight for all her physical problems, and never stopped to look at the cause of her weight, or think that there may be more to it. Nurses had always been very supportive, but GPs were often quite dismissive. ‘You start to wonder why you’ve gone there.’

‘Swollen feet and the aches and pains have always been there: they’ve become part of my life. You have to get used to real exhaustion – it can hit you at any time, with no warning. You can’t do anything. It’s only since I’ve contacted the Lymphoedema Support Network [LSN] that I’ve realized this is part of the things that happen. I’ve spoken to other people with lymphoedema now, and you start to realize it’s not just you - these are just the things that happen when you’ve got lymphoedema.’

Regular health care procedures can be extremely traumatic when you have lymphoedema.
‘Having a blood pressure test absolutely kills me, the pain … and things like that can actually make things worse, cause more swelling. But try telling the person taking the blood pressure, and they don’t even know what lymphoedema is.

Lynne also has horror stories about breast screening. ‘A few weeks ago I had to go and have a mammogram. Now, the breast clinic is supposed to know about lymphoedema, and I said to the lady “I’ve got lymphoedema, and these mammograms really hurt”. I had nine done, and when I came home I was absolutely black and blue. I felt ill.’
The LSN has been a lifeline for Lynne, but she found it completely by accident.

‘I was at the hospital to visit my father in law, and I saw a sign for the lymphoedema clinic. I said to Brian “let’s have a look”, but when we got there it was deserted, derelict. There was an old LSN newsletter pinned to a board, and there was no-one around …’

The closest LSN meetings for Lynne are held at the Royal Marsden Hospital, but there is nothing available more locally. Lynne’s GP has said that there are 7 or 8 people with lymphoedema in the surgery, and so she is trying to organize a self-help group. Talking to people about the condition has really helped her – ‘it makes you feel more human’ – and given her ideas for coping with the day-to-day problems the condition raises.

Lynne knows her condition isn’t going to improve dramatically, but is optimistic about the help a support group might bring. It’s just a case of taking one day at a time.