Oedema ignorance in NHS

[Jonboyage70]

The Publicly funded NHS has a problem with this potentially serious condition! My experience has shown me that it cannot provide the necessary care to treat it successfully in every case such as in mine and of coarse in any chronic fairly untreatable condition which of course everyone who is not in perfect, youthful health, accumulates over the years after adolescence. The primary failure is the reversal of obesity,which is possibly the most objectionable and reversible complaint affecting the modern developed world. Lymphodema is possibly one of the major side effects of obesity! It arises as understood, from infection of tissues near an untreatable entry wound primarily in the sole of the foot or the palm of the hand, and anywhere else, where it is called a systemic infection, and can cause death according to the nature of the infective agent(s). This was treated with a broad spectrum antibiotic Flucoxacillin in my case by a hospital practitioner in an NHS hospital. As a result it has begun to resolve itself but has left me with a pressurised oedema in both legs below the knees. I am currently treating this with Furosemide and leg up rest, though I am also using vibration and my posturally adjustable bed ( v expensive).

[Lynora]

Have you been referred to a Lymphoedema Clinic?

[Thomas45]

I am not a doctor. My lymphoedema was originally treated as fluid retention. I slept with the "Heath Robinson" solution to expensive posturally adjustable beds, a collapsed collapsable plastic box, with a pillow on top, underneath the 'matress topper'. Yes my legs drained a little, but as soon as I stood up, the oedema came back. Both my legs used to weep lymph fluid through my skin, and then I was referred to a Lymphoedema clinic. The appointment came quickly and within a fortnight I was wearing made-to-measure knee length compression stockings / socks. After about 8 months my legs were measured again, and I'd lost 2cms on one leg and 1 cm on the other, and was measured for new socks. These took only 8 days to come from Germany. For my part I'm trying to lose weight, initially by diet, and later by exercise. I've gone down 3 holes on my belt in about ten weeks. I normally have one salad with tinned or fresh oily fish a day, and snack on fruit or olives, or a rice cake or slice of unbuttered rye bread. I've cut out wheat for the time being. And I'm drinking more water, but miss my target of 2 litres most days.

[veriterc]

Don't know if this is any use, but am under a really brilliant doc. at the Royal Brompton, who has put me on Furosemide AND Bendroflumethazide. Both are diuretics, and freaked out my NHS GP, but this has almost done the trick. I just have to top things up with MLD once a month.

I think the NHS is so bad at treating us because we don't make a fuss. We never get agitated en masse, so NHS can just ignore us.

[Kir6 in reply to veriterc]

Everything I've ever read or been told about correctly managing Lymphoedema, is that diuretics are really bad for long term management. The reason cited is that flushing water out of your body, whilst achieving a little short term volume reduction, actually increases the concentration of the Lymph fluid. This then makes it thicker and ultimately harder for your Lymphatic system to move the fluid in limbs where performance of the system is compromised. Has your doctor discussed this with you?

[veriterc in reply to Kir6]

Thanks for warning - but as a cancer survivor I have learnt that it's very much a question of balance. I was put on the diuretics by my heart doctor at the Brompton (they seem to deal with all the heart problems caused by cancer drugs prescribed by other hospitals!) Brompton ended up giving me a 7-hour operation to sort out consequences. The brilliant consultant I am under now has made a special study of dealing with long term side effects from cancer drugs - one of the few who understands these. I didn't realise the problems. but now won't be so keen to mention them to others - but all in all, think that what he has prescribed for me is best solition for ME. But you have made me think!

[yorkiebee2 in reply to Kir6]

This is what I was told when I was admitted to hospital with severe cellulitis (and subsequently was diagnosed with lymphoedema) My GP continues to prescribe furosemide for me. I was too feeble to say outright I do not want them any more but I don't take them as I am terrified of doing anything that will make this cussed condition any worse.

[AnneBury]

My understanding is that the underlying reason for lymphoedema is faulty lymphatics. ie damaged lymph vessels or damaged lymph nodes. My understanding is that obesity makes it harder for lymph fluid to move around and drain. Lots of information on the websit of the Lymphoedema Support Network lymphoedema.org

[violetsnowdrop]

1.I would tend to agree with your assessment of the NHS & lymphoedema care. I had a total knee replacement (after waiting 10 years with minimal cartilage/ligaments until I was old enough??? 60) and the new titanium knee bedded in beautifully however, post-op swelling on my lower leg did not go down and, (after Vascular ultrasound, X-rays, MRI, etc.) Orthopaedic referred me to Vascular who immediately recognized L/D and did Doppler Scan. Then surprise,surprise---- protocol dictated that (despite all the documented of the previous 6 months!!) I had to undergo (yes, you've guessed it!) vascular U/S and X-rays to disprove other diagnoses. I was then referred to Lymphoedema Clinic (situated in the local Hospice) where the nurses measured me for compression hosiery then, because I wasn't in Palliative Care discharged me to my GP; where I receive Doppler scans and fresh hosiery every six months.

2.I would also disagree with your statement regarding overweight/obesity which is often guaged by BMI. Whilst I served in the RAF a friend of mine was turned down for an Extension of Service because he was more than 25% above average bodyweight for his height. Imagine the embarrassment when a month later he was crowned Inter-Service Bodybuilding Champion. I am overweight (despite eating healthily and sparingly) but I have been on high-dose steroids for the last 4.5 years ( PMR which affects the muscle sheaths around the hips and shoulders)--the increase in blood sugar caused by the steroids has to be countered by regular insulin.

3. You are indeed fortunate that Flucloxacillin was effective for you; as I was (my adult son was visiting when I took my first dose) for within 5 mins of taking it I was unconscious--the paramedics took 60 mins to bring me round.

4.Furosemide is a strong diuretic (helps to remove excess water from the body) which is not recommended for Lymphoedema ; the swelling is due to lymph fluid and not excess water.