I am going to have 2 weeks intensive leg bandaging in ... - LSN

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I am going to have 2 weeks intensive leg bandaging in hospital but they want me to have restricted fluids and take diuretics.

Aliphant1964
Aliphant1964

Everything I have read about taking water tablets to reduce fluid retention in lymphoedema patients says it doesn't work and it could even make things worse. I would be grateful if anyone could let me know if this will be safe for me, and if there is a LSN 'policy' or some guidance notes on this issue as I want to have the right information to take to the doctors - who are unlikely to be experts in this field as I am going into a local rehab hospital where the staff usually care for people recovering from strokes and falls etc. The district and ward nurses will be bandaging my toes and then from toe to hip every day and I will be on complete bed rest for 14 days. They will be trained by the rep from Atico on the first day then the hospital and community nurses will learn as they go. I am very grateful for any input I can get because my local Lymphoedema service has been very unhelpful. Nevertheless I am very worried as I have had Kidney Stones, a DVT and a Pulmonary Embolism, I have Sleep Aponea, Depression and Type 2 Diabetes and I am waiting for bariatric surgery (apart from that I am fine!) - and I have always been told to drink plenty of fluids and keep myself fully hydrated!

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Good morning from Kiev, Ukraine, Eastern Europe, Water supply to the body is absolutely VITAL to keep al organs and bodily functions in top order. When you become dehydrated the body partially closes down some organs and concentrates on keeping the brain functioning. Your whole body needs an adequate healthy water intake in order to start the healing process. To get a very clear and informative picture you can do no better than to type into your computer.....lymphnet.orgpdfdocs/nl Hope this link works. I have a copy here. Please read it through carefully it is worth tsking the time. There are 19 pages but nine of those are references. A kind friend on this site made me aware of this info yesterday. I am so thankful. As for me...I go the alternative way and don't trust doctors one inch.Go with what is in your heart and mind. A really excellent site to go to is THE ACADEMY OF APPLIED LYMPHOLOGY. There is an excellent guy there. It was his father's wish that his treatment should be freely available to everyone at minimal cost no matter their financial circumstances.

If I lived in the USA at the time of the origin of lymphoedema I would be many times a millionaire by now. I had placed my trust in doctors at that time and even the so-called Specialist at the hospital in New Zealand (where I am from) lied his head off saying there was no treatment available anywhere in the world. It would have been available to me free of chage. Like the innocent fool I was then (NOT NOW) I believed him so for the last 25 years I have suffered! How do you like that?!

Thank you for your reply Pushkin - I will certainly look at the link and read the information before I am admitted to hospital on November 4th. Alison :-)

A private lymphoedema nurse who I once saw was enraged by a general surgeon who used to recommend the medication suggested to you. I wouldn't touch it as nobody who suffers of lymphoedema, to my knowledge, has taken, nowadays such medication. Hope you get confirmation of what I just wrote to from other people as well.

Hope the bandaging will make you feel better and, also that the nurses will quickly learn how to do it properly.

Good luck!

Aliphant1964
Aliphant1964
in reply to Rebec

Thank you Rebec - I have a wonderful District Nurse called Georgina and she has fought tooth and nail to get me this treatment because all my local Lymphoedema Nurses say is lose weight (I am 49 and have been big since I was at Primary School so if I could lose weight I would of done it before I got morbidly obese and barely able to walk due to the bilateral lower leg lymphoedema!). Georgina managed to get a Clinical Nurse Specialist from another county to come and assess me and her verdict was that approximately 12 months of bandaging me from toe to knee has only exacerbated the problem by pushing the fluid up into my thighs so the skin has become compromised and has thickened up and my knees and thighs have got far bigger than they ever were! The local lymphoedema nurses refused to refer me for intensive bandaging because I have been 'non compliant' with hosiery and Farrow wrap - but the Clinical Nurse Specialist said no stockings will be suitable for me because my legs are so big and mis-shapen and garments will naturally find a skin crease or fold and act like a tourniquet - which they did! I am worried I will not be able to keep up the improvement after I am discharged but the aim is to measure me for new farrow wraps to use once I am back home so that I won't need the district nurses to continue bandaging me 3 times a week. Georgina works part-time but she has offered to come to the hospital on her days off to train the hospital and community nurses and make sure the bandages are being applied properly. I know how lucky I am to have this opportunity - as I said, my only concern is the diuretic treatment :-(

Rebec
Rebec
in reply to Aliphant1964

I am glad that the majority advises you not to take the water retention medication. Maybe those who told you that you have to take those tablets forgot that you had kidney stones and it's one of the most important rules that need to be followed to prevent the formation of kidney stones is exactly the opposite of reducing your water intake, that you have to drink plenty of water to ensure your kidneys do their job properly. You can tell the nurses that you don't want to antagonise anybody but after you suffered from kidney stones, you want to make sure that you protect them from getting more stones. I'm sure they will understand your worries.

I also once saw something that was sold to exercise the feet during flights and this kind of pedals could be used if walking is a problem.

I now have devised my own protocol for dealing with my situation.

Rebec
Rebec
in reply to pushkin

Isn't there a saying that the patient is the best doctor or something like this? I like your 'name'. I once dreamt in getting to grips with the Russian language well enough to be able read Pushkin. I imagine you are fluent in Russian.

Good for you!

The hospital will be fully aware of all of your issues. They will monitor your hydration issues and diabetes whilst all your treatment takes place, I had 9 months in compression bandages doing it at home, so 2 weeks monitored is probably better, I was on diuretics and no one monitored me dispite me asking as im a trained nurse so I understand your concerns but think the way you mention is safer and quicker, good luck

I was at the LSN patients conference yesterday (very good indeed) and one of the speakers acknowledged that often the lymphoedema patient has more knowledge that the GP - and whilst this is extremely frustrating when you feel so isolated; they encourage the patients to take any information they have to their GP. I was also told that diuretics were to be avoided (before diagnosis several GP's suggested i take them); and when i was bandaged i was encouraged to exercise every day. I could only get my feet into my husbands training shoes with so much bandaging and movement felt restricted (and I looked like Michelin Woman!); but something as simple as walking several times around the garden suffices. My understanding has always been that movement; when the patient is able to; is very beneficial during this process.

That is really interesting! Thank you so much for that! I have read several articles where the general consensus is that if you restrict fluid, all that will happen when you are back to 'normal' is the body will be crying out for hydration and it will try to retain more fluid than before - which rather defeats the object! It makes me worry that if I balloon up once I leave hospital they will say it s because I haven't kept up with bed rest and bandaging (and I have been told that if this doesn't work there is a limit to what they can do to help me and basically I am drinking at the Last Chance Saloon - or at least I would be if I wasn't on a strict fluid reduction regime!). With regard to the total bed rest, I will be allowed up to eat meals at a table and to shower AND to go to the loo - so if the diuretics work I will probably be out of bed every 5 minutes!

Hi Aliphant64, I am outraged at reading the suggestions to your post to the point of replying to you.

Do not take water tablets for removing water- as this condition is not WATER it is LYMPH FLUID which is Protein completely different to Water retention-medication for water have no positive effects on your body- I have full body Lipolymphodema - and trust me- I was prescribed for years water retention tablets, they made my condition worse.

bandaging is very useful- but there is a specific drug you need to take for lymph protein removal- this drug can affect your internal organs liver etc so is not prescribed lightly only used in hospital with careful monitoring- I am not aware of the drugs name- as the specialists that use this will not tell me the name to inform my gp.

also St Georges in London- said only agree to your kind of intervention through a hospital which understands the condition fully like London, Leeds. otherwise more longer term damage can be done to the lymph's by well meaning professionals, who do not understand this condition.

I have been advised to have bariatric surgery too- yet all my research from Australia, Germany and Canada all say there is little change - (as its not the food intake that's the issue - its lymph fluid which is incredibly heavy) and some patients have gone on to have stomach cancer- and no change to their weight/lymph fluid reduction.

Gps are really unsure of this condition- and are in the dark on what to do to help us, you do need to become the expert yourself- and fight, fight fight and keep fighting. we are not bariatric patients with obesity- we have a medical condition which changes our body shapes due to lymph fluid.

also never take AMLODOPINE for heart medication- really damaging to our lymph's, making the condition much worse - which can then not be corrected I was on amlodipine for 4 yrs unknowingly til I saw a specialist in St Georges London. Who was mad- and stop this immediately- as it makes our lymph's sluggish- and they cannot pump the lymph fluid properly.

we really are medical guinea pigs- its frightening. and my local Gps will not read the literature I supply them- or take the Gp online training- as quote "this is out of my level of training and understanding".

Oh Cathyleigh I am so sorry that you have had such poor advice and terrible treatment! My GP is very good - he was willing to bypass the local lymphoedema service and refer me direct to St George's but I declined because I was anxious not to antagonise the local service and burn my bridges with them. Also I was told the intensive bandaging in London is done on an outpatient basis and because my mobility is so poor I would struggle to get there every day or every other day (I

I can barely shuffle round a supermarket holding on to a trolley for half an hour before my back is killing me and my legs are so heavy I have to go and sit down). I did find an article about lymph fluid and it being made up of proteins and water and once the water is flushed out the protein remains, then when the body is rehydrated it goes back on with a vengeance. I am really torn between 'doing as I am told and submitting to the hospital's care plan or fighting my corner and refusing the water tablets - but I don,t want to upset anyone because they have really put themselves out to try and help me.

I fully understand where you are coming from- its a lonely place- and our psychological wellbeing is hurting with the looks we get, and the way GP's medical staff see obese- not medical.

this is your body, your health, you need to look after yourself though- you have read evidence to say do not use diuretics, accept bandaging.

take the referral, you are not antagonising anyone, this is an unknown condition, and everyone is entitled to a second opinion- you do not want to make your condition worse, you need to have confidence to bring your research to their awareness, while remaining strong.

I have declined the bariatric surgery under my research of medical papers- the specialists are unsure what else to do, but accept the research medical papers have you the link to the article you read?

listen to your gut instinct- it will serve you well. you are living with this medical condition. praise them for being open and learning and caring for you.

I was told by an endocrinologist that water tablets do NOT have any effect on lympho! As cathy says, lymph is not water. I, too, am very overweight and I did manage to lose quite a bit of weight and that did help. But, as always, the weight has gone back on. So I'm having compression bandaging, again, for 2 weeks. It really does the trick for me and I wear compression knee high stockings. I have NEVER been told to restrict my fluid intake, in fact I've been told to drink more!! I do raise my legs as often as possible, and that helps too. My lympho nurse also gave me foot exercises to do - just simply 'rolling' my feet around and up and down. This helps a bit but not as much as raising the legs and wearing the stockings!! XXX

Aliphant1964
Aliphant1964
in reply to sue32

Thank you for your reply Sue - I have literally just received a screening questionnaire from King's College Hospital in London which is the first stage to me finding out if I will be suitable for bariatric surgery. To my surprise the form came from the office of a Consultant Endocrinologist rather than an 'obesity expert' - but it is interesting what you say about weight-loss. I have been 'big' since Primary School and been on diets on and off for 30+ years. Whenever I have lost weight - often 2-3 stone before it grinds to a halt and I lose the will to live! - it has never come off my legs (and I have been diagnosed with Primary Lymphoedema so I was probably born with it). The questionnaire at first glance has had me mentally ticking 'not applicable' or 'no' to most of the boxes - I know I am fat because I consume more calories than I burn off - it's not a slow metabolism or a food intolerance or any of the other 'excuses' people bandy about - although I am not convinced some people don't have a genetic predisposition towards being fatter than 'normal' people. Some of the questions about food binges and being out of control around food simply don't apply to me - yes my portion sizes are probably too big, yes I don't eat at regular intervals or at proper meal times, and yes I go too long in between meals and then find I am suddenly ravenous and subsequently eat a large amount all at once BUT I don't think my diet and eating habits are solely responsible for me being so obese. I know the referral to the endocrinologist will come too late for the intensive bandaging but t is, if you'll pardon the pun, food for thought! Thanks again for taking the time to respond! :-)

Hi again - definitely take the opportunity to be referred to St Georges; any chance to be under the care of Prof Mortimer should not be refused as he really is the leader in this field in the UK. Cathy's passionate response is so relevant and I am relieved to hear you have a GP who takes on board what you telling him - please; get him to make that referral! I am a firm believer that the holistic route is best; stay from pills and potions as they simply don't work; drink PLENTY of water and eat clean foods - stay away from processed foodsand pre-prepared meals and move as much as you can; this is particularly important for people like us suffering with lymphoedema. The lymphatic system relies on us moving to pump the lymph fluid around the body; if we are sedentary it only exacerbates the problem. Don't take the diuretics!! And don't worry about antagonising your local service; they have a duty of care and should support you in following the advice of you GP and specialists . Golly; we are an opinionated lot today aren't we!! Whichever path you take; good luck.

Having attended the LSN Conference yesterday and listening to Professor Mortimer speech - water tablets should NOT be given if you are diagnosed as having lymphodema. Water tablets remove salts and fluid from the blood stream only. If you have an underlying medical condition that means you have to take water tablets that remove salts and water from your body then that is entirely different.i.e. high blood pressure or a heart condition. We must drink plenty of fluids preferably water or fruit juice. May I suggest you ring the LSN in London for advice and possibly get them to write up a written letter and then you can send a copy to all concerned. It is shocking that we have to become medics ourselves and inform the very well paid GPs what is and what is not good for lymphodema patients. Please do ring the LSN in London to confirm what has been told to you. They are so helpful. Good luck.

Be interested in prof Mortimers talk anyone that attended

Yes, I do speak Ukrainian and Russian..badly! Pushkin was the name of my beloved cat in NZ. He passed away aged 22 years,

PLEASE to everyone reading this site type in....Applied Lymphology& Cellular Ecology - You Tube,

LymphSuppNetwork
LymphSuppNetworkAdministrator

Hi Aliphant - The LSN does have a leaflet on diuretics and lymphoedema - give the office a ring and we would be glad to send you a copy - 020 7351 4480. In general terms diuretics are not effective and can make the situation worse - but it may be that they are aware of other medical conditions in your case that makes this worthwhile - more worrying is the bed rest issue - bandaging will not work effectively unless you are moving around enough to get the lymphatics working - they do not have their own pumps and are completely reliant on muscle movement to fill and empty. It may be that the rep needs to go and speak to the team before your treatment begins!

Re-reading your post, you are Type 2 Diabetic. I have been diagnosed as pre Diabetic type 2. So I followed a diabetic diet on a slimming website. Boy did I lose weight! I lost 1 stone in 1 month. The eating of regular 3 meals a day and 2 or 3 snacks really helped me not have any hunger pangs and kept the blood sugar level constant. Not eating regular meals the body does not know whether its coming or going. It might be worth trying to follow a diabetic regime to help lose excess weight, as in fat. Plus its is a healthy way of eating for anyone I believe. :)

I was also given Diuretics for years, for the triangle of Meds for Hypertension. I have come off these as I have Lipo-Lymphoedema. My GP was told in writing by the Venous Consultant I saw who diagnosed me, they would not work. I drink a lot more water, lemon water every morning, and less tea and coffee. With regards to weight, I now eat more than I used to, apart from Wheat and sugar. Meaning less toast! (Bah! Coffee and toast kept me going on long Nursies shifts!) But it does work. I'm not a great fan of all this Bariatric work. Later on the thought of monthly injections of Vitamins does not appeal to me. (Where the body cannot produce all it needs) Please do a lot of thinking because it's not reversible if you have your stomach partially removed. A band can also lead to problems. It's better to reprogram your mind into eating sensibly and smaller portions. Weight never coming off your legs, and them feeling heavy, can also be Lipoedema. Check this out too. It's often misdiagnosed. I was always told to lose weight, and it kept creeping up! I wasn't diagnosed until I was 50, and my GP had never heard of it! You know your body, and you have to be in control.. Good Luck!

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