Lymphoedema : Help please After having Lymphedema since... - LSN

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Lymphoedema

Help please

After having Lymphedema since 2006 I think I seen the Lymphoedema nurse 6 times in that time she just didn’t want to know.

The problem I got now is I started to gain weight I put on 1 and a half stone since the new year been to doctors 3 times they now say I got diabetes type 2 which is under control and my weight gain is due to my Lymphoedema.

I never see any post on health unlocked about weight gain due to Lymphoedema.

Any help would be nice.

36 Replies
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Where are you based?

Do you have primary or secondary lymphoedema? Arms or legs?

Do you wear compression?

Are you seen regularly by the diabetic clinic?

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Birmingham uk secondary both arms to elbow both feet and legs up to knee yes I wear wraps

Yes I saw then today and as my weight gone up she blaming my Lymphoedema which I had since 2005.

Thaxs

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How regularly are you reviewed for compression?

Secondary in four limbs? Did you have cancer treatment prior to the diagnosis?

Have you been given lots of info on how to manage your blood sugar levels? Are you taking Metformin?

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Not been seen since 2015 then it was for 4 minutes she a waste of time going she just don’t want to know about my Lymphedema yes secondly on all 4 limbs ,no I had lung cancer in 2015 but everywhere else was clear, yes I had lots of info on managing my blood sugar I got right down now no cakes no choc on crisps no white bread.yes I on 2000mg metformin a day,

Thank for your reply

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Who provides the compression? Are they given to you on repeat prescription by the GP? I agree with other contributors - you need to be referred to a different lymphoedema service - or a letter of complaint needs to be sent to your current provider, from your GP.

Have you spoken to your Diabetic Nurse about the dosage of metformin - it can cause swelling in feet an ankles when first prescribed. How often are you being monitored or do you do it daily?

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The new year was the last time I got new wraps the district nurse measured me as the clinic didn’t want to know I been in touch with Lsn and they are going to send information out for me I will do a complaint,

I talked the doctors and diabetic nurse about the dosage only to be told they right and I should be taking another tablet as well the last time I was monitored was June on last blood test.

Thank you

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Check out L-W-O Community on here as I belong to that group.

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Sorry your nurse was not helpful or caring sending love x

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Bartley green

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Hi there no clinics at QE for Lymphoedema the only place in Birmingham is Mosley hall hospital where I go.

I trying to go to a Cancer unit who maybe able to help me more bu5 May need to get the doctors to do it

Thank you

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Just had another thought...

If (after GP has ‘had a word’) & clinic is still intransigent is there another clinic in the area GP could refer you to? I’m in middle of Suffolk (nearest clinic 13 miles) but Essex & Norfolk (26 miles) have specialist clinics.

You have the right under NHS to go wherever you like for treatment.

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Hi thank you for your reply

I talked to gp there is no other clinic around here I did try a few year ago but it a post code lottery, where I go I not been since 2015 when I got lung cancer to see if the Lymphoedema would get worse but she didn’t know,

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It’s a never-ending circle ‘out-of-area’ as I know some hospitals will only accept referrals from own area except for hospital referrals.

It all comes down to funding - I believe hospitals claim back treatment costs from area of referral.

I’ve had battle with GP surgery over cream I use on my arm. Clerk replaced Diprobase with something else (which is cheaper by pennies). Told Lymphoedema clinic & they emailed surgery telling them to prescribe QV cream (which is more expensive than Diprobase!) There goes the logic behind saving pennies lol

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Good for you that your clinic is more caring love and hugs.

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Check out L-W-O Community on here as I belong to that group.

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Will do. Won’t be around much now - busy packing; off to Edinburgh for 3 weeks to catch Fringe Festival

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Hi I'm based in Hayes, Middlesex UK.

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I have Lipolymphoedema from the waist down. I have ankle to knee compression wraps but can't always get them on. Mine is Primary.

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Ask your Lymphoedema Nurse for Velcro Wraps they are much easier to get on

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I've had same problems - my job takes me to Europe so I started adding a visit to a local clinic into appointments. This has worked a treat as European doctors don't have to fill in forms and tick boxes - they have more time with us! I you look on aftercancers.com/category/n...

there are some hints and tips that might help you - particularly about avoiding processed food (this has helped me lose pounds). Good luck

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Check out L-W-O Community on here as I belong to that group.

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I'm sure you should be reviewed by lymphedema specialist every 6 months. Have you asked yr GP to write/email the clinic explaining the problem? A doctor is more qualified than a nurse practitioner or physio etc who has been on a specific course!

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Thank you for your reply

I not been since 2015 then it was only for 5 minutes and was not look at was supposed to go last December for new leg wraps but she called and said she put it into the post but nothing.she say in the times I been there nothing I can do for you so you have to live with it,

Thank you

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That is a disgusting attitude! If it was me I would ask for GP referral to another clinic. British Lymphology Society (BLS) has list of some clinics in uk (https://thebls.com/directory or try Lymphoedema Support Network (LSN) admin@lsn.org.uk tel 02073514480. Good luck! xx

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Hello rcs8256 - I have lived with LE in my left leg since my teens and I am now 72. Acheiving adequate compression was an issue for me for many years as it is expensive and was not available on the NHS or any health insurance as it was an existing condition. I was fortunate to have excellent manual lymphatic drainage in 2015 (leg reduced bt 5 1/2 litres) and very heavy compressison garments since then have kept it under excellent control. Now that I have proper compression and follow a Low Carb Healthy/high fat, real food, lifestyle my weight remains stable.

As you have a diabetes diagnosis (T2D), you need to change what you are eating. dietdoctor.com is an amazing web site with lots of brilliant assistance on how to reverse your diabetes diagnosis and gain control of your weight. We always talk about putting T2D into remission because it is a metabolic condition caused by eating the wrong foods. If your LE was caused by cancer, cancer is a metabolic condition and driven by too much sugar in our body - generally caused by insulin resistance. My LE was caused by poor bandaging after an accident.

As for a diabetic clinic - that will depend on whether your diabetes nurse/healthcare assistant has adopted the Low Carb approach (and there are an increasing number today) or if they are still following the Low Fat nonsense (driven by the industry driven DiabetesUK vs diabetes.co.uk, which now has their low carb program approved by the NHS. DiabetesUK still promotes the PHE Eatwell Guide that no longer meets the NICE Diabetic Dietary guidelines. phcuk.org/nice has the information on the Sugar Equvalance Infographics developed by the amazing GP Dr David Unwin. He has created them to illustrate how the different foods impact our blood sugar. This article discusses them - dietdoctor.com/how-differen...

I hope that helps and gives you a fresh way to look at the issues that drive weight control and T2D.

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Check out L-W-O Community on here as I belong to that group.

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Hi RCS8256 - sounds like things are getting hard to manage. From life experience, if the public health care system is not meeting your needs (and let's face it - often it doesn't) then maybe look for private health care providers. Of course that approach is expensive. My husband's diabetes was not being managed well (in Australia) - mainly because he was not overly interested. So I found a private endocrinologist, exercise physiologist and diabetes educator - and me - and we gave him the workover he needed to get on top of his diabetes. It was not easy feat. And then there is your lymphoedema - self management takes dedication to self care every day - skin care, exercises, compression (often 24 hours a day - except when showering) - new garments every 6 months, night garments if you swell overnight, using a pump or getting regular MLD sessions, or doing your own MLD ...... And then there is diet - low carb seems to be the way to go for most people. I've recently done Weightwatchers and found it great (now called WW) - but ideally you would have an excellent endocrinologist and dietitian to give you the advice you need. All of this costs money. Without funding, yes, get the LSN on your side - demand for a better review, and 6 monthly checks. You need support and a plan of care that will get you on track and heading in the best direction possible. If you have family around you that love you and care, pull them in for support too. It's not easy achieving so much on your own. Wishing you luck and support! Keep us up to date with your journey, struggles and most importantly, triumphs!

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Think I will investigate the WW regime as I am borderline diabetic. That was discovered a couple of months ago when I was admitted with Cellulitis again. Also found kidneys only 49% functional too (been 55% & below since stroke in 2005 when I was on dialysis as they stopped working altogether.

Lymphoedema is hard work - MLD twice a day, massage with cream, wearing compression garments, trying to get clothing to fit huge arm, self-esteem problems etc etc.

Been referred to St George’s London - hoping they will do liposuction; GP says it’s going to be ‘a nightmare’ trying to get funding for it. Orthopaedic Surgeon has backed this as he can’t do any more surgically as it’s the weight causing ligaments to work harder which is causing the pain in shoulder. Will need shoulder replacement but he wants to wait 5-10 years! (Seems like local health authority hope you pass on to next world before treatment is given!!!)

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Sheilamoose - do look at dietdoctor.com (DD) before WW. WW is looking for repeat business whereas dietdoctor.com is run by medical professionals, a social enterprise company (i.e. no shareholders) helping us all understand the science of diabetes, metabolic syndrome and enables us to take control of our lives. Personally had found the low carb community before DD was founded - but still access it to keep up with the evidence.

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Tnx. Will look it up when I get a few spare mins

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Veritrec's post on here. I've had same problems - my job takes me to Europe so I started adding a visit to a local clinic into appointments. This has worked a treat as European doctors don't have to fill in forms and tick boxes - they have more time with us! I you look on aftercancers.com/category/n...

there are some hints and tips that might help you - particularly about avoiding processed food (this has helped me lose pounds). Good luck

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St George's is brilliant.

Having fourth or fifth bid submitted by Professor Mortimer for Liposuction now.

Trying to be hopeful !

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Like you I have struggled with my weight for over 40yrs now at my heaviest I am told it is due to Lymphoedema as I have tried all diets without success now trying a liquid diet and more exercise hope it works as so fed up as my legs and stomach are so heavy.

Told visit dietdoctor.com for guidance and a new way of eating. No fat, carbs, sugar salt, potatoes, biscuits, cakes or bread.

I found having cornflakes for breakfast I gained more weight and not that filling.

Now breakfast is chopped onion, small piece of chopped cheese in frying pan with a little olive oil then add straight away 2 eggs, stir straight away until you get scrambled egg.

This feels me up til lunch time or sometimes 4pm then fish or meat with veg for tea.

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