Still moving with Lymphoedema.: Well I am still coping... - LSN

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Still moving with Lymphoedema.

VeronicaBell
VeronicaBell

Well I am still coping with Lymphoedema of both legs and wearing the full leg garments, which are not cheap having to pay for two prescriptions because I need support on both legs. Went to the hospital for a routine check on my Lymphoedema as I have now been treated for 9 months, and they now advise me I have it in my arms. I am currently waiting for the hospital to send my doctors the sizes of my arm supports so they can order them in as they are going to be made to measure like my leg supports. I am wondering where it will spread to next. :( Trying to lose weight to see if it will help but the weight is not shifting. Watching what I eat too and working 9 to 5:30 Monday to Friday, so trying to fit everything in one day is hard. By time I get home from work, I am tired, so maybe I am not putting in enough in my workout to shift the weight, so going to try and work out at 6am in the morning..lol wish me luck. Thinking about trying Zumba on the Wii as my sister has it. Does anyone have any good suggestions on the situation I am facing at the moment?

14 Replies
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Hello, just wanted to say that if you are in the UK (England only I think) there is a cheaper way to pay for prescriptions if you need many scripts of the course of a year (see gov.uk/get-a-ppc). Good luck with the losing weight. My son has lymphoedema and T1 diabetes, and the T2s on his board who are trying to lose weight seem to have most success with cutting back very heavily on carbohydrates. Some have even reversed their need for insulin. However, I don't know whether a high protein diet has any implications for lymphoedema so it would be wise to check before trying it.

i know of 3 people personally suffering from type 1 diabetes and they have all started to follow a 'clean' diet with lots of vegetables and protien; but little carbs and their numbers have reduced dramatically - the doctors can see the great results but refuse to acknowledge it is anything to do with diet..... a low carb diet is good for lymphoedema too!

hi,Its hard with lyphoedama,as in the heat I always get to hot,so swimming is brilliant.I do walk in early morning or later evening.Not sure about carbs,you would have to speak to a doctor,but I try to not eat to much bread,pasta,as I feel bloated.hope that helps a wee bit,its an on going thing,I have primary lyphoedema since a teenager,well thats when it got noticed.I am now 61,I manage,with little help from N.H.S.

Hi, sorry to hear you are not doing so well with your lymphoedema. I have primary since birth in both legs and wear full length stockings... I get 2 pairs every 6 months from an local orthotics clinic since the lymphoedema clinic at the local hospital closed and have never had to pay for them.

As far as weight is concerned I think it is definitely beneficial if you can keep your weight down... my husband and I have been following the 'Hairy bikers' diet book and have had good results at least it is real food and I guess portion control is probably one of the most important things!

I do lots of stretches in the morning to try and get the lymph moving especially around the torso and always try to have the legs elevated when sitting, it's a fine line between doing too much exercise and not doing enough which sometimes is difficult!!

Good luck.

Thank you everyone for the comments I will try and see how I go and let you all know soon. :)

Hi Veronica.

I have secondary lymphoedema in my right leg and have had for several years.I have tried many things to improve my health.I find the medivan compression panty hose helps control day time swelling.I also have started using FGXpress power strips...This is a FDA LISTED CLASS 1 MEDICAL DEVICE ..I have more energy,ease of movement, and no pain!They ship by post to many countries...You can order from link below.

8339267.FGXpress.com/

Sincerely,

maeranger@shaw.ca

I love zumba but it might be worth mentioning it to your lympho specialist. A good zumba instructor should know a bit about lymphoedema and be able to keep you right about anything that you should modify. I have also found swimming really effective for weight and arm maintenance. I use part of the swimming.org site to record my progress and that acts as a bit of an incentive.

The best thing that I did with my lymphoedema, was to register for free presecriptions with my GP. I got my lymphoedema following cancer, but exemption E on prescriptions is medical exemptions, and as lymphoedema is chronic and permenant condition, I am sure that this exemption should still apply. If I remember rightly, 1 garment generates around 4 or 5 presecriptions so paying £30 per garment is not to be sniffed at.

If you do get free presecriptions, explore all opportunities with your lymphoedema specialist, such as velcro wraps which have done wonders in reducing my leg. 81% down to 54% in two weeks, and still going down.

deee
deee
in reply to syrup01

Lymphoedema alone is not a medical exemption UNLESS it follows Cancer I am afraid and I get tights not stockings and it is 2 prescription charges £15.30......If you are on medication and you use more than 14 items a year (including your stockings and multi layer dressings) It is cheaper to get a prescription prepayment Certificate and if you pay over a year it is £10.40 a month for 10 months and is well worth it..... I am talking from experience as 1 I use one and 2 I work in pharmacy

Thank you for all the great information everyone.

@ syrup01, I am still working and do pay for my prescriptions every time I need new compression support stockings and I have to pay for two prescriptions for them each time, because I need a left and right legs. When I finally get my compression arm sleeves, which I am still waiting for because of my doctors said they did not get the information from the hospital. I had a copy sent to me in the post, because I had the same trouble before when I first had my treatment for Lymphoedema. So on Friday, I had to take the letter down to my doctors after work, for them to photocopy and get signed by my GP for Monday. They take 10 working days to be delivered to the pharmacy because they are custom made like my compression support stockings by Jobst. Unfortunately, I do not fit the "off the shelf sizes", because the length is too long for me. So when I collect them I will have to pay for two more prescriptions around £16, so with legs and arms I am looking at about £32 with a tiny amount of change.

I will look into registering for free prescriptions with the GP, is that the options when you pay upfront for 6 months or a year? I never knew it could be exemption from prescriptions, I will have to look into that one too. Thank you for the great information.

deee
deee
in reply to VeronicaBell

Unless you have Lymphoedema following cancer it is not an exemption sorry.....I just replied to the earlier post from syrup01 hope it helps you

Yes you are correct Deee, you must have Lymphoedema following cancer to get free prescriptions. I hope one day they will take a look at the condition and give free prescriptions for all who suffer from Lymphoedema, it would be more fair then. I have now purchased myself the prepayment certificate, after collecting my arm sleeves finally on Friday. I got the year certificate and keeping the receipt for my arm sleeves paper to collect the refund once my certificate arrives in the post, and yes I did back date it to the day I paid for two prescriptions for the arm sleeves. :P I then can reorder for the stockings because I need to replace mine now as they are getting worn and keep moving down my legs during the day. I find spraying with water and wiping the tops of the silicone bands with witch hazel does keep the sticky for awhile but they seen start shifting again. Has anyone found a suspender belt that is big enough on the clips to hold the stockings with the silicone band or is there another easier way?

deee
deee
in reply to VeronicaBell

glad I could help

Hi VeronicaBell,

I first tried Zumba when I wanted to get back into shape but found that it did me more harm than good because of the high intensity of the workout. I thought that meant that I could no longer do cardio or aerobic exercises.

How ever, what I learned was that I had to build my fitness level up again, and strengthen my core muscles. I started with Pilates, which did wonders for me. Yoga is also good. From there I started taking Pump fx classes and I'm now on to Ultimate core. I know they tell you not to get too hot and sweaty with lymphoedema, but I have no problem with that anymore. The muscles are helping moving the lymph fluid along quicker and the circumference of my leg has decreased substantially.

I know everyone with lymphoedema is different, but this is my story.

Well done for trying to get fitter, you will feel so much better for it!

All the best!

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