In need of support

Hi am new to the site,i have been reading some of the blogs on here which is very interesting to read,i have lymphoedema in both my legs,both arms,my face also my neck.At the moment i am getting compression bandages done on my legs once a week which i find is working,but was told that they don't give you anything to help your arms.I am a 44 yr old gran i have custody of my lovely granddaughter who is 3 yrs old and very active,i suffer from very bad depression as well i find it hard to do some day to day tasks it hurts me to tell my granddaughter sorry no gran can't do this or that with you today.Am not looking for sympathy on here i just need to have ppl that i can talk to for support,i do have a partner but get no support or help.As you all know how tiring it can be living with this disease the extra weight of your limbs the swelling it all stops us from doing things we want to do.I have went from a size 8 to a 16 because of this and trying to find clothes to fit is impossible.I don't get out much because am a lot slower at walking now than before and to be told to speed up when your out isn't a nice thing to hear so now i just say stuff it and sit in the house.Having being diagnosed with this disease has knocked my self confidence for six big time,does it get easier to cope with ?

16 Replies

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  • Hi Missic

    Sorry you are having such a difficult time. It may well be worth talking again to your therapist as there are certainly treatments (including bandaging and compression for arm lymphoedema - so it may not be suitable for you for another reason. Please do try and get out as walking is really good for lymphoedema. Most poeple that we talk to about lymphoedema say it gets easier to manage as you get into your own routine although it never completely goes away which can be hard to take. Hope you get lots of replys to your comment

  • I am so confused by your comments that walking is good for lymphoedema.

    When able I go for a short walk everyday but this hurts my ankle and I feel a strain on my legs when wearing the compression stockings.

    If I have over done it. The chronic pain I suffer in my very swollen ankle is excrucating that I can not sleep it is unbearable without pain killers. To wake up in the morning the pain is so severe that I can not put any weight on it so to move I use a walkingstick wear socks so that I can slide my feet and take more pain killers.

    Waiting for pain to ease is a total nightmare and can take several days.

    It was suggested that I had arthritis but the blood test came back negative.

    The consultant at the Hospital says its my age. I am 58.

    So what should I do now?

  • compression garments for your arms which may help my friend uses these and she says they help. I recently joined a support group which i found very helpful i am very young i have both foms of this condition .It's not easy to group with you deal with it in your own way i find swimming helps which your go do with your granddaughter and aqua acbots hope this helps

  • Im sorry to hear of your situation, I only have lymphodema in both legs but it has mwant life changing situation for me, i was nursing for 30 yrs plus but now unable to do that, You might find days are some worse than others, i had to have bandages for 9 months and now in stockings to my kness but i do hve flares up. Dont give up you arent alone and we on here all know how you feel. No support groups near me but i find chating on here helps me. The worst thing i find is others dont always realise how it makes you feel.

    I took up making caRDS TO HELP AND I LOST ALL MY CONFIDENCE BUT IT IS BETTER NOW, i look at yours fashion and bon mare online also sell clothes which can be delivered if you cant get out, we are all here for each other, take care x

  • Also if you are registed online with Bon Marche they regulary send me 20% vouchers off and emails with free delivery. Which means you save money on petrol/busfares, whilst still being able to look good.

  • Missic, I don't know who told you you can't get compression garments for your arms!! I too have lymphoedema in both legs and in my right arm. I have a sleeve which was measured for me by my lymphoedema nurse. So they are available. Good luck!!

  • Just like to say thank you for all your comments very helpful. I asked my district nurse last week about compression sleeves and she told me that I need to be referred back to my consultant to get referred to the clinic to be measured, so now I need to wait till my next appointment coming from the consultant and not sure when this will be.The compression bandages are now working a treat hey I have ankles again and my legs are getting there shape back I have another 3 weeks of compression bandaging then back to the clinic to get measured for stockings once again, only thing am not looking forward to is when wearing them before they were starting to slide and gather at my anckles which they started to cut in to my anckles and cause a burning feeling up my legs, this time when I go to my appointment am going to mention this to the clinic and also ask him to measure my arms and give me the sizes and the compression that I need so I can buy the sleeves myself as I have seen them for sale on eBay @£16.99 a pair and free postage. Thanks again everyone for replys : ) am actually having a good day today : ) xx

  • Please don't be tempted to get compression garments off ebay, you should be able to access all of your compression hoisery via your GP

  • Just want to echo the swimming recommendation with your grandaughter if there is a convenient way for you to get there as of course I appreciate there might not be. It has helped me enormously, as the water is so weight bearing.

    With love

  • Hi Missic I read that you are going to buy your arm garments yourself I can only stress to you the importance of having garments which are measured and ordered by a proffessional. For years i wore garments that were measured at a chemist and I now have what i call my pouch where slowly over time they dug in and the damage has been permanent. There is also i think its called kesiotape which can be placed across the shoulder and the arm to give some support.

  • Hi

    Sorry to hear you have such serious problems. The best treatment for lymphoedema is in Italy and Belgium. I suggest you look at lymfecentrum.be/en, print the information and take it to your consultant. The NHS will pay for your treatment abroad if you persuade your consultant it's what you need. If necessary, ask your MP to help you. Let us know how you get on. Good luck!

  • The results of the surgery shown in the web link you provided look extremely impressive. Has anyone been brave enough to go for surgery? I note it's essential to continue with conservative management techniques afterwards, and to continue wearing the garments, so I guess you'd only opt for surgery if you really needed a major reduction in limb volume?

  • Hi Missic, I am glad to hear that the bandaging is working for you and your legs are getting better. I think that having this condition can affect your mood initially, especially when you encounter so many hurdles trying to get the treatment that you need and realising that this is for the rest of your life.

    I have lymphoedema in both legs and have been relatively lucky with the health profession. Like you it has impacted on what I am able to do, especially with my grandchildren, and I also have some days where I just want to hide away at home. Like you also, my treatment is having an impact and my legs are improving and I am hoping to be back at work and back to normal very soon.

    I hope you manage to get the compression sleeve you need and, as others have said, please don't be tempted to buy them yourself as they may make things worse and that is not good. Let us know how you get on and I hope that your depression improves and you feel better soon.

  • Hello, I have just found this network and have joined. I really thought I was alone with this as no one seems to understand the pain we are in everyday constantly.

    Reading the comments above I had a little smile as, I am a 'big' lady always have been but,suddenly it is my weight that is the cause of my problems, if I had a pound for the amount of times I have had this said to me I would be rich, and these comments make me feel even more depressed than ever. I do have a nurse who I see as and when I need her, its great to ring for an appointment even if I need to chat it is great, both my legs are affected and I have trouble walking, and find it difficult to cream my legs as I can't bear to touch them as they pain so much.

    I must share this with you all, I have bought exfoliating gloves that I use in the shower to wash away the build up of cream on my legs and the dry skin comes off easily, I pat my legs dry and apply the cream on damp warm legs and I find this to be soothing, have a go, you may find it will help you.I will comment again another time and thank you for your encouraging comments.

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  • snap on the "you could improve if you lose some weight" thing... would be in the double digits with that one just over the past few weeks!

  • Hope you find the help you're looking for. I'm attending my first lymphodema clinic on Wednesday for suspected primary lymphodema. Could you tell me what happens at first appointment?

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