Hi: Hi,thanks for letting me join. I recently got... - LSN

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Hi,thanks for letting me join. I recently got diagnosed with lymphadeama,I had cellulitis in my left leg and as that started getting better cellulitis returned in my right leg been on loads of antibiotics,now on course of antibiotics for next six months,and have lymphadeama,my legs are bandaged up I have to walk with a walking aid, I'm very scared which may sound daft,but two years ago I was walking around normal and now I can barely put one foot in front of the other,I'm all ways getting upset and frustrated because I can't manage to do what I used to do,I get a lot of pain and on a lot of painkillers which take it away for a while,sorry for the rant I just feel very alone right now.

13 Replies

You’re not alone.

Whereabouts are you? Are you seen at a Lymphoedema clinic? Do you have support at home?

in reply to Lynora

I'm in UK I'm seen by a lymphedema,my husband and my kids support me,they can only do so much,it's mainly me punishing my self because I can't work no more.

in reply to Jaqs-12

What form of lymphoedema do you have? (Primary/secondary/lipolymphoedema)

Have you been given compression garments to wear if you are not in bandages? Which county are you in - there may be a support group?

Hi Jaw 12,

I'm having a difficult time with legs and abdomen lymphedema that started after bladder removal last November. I was told to find a certified lymphedema therapist in my home state and have done so. The Rx was also for PT. Have you been able to do those things? With legs bandaged, it sounds like you have seen a therapist, but have you also been fitted for compression garment/s? I'm having a tough time finding something that compresses all these areas without overdoing it across the stoma. Are you doing your own manual lymph drainage type of massage. I find that works. Best thing I've found though is about 20 inches of bolsters and pillows for my legs at night. By morning the legs are so much better! It's not easy sleeping on my back with thighs straight up and calves across the top, but it definitely is helpful for me.

This is not a good diagnosis. I find it very hard and time-consuming. If my husband weren't here to help me it would be very depressing. I do so hope you have some support, as Lynora mentioned.

Write back when you can. There's lots of expertise on this site and I am sure glad others are so forthcoming in sharing their own information. I pray you start having better days ...starting now.

~ Mary Kay

in reply to 2198224

Thank you,my hubby and kids support me,they do there best, which I appreciate and wouldn't't ask anymore from them,I would go mental too without the support I go and see the district nurse every three days and lymphadeama nurse once a week once again thank you for your kind words of support.

I am shocked by how much my mobility has declined since being diagnosed with lymphoedema. However keep positive, keep as mobile as you can. I have found reading posts on this site has boosted my morale. There are worse then me. And hopefully you will find that too. Obey medical instructions, keep positive.

in reply to TeresaMay

Thank you,I have all ways said there's all ways some one worse than me,I try and stay positive and keep my fingers crossed,just everyday is a battle.

Hello Jaw12 & Welcome ☺

I'm new to this forum too so we can be newbies together. Cheers x

in reply to ScouseTaffy

Thank you,x

Welcome to all yhe new people. I am closing in on one year since diagnosis. I have never had cellulitis, thankfully, and am managing what is best for me leg maintenance. It is hard, especially in the heat of the summer. Good luck. I have appreciated the support of this board and I think you will too.

in reply to GabbiD


You are not alone. There’s 1000’s of us out there who breathe a sigh of relief that this hot summer is coming to an end and for a few months won’t have to to peel off sweaty hot tights when everyone else is wearing summer clothes and also we live with the fact cellulitis can return. Just focus on one good thing a day it works most of the time

Hi,I have been back to see the nurse and my left leg is getting better but my right leg is infected again I have compression stockings but won't put me in them till my legs heal properly,i have support at home,I had to give my job up that I was in for 10 years, I loved my job,I'm going for a bit of counselling for some support in stead of punishing myself because I can no longer do what I used to do,thank you for the messages of support I really appreciate them I know it is going to be a long process physically and mentally.

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