Pain in my legs and thighs: Hi. I have Primary... - LSN


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Pain in my legs and thighs

8 Replies

Hi. I have Primary Lymphoedema , Ive had this since i was about 10yrs of age, imnow 53..

I have compression garments that do help with the swelling, but im finding that the pain is now excruciating... I have problems sleeping at night because of it, and getting around is getting really difficult as my legs give way under me..

Any Ideas would be gratefully recieved, I just dont know how to cope with this pain any more........


Nita xx

8 Replies
drummacc profile image

HI nita, your going to have to find a centre that deals specicaly with pain control. I was in a similar state to you and by just good luck landed in the Loros centre in Leicester. They were marvelous. On the credit credit side they have removed the pain. On the debit side I've lost some of the use and control of my legs. But what a relief. Mine is caused by Prostate cancer at the base of the spine! Good luck.

gilly123 profile image

Hello, I can relate to what you are saying about PAIN, I do constantly have pain in both legs that are affected. I cannot bear the bedclothes on my legs and I do often sleep in the armchair, not good I agree, but I do need to sleep not through physical work but because the pain wears me out. I am on pain killers and anti depressant pills, but we must smile and get on with it. I did attend the Pain Clinic where they help you to manage pain?? not easy. I would like to tell you that I have now found that when I shower instead of just washing my legs I exfoliate them using exfoliating gloves, these are very easy to purchase in most chemist and 'cheap' shops, I soap them and gently wash my legs this removes all moistourisng cream and dead skin, I pat them dry and on warm damp legs I put on fresh cream, this is so soothing, this can't be done on a daily basis but I do it every two days, give it a go. I cannot walk or stand for very long and I have bought, after a lot of hassle from my son and friends a rollator and I have got a card to use a 'buggie' in Morrisons so lovely to get out again. I do have a disability badge to park the car and this is my lifeline, I did'nt know that I was eligable, but, there is a lot of help out there , don't be afraid or feel stupid to ask.

Good Luck

Thank you for the replys, I am under the pain clinic, but i am awaiting an appointment as the doctor who i was due to see has left... so i dont know how long that will take,

I will try the exfoliating and see how that goes..

I just wish my legs diddnt give way under me... Its not great walking out of a shop and falling over in the car park or even in the shop itself. ,,,,, and with using two crutches its really difficult to get up sometimes, lol. Luckily my teenage daughter or my hubby are with me but some of the looks i get are really weird, anybody would think i was drunk from the looks i

Thanks again for the replys,

harpy1 profile image

Oh dear, I can relate to falling down, I went a over t the other week and still bear the bruises 4 weeks later. I cannot get up from the floor at all. Some very unlikely looking lads (i shall never look at people again and judge from appearance, kindly asked if i was okay did I need an ambulance to which I replied laughlying no, thank you, but just help getting back up on my feet. They they kindly did two lads either side. I was very grateful indeed. My poor walking stick got some war wounds now too with lovely scratches down the sides! I swear the only reason I fell was because I am not lifting my left leg (the more swollen one) high enough.

Might it be possible you have Lipoedema as well like me which is painful without the added insult of Lymphoedema ?

in reply to

Hi Aprille,

Thanks for replying, The problem being i dont know what the differance is, Any help explaining the differance would be appreciated..



Hello Nita,

Sorry to be so stupid and assume everyone knows about Lipoedema because they are on the board. Here is LSN's link to the fact sheet :

I was given a copy at St George's last week.

I knew nothing about the "other dema" until it was diagnosed by a Health Professional even though my family has a history of painful swollen legs.

Apologies if I am way off target here with suggesting Lipo' but I think you can take hope that things will improve for you by using LSN and becoming a member if you aren't already. It's the way I found out about my conditions and therefore that helped me to get the best possible care there is but my it's not been easy.

goodtimes profile image

what type of Specialist deals with this Dr seems to think it just called Lymphedema and no me water pills Lasix

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