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Thread: Lymphedema Swollen Right Foot

  1. #1

    Lymphedema Swollen Right Foot

    Hello, new to the forum today. Hello all.
    Just wanted to share my pain etc lol. Damaged my right ankle playing football in my late teens, had trouble with the ligaments since (approaching 30 years now). Fell downstairs at home around 5 years ago damaging the same ankle requiring keyhole surgery in 2010 & 2012 to clean out the joint etc. I had further surgery Bostrum Gould to the ligaments Jan 2013. The swelling on my ankle, calf has been huge varying from a little to a lot since the fall. My last visit to my surgeon he mentioned the ailment Lymphedema which I'd never heard of although all the pain and discomfort I've been suffering and have reported to the surgeon and my GP matches that of the descriptions I've read about Lymphedema since being told about it ie.. Total stiffness in my ankle, massive swelling stopping me from wearing socks and normal shoes (been wearing Croc brand shoes only for a number of years now), pain which is constant varying in intensity which makes me tired and obviously grouchy, unable to walk far as I get tired pretty rapidly and hurt if I drive or walk, appearance that my foot is full of water. I'm normally fit and healthy although have Gilbert's syndrome which is a common disorder which lots of us have without knowing it.
    Just wishing to ask if anyone else has this? I've been referred to a specialist who I'm waiting to see. I've also recently applied for pip. Wish me luck!

  2. #2
    I must say this problem with the Lymphedema is a nightmare, I'm pretty sure if it's what I have I've had it for several years and 3-4 weeks ago was the first time it's been mentioned although I've seen my surgeon and GP frequently about the swelling even showing them photographs that I'd taken and not one mention of it. I've even seen my works doctor who referred me to an independent doctor who helped to decide that I should be medically retired from work due to my ankle issue and an issue with my neck. So that's at least 4 health professionals who've seen my foot, one had carried out surgery on it and the others have listened to my complaints of pain, stiffness etc and none up until the last month have mentioned Lymphedema, I'm not happy as I could have been receiving treatment to ease the pain etc for a number of years. Having read about it I believe it's a lifelong condition that cannot be cured but there are treatments that may help.
    Its not something I've mentioned to the pip folks as my forms were in way before this was spoken of.

  3. #3
    Senior Member
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    Has this latest consultant suggested any treatment? If not perhaps a visit to your GP to ask about whether it's now a diagnosis , and what can be done would help.

    Is it posisble to send in further info for your PIP claim if you havent already been assessed. I know it's possible to do this with ESA?

    Ooops edit to add, excuse my manners just realised you're new. Welcome . I'm sure some of the regular posters will be along tomorrow with replies.

  4. #4

    Lymphedema right foot

    Quote Originally Posted by seriouslyfedup View Post
    Has this latest consultant suggested any treatment? If not perhaps a visit to your GP to ask about whether it's now a diagnosis , and what can be done would help.

    Is it posisble to send in further info for your PIP claim if you havent already been assessed. I know it's possible to do this with ESA?

    Ooops edit to add, excuse my manners just realised you're new. Welcome . I'm sure some of the regular posters will be along tomorrow with replies.
    Hi, PIP are coming Monday so I'm a bit late although I have a "well man" appointment at my GPs on 01/11/2013 so I'm going to make them fully aware of the issues I'm having which are certainly getting me down. The consultants appointment is not through yet although I've had a letter from my surgeon saying he's made contact with a specialist who should be in touch soon so I've not had a proper diagnosis yet although my surgeon who's done three surgeries on my ankle (2010, 2012 & Jan 2013) seems to think it is Lymphedema. At least when a diagnosis is made I can start getting treatment as you say.
    Like everything else I have good days where there is some pain and swelling and other days where I'm hurting all day with huge swelling, even hurts when I'm flat in bed and under no strain at all. Since I put in the pip forms things are certainly worse than they were, sick of not wearing socks or real shoes which I haven't done for years now.
    Feeling older lol although I'm only 46. I'm even considering a walking stick just to see if it eases the strain etc...

    Thanks for the warm welcome.

  5. #5

    Hello, not much of a response from fellow sufferers of Lymphedema.

    Quote Originally Posted by seriouslyfedup View Post
    Has this latest consultant suggested any treatment? If not perhaps a visit to your GP to ask about whether it's now a diagnosis , and what can be done would help.

    Is it posisble to send in further info for your PIP claim if you havent already been assessed. I know it's possible to do this with ESA?

    Ooops edit to add, excuse my manners just realised you're new. Welcome . I'm sure some of the regular posters will be along tomorrow with replies.
    Hello, not much of a response yet, I believe the condition to be relatively common as I've read there are around 120,000 sufferers in the UK. Just thought I'd give everyone a nudge lol and as I'm hurting and not ready to sleep yet I thought I'd update re my "well man" visit at my GPs. My blood pressure was good 139/77 which was high for me (bit anxious I think) and my resting pulse was spot on with no irregular heartbeat etc..I need to lose some weight as I've put on two stone in the last 12 months, had surgery 2013 in January and was none weight bearing plaster up to my knee for six weeks then support boot for similar time. Gave blood samples and not had result yet but my previous cholesterol was 3.7 so hoping for it to be low still. I believe Gilbert's syndrome which I have helps to keep cholesterol low (so I've read).
    Still not had any contact from the Lymphdema specialist so no official diagnosis yet but I'm sure it's now what I have which along with having ligament reconstruction on the same ankle gives me a lot of pain and huge swelling which often effects my right leg from the knee down, also started to have some pain in my right knee.
    PIP assessment is 04/11/2013. I'm currently heading towards my 365 days of contribution based esa coming to an end, I'm in the middle group not the support group and I'm expecting a brown envelope through the door soon and a huge amount of paperwork to fill in, funny really as I've got an occupational pension I only get £7 something a week as my esa payment.
    Hope everyone is well, kind of strange writing that on here lol.

  6. #6
    Senior Member
    Join Date
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    801
    Sorry you're not getting many responses. Forum seems to be very quiet recently, although I don't visit every day. Hope your assessment goes well, i've never tried to claim DLA or PIP, so don't know much about what they ask. Not having a firm diganosis shouldn't be a problem as it's supposed to be based on your needs not your illness as far as Im aware. Worth mentioning the consultants are looking at it as a diagnosis.

    Because PIP is newly introduced decision outcomes seem to be thin on the gorund on most forums, with most people still awaiting their decision several weeks after the assessment. Will be helpful to other forum users if you are able to post back and let them know how it went.

    Keep well or as well as you can be.

  7. #7

    Will post the outcome of my PIP assessment on 04/11/2013.

    Quote Originally Posted by seriouslyfedup View Post
    Sorry you're not getting many responses. Forum seems to be very quiet recently, although I don't visit every day. Hope your assessment goes well, i've never tried to claim DLA or PIP, so don't know much about what they ask. Not having a firm diganosis shouldn't be a problem as it's supposed to be based on your needs not your illness as far as Im aware. Worth mentioning the consultants are looking at it as a diagnosis.

    Because PIP is newly introduced decision outcomes seem to be thin on the gorund on most forums, with most people still awaiting their decision several weeks after the assessment. Will be helpful to other forum users if you are able to post back and let them know how it went.

    Keep well or as well as you can be.
    Good morning, thanks for your reply. I'll post a detailed description of how my PIP assessment goes on 04/11/2013. Never had one previously or for DLA although I had assessments for Industrial Injuries DB previously. Applied for iidb years ago, failed to get it, went through the appeal process, failed again & thought I'd appeal again and got it (3rd time lucky!) just shows that the appeal process does work but it's such a chore to go through the process. There's quite clearly a common theme on the forms and it's to confuse the hell out of us and obviously the ability to complete the paperwork varies from person to person. My father suffers ill health and there's no way he'd ever be able to complete the forms. Have a good day.

  8. #8
    Senior Member
    Join Date
    Dec 2012
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    2,782
    Hello Garth,
    I suffer with this (Lympheodema) amongst other things, I have it in both feet, legs & hands, and have suffered with it for about 6 yrs. Like you I wear Crocs and have been all that time, all two or three size's to big to accommodate the swelling, this was advised by my nurse and they've been a God Send. At present I have a bad wound on my left leg, from it, from knee to ankle and got an appointment at the Lympheodema Clinic on Friday to see if there's anything they can do, this may lead on to Tissue Viability Clinic just got too wait & see.

    Have you been advised to lay with your leg's inclined (upward) above the level of your heart ???, this can help you reduce the swollen foot.

    I don't have lot time right now but will talk to you later, all the best with it.

  9. #9

    Cheers for the reply Jard.

    Quote Originally Posted by Jard View Post
    Hello Garth,
    I suffer with this (Lympheodema) amongst other things, I have it in both feet, legs & hands, and have suffered with it for about 6 yrs. Like you I wear Crocs and have been all that time, all two or three size's to big to accommodate the swelling, this was advised by my nurse and they've been a God Send. At present I have a bad wound on my left leg, from it, from knee to ankle and got an appointment at the Lympheodema Clinic on Friday to see if there's anything they can do, this may lead on to Tissue Viability Clinic just got too wait & see.

    Have you been advised to lay with your leg's inclined (upward) above the level of your heart ???, this can help you reduce the swollen foot.

    I don't have lot time right now but will talk to you later, all the best with it.
    Hi mate cheers for the reply, haven't had a proper diagnosis as yet although my surgeon who did ligament reconstruction on my right ankle seems to think it is. He's made a referral to a specialist and I'm waiting for an appointment. It's the 3rd surgery I've had on this ankle but I've had pretty horrendous swelling for quite a few years but more significantly since the first surgery in 2010. Thankfully I only seem to have an issue on my right ankle at the moment but the swelling ends up straight up to my knee and I'd say its 25-30% bigger than my other foot/leg and it hurts like hell. I've got three pairs of Crocs (pair in brown and old as I've lost the straps), pair of new brown ones (again I've lost the bloody strap for my right foot as the Velcro has given up) and a new pair of black ones with straps still in place (these are my best ones not asthough I ever go out). Trouble is wearing crocs and no socks in all weathers kills your feet, mine are pretty beat up although having done some reading I'm now seeing that looking after my feet is really important.
    The swelling along with the ligament reconstruction has made Physio impossible and too painful, last time I went the Physio would not let me put my foot under any stress.
    I got medically retired from my job this time last year at 45 years old due to my ankle and my neck which is damaged (had surgery in 2007). Now on ESA work related activity group but got a PIP appointment Monday 04/11/2013.
    I must say up until about 4-5 weeks ago I'd never heard of Lymphedema and having done some reading on the condition I'm hoping I don't have it but my symptoms are identical.
    I'm finding that my ankle and leg are even hurting when I wake up, I get up and my ankle will barely move and a lot of the time it takes a while before my ankle will move enough for my to walk on and when I do it's really stiff. Within no time it starts to swell although it doesn't actually reduce totally during the night. My ankle/foot and leg ache and swell continually during the day even when I hardly do anything.
    I'm going on about my foot but you sound asthough you're in the wars big time.
    I'm already starting to find my mobility being greatly reduced and have put on about 27lb in the last year.
    Keep in touch.

  10. #10

    It's me again.

    Quote Originally Posted by Garth View Post
    Hi mate cheers for the reply, haven't had a proper diagnosis as yet although my surgeon who did ligament reconstruction on my right ankle seems to think it is. He's made a referral to a specialist and I'm waiting for an appointment. It's the 3rd surgery I've had on this ankle but I've had pretty horrendous swelling for quite a few years but more significantly since the first surgery in 2010. Thankfully I only seem to have an issue on my right ankle at the moment but the swelling ends up straight up to my knee and I'd say its 25-30% bigger than my other foot/leg and it hurts like hell. I've got three pairs of Crocs (pair in brown and old as I've lost the straps), pair of new brown ones (again I've lost the bloody strap for my right foot as the Velcro has given up) and a new pair of black ones with straps still in place (these are my best ones not asthough I ever go out). Trouble is wearing crocs and no socks in all weathers kills your feet, mine are pretty beat up although having done some reading I'm now seeing that looking after my feet is really important.
    The swelling along with the ligament reconstruction has made Physio impossible and too painful, last time I went the Physio would not let me put my foot under any stress.
    I got medically retired from my job this time last year at 45 years old due to my ankle and my neck which is damaged (had surgery in 2007). Now on ESA work related activity group but got a PIP appointment Monday 04/11/2013.
    I must say up until about 4-5 weeks ago I'd never heard of Lymphedema and having done some reading on the condition I'm hoping I don't have it but my symptoms are identical.
    I'm finding that my ankle and leg are even hurting when I wake up, I get up and my ankle will barely move and a lot of the time it takes a while before my ankle will move enough for my to walk on and when I do it's really stiff. Within no time it starts to swell although it doesn't actually reduce totally during the night. My ankle/foot and leg ache and swell continually during the day even when I hardly do anything.
    I'm going on about my foot but you sound asthough you're in the wars big time.
    I'm already starting to find my mobility being greatly reduced and have put on about 27lb in the last year.
    Keep in touch.
    Rude of me to forget to wish you well and luck with your appointment. Garth

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