Hi from a newbie with Lymphedema, Osteoarthritis and s... - LSN

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Hi from a newbie with Lymphedema, Osteoarthritis and severe leg issues.

philly1
philly1

Hi all, I am a newbie and this is my first post in the forum. Be gentle!! I guess a little about me would be good to know in the first instance. I'm a 6'2 bloke who now has a keg instead of a 6 pack, although being a old school rugby player it was never really a 6 pack! I currently take Fentanyl (for pain) and Ibuprofen from time to time. I am 42 years old. I have a Lymphedema in both legs, Osteoarthritis in ankles, knees and starting in hips and severe leg issues through years of abuse at sporting matches, mostly rugby. I shattered my ankle and broke the tibia and fibula in 12 places quite a few years ago and it never really got sorted properly. Metal work was holding together the ankle for a couple of years before bending a pin in my leg caused them to be removed.

I work in an environment where I can sit all night (doesn't help swollen legs) or get up and walk around (doesn't help osteo or knees), but I can mix it up a little if I need to.

I am used to being in pain, but this lymphedema is a new thing for me, well actually, not that new but being a typical bloke its been ignored to the point of it now hurts all the time and I take it out on the nearest and dearest.

I guess I'm looking for a little bit of advice on how to cope with this, or beat it.

Thanks for looking and I'm looking forward to being around for awhile.

9 Replies
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Hi Philly, the best advice I can give you at the moment is, contact the LSN they'll have leaflets they can send you, also look on their website and see if there is a support group in your area you can join, also get a referral to a lymphodema clinic to get the correct compression garments, good luck

Hi there . Thanks for posting , it's good to understand how men feel about this condition as it gives us another aspect . I think you're probably the first male that I've known with the same condition as myself . I also have Lymphoedema in both legs following cancer surgery and 21 years later I've now developed arthritis in my hands both knees and both hips . How do I cope you ask ? Well I suppose I have a very positive attitude and try not to let things get me down . Personally I don't take it out on anyone else because it's not their fault that I've got all this and I've always been grateful for their love and support . I don't like accepting help from others but I've learnt that I've got to . I lost my husband last year to multiple cancers so at the moment, I wake up and feel blessed to still be part of this world and that guides me in my life . Of course I'm in pain and sometimes it's really bad and initially I used to think why has this happened to me but then I said why am I so special that it shouldn't happen to me !! We all never know what life's got to throw at us so we have to deal with it in the best way that we can . Despite having to take my wheelchair ( which I currently use as a walking aid and to sit down in ) and my crutches I still manage to do most things , even holiday on my own , lots of people say I'm brave but I know I'm not I'm just a person who's been dealt a rough hand medically and I'm just making the best of it . If I have pain then I take painkillers and then just ignore it . Hope this helps x

JenH1942
JenH1942
in reply to kHP22

Thanks for pulling me up and stopping me from feeling fed up with myself and my situation in life. So.... Thanks to you for my much more positive thinking. Have never been given to depression and keep being told by friends and neighbours that I am very brave !! Don't feel it at times and had got to a bit of a low state. Now I'm back and fighting again.

Thanks.

king1
king1
in reply to kHP22

I am so sorry you have so much pain, KHP22. I've had lymphedema forty-two yrs. but made mistake of stopping to wear gauntlets and to bandage arm at night about 15 yrs. ago. Now I have osteoarthritis in *that* arm that hurts so badly that my prescrip. of Tramadol is not that helpful. Do you have a suggestion that I can mention to my orthoped.?

Philly, first I would advise Mld and custom stockings. They need to be renewed every 3 to six months. Second find what ever works such as peppermint. Lidocaine patches or deep blue rub to rub on you legs at night for pain. Try to keep excercising ie walking, biking or swimming and keep weight down as much as possible. Reduce salt intake. Make sure you have good shoes with memory gel support. These were a God send recently. And never ever never let your doctor's tell you it isn't painful, because it is. Lastly, listen to your body rest when you are tired and when you sit, try to elevate your legs. It all helps. Best of luck to you.

Hi Philly. Try to find out if MLD (Manual Lymphatic Drainage) might be an option. Much more 'used' on the Continent, NHS doesn't like it! ("Not way we do it in Britain") but a Hungarian nurse at Guy's told me to try it, as compression garments weren't working. Got a list of recommended therapists from LSN, and things are so much better now. I have to pay (£75 per monthly session) but a few areas do this for free - but you have to make a BIG fuss!

There are some great sites that can help you. rarediseases.org/organizati... and the National Lymphedema Network. My lymphedema began in puberty and at age 51 I've just begun to put all my other random medical issues together and discovered that my kidney, heart and double row of eyelashes or Dichticiasis with lymphedema is caused by a rare hereditary gene. These organizations have valuable information as well as contact info for places to obtain support garments. Did your lymphedema begin due to an injury? I also have osteoarthritis in my knees which is painful as well as neuropathy in my right leg which causes me to take Gabapentin. I take tramadol for pain throughout the day and sometimes I use a steroid pack for the arthritis pain. You need to get fitted with compression garments if you haven't done so already. Hope this information helps.

So you were never an AB!

Hello philly1 , I would advise lymphedema clinic, they will measure your whole leg/s and may issue made to measure socks/tights. I left my problem too long before seeking help, not a good start, ended up with severe cellulitis (very painful) which required antibiotics, daily cleanse and dressing. Once this cleared referred to clinic for compression stockings, must admit I was not happy at this thought as legs so sore to the touch and huge. Plus the fact of 'how will I manage to put the things on', got the socks struggled at first, but my word they do work. My legs are really slim now, although motely from the cellulitis , down side is I will have to wear for the foreseeable. Don't suffer get help and look forward. PS I purchased a metal frame which you load the socks onto making them easier to step into. Also if you opt for the open toe socks be prepared for 'roll back', I have dealt with that by adding an elastic toe pole like on flip flops...problem sorted.

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