I'm a newbie here, glad to find you!: I apparently was... - LSN


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I'm a newbie here, glad to find you!


I apparently was born with lymphedema and going through menopause triggered it. I also have osteoarthritis and spinal stenosis. I was always the "go to" lady, at work and at home. So it has been quite difficult emotionally and mentally to deal with 3 problems that limit my ability to perform. Cannot even walk across a room without 2 canes or a rollator. Have to sit down to get dressed, sweep and vacuum the floors, and cook. What a pain in the buttox!!! Not a person who ever needed help with anything - now days I need to ask for help with almost everything. I've always been the "clown" in any group, making folks laugh. I've tried to uphold my rep, but I admit, it's getting harder every day. The pain is really awful and I have some sort of problem with pain meds. Tramadol and Alleve seem to take the edge off, but they both agitate the lymphedema. I do, however, have a HUGE electric heating pad which I use about twice a day and it helps with the pain. I also have a compression pump and leg sleeves that I use once or twice a day for the lymphedema. Of course, the squeezing makes my knees hurt, but I listen to upbeat music at the same time and that gets me through. Meditation really does help, folks.

3 Replies

Welcome to the group.

Where are you based?

You’re not alone in Lymphoedema turning your life on it’s head, nor are you alone in what triggered your LE - our hormones are closely linked to the lymphatic systemic which is why becoming symptomatic in adolescence, pregnancy or menopause is so common. Like you I was menopausal when my initial LE symptoms flared up in my feet and legs. I had been an ‘on the go’ person and sporty all my life; I was a keen runner, cyclist, horserider, skier, and mountaineer. Sadly, i’m no longer able to physically engage in the activities that were once my passion. It’s also been a struggle to carry on in my profession. All of us go through a very difficult emotional time after diagnosis, you are not alone!! Allow yourself to feel what you feel and reach out for support from fellow Lymphies when you need it. Hopefully you have family and friends who you can also turn to. I think you may be located in the US (this site is UK based), you’ll find links to great Lymphie blogs and other excellent information/resources on the Lymphatic Education and Research Network/LE&RN website, as well as our UK Lymphoedema Support Network/LSN page. If you’re on Facebook a fantastic support group you can request to join (it’s closed to public viewing) is called Lymphie Strong Inspiration Group. Great to hear you have a pump, I spend many hours per week attached to mine!

Welcome to the group, just thought I'd mention something which you may well have tried with your pump.. I have spinal issues, spinal stenosis & lots of pain associated with it, made worse by the abdominal & leg lymphodeema. The pump is very effective with the lymphodeema & came set at 50 lbs of pressure with the comment in the paperwork that the usual setting unless directed otherwise by your dr, was 60lbs of pressure for lymphodeema. I left the pump initially at 50 lbs of pressure to assess it & found it increased my spinal pain & was grim during the process, which didnt seem healthy, torturing myself on a nightly basis. At 40 lbs of pressure I get effective treatment & no pain increases... silly thing to mention as I'm sure youve tried experimenting but its been a great relief to me. The limitations on walking & moving are very hard to come to terms with, struggling with those myself. Eventually they gave me a low dose opiate patch for pain, that helps w the pain & needs changing weekly. I found spinal blocks helped greatly with the stenosis pain, for a few months at a time, but I dont know if theyre available where you are. Best of luck with everything, theres a mine of info on this site which helps!! Meg

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