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Opposite leg problems

PostPosted: Tue Aug 25, 2009 11:44 am
by JonquilJan
In the past three years, I have had significant improvement in my lymphedemous leg. Increased mobility, increased sensation (some of which is pain butter than numbness). This through working with a physical therapist who was NOT working on the lymphedema but on overall strength training and conditioning.

With the improvement, I have increased my activity - and have has increasing problems with my non lymphedemous leg. Biggest problem is with pain in my ankle and hip. The knee has been a problem for years but surgeon relectant to operate (knee replacemnt indicated) due to danger of blood clots from the lymphedema.

Do others have this problem with pain and weakness in the non affected leg?

I have had lymphedema since 1970 - have had debulking surgery (Don't do it!!!) and have been hospitalized for cellulitius over 20 times - but not in the past 6 years.


Re: Opposite leg problems

PostPosted: Tue Aug 25, 2009 12:58 pm
by patoco
Hey Jan

Years ago when the lymphedema was still mainly in one leg, I had severe pain in the hip that they could not find any pathological reason for. The joint was ok, tendons, everything checked out. We pretty much have concluded that this pain was actually associated with the lymphedema and the stress it puts on that good leg trying to compensate for the bad one. The more activity I did, the worse it was too.

Now that the right leg is full blown with lymphdema, I still get the pain, but oddly enough not as bad as it was bnefore.

There have been significant studies done that confirm a strong inflammatory process goes on with lymphedema and it seems to focus in bones and joints. The studies indicate that's true for both arm and leg lymphedema.

Hopefully as you continue to improve you may get some relieve.

best to you


Re: Opposite leg problems

PostPosted: Tue Aug 25, 2009 4:55 pm
by JonquilJan
Thanks Pat.

My therapist and I work together on this - and lots of other - problems. I have plenty of other problems as well. rode (and fell off of and with) horses a lot in my younger years. I am 70 now and have been dealing with the lymphedema for 39 years. This therapist told me once - when I was almost in tears saying that I couldn't deal with it any more - that he thought I dealt with it very well. That was the first positive statement I had heard in many years - if ever.

Knowing that I am not 'the only one' makes the conditions more acceptable.


Re: Opposite leg problems

PostPosted: Wed Aug 26, 2009 12:52 am
by joanne johnson
Dear Jan,

As you are aware from reading comments from many other people with lymphedema that you are certainly not alone. Quite often, unless you know someone else that has this strange condition you can feel very isolated and alone. Individuals deal with all types of problems in their own unique ways. Some better than others. We can only do the best that we can. Apparently, your therapist feels that you are dealing with it quite well. So accept the compliment, I'm sure you deserve it and feel good about yourself! :D

Re: Opposite leg problems

PostPosted: Wed Aug 26, 2009 7:29 am
by patoco
Hi Jan and Joanne :)

Well said Joanne. :!: Jan, thirty-nine years is a long long time to deal with lymphedema. I can only imagine the courage and strength you must have to live with it for that long.

My hats off and my respect to you. My beloved grandmother dealt with it all her life as we have the hereditary form until she passed away from a heart condition at 80.

You aren't alone and there is a huge lymphedema family out there. So glad you found us and we here any time you need us.