HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Postby butterfly » Sun Jun 25, 2006 10:56 am

Hi, Just checking in. A bit fed up again. I am sooo tired at the moment. Getting mld regulary though. But now have fluid on my left side now not just my usual right side. My back is killing me now too. I don't know if is lymph or muscular. It feels quite firm. this is only on my right side. I have muscular problems on the side normally with it being very crunchy etc. but the skin feels very sensitive, burning almost when you touch it. I am still waiting to be reffered to prof . mortimer since I have been told that my doc cannot refer me after all so I have to get another consulatant SO hopefully this will happen and I will get on the waiting list. My energy sems to go up and down. It's hard sometimes getting other paeople to understand the pain and tiredness of le.


Postby patoco » Sun Jun 25, 2006 1:35 pm

Hi ya Butterfly :wink:

Its not hard for us with lymphedema to understand how you are feeling.

For me, lymphedema has been so much more frustrating and demoralizing then the cancer, especially now with my entire lymphatic system failing.

Sometimes, you do get to the point of thinking, "why can I just not wake up in the morning."

But, you do wake up...and somehow continue.

I've kinda learned to look at those really down times like thunder storms....the clouds come...thunder...lightening....everything gets black.

So you just hang on knowing the storm will pass.

I do hope so much that you can get to see the doctor soon. The way you are describing what is going on bothers me. Usually, if you are having the kind of pain and the skins feels hard and is a sign of lymph.

Here's a special across the pond hug from the colonies. :D :) :!: :!:

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Postby butterfly » Sun Jun 25, 2006 3:32 pm

Thanks for your kindness pat.Much appreciated.

Postby ann skinner » Wed Jun 28, 2006 9:25 pm

do not get dicouraged. there are good days and bad. we are most all going thru it. i found out about 3 years ago what lymhedema was when i was finally diagnose(until then i thought i was just fat and lazy) now i know when i am over tired to take a power nap. either after work dinner time whenever.
also get those legs up when ever you can. losts of water and if you are near some where that you can float or swim get in there, it always makes me feel a bit better(and lighter too)
keep in touch and remember these people are great to talk to
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Postby bygrace » Thu Jun 29, 2006 11:48 am

Hi Butterfly,
You are so right. It is the hardest thing to get other people to understand what we feel. I too have good days and bad days. This week was a bad one for me. Too much pain and swelling. We have had a lot of hot weather, and stress at work which makes it worse.javascript:emoticon(':x')
Waiting to get help is sooo hard. I had to wait almost two months to see someone. I say "ditto" to what Pat & Anne have said--hang in there, and know we are there for you.
It's great to have this network!
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Postby silkie » Sat Jul 15, 2006 7:06 am

Hiya Butterfly

I am just wondering why your gp can't refer you to Proff Mortimers clinic?

Several members of chat have gone through GP Refferal

I have heard that the clinic has had to cut back on therapy but

referals were ok

I will see if i can find out anything for you after the weekend

hope your feeling better soon hun

gentle hug

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Glad?????? to hear you all have down days too

Postby donsuzbee » Sat Jul 15, 2006 11:12 am

I have been having down days again. I try not to, but seems they just overtake me.
Question - I have le right upper quad result of 2 X bc and radiation. But have been having like a cramping in my left groin when I stand up from sitting. At first it was only if I sat for awhile, but now is getting more frequent. I thought at first 'arthur' was setting in there, too. But then checked and have some puffiness there vs right side. Have a doc appt next week, but just wondered if any of you have experienced this.
God bless!
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