Lymphedema evaluation yesterday and PT coming up - PMRGCAuk

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Lymphedema evaluation yesterday and PT coming up

Grammy80 profile image
15 Replies

What is going on in my body now is a first for my. I feel like I'm wearing a metal girdle around my back and swing two poles of concrete when I move my legs. I can stand for 10-15 minutes, then have to sit to stop the back pain. After a short rest I get up and do it again. Looking one foot ahead seems like a mile.

My appointment with physio yesterday was the first opportunity I've had to get involved in a positive action. I'll have two appointments per week for at least five weeks to learn how to 'manage' the lymphoedma. When I saw the cardiologist last week he was concerned about the lack of ciruculation, the blood and oxygen is not getting back up to my heart and pooling with some veins rupturing through the skin. I don't have those surface varicose veins that you can see, but the vein will come to the surface and with my skin so thin, just rupture. He is talking stints but will not proceed with anything while I'm on 20 mg of pred. He is going to do a vein mapping procedure, ultrasound, on the 16th. Right now...I don't see me adding anything else to this mix until I get a bit lower on the prednisone.

I listen to the pioneers and veterans on this blessed site...and see what they have endured which is so empowering. Tough!!! Strength is in the knowledge and knowing there is light at the end of the tunnel. Maybe not a 'light' we would have selected for ourselves, but management and acceptance....and forward.

I was looking at pmrgca.org.uk/about-us/what... and read under the ABOUT US tab!! What a mission statement...educating professionals and giving all of us a 'home'! I cannot imagine day to day living without this site. My heartfelt thanks💖💖💖

(Grammarly is not working?, hope there aren't too many misspellings.)

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Grammy80 profile image
Grammy80
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15 Replies
SheffieldJane profile image
SheffieldJane

No intelligence or experience to share, just a hug you poor darling. 😘💖

alvertta profile image
alvertta

Hugs from Canada!!

Hollyseden profile image
Hollyseden

So sorry you are having such a rotten time but glad you have the support of all on this site and the wisdom of the wise ones for advice 🤗

Grammy80 profile image
Grammy80 in reply to Hollyseden

💖 I'd be talking to myself in a corner without all of you!!! I know many have been dealing with all of this for years...my hat is off to them. They adjust...and I'm determined to. xo

Luciejc profile image
Luciejc

Somehow secondary adrenal insufficiency and Medrol withdrawal complaints make me feel like a cry baby and wimp next to your strength and courage. You are my hero! You are an inspiration and a role modal. Hugs and prayers from me to you, Marilyn.

Grammy80 profile image
Grammy80 in reply to Luciejc

Not at all....we are all trying to put that next 'hump' into perspective.💖

Thelmarina profile image
Thelmarina

❤️

Louisa1840 profile image
Louisa1840

I have to agree with all you have said about this site! I cannot imagine surviving the PMR journey without it. As you know we're ALL with you, cheering you on and empathising with you. As my dear Mum used to say "This too will pass" and Julian of Norwich " All will be well and all will be very well".........

Pixix profile image
Pixix

Hugs for you...you’re having a truly tougher time of it right now! Sorry I don’t know any so,Union to those problems, but wishing you a better time ahead...& soon! S x

Grammy80 profile image
Grammy80 in reply to Pixix

To Actemra or not to Actemra will be the question at my next rheumatologist's appointment coming up. So many balls up in the air....enter juggler~! Thanks💖

Pixix profile image
Pixix in reply to Grammy80

I’m lucky, that choice hasn’t come my way, but having read a bit on this forum, I’m erring on the ‘no’ side, unless it’s really necessary, but hoping I won’t get to that stage. That’s a tough one, but other people here have experience & can help, I think!

bussell profile image
bussell

Hugs, Grammy

Jackoh profile image
Jackoh

Many hugs and best wishes xx💐

readingbooks profile image
readingbooks

Cheers for your courage and persistence !

LCfan profile image
LCfan

Hugs and best wishes

❤️

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