lymphodema gang - I need your advice please!

hi all

I’d like your thoughts on this if you have time please.

I’ve been wearing the same type of sleeve for about 9 months now. About 4 weeks ago I got two new ones which seemed okay but a bit tighter around the hand/thumb which I expected until they stretched with wear.

The other day I was feeling very tired, and spent quite a bit of time just resting and reading. By the hand of the day, my sleeve was digging in a lot at the top of the arm, around the thumb and the bit between the thumb and index finger. I took it off.

I now have a small lump at the base of my index finger and its painful to bend my thumb. Tried to get hold of the lymphodema nurse on Thursday but she’s not back until Monday (she works on her own).

I’m worried now it might be a small blood clot. I had these in my other arm during chemo so I’m probably a bit prone to them. Also on tamoxifen.

Has anyone had anything similar? What else could it be? Elinda x

Not part of the gang, but if you think you have the possibility of a clot, I would go to A&E or call duty doc to get it checked… probably ASAP… can you phone your cancer centre’s advice line?

Hi GIJane, thanks for responding.

I feel that’s out of the question as its absolutely miles away and I have no transport and its the weekend so I’ll be sent from pillar to post. I think I’ll ring my GP Monday if it hasn’t resolved. If it gets worse I’ll go to A&E.

Last time my GP sent me to the hospital where I waited 4 hours to be seen and then was told I needed an ultrasound but they couldn’t do it that day. I had multiple clots in my arm and was undergoing chemo but there wasn’t that sense of urgency from the hospital you might expect.

Don’t get me wrong, I’m not complacent at all but just have some idea of what to expect. Elinda x

OK… keep an eye on it though… any changes - do something!! (even if it does take hours!) take care of yourself - as the adverts go “you’re worth it” !!!

Hi elinda,

I think it could be a collection of lymph because the sleeve didn’t fit evenly, not yet fibrosis.

This is purely a guess but recently I had an infection in my leg combined with a lymphoedema diagnosis and was given compression stockings which I didn’t always put on right. Even apart from that, I have a really hard lump near the place where the infection was. But my veins are all OK and I have no thrombosis. The lump is expected to go away after lymphatic drainage.

(I know a lot about lymphoedema of the breast following bc, but this leg problem has nothing to do with it).

Margaret

HI GIJane and Zeppa

I decided to ring out of hours GP and I’ve got an appointment at 11 am. My lovely neighbour is driving me there and says she’ll take me to A&E if needs be.

It might be a collection of lymph as you say Zeppa. It can’t be infection as I’ve been on penicillin all week for root canal treatment.
Think though if it was anyone else I’d be saying go and get it checked. Thanks GIJAne for the nudge. Elinda x

Saw the doctor this morning and it was someone who actually knew about lymphodema! Yay!

Anyway, he was fairly sure it wasn’t a blood clot because it was soft rather than hard. He said they wouldn’t treat a superficial clot in the hand anyway - not convinced on that one at all given my history and the lymphodema. He’s told me to wear an old stretchier sleeve which I’m trying this pm. My arm is beginning to feel a bit uncomfortable so I don’t want that swelling up.

I’ll try to get to see the lymphodema nurse next week if I can.

Thanks all, elinda x

Hi Elinda

Only just switched on computer and found your thread. So sorry to hear that you are having a problem- hopefully only a minor glitch. I also wear a sleeve and mitten and find that the area between the thumb and index finger can become vey painful where the fabic tightens down into the groove. Now when I remember I pad that area before I put my sleeve on. Before then, when I was very new to LD, I developed a small lump at the base of my thumb which my LD nurse thinks is just agravation of existing arthritis.

Good Luck with sorting it out quickly

Andie

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Thanks Andie and Norberte

You know, its not a brand new sleeve, I’ve been wearing it for a month! It’s so weird it did that, on that one day.

Norberte - that was my thoughts too. I’ve been wearing a sleeve for nearly a year now and this type of sleeve since January and yet still you can get these unexpected problems. I will speak to my lymphodema nurse tomorrow - I don’t have arthritis, in fact never had a problem with that hand at all. Very odd. Elinda x

Can I ask the gang for some more advice please?

I developed viral labryinthitis at the weekend (infection of inner ear) and a sore throat and the first sign was a lymph node the size of a marble in my neck which is gradually going down.

Am I correct in thinking that we shouldn’t do lymph drainage when we have an infection? I haven’t been doing that or the exercises.

Elinda x

Hi Elinda

Like you I,m sure I have been told not to do SLD if there is any sign of an infection.

Hope you feel better soon

Andie

Thanks Andie. I haven’t actually been told that it’s just what I think someone on this site said once and it made sense. Glad to know that’s what you’ve been told.
Hope you’re keeping well? Elind ax