It does sound as tho' you might be experiencing what I think they are starting to call 'sub-clinical' lymphoedema, ie you can feel there is something not quite right, without being able to see much of a difference. Does your arm feel a bit tight, heavy, or achey?
I think it's worth trying to get an appt lined up and in the meantime take some measurements of your arms over the next few weeks or so in the same places and at the same time of day. That way, you may have proof, if needed, that your arm is undergoing some changes. Why a set of baseline measurements aren't standard NHS practice before breast surgery, I'll never know.
Really hoping that it's not the big L and that you've just overdone things or have something like a trapped nerve. Let us know how you get on, won't you?
Hoped I could rely on you!
Its a strange thing - the pains have almost gone today but I dont know when I'm going to get them again. You are right, I forgot to add that I was having pins and needles in my fingers - which in itself made me think of a heart attack as well!
I know I have to get it sorted as its making me a) miserable and b)anxious in case its something other than the lympho. When I had my op over 2 years ago they told me to put the illness "back in its box" and move on. As if.
Sorry to hear that you are having such a rotten time with lymphoedema.
It can definitely get worse over time, and I think something like the extra shopping, like you mentioned, can make it worse.
I can only speak from my own experience, but I get a variety of pains. Muscular mostly, in my shoulders, top of arm and forearm.
I think discomfort from lymphoedema can also take the form of pins and needles and pain right down to fingertips. Since my recent chemo (via portacath) I've been having a few hiccups with trunk oedema myself (a patch on my back).
The things you have done to get the situation under control all sound good to me, with the exception of the hot water bottle - heat and lymphoedema don't mix well. Filling the bottle with cool/chilled water might help more.
I know it's a real drag, going through all the hoo-hah of referrals and appts, but it might be worth seeing someone to put your mind at rest and then pushing for a referral to your local lymphoedema clinic, where they should be able to supply you with a compression top to make you feel more comfortable.
You're not alone!
I have posted on here previously as I have had mild breast oedema for a couple of years but I was in the "if it doesnt bother me then I wont bother it" category.
Just before Christmas my breast became more swollen and painful but I put it down to all the shopping etc and sure enough by early January it had lessened.
For the past few nights however I have found it a bit uncomfortable to lie on that side and 2 days ago started with quite a bad stabbing pain inside the breast - just on the site of the oedema. Ibuprofen, hot water bottle and (re)doing my exercises helped with this but now I have a bit of an "arthritally" ache along my upper arm.
In my wildest imaginings I have thought of heart attack/collapsed lung/clot etc but do wonder if oedema can get worse after all this time? I know that the answer is to go to the GP (who wont know anything about it) or ring the hospital but I have to admit to such a dread of going back there and what they could find.
I have looked through all your posts on lympho and oedema but just wondered what sort - if any - pain that you had?