Lymphoedema - how does it feel at the beginning?

lillol, May 28, 10:36am
My arm is really sore. It is aching almost all the time and even kept me awake the other night. It has never been bothersome since my BC diagnoses 4 years ago. It started with a pain - like a sore tendon and now my whole arm is aching. What should I do? Any advice from anyone else on here who suffers from it? My joints are sore too, in this arm, wondered if it was the cold weather.


mlarkin, May 28, 11:38am
I have just had a tentative diagnosis of this. Had a knee tear op 16 months ago, and it seems surgery can trigger it. As I understand it, it is a breakdown of the operation of the lymph glands causing swelling and pain.

For me, it is swelling above the knee on the operated leg, some swelling on both ankles and pain in both legs, particularly at night when I wake and can't straighten or bend either leg. Any day I do a more than usual amount of walking, I have to have a rest before continuing.

I was told by the specialist that it is common to have swelling in the arm after breast cancer and there is just management of any symptoms, not a cure. I trust you will go back to health professionals about your pain, and anything you learn, would be gratefully received as hints for myself. Best wishes. Capricorngirl

lillol, May 28, 11:46am
Thanks Capricorn girl. I am going to the Dr within the next few weeks as I have scripts about to run out. I only go when I really have to. I will ask him, but I already know what he will do. I will be referred to the Lymphoedema nurse in Papakura. I have already been there a couple of times, but had no sign of it then, they measure you arm etc in several places. I'm scared I will have to wear one of those revolting elastic sleeve things. I was so proud that I had no sign of it until just recently. If I learn anything I will post and keep you updated. Thanks.

strathview, May 28, 7:31pm
Hi lillo, It can appear at anytime after you have had lymph nodes removed. You may have stretched the wrong way or got a minor infection in your finger as an example and that will trigger it. It can feel heavy or you can get achy pain or swelling that is quite uncomfortable. Do not muck around with it. Ring you doctor asap and ask to see the hospital physio or their lymphoedema specialist as it could take a few weeks to get in to see them. Uncontrolled swelling can get worse very quickly. In the meantime go to the chemist and get a tube bandage which you can pull over your arm to help reduce the pain. I wear a tube bandage to bed most nights as my arm aches. My swelling is mainly from the elbow down to my hand. You might also have an infection and need antibiotics so get it seen to now. I wear those sleeve things and they are certainly not revolting. It can be a bit of a hassle at times but this way at least I get to keep my arm. The other option is getting is cut off. If you have an infection or it is swelling it can be considered a medical emergency. My doctor always see me quickly if I think I have an infection.

lillol, May 28, 8:51pm
Hi strathview. Thanks for that information. I had 11 lymph nodes removed. I think it was from lifting something heavy. No cuts or abrasions or anything. I wore a borrowed sleeve on a plane to Aussie once and it nearly cut my arm off and it put me off. I will go to the dr ASAP. Thanks again.

olwen, May 28, 10:05pm
Info that I have seen suggests that gentle massage helps (imagine stroking a cat). Towards the heart (so upwards in most areas, but down if it's in your neck).

Pinc & Steel in many areas do physio for cancer patients which may include this technique.

happiclown, May 29, 10:16am
Mine arrived about 9 months after radiotherapy, so over a year from surgery.

Swelling, tenderness, and tightness can need pain relief for me.

Be very very light with massage. Ideally get a specialist to teach you self massage. If you move the tissues under the skin it's probably too firm. Seriously! Imagine pushing a few drops of water over a tabletop. If you push to hard it scatters. If you smooth it along it flows.

Also be very careful to move the fluid away from your arms ( you, like me, are a breast cancer survivor so I'm assuming, forgive me if I'm wrong, arm and or trunkal lymphedema) and anywhere you have odema.

I went for diagnoses of arm lymphedema. What I didn't know us that it effects my side much much more.

I wear compression sleeves and vests.

If I can help with talking about my journey I am always willing. Just remember that your mileage us going to differ to fit your unique physiology.

lillol, May 29, 11:47am
Hi Happiclown. I'm a four year survivor and I have had twinges in the past but nothing like the pain I have now. My arm is quite sore and I am struggling to lift anything, it aches all the time. I even found it hard to sleep the other night. It does look slightly larger than my other arm but my rings still fit, although they are a bit tight. I am going to see my Doctor as soon as I can get in. I work full time and find it hard taking time off, as you know you have a lot of medical appointments with BC, even years down the track, and I don't want to make anyone at work regret hiring me (started 6 months ago) and they knew I had BC when they hired me. My doctor is pretty useless and will probably just recommend I go to the Lymphoedema clinic. I will probably wait to get it officially diagnosed before I go to Pink & Steel.

lillol, May 29, 1:48pm
Dr appointment at 8:15 tomorrow morning :) And I got a lovely lady doctor, not the usual useless one.

hazelnut2, May 29, 4:54pm
Yay for having a quick appointment. You could also google how to do lymphodema massage. The lymph system is amazing, so learning about how it works first is really interesting!

I've given it a go as I have two small areas which have lymph fluid built up in them. across armpit tendon up chest jto collarbone, and below mammary fold, on left side. It doesn't get worse, so I imagine mine is like a pond with a drain which only lets the overflow leave. Our local female lymph specialist is only concerned with arm swelling, not truncal and just focuses on the arm. She doesn't even acknowledge truncal lympodema, let alone have self massage booklets!

There are very nice compression sleeves to wear, if this is indeed what is in your future, and you can order them from the States for fractions of NZ costs.

I wish you all the best! Big hugs!

happiclown, May 29, 5:31pm
If you can get a federal to a hospital occupational therapist. that is where they start teaching you to manage it all.

I do not have odeama in my hands so my rings are fine.

And yes. Sleep is quite a challenge. I find compression / support garments be such a relief.

The measurements. There are 6 down the arm and compared to the non effected limb.

lillol, May 30, 10:39am
Well I feel like a hypochondriac, neurotic old lady this morning. I went to the Dr and her diagnoses isn't lymphedema but a sprained arm. The muscle between my elbow and my wrist on the top (can't remember what it's called but apparently it's quite common). She measured both arms and apparently there is no difference so the puffiness must be all in my head. She did order a blood test though, just in case. I think it's from my job lifting really heavy files all day. So I have to give that arm a rest. Thanks for all your advice. Should lymphedema ever strike I will know what to do now. Thanks guys.

happiclown, May 30, 11:13am
I have never had or heard of a blood test for lymphedema.

Hope you feel better soon.

Oh. I have a 6cm difference in circumference between arms. It's noticeable but that's not a prob. It's clothing and comfort that bug.

lillol, May 30, 11:54am
6cm is quite a bit. She said the blood test is to test for inflammation? I have a sore knuckle and sore shoulder so could be arthritis as well as sprained arm. IDK but at least she's being cautious.

yapper, May 30, 8:42pm
You dont have to go to the 'useless' doctor but just ring and ask for the one you want. i know people are afraid to change but it's easy. i'd change if I were you - sounds like she's really nice.

lillol, May 30, 8:47pm
Yes she is. She’s a young thing but really lovely and thorough. Both my daughter and I really like her. I might just take your advice on :)

strathview, May 31, 8:41am
That is a good outcome for you lillol. The test for inflammation is also good. If I get an infection in my lymph arm I get a temperature and have to get antibiotics pretty quick. It is something you always have to be aware of as lymphoedema can trigger at any time for very little reason. Friend got it many years after her initial cancer treatment.

scottea, May 31, 4:56pm
Great news lillol - lymphoedema is the pits. I had it in my arm and it has since seemed to decide not to impact on the arm but the whole left trunk area. Mine started after a slight accident on a bus in Wellington - standing, holding onto a pole when the driver had to slam on the brakes and my left arm took my full weight to stop me from falling. Had an idea right away what the swelling was as had a fantastic doctor at the time.

Good to see both strathview and happiclown also give you information as it does impact on us in individual ways.

lillol, Jun 12, 8:29am
Hi, me again sorry. My thumb in my BC arm is really swollen and the knuckle is painful when I try to bend it. Makes typing challenging (my job involves a lot of it). If it is arthritis, could this cause lymphedema? Do any of you clever people know because my arm is still not right.

scottea, Jun 12, 6:06pm
I doubt it the arthritis caused the lymphodema as lymphodema is caused by the lack of places in your upper arm for the lymph to be stored/sifted/sent on its way - hence the drainage massage you do at least once a day. You might like to contact the Breast Cancer Society to find a lymph drainage specialist in your area and they will be able to advise you as to somebody in your area who can tell you what to do and to teach you one of the many ways to do lymph drainage. fit you with a compression sleeve, and answer any questions you might have. .

lillol, Jun 12, 7:49pm
Thanks Scottea :)

happiclown, Nov 6, 10:57pm
Get a referal to the hospital occupational therapist. The garments and massage are covered by public health.

As is training in self massage

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