Hello Everyone
I had breast cancer surgery 2 years ago followed by 5 weeks of RadioTherapy, two weeks ago I was diagnosed with the dreaded lymphodema, my right arm is noticabaly bigger than my left and I can live with that, what I am struggling with is the constant pain in my elbow, I find it dibilatating and even simple tasks like picking up an empty pan is very painful. I have a prescription for special sleeve ( I can’t remember the name of it) to wear and I am hoping that it will help. Has anyone experienced joint pain and found something that helps? I did wonder if a cortisone injection would give me some relief but in the mean time I am taking over the counter pain killers.
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Hello
I could have written the post above and came on line to try and get some advice. I had a mastectomy and ANC in May 2010 and have been noticing some changes in my arm, it is a bit swollen mainly under my armpit and round the back a bit. Also around the elbow. It feels heavy and dragging and achy a lot, and just lately i have had pain around my elbow and mild pins and needles sort of, its hard to describe but like you picking things up can hurt. I was worried about what it was although I think I hold my arm differently and that has caused muscle and joint pain. Its not sharp pain and hurst when I stretch my arm out. I phoned my BCN today and she put the fear of god up me saying lymphodema isn’t painful and I needed to get back quick to my oncologist! She may be right but surely its possible its something else to do with the muscle changes or lymph ?? I am a J cup and haven’t had a reduction yet so very misaligned, I had a deep mastectomy as I had lobular cancer and 3 tumours. I am feeling very anxious, which isn’t like me I am usually so positive, just glad to be here and determined to stay. Don’t know whats wrong with me - any thoughts and comments very gratefully received, xxxxx
YOUR BCN IS WRONG!! Lymphoedema is painful!!! I am not the only one who says so. Of course you should go to your onc, and it could be anything, I don’t want to give you false reassurance. But the “heavy draggy achy” thing is a classic symptom, and when I first had my lymphoedema before it was a little under control, it both hurt and, because the swelling put pressure on nerves, the arm did feel tingly.Also, did you have cording? I know it can recur.
Get it checked out and set your mind at rest.
Q
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Oh God now I’m crying! I know it needed to be checked but I can’t yet put the thought of getting anything checked with putting my mind at rest, does that make sense? What is cording? Don’t know if I have that, I know I use my arm differently and place it across my chest a lot which must make it seize up a bit. I asked my onc what i needed to look out for, not that I wanted to know as I was determined i would be fine but he just said, you’ll know if anything is wrong. I heard pain can happen even when swelling isn’t bad. Sometimes I feel so optimistic and other times feel like I should just get a bloody grip! I would tell anyone else they have a perfect right to worry and feel sick of it but for me I feel like I have to be sodding brave!! I’m not and even when i think the profs might be wrong I find it hard to ignore what they say … god I do go on, thank you so much for replying - i feel I can breathe again ha ha x
Hi Woodlandmanor, hopefully you’ll feel better having posted on here. I’ve had my share of dark noights of the soul. My thoughts run away with me into horrible places.
My lympho hurts if I’ve put a strain on my arm even when I’m wearing a sleeve so I agree it does hurt. In fact that’s how I self diagnosed myself when I first began getting pain in my hand. As a friend of mine said “we’re different now because we’ve had cancer” and that is so true. What others can dismiss as a pulled muscle we start worrying about. If you go back to your Oncologist s/he can refer you on to a lymphodema therapist who can measure your arm, get you a sleeve etc- if that’s what is needed. For myself I think it’s better to make the appointment as there is often a wait and then if you decide you don’t need it cancel and someone else can use the space.
Victorian lass- I’ve got pain in my wrists which is made worse by use. The lympho arm wrist is much worse than the other one. I tried to talk to my GP but had a list of other stuff to ask about and it got lost in the discussion. I also talked to my pilates teacher and she told me that wrist pain can come from the nerves running from the back of the neck. She suggested neck exercises and “roll downs” which I’ve been doing and it has helped a little. I also read that a side effect of arimidex can be increased carpal tunnel syndrome. Maybe talk to your GP?
Try this
www.thehaven.org.uk/how-we-can-help-you/lymphoedema
And I know that post should have been titled Quail waffles on about lymphoedema–I got carried away!
Woodland & VL,
I know just how you feel. I’m having an “odd” knee pain, and it’s scaring the wits out of me, and it is hard to know what’s paranoia and what’s rational concern; add to that the “I can’t do this again” fear and it can be quite overwhelming.
But back to lymphoedema. There’s all sorts of things to do to help–to start with check out the Lymphoedema Support Network: http://lymphoedema.org/
Things to remember: deep breathing helps. Keep your arm elevated as much as possible. Drinking water helps. Salt or alcohol can make it worse. So can extremes of hot and cold (including weather and bathing). The Haven has some lymphoedema excercises on their website that may help.<cite>www.the<b>haven</b>.org.uk/how-we-can-help-you/<b>lymphoedema</b></cite>
There is a bcc factsheet on lymphoedema too. Once you start wearing the sleeve it WILL help–especially with the ache. Raise your arm over your head (or as high as is comfortable) and pump your fist five to ten times. Exercise helps, but not excessive excercise–gentle and slow is the rule, but exercise gets the lymph moving. Lots of women have said swimming helps (I don’t have a pool to use).
There’s an American website “Step up Step out” that I find helpful, but I’m a Yank, and many of the UK women seem to be uncomfortable with it.
Gently stroke your arm from the top (by shoulder) working your way down for about ten minutes. Divide your arm into about six 'sections" and stroke each section upwards in short strokes (like you are stroking a kitten–the lymphatic system is RIGHT under the skin so pushing hard is counter productive. A video that shows a good way of stroking is here <cite>www.youtube.com/watch?v=pSD7j8mSVkM</cite>
She has you stroking more than just your arm, but I would wait for your lymph nurse to help you with that.
Insist that you see a trained Lymphoedema specialist.
Thank you so much that has all made me feel so much better, I keep remembering that at my ripe old age (I’m 52) all sorts of things will start to hurt and fall off cancer or no cancer, but pain is pain and its all a worry. I am due to see the onc on Monday 14th but feel much more able to have the conversation with him. I will read/look at all the above ideas and I am sure they will help. I hope you knee pain gets better, maybe its good old fashioned arthritis! That sounds like a blessing doesn’t it?
I sometimes ‘feel’ my bone marrow!! How weird is that and practically talk with my ovaries!! Sometimes all this being ’ in touch with my body’ is a curse! I guess so much has been altered and is still settling down. I try not to go on to others around me, I am so bored with myself I can’t think how they feel. You have cheered me up, its not about being less scared - perhaps we’ll never be that, but it is about being able to do it, face it and still look forward. Being an apple pie not an apple crumble!! xxxxx
Dear Lympho Ladies,
I am single breasted man - mastectomy, nodes, 3 x FEC, 3 x Taxo, Rads, 2 years Arimidex, 3 years Tamoxifen.
I have slight lympho in my arm and shoulder (bulky under-arm and shoulder blade) and when I ride a motorbike, which involves reasonably still horizontal arm for about an hour, My arm feels really heavy and it is hard to bend my elbow an reach up to open my visor.
The lympho specialists said that I would be better off wearing a sleeve so I have a selection - including black for the bike and tribal tattoo for social events. The arm is now better for motorcycling but since wearing a sleeve, my elbow hurts right on the bone.
I realise that this is opposite to how this thread started, but does anyone else have an aching elbow since wearing a sleeve, and how long do you wear yours for?
I work in an office so my new ache isn’t particularly work related.
I really didn’t want to join this club…
best wishes,
Clunk
(58 y.o. man)
Hello Clunk shift,
I had to laugh at your post - lympho ladies!
I have lymphodema in both arms (bilateral breast cancer). In one arm its very mild and in the upper arm, but my right hand and forearm is badly affected and I wear a glove and sleeve. So, although I dont get elbow pain I definately get an aching hand. Its very bad tonight- not helped by typing. I have to wear it all the time as my hand swells so much. But, had a couple of suggestions/thoughts?
Is your sleeve rubbing?
Have you tried the exercises, a massage ball? Taping? I used to be a keen cyclist but have been advised to avoid keeping the hand/arm is one position for a long time and that bearing the upper body down on the affected arm is not a good idea as the lymph will collect. Was just thinking that maybe doing some exercises before/after might help?
Agree its not a nice club to join, even more exclusive than the breast cancer club.
Rattles x
Thanks Rattles,
I do some of the excercises which help for the shoulder - as the sleeve also helps, but I haven’t seen a massage ball or taping.
I have used a ball on my foot before to ease a tight cartilage but have no idea what taping is.
I do cycle too when it is dry, and I cheat by using electric asistance as I can’t bring myself to travel slowly.
Leaving the sleeve off hasn’t helped and only made my shoulder worse, so I am back to all day in one sleeve, a couple of hours break in the evening and then a different sleeve at night.
I haven’t noticed any rubbing but one sleeve (a lymphodiva pattern) doesn’t grip at the top for more than about 6 hours and if it slips down it bunches in my inner elbow which is really annoying.
I shall have to experiment with exercises i think, so would wlecome more details on balls and straps - all in the best possible taste.
thanks again,
Clunk.