Wonder if I can pick your brains for some advice?
I was dx 2004, bilateral mx, lymphodema (trunkal) on right side in 2006.
I moved to a desk bound job 2 years ago(2009) after not coping in a clinical nursing environment.
Hoever, since having to use a mouse (right handed) I have been getting swelling in my arm, and now this appears to be going into my hand. My arm feels heavy and achy too .
I have seen my lymphodema nurse who thinks it could be lymphodema developing in my arm and has given me a sleeve and glove. This does help, but I am beginning to feel very uncomfortable in the arm , despite wearing the sleeve. It feels much better away from computer work.
Has anyone else had this problem, and if so, do you have any advice for what I can do? Thank you XXXX
On a purely practical note, could you train yourself to use a mouse with your left hand? You can switch the buttons over too, if you’re happier doing most of your clicking with your index finger. (Makes it really tough for other people to use your computer too, so that’s an added bonus!)
It may be a ‘simple’ case of repetitive strain injury - I suffer with that in my right hand, ibuprofen and anti-inflammatories may do the trick - also, does your work have an occupational health or health and safety advisor. It could be that you need a different type of mouse, more ergonomic, I have one with the buttons on the side rather than flat to the desk and that really helps.
Hi everyone, thank you so much for your helpful replies. I apologise for the delay in replying, but due to hectic lifestyle and the memory span of a daffodil, I actually had forgotten that I had posted this !! Thing is, as I was browsing through the latest posts, I had a feeling there was something I should have been looking for … oh dear…
Your comments have been really useful. I had a terrible day last week when my arm felt as though it was going to explode. Got home and had to take bra off, as trunkal lymphodema had worsened and my arm felt awful. this is not a gook look when you have no breasts…
fortunately I was then off for 4 days, in which all seemed to settle (stayed well away from computers0 and then went back today. I only work 6 hr day, but after 4 hrs, my trunk felt swollen and again, my arm felt awful. I have come home now and yet again, have had to take bra(+prostheses) off due to trunk) . feel a bit bummed about it now.
i have got gel wrist supports for keyboard and mousemat, and am still wearing sleeve. I have noted all your great comments and will have a go. I have tried using my left arm, but didn’t get very far so may have to persist a bit more. Unfortunately I have also noticed an increasing pain in my left wrist, which i have been trying to ignore but seems to be getting worse.
I think the time has come to contact OH again. i have to say, if this continues i’m not sure what to do…
Just an update. I contacted OH to ask for a workstation assessment and they have told me that this has to be done through something called “Access to work”. Has anyone had any experience of this?
I was also told to cone in and see the OH doctor because of all my other"problems" (fibromyalgia, fatigue).
I contacted Access to work who said that i was eligble for an assessment and to complete some forms so that this could be done.
I had my OH appt today with the dr who seemed surprised I was there. He then said that I have probably got lymphodema in the arm because of lack of exercise and use since i now do computer work. i was abruptly told to go back after the assessment if I need to. Feel a bit deflated.
I had some days off last week and things were much better. however, after first day back, trunkal and chest lymphodema really bad, and nearly couldn’t go into work yesterday because I couldn’t bear to wear a bra (not a good look when you’ve had a bilateral mx).
Just at a loss what to do really…xxx
Ooh Happy shopper, I will round up the lymphoedema gang and we will give that OH doc a good slap,does he actually know anything about lymphoedema!!! You do not get it through lack of exercise or use…jeez .
I would get back onto your lymphoedema nurse asap, I get manual lymphatic drainage for my trunk and breast and it makes a huge difference for me,breast was a huge hard uncomfortable lump before and now it’s as back to normal as it could be and I have a sleeve for my arm. I have been shown how to self massage and do that daily and that keeps on top of it for me. Your nurse should be able to help with this or suggest taping or a compression garment to wear. I have one of those but it drives me bonkers. Good luck with getting a quick appointment with someone who actually understands your condition and hope you get some relief from it soon .
Thank you for your comments, I really appreciate them all. And apologies for the delay in replying - I have been away on holiday and just got back today.
I thought i would give you an update. I saw my lymphodema nurse and she said exactly the same as you!!
Incidently, my lymphodema nurse has left the NHS and has now set up privately, so I managed to get to see her rather quickly. i cannot get to see anyone NHs until September, and then they are unable todo any teatment(!) due to staff shortages!! How unbelievable is that? So, no option but to pay for treatment really, because there is no way I can wait that long…
I now have an appointment for a workstation assessment by “Access to work” and will have to wait and see what they say. However, I cannot see that it is worth staying in a job which causes lymphodema to worsen. Help!!
XX
Hi norberte,
thank you for your reply, you have reassurred me about my Access to work assessment. Belive me, there are days when I just feel I have to go home after just a couple of hours - my arm feels soo heavy and aching, and the right side of my trunk gets tighter too- when I leave to get into my car it feels like a football wedged under my right arm , but then you guys all know exactly what I mean…
Yes, I agree with you about the appalling lack of lymphodema service - all provided by the same NHS trust which I work for - ironic really, isn’t it?!
I guess I was “lucky” that the day i rang up to get an earlier appt, I got my lymphodema nurse, who said she was leaving the next day because she “had had enough” (took early retirement) and was setting up privately. So I went to see her last week, and paid £30 for over an hour -it was really nice not to be rushed! I have had no option but to book in to see her again, because my NHS appt isn’t until mid september - not acceptable.
anyway, despite massage I am still feeling pretty swollen and umcomfortable, and maybe a bit concerned because I usually notice the benefit shortly afterwards, and this time I haven’t. I have another week off so that should help. I am very concerned, because i don’t want to stay in a job if it is going to cause my lymphodema to worsen- it’s just not worth it.
XXX
Since when has lack of exercise caused lymphoedema??? Happyshopper your GP needs to write an educational letter for the OH doctor explaining that in her opinion the mousework is making your LE worse and she will not allow you to go back until your job is re-assessed and modified to make it safe for you to be there, or until a different role is sought that does not put your own health at risk. NHS should not be in the business of causing illness.
hi Norberte,
Thank you for your post - it did make me chuckle! Bagpipes-much better than football!!
just to update - I had my access to Work assessment yesterday- wow, very thorough! he took photos of me sitting at desk, measurements etc
of me(arms, legs), my chair, desk . To cut a long story short, he has suggested that I have some kind of arm support that attachs to the side of the desk, which will take the whole weight of my arm and reduce pressure at my shoulder, thereby hopefully reducing the pressure on my trunkal lymphodema. He also suggested some kind of different mouse which can be used by either hand - a bit like a small screen that you glide your finger across. Also a foot rest (get backache) and a new chair.he even suggested a stapler that you don’t have to push down on. I do not want to see my managers face when the bill for that lot comes through! I would thoroughly recommend them to anyone experiencing similar problems (as long as your employer agrees - i think the assessments are free of charge (esp if history of breast cancer as covered under DD Act) and in some circumstances they may pay towards some of the eqipment.
Unfortunately it doesn’t address my other probs - muscle/joint pains- fibromyalgia (and foggy brain/poor concentration)- my day off is spent sleeping because I’m so tired.
Lets see what happens next - I think they now send a report through to my manager with their recommendations.
will keep you posted!
Best wishes to all XXXXX
I’ve read all this with great interest and though I dont have lymphodema, have had a mastectomy and total node clearance and am anxious to do all I can to avoid lymphodema. Is Access to Work available to all … or just those with problems… seems a bit like closing the gate after the horse has bolted - surely employers should be looking at trying to avoid any further illness or complication? I work at a computer for 7 or 8 hours a day two weeks out of four … should I be asking for this??
Im in the same boat as u Angielav, i have had full node clearance & work at a computer all day. I do take rests when im there anyway but im really worried about lymphoedema. Im interested in trying to help myself by prevention as well. Im going to be asking my workplace for some help with all this.
I am going to speak to HR at work and find out if I can contact Access to work Scheme. Although I don’t have lymphodema, I would like things adapting to ensure I stand a better chance of not getting it.
Hi all,
with regards to Access to Work, I had originally contacted my Occupational health department to explain that I was having problems, and could they do a type of work-station assessment. I spoke to the OH nurse, and it was she who suggested that I contact access to work (I had never heard of them before this)to see if they would do the assessment.
I think I got the number from their website (or she gave it to me - brain fog-sorry) and rang them myself.I explained what my problems were, and they agreed that I would benefit from a workstation assessment. I was told this would be free (as soon as I mentioned the word “cancer”). They sent out some forms to complete (very straight forward) and once I had posted these off, I was contacted almost straight away by an agent who covered my area,he then came out to see me in my workplace.
I believe the assessment is free (you would need to check with them). After the assessment they tell you what they think would help you (equipment) and I am now waiting for the written report with those recommendations.
When I spoke to them on the phone they did say that in some cases, they can help with funding some expenses (for any required eqipment), but you would need to check that with them. I will let you know when I get the report.
The link is direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347
Been in touch with Access to Work and they are gonna come back to me. If they can come and give some recommendations that would be great. I’ll wait to see what they say before I get in touch with HR. Keep you all posted.