Lymphodema, work, IHL.....

Hi all,
I’m afraid I’m back again…
I continue with my trunkal lymphodema and now right arm (dominent) LD, for which I where compression garment , sleeve and glove. Due to note writing (lots) in previous job my arm swelled, heavy, achy etc, so I changed jobs 31/2 years ago from clinical to non clinical nurse, now at a desk as I thought this would keep me working.
However, my arm does not like computer work and despite modifications, change of hrs, work pattern my LD flares up so my days off are spent in great discomfort (settles when on annual leave). I have also got a bit of a problem with wearing a sleeve and bent arm whilst typing, so am building up nice swelling to forearm. If I take sleeve off, I after work I feel I am going to burst, even though LD is fortunately still “mild”. LD nurse says LD “doesn’t like repetitive movements”. My |trunkal LD is now extending across my chest to the sternum.
After much deliberation (and about 5,000 posts from me on this subject-sorry for yet another one ) I have finally made a decision to apply for ill health retirement (very scary).
I just can’t help feeling very guilty about this and I am being made to feel I’m giving up too easily, even though I just don’t know what else I can do. So, as a last roll of the dice, has anyone else dealt with this and did you find anything that helped you?
I know I am extreemely lucky in that my LD is mild - but I would really like to keep it that way. I did have a bout of cellulitis to trunkal LD a few months ago and since then the LD seems to flare up easier than it used to.
Any advise or tips for anyone who has had similar would be really welcome - then I will know I can’t do anymore and carry on with my IHR application and will promise not to post anymore on this subject.

Hi Happy shopper

I believe i was dx at a similar time 2004 and I developed LD in 2006.

My LD is also mild but in the words of my LE nurse “easily aggravated” I worked in an office and it caused real problems so I went for IHR and was lucky to get it. I had a letter from the LD nurse who had measured my arm before work one morning and after for comparison and then she went on to say that continuing to aggravate it this way would make the condition worse.

My dominant arm is the one affected and I really felt that I had no choice. I was very lucky to have a supportive manager and colleagues and I was never made to feel i was giving up.

I do miss working but my LD is easier to manage when i can do things at my own pace.

I wish you luck with the application

Hi Frazzledfifty (great name),
Thanks for your advice. Yes, like you it is my dominent arm and side of trunk that is affected so it makes it very difficult to try and continue with something that causes so much aggravation.
This weekend, I also recieved a letter form HR to inform me that I am now at risk of redundancy too. I now have to make a decision on what to do:-

  • Leave and collect redundancy pay (2 year’s pay)- Iwill then have the worry about getting another job as the same issues of computer and clinical work will arise, or also applly for IHR after I have left (this will be harder)
  • Procced with IHR (and forfeit redundancy pay) and if unsuccessful, appeal.
    With regards to LD, I do not know what other treatments etc that I can do and feel that I have tried all options to remain at work.
    I have got to phone OH and ask them whether they will support an application for IHR. My head feels like a washing machine at the moment …


I came on this forum to ask about getting ill health retirement with lympho! it looks like you have the same kind of problem as me. Mine developed while I was still having chemo 4 years ago and is aggravated at work by lots of different things. Despite having a risk asessment etc it isn’t taken seriously by managers. My post cancer occ health review was carried out by someone who had no understanding of the condition as she wrote in the report that it would improve within 3 months! I was going tol make a complaint about her lack of knowledge and misinformation but loist interest in persueing that once I was working again.
Currently I’ve been off sick for a while with a different issue unconnected to cancer. I’m under a lot of pressure to go back to work as my absence is “detrimental” to the place I work and will have my absence managed. So I am asking Occ health to advise on my chronic condition of lymphodema when I have my review. A bit of a delaying tactic but I also wonder if it wiis a step towards ill health retirement if I return with “reasonable” adjustments as I can’t lift heavy stuff, type or write for long etc.
What are the general guideline for this? I am under 55 which I was told is the cut off for being given ill health retirement. I love my job but if I can’t do it properly or end up being disciplined because of absence (I never take sickies for a bit of R&R) maybe this is a solution to persue.

Hello littlemrs and happyshopper
I didn’t mention in my post that I had had all possible adjustments made including change of desk, left handed mouse and numbers keypad, voice activated software (excellent program but could not work effectivley with our hardware) and change of working pattern.
My pension plan terms were "not be able to do my job effectively".

I know I was lucky and that sometimes the criteria is that you are not able to do any job. I really do feel for you both and wish you the best of luck.

I’m a bit worried that “not able to do my job effectively” or “reccomended adjustments” are considered unreasonable by my manager = contract terminated at 53 rather than medical retirement. I think, like you frazzledfifty, I need to have adjustments made and having retuirned to work find my lympho is aggravated. It’s like I have to try and fail before I can be released with some money!

Hi frazzled fifty and littlemrs,
I went to see my union rep a few days ago regarding IHR and she feels that I may have a good case, but obviously there is no guarantee, and I am considered young so may be harder to get(I’m 48). I need to confirm that OH will be willing to support IHR application because if not, unlikely to succeed. I have tried to contact the OH Dr and can’t speak to her until next week, the day after my meeting with HR and my manager!
I have had the following adjustments made which have not helped:

  • Work station assessment 2011 with recommended equipment installed (chair, touch pad mouse, arm support, footrest)
  • Different working pattern (shorter days, days off midweek,reducing work hours, regular breaks)
  • Compresssion sleeve/glove, compression bra garment
  • Deep Oscilation (private type of MLD - NHS LD clinic MLD waiting list of over 1 year!
  • Advice from LD Support Network
  • SLD and other self management such as skincare, maintain healthy weight (or try to!)
    I am really unsure what more I am able to do - frazzledfifty, does this sound as though reasonable adjustments have been made?

Hi Happyshopper
It’s difficult for me to say as whatever i think is not neccesarily the same as the official stance. It looks to me like you have tried everything.
If you have the support of your LD nurse Would it be possible to do what mine did and measure befor and after work. Mine was then able to confirm that work was aggravating the arm and she did me a letter stating that this had been done and that continuing with this aggravation would make the condition worse.

I think that really helped me. I really hope it works out for you. Oh and i was 51 when i “retired”

Hi Frazzledfifty,
Thanks for your comments. The arm measurment is a really good idea, but at the moment I am off sick so as not to exacerbate my LD any further.
I do remember having arm measurements taken in December 2011, and this showed that my right arm was bigger, especially around the foream (where I bend my arm and where I have discomfort with the sleeve on bent arm). These measurements were taken after I had been to work.
I then got remeasured 6 months later and this showed my measurements had come down a bit. These measurements were taken after I had been on annual leave for a week and away from work.
I am not sure that I can use these to support my application or not. I forgot to say in my previous post that I have already moved jobs (redeployed myself) in order to continue working, and in addition also have autoimmune disease which causes extreme fatigue and brain fog.
I have my meeting with my manager, OH and RCN representative tomorrow and I am terrified…

Dear all,
Hope you are all well and had a lovely christmas. Littlemrs - have you had any more support from your workplace?
Sorry, but I am feeling a bit down in the dumps at the moment mainly due to the attitude from my manager and work collegues.
The meeting with HR and my manager went ahead regarding IHR and I felt quite emotional about it all. Unfortunately, I got the feeling from HR and my manager that I was “exagerating” how bad things are , surely a bit of swelling isn’t this bad, surely I should be able to manage on shorter hours, especially with my equipment. Fortunately OH were more supportive but as a result, I’m beginning to question whether I should just be getting on with it and simply put up with it.
Is it true that continuing to aggravate LD will cause it to worsen?
My latest LD follow-up was a few days ago and the tightness I have been getting in my right hand for the past few months now confirms LD to right hand too. My sleeve and glove are being changed to sleeve with mitten, so hopefully that will help.
It’s really difficult when it’s hard for people (i.e. my manager and work collegues) to understand the discomfort I experience with thi when it is aggravated.

I am often made to feel the same way by my work as well - as though I should just ‘shut up and put up’. I hate it. I am a clinical NHS employee as well and I really feel that it ought to be just a little bit easier than this. I have another appointment with OH in the new year to see if they can support me again, but TBH I worry that they will just start rattling on about depression again. I am not depressed - I only have a bad time when work stress or pain gets too bad - if I avoid the pain and stress then all is well basically.
I am still in a clinical role and my LD affects my hand and lower arm these days. So at work I can wear no support. I still have to do 13 hr shifts though. I work PT else I obviously couldn’t manage. But I totally live in fear of a flare up as I know that I am ina role at the moment where I can’t even use any compression. I don’t want to be off sick as I just want to complete these training years so I can actually do a job I can do instead of all this nonsense! I was a medical SpR before BC and am now retraining to be a GP, and am therefore currently doing an SHO job in Orthopaedics. Yes. Apparently that is just fine. They now want me to move in April to a job that involves having to assist in theatre. Brilliant, since I clearly can’t do that without ending up off sick within a week.
I really think the NHS should be more understanding.
IHR is simply not an option for me. I am 32. I have children and a mortgage etc.
I understand why you feel down in the dumps, and hope you can make your decision soon.

Dear Manny,
I have just read your post with great sadness. i understand what you are saying regarding the mention of depression, and sadly this is trotted out to me as well. Yes, I totally agree with you with regards to the stress at work combined with the discomfort -it’s alot to tolerate and when these contributing factors are taken away, things are much better.
I can relate to you not wearing a sleeve at work - before I took this desk-bound job I was clinical too. I worked as an ENP and developed my truncal LD after a bout of cellulitis following recon.
Constant note-writing led to heaviness in my dominent affected arm and despite being given a sleeve to wear, this was not possible in the clinical workplace. Intolerance from managers and colleagues ( I became slower in completing my patient notes as had to keep stopping due to aching arm) as I was taking longer than they did gave me no choice but led me to change my work path. After 27 years of clinical practice I felt I had no option but to become non-clinical. the other concern I had was I was always concerned of the risk of sharps injuries to my affected hand.
I really think that OH should be looking after you alot better- you shouldn’t be put in a stuation where you are at risk of exacerbating things , especially as you are unable to wear compression. Unfortunately i didn’t challenge this, carried on working as you are doing, and consequently now have LD (mild) in my arm and hand as well as my trunk. I really wouldn’t like to see yours deteriorate any further, especially as you are so young and have young children to look after. I turn into grumpy mum at home when mine flares up, so it certainly affects my home life.
How much longer do you have to do in order to complete your GP training? Is there any possibility that your rotation placements could be changed to acomodate your LD? Perhaps your LMC, in combination with OH could have some influence?
Take care Manny X

I have found myself in the same situation - I developed lymphoedema in Oct 2011 after surgery in May same year.I am a clinical specialist physiotherapist (paeds) working in an acute hospital and have just received word I can be retired on ill-health.Due to infection control policy I cannot wear a glove and sleeve in the clinical setting and the Trust was unable to offer me anything else,including job share!!! So,I have to take off the garments to do clincial and then put on again.I also manage a service and the computer and sitting make my arm worse.There has been NO reasonable adjustment made and I had no choice but take this way out (I am 49 and can retire at 55).I have leave to use and will be away by end Feb. I have been fully supported by the oncologist and surgeon who say I must wear compression garments to control the arm swelling (I know that being a physio!) and both wrote reports for the pension process.I have been seeking advice from my union and I will be taking this further. At this stage I am looking forward to getting away asap due to the lack of support in the Trust.
To come through a cancer diagnosis and treatment and have this problem of lymphoedema is the worst part for me.
Good luck ladies

Dear Katyb,
I am so sorry to hear that you have had such little support from your trust during this difficult time. When I was clinical it was much the same for me too, but I was not given the option of IHR at the time, just told that I had to find myself another position or have my contract terminated - simply because I needed to wear a sleeve and wasn’t able to!
This is what I have done and now this isn’t working for me either (same trust by the way). It is unfortunate that the NHS, in some cases and Trusts, are so uncaring and utterly unsupportive. Good luck with your union and I hope they are able to help.
I am just completing my section of the IHR form before I forward it onto OH. My manager has just told me that in light of a letter from the OH dept, that HR and herself need to see me in a formal meeting. I don’t know what this letter actually says, but my manager is indicatiing they need to look at redeployment options(not that there appear to be many jobs out there at the present?). Scary.
I have just written a statement to be included in the IHR application form explaining what I have done, my progression of LD etc. and other medical issues.
I also have a supportive letter from my LD Specialist nurse who has advised that despite wearing compression garments my LD is aggravated by IT work and confirms that I am recieving all available treatment options, no further treatment options to offer me, and in order to manage the LD I should avoid activities which continue to exacerbate symptoms, such as prolonged computer work and handwriting, and that by continuing with these activities will put me at risk of further deterioration and will be detrimental in the long term.
I hope this statement will be OK - I understand OH is also writing to my GP too.
Like you katyb, I am 49 years old and can retire at 55. I wish you all the best, take care, XXXX

Dear all,
I thought that I would just update you - I have just recieved a letter from NHS Pensions stating that my application has been successful and I have met the criteria for Tier 1 and Tier 2 (does that mean I will get Tier 2?).
I am so relieved that it is all over - my Union support has been amazing and I would just like to thank all of you on here who have offered support, comments and advice - thank you so much XXXX