Has anyone had a made to measure armsleeve and if so where did you get it from.
I’ve got a prescription for one made by Jobst which are the only ones available on prescription but the 3 chemists i’ve contacted do not have an account with them and have never used the company. I can’t believe i’m the only woman in the area to have such a prescription. Anyone any ideas?
Kelley
Mine was given to me by my breast care nurse. I go to the lymphodema clinic every three months. She measured me and ordered me two sleeves (already have one). Just waiting for her to ring me to tell me that they have been delivered
Do you have a Breast care nurse /lympodema clinic that can do this for you?
Mine are based at my local hospital
Jools
Hi Jools,
My lymphoedema physiotherapist refuses to get me a made to measure garment- she says I’m not bad enough and a ready made sleeve is perfectly adequate. (Despite the fact that my last sleeve made my upper arm bulge and seemed to “trap” the swelling in my arm.
I was measured for a sleeve by a therapist in Austria where i went to have treatment. I asked for a Jobst as i know it is the only one available on prescription. My GP is happy to prescribe it for me but sourcing it is proving difficult.
Kelley
Hi Kelley - don’t know if this helps, but…
I’ve had made-to-measure sleeves before - but I had to get them through a private MLD therapist - couldn’t get any help from the NHS.
They came from Haddenhams Healthcare and I was really pleased with them.
Hi,Kelley
I got one of my sleeves from the lymphodema clinic
The second one i got from my G,P.
Its made by Medi U K in Hereford and called
[Mediven Armsleeve]
Hope this helps you
June
Hi June,
was it made to measure? And if so who measured you for it?
Kelley
Hi. Kelley
Yes the first one was measured by BC nurse
at the clinic,
June
I have made to measure sleeves on the NHS. My PCT seems to allow various companies to supply them. I’ve currently got mediven ones but have had another company previously whose name escapes me. I think it could be a PCT decision which company you can use rather than a general NHS one.
The only thing that I remember when I was being measured for a made to measure sleeve was that different companies needed different measuring points.
If your GP makes out a prescription then surely it is up to the chemist to source it or have I got this wrong.
I would go back to your lymphoedema clinic and push it again - hard I know but i struggled with off the shelf sleeves as my hand is a different size to my wrist measurement and I have long arms so they are usually not long enough for me either.
It is another postcode lottery problem as some NHS places provide MLD whilst others don’t.
Good luck - it’s a nightmare isn’t it
Kate
I originally was given off an the shelf sleeve by BCN which worse than useless, so after insisting I was then referred by the BCN to a proper lymphoedema clinic (which is in fact part of a charity and not within the NHS). To start with my sleeves (made by Jobst) were measued and supplied by the clinic itself, but about 18 months ago the new system of taking the measurements and then giving this chart to my GP was introduced.
My GP writes a prescription and I manage to get this sorted out by my local Boots. When I first went in the pharmacist had not come across these prescriptions but told me he would pursue and sort it out for me. The details and fax numbers are on the Jobst chart, so there should be no excuse for not being able to deal with this type of presciption for you. Please don’t settled for a badly fitting sleeve (as this can make things even worse) and insist that the chemist at least try to get this done (if part of a chain, go higher up to get the local chemist to do his job properly).
Good luck and hope you get it sorted soon.
Roberta
xx
Suggestion to Moderator
Would it be a good idea to have a separate discussion category for Lymphoedema and related issues?
What do others think?
Thanks everyone for the advice. My problem is that my lymphoedema physiotherapist refuses to measure me for a made to measure sleeve as she doesn’t consider me bad enough and insists that off the shelf is adequate. She refused to accept that they may have contributed to the fibrosis in my upper arm. I think the sleeve trapped the lymph. I got my arm measured in Austria where i went for intensive therapy in the absense of anything in the Norwich area.
I have mild lymphodema, 7% I didn’t even realise I had it until It started aching after a cut finger that I foolishly didn’t clean properly (I had forgot the warnings!)
Had my first app with LO nurse last week and was shocked that she even suggested a sleeve. I am waiting for them to arrive and have no idea what make they are. I have been massaging my arm and there has been a reduction in swelling. I am very reluctant to wear the sleeve as it will just tell everyone ‘here I am, breast cancer sufferer’. Plus, I get so hot with flushes I feel this will make me even more uncomfortable, but she says it will prevent it getting worse.
I must admit, all this really gets me down at times. All this ‘you will never be the same again’ crap. It’s a small thing compared to some ordeals but I just want to be ME again. No false boob, thick hair again, not so fat, sex drive would be novel, and to not walk like an old crock from arimidex aches. And yes I know I’m lucky and I’m still here, but why me? Why us?
Irene
Hi Bahons2
Thanks, I’ll pass your suggestion on the the website team.
Best wishes
Lucy
Yes please can we have a separate discussion category? When I was dx with lymphoedema I would really have appreciated it
Hi all
Thanks Lucy and Road Runner for your positive comments re: a dedicated lymphoedema category.
Irene - I know just how you are feeling - and you have every right to. The lymphoedema is such a visible reminder, not only to you, but to other people as well. It just seems to add insult to injury. Also, the sleeves can be far more noticeable than the swelling itself. Having said that, your arm may be more comfortable with a sleeve (even if the rest of you is overheating!) and it should help to prevent it getting worse. I’ve had lymphoedema for years (12), first in one arm and now both and I can both rant and bore for England on the subject, too, so I’ll shut myself up now!
Do let us know how you get on.
S
hello Kelley,
I am sorry to read about the difficulties you are having in obtaining a sleeve for the lymphodema you are experiencing.
In the first instance I would suggest going back to the practioner who prescribed the sleeve and letting them know the difficulties you have encountered, and I hope they can sort this out for you.
In addition to this you may find the lymphodema support network helpful, I have included the link to their website below, and also a link to the booklet Breast Cancer Care has written on living with lymphodema.
lymphoedema.org/lsn/index.html
breastcancercare.org.uk/docs/bcc_lymph06_0.pdf
You are also welcome to call our freephone helpline and speak with one of the team for more advise
Best wishes
Hi, Ladies
Hope we get a lymphodema category.
I’ve just got back from seing the lymph specialist because my sleeve started to roll down. She measured me again and decided in her wisdom that yes, my arm has swollen more. She disappeared for ages and came back with a different sleeve, a Jobst. Said that wouldn’t roll down. She even gave me some skin glue just in case. It had rolled down before I got back out to the car. Any suggestions as to what I can do now? Does anyone use a compression pump? Somebody I know uses one and it really helps her, but they don’t use them at my clinic. I think they’re about £1,000 to buy.
I asked nurse what percentage lymphodema I had. She got out the calculator and worked out that when I went for the first time in August it was 22% but now it’s 28%. I think someone on here or perhaps in another thread said hers was 7%, so let’s hope yours doesn’t increase.
I got lost on the way to the clinic and was 15 mins late and in a tizz. They’re doing building work and the cafeteria was closed. She offered to make me a coffee but I’d been there almost an hour and just wanted to get out. Went to John Lewis and treated myself to lunch there. Oh, and a new bra 
Seems I’m one of the 75% of women who have been wearing the wrong size bra. The lady was lovely and spent a lot of time with me, and I’m very happy with what I came out with. 20% off today as well - even better
Good luck to us all.
xx
Hi there - sorry to hear you are having such problems with your sleeve.
If you are up to it - a little footstamping, waterworks, or something similar - might do the trick. I’m no medical expert but it seems to me that if your arm is getting bigger, just giving you another sleeve that doesn’t fit properly isn’t going to help. I would ask for a course of MLD (Manual Lymphatic Drainage) at the clinic - your lymphoedema nurse at least ought to be qualified to do that. You could also ask for CDT (Complex Decongestive Therapy) but this is more time consuming and your nurse may not be qualified to do it. If it’s not available through the clinic you might be able to get funding through your PCT to go to a private lymphodema therapist. It’s all such a drag, isn’t it? The policy seems to be instead of helping patients to keep their lymphoedema under control in the first place, they treat no-one until they get really bad…
(I’ve tried a compression pump in the past and it did nothing for me - and they can make things worse for some people).
Have you joined the Lymphoedema Support Network? They have a helpline - not sure if I’m allowed to post details…?
Chin up.
S
Hi girls
I too would appreciate a dedicated thread for lymphoedema. My situation is that my lower arm is fine, but all my swelling is on upper arm, chest wall, clavical area and on my back (just where the braline starts). My nurse advised originally that an arm sleeve would actualy make my condition worse, as it would cut into the upper arm and restrict the lymph even further. However, she now says as it is getting worse, that I should wear a sleeve when travelling, but nobody seems to be sure what is the right treatment. Waiting to be referred to a specialist lymphoedema centre now, but there is a long waiting list. So have just cancelled a holiday, as I am just too worried that I would end up with more trouble. The support network also was not very helpful, again, they were not sure whether I should wear a sleeve or not. Basically I am getting conflicting advice from all sides. I do self massage (or OH does this for me if he is home - he works away a lot) and this does help a lot, But other then that, I don’t know what to do for the best.
Perhaps some of you out there have the same condition and could shed some light?
Thanks for listening to my ramblings, but it does get you down!
Birgit
Hi Birgit
Yes, it can certainly get you down, can’t it? Why do they always wait before referring us to a lymphoedema clinic? It doesn’t get better on its own!
You could try jumping up and down a bit and seeing if you can get your appointment brought forward. Hopefully they will measure you properly and sort out a sleeve for you. There are also compression garments for the chest area, but you may have to push your clinic to supply you with one.
In the meantime, I am not a medical expert (just a long-time sufferer!), but I know it can’t hurt to ‘be nice to your arm’. Off the top of my head…Don’t sleep on that side, don’t pick up or carry anything heavy, don’t overwork the elbow and shoulder joints, don’t EVER let anyone take blood, take blood pressure or insert an IV in that arm. Don’t wear a bra with narrow straps. Don’t get sunburnt. Avoid saunas, hot tubs and hot baths. When you are sitting, support your arm, especially the elbow with a cushion or something similar. Keep the skin well moisturised. Swimming seems to help a lot of people.
Hope this helps - you’re not alone!