I saw the lymphodema nurse last week. she says that she isn’t diagnosising me with lymphodema as there are no obvious signs. The tenderness above my wrist I’ve experienced when gardening she thinks is more likely to be chemo damage to the vein.
However, when she measured there was some difference in arms sizes up to 1.5 cm in one place. I have had a full axillary clearance.
She has advised wearing a compression sleeve as much as possible and especially when I’m doing things like housework and gardening. She gave me a sleeve and I didn’t realise yesterday that it had rolled down at the top causing almost a tourniquet around the top of my arm (I’m quite numb in that area). I had a deep red line there, my veins were all prominent and I got very worried.
I can’t help thinking that if I haven’t got lymphodema, that I’m more likely to get it with incidents like that with a sleeve!
She’s sending one with more of an elasticated top but I’m wondering how much should that dig in. It seemed very tight when I tried one on in her office. I am very anxious about all this.
hello elinda45 the first sleeve i had did the same the measurement wasnt right the second was to short, now i have a repeat percription for every 3 months my persciption has a measurement code and i check it is the same on box, sometimes chemist gives wrong one hope you get comfort soon
Hi Elinda, yup the sleeves can be a bit of a nightmare ! The first one I had apart from the hideous american tan colour , I just didn’t get on with at all,it had to hook under my bra strap and velcro back over on itself,kept digging in, pulling down bra strap and was just awful. However, I now have a “sigvaris” make, much akin to a hold up stocking and slightly better colour too. I was wearing one that was 14-18mmHg,for mild lymphoedema but have now got a 20-25mmHg for moderate lymphoedema,there is usually little tag inside your sleeve telling you this. Am afraid that it is the nature of a compression garment to be tight fitting but it shouldn’t be so tight as to cause you discomfort and you do have to make sure that you have got it on correctly to try and avoid roll down,it was a case of practice for me,still sometimes have to get a hand yanking it up at the top !,off for an appointment now for some MLD,let me know how you get on,us lymphomaniacs got to stick together,we seem to have the short end of the stick in all this.
Hi Elinder
What a pain-and I agree with Sandra, the compression garments can be a nightmare, especially early on. I found it took a while to get used to them, but it has got much better with time, so there is hope!
Not sure what make you have, or if it needs to work with a gauntlet, but I’d say the same as the other ladies, that it can take a few tries to get the one that works best for you and the correct measurements. My first one had a rubberised strip (a bit like a hold up stocking) that had a similar effect to what you are talking about-it just didn’t work for me. These days I have a ‘jobst’ one with a stretchy, soft top and a seperate glove. It does need a bit of a pull up at times (I’m checking it now!), but if the fit is right it shouldn’t slip all the time. They do lose their ‘grab’ as well with daily wear-I’m due a replacement soon.
All the best, hope you get it sorted
C x
Thanks for the advice. Perhaps I should be checking it more often as I have the numbness there. Good to know that things eventually work out even if it is trial and error at first. I had the soft top one and that’s what rolled down although the nurse said it was a good fit.
I think I’m getting one like you Sandra next to try. Do you get any red indentation when wearing it?
Hi Elinda, my sleeve def a bit snug but dont get any redness or indentation with it,it does take a bit of getting used to at first,but am embracing it at the mo as helps keep my arm warm now it is so chilly ! Hope you get on better with your new sleeve.
Do you go to Chapel St in Chichester? My first sleeve was much too tight at the top, so it was changed to a different size, my new one has a rubber top like a hold up stocking. It is much better but does leave a red mark and some indentations when I remove it a the end of the day. I think it is a bit of try it and see as 9 months on the sleeve size is not completely resolved.
Yes, I did go to Chapel Street. What do you think the issue is, are we getting cheaper versions or something? I haven’t got the new one so I’ll see when it comes how I get on. Did the nurse think it’s okay to have red indentations? Elinda x
I was told that a made to measure sleeve would be best but as I am dieting and losing weight they would give me astandard sleeve for now as the made to measure ones are expensive! Though the nurse did say the made to measure ones are of thicker material and not so nice to wear.
The nurse said the indentations were ok. I also see a Manual Lymph Drainage therapist in Midhurst and she is great. She says it’s better for me to wear the sleeve than not.
My cousin is a massage therapist and she was very insistent that I should that I should have MLD either to prevent lymphodema or in my case treat it. I have to pay as my lymphodema is not bad enough to get MLD on the national health!
Hope you don’t mind me joining in. I’ve been reading this thread with interested because have just been referred to a lymphoedema clinic and will have my first appt tomorrow.
I wasn’t aware the sleeve can cause any prob, but was told that if I don’t need it, it’s best not to use it because “we can get into a habit of relying on it too much” by my radiologist. Anyway, will see the experts tomorrow and see what they say.
Thanks for the info about the 2 kinds of sleeves, Jacie, will have to inquire about them tomorrow. It’s a disgrace I think that NHS is not paying just because it’s not as bad.
I can’t understand how indentations can be okay, surely that’s what we’re trying to avoid? Be interested to hear what other lymphodema clinics say about that - anyone had different advice?
Jackie - I’m going to send you a PM, I’d be very grateful for the name and contact details of the MLD therapist in Midhurst.
M1Yu - hope it goes well today and be interested to hear what they say. Haven’t heard that about relying on it and what that means but it was from a radiologist rather than a lymphodema specialist. It’s the exact opposite of what I’ve been told. Never straightforward any of this!
Back from the appt yesterday and really learnt a lot. There’re lots of different brand and types of sleeves and gloves. I tried 3 different ones and picked a sleeve and a glove (they’re separate for me) that suits me. Going back next wed to make sure there’s no indentation, slipping prob etc…
Told to keep it on most of the time. Also asked about MLD, that’s quite complicated, too. They won’t do it if arm is the only area that’s affected. Also, they won’t do it while I’m still having treatment.
Glad your appointment went well. The nurse didn’t have many sleeves in stock for me to try when I went, I have an unusual arm size apparently. Small wrist size and large upper arms, I am overweight and all my swelling is above the elbow so all the manufactured sleeves are not really a very good fit for me! I always seem to be the awkward one!!!
Having said all that when I went back after the first 3 months my arm size had reduced so the sleeve must be doing something, or it may be the exercises, self lymph drainage and my mld therapist( that I pay for). Who knows which part of the treatment has the best effect! Did they give you a information with exercises to do?
They’re going to order a DVD for me with info on self massage and exercises. They haven’t got that in stock!
I’m a bit awkward, too. Got quite tiny hands, but long arm. The nurse thought she read the reading wrong, so measured it twice to make sure!! They said depends on much my arm shrink in size, if not too much, won’t need to change to a smaller size sleeve. They also said that when the effect of my rads wears off, my arm might shrink, too. So, hope that’s the case.
Hi All
Just catching up and thought I’d add that I was taught self MLD by the lymphoedema nurse, which was a huge help. I did it every day initially, which took some time and was a pain, and sometimes left me wondering if it was a real form of aiding drainage or just something to keep me quiet! But, my arm and hand swelling has gone right down over the past year. I now only do it if it feels heavy, or I know I’ve given it a heavy day. My lymphoedema is mild anyway, and I know if the lymphoedema is more severe having it done by a professional is recommended, but though it might be useful to mention.
All the best to all
C
I was also taught self MLD and given exercises to do. I also have exercises from Lebed Healthy Steps, a form of exercise developed for cancer patients and other chronic illness patients which I found very helpful, as I have arthritis in my knee and spine and exercises for tost too, I have to get up an hour earlier!!! I started off being really good and doing them everyday but must admit I have slipped a bit!
I hope everything is going well for you all
The DVD was received yesterday and watched it last night.
It stated that it’s on load and need to be returned asap :-(. So made lots of notes. Checked the lymphoedema website, it can be ordered and bought for £12.
Quite like the idea some exercises can be done at the computer (it seems I spend half of my life in front of them!) and can be integrated into part of our daily life. Was instructed however, can’t start the massage until at least 2 weeks after Rads. So, for me that’s in 10 days time. OK, will be lazy for 10 days then and get on with the massage
I have just been diagnosed (Friday) with mild lymphoedema and was given a compression sleeve and glove to wear. My question is, if the swelling goes down, can you then stop wearing them, or do you have to wear them forever? I’m 37 and single and the idea of wearing these ‘lovely’ looking things for ever really isn’t very appealing! Also, it’s a bit of pain trying to do things and keep the glove clean and dry - I was wearing a rubber glove over it today to peal the spuds and veg for dinner! My children think I look very weird, bless em! I’m grateful it’s winter, so I can hide it for the time being!
Hi Samm, its a bit of trial and error I think with lymphoedema,what works for one patient might not suit another.Got diagnosed a year ago.Sometimes it has been absolutely fine and other times it hasn’t.
After getting my lymphoedema under control with wearing sleeve and self massage every day and monthly MLD,I then started only wearing sleeve when doing stuff that I knew might affect it,cleaning,gardening,shopping,working(I have a market stall) Had a very busy Summer and all was well, but couple of weeks ago for no apparent reason I started to swell again !Back to daily wearing of the not so lovely sleeve and had some MLD,can’t believe that we don’t all get it on the NHS ! Anyhow, it has gone back to behaving thank goodness,I don’t just have it in arm but boob and side and can really feel it when it “goes”. Just have to be carefull I guess and manage it as best we can. Good luck .
Hi Samm
Yes they are not great when doing household stuff, as well as looking SO attractive! I find my glove gets very grubby quickly just doing everyday tasks. I developed lymphoedema just over a year ago, and I have worn the garments everyday-give or take the odd party/day on the beach, and was told at my last appt 6 months ago that they may recommend only wearing it part of the time (in work, carrying things etc) I’m seeing them at the end of this month, so will let you know.
C
