Does yur lymphedema swell more over night?

[Bluedolffin]

For some reasons, my ARm affected tend to swell overnight. Anybody experienced the same?

[Ginsing]

Hi, I have lymphodema in my legs sometimes they do swell at night then the next night I wear a light compression sock through the night and this helps keep it down considerably

xginsing

[Bluedolffin in reply to Ginsing]

thanks for your answer. will do that more often then.

[Lynora]

Have you tried doing SLD just before going to bed? Abdominal breathing lying down before dropping off? Do you wake up lying on the affected arm?

[Bluedolffin in reply to Lynora]

Thanks for your answer and help. yeah that is right, I sleep on the side. I wil try to sleep more on the back.

[sleevelady]

I sleep with my affected arm raised on one or more pillows, which also feels more comfortable when you get used to it.

[Bluedolffin in reply to sleevelady]

Thanks for your advice, not sure where you put the pillow though.

[sleevelady in reply to Bluedolffin]

If sleeping on my unaffected side I lay my arm on a pile of 3 pillows. If sleeping on my affected side I lay my arm on one pillow then place two more pillows on top of it with my unaffected arm on top. This stops me accidentally laying on my affected arm and is comfortable.

[pushkin]

You seriously need to train yourself to sleep on your back as I had to do. If you make it habitual then all you need to do is to raise your arm on a pile of cushions.

[Bluedolffin in reply to pushkin]

Thanks pushkin for your advice. it is a good idea. Did not know that. Will do my best to train myself to sleep on my back more often from now on.

[Janey247]

It may seem obvious but it could be the position you are sleeping in? Make sure you are not sleeping on the affected side and obstructing flow, it could be you need activity to try and control the oedema and you don't get this at night. Are you sleeping in a garments? is this obstructing anywhere? Most people find their lymphoedema is better in the morning not the other way round. Hope this helps

[Bluedolffin in reply to Janey247]

thanks janey247. I think you are right. It must be because i sleep on the affected arm. Will change that.

[Bluedolffin]

thanks for your answer and this advice, will try to change that . yeah I usually sleep on the side.

[Janey247]

Great. hopeful thats a simple fix then

[Hidden]

My Lymphoedema Specialist Physio @ St George's said to try & keep my arm level, not raised during sleep.

[vickyg45]

It is hard to retrain sleeping pattern and some of us can't. Back isues. Then there's people like myself who have just been diagnosed with whole body lymphedema. Yup, whole body, head to foot...fun times being had by all. I sleep on my sides, turning every two hrs, and yes I do not get much sleep but the pain has me moving all night to find a position to get a few winks in. I always sleep with arms on pillows as well. Good luck to you and by all means if you can do it, sleep on back. Pillows are our best friends.

[Bluedolffin in reply to vickyg45]

Hi vicky, thanks for your feedback, you are right it is hard for me cause I move like u a lot. My sleep is very light sometimes. Don't think negatively. To be honest from all the things and experience I read, we are 70 % congenital cases. Meaning we are genetically build that way. There is no shame to have. It is just the way you are like having blue or brown eyes. To cheer u up I think I am as well congenital case.i have LO a bit everywhere: on my face as well: I know it is hard to believe coz people think they are just wrinkles. On my hips and genitals even if it is very light. My back as well starts to build up if I don't do any exercises for long. I would say just take it as a trace of character. Personally I prefer to have my arm and leg swollen then not to have them at all. Good luck to u cheer up !

[Butterfly-lady in reply to vickyg45]

Dear Vicky. re whole body Lymphoedema, may I ask, how did it start?

My Lymphoedema began with both ankles swelling after being prescribed Quetiapine XL as an aid to sleeping. I reported this to the prescribing consultant, in November 2012, but she incorrectly informed me that it was not a side-effect of that drug, so I carried on taking it, as I have Bipolar Syndrome, which at that time had been stable for ten years on just Carbamazepine. I was however, regularly waking up at 3.00am and staying awake, so, as lack of sleep can exacerbate the Bipolar, I had asked about a sleeping tablet and Quetiapine XL was prescribed.

As the months went on, the swelling slowly (at that time) spread up my legs. I repeatedly, reported this fact to the same consultant, to no avail. I trusted her and did not imagine at that time that she would mislead me. I was also gaining weight and suffering terrible nightmares, also both side-effects of the drug. Thirteen months after I originally reported the problem to the consultant, one of my GPs confirmed it was in fact a side-effect and after the consultant disregarded a GP letter requesting a review, in November 2013, I paid to see a private consultant who confirmed it was a side-effect and immediately stopped the XL (slow release) version of the drug and put me on decreasing dose of the non slow release version of the drug, which I ceased to take in January 2014. More recently I have been seeing a private MLD therapist at my own cost, as Complex Decongestive Therapy(CDT) is not available in Reading unless you have cancer related Lymphoedema.

Sadly the swelling continued to progress up my legs to the groin and in October this year, I finally got a referral to a Lymphoedema specialist nurse who supplied made to measure stockings. That clinic could not a the time offer me any CDT as their waiting list is huge and they are having to prioritise people with Lymphodema in the face, neck and torso.

Now it seems, (my clothes are becoming tighter) that my abdomen is also swelling with Lymphoedema. I have not had this confirmed as yet. Are you getting any treatment?

Sorry for this length post.

regards

Susan

[andyduudz in reply to Butterfly-lady]

hi susan just wanted to say I too are getting the lymphoedema spreading up from the anklles and adomam and hands too, its a night mare I don't like been not able to get up and go out doors, good look to you anyway andrew

[Butterfly-lady in reply to andyduudz]

Hi Andrew

Thanks for getting back to me. Nightmare is the word for it. Are you managing to get any treatment on the NHS? I am assuming you are in the UK, or do you live elsewhere? Are you stuck home indoors most of the time? That makes life really isolated and difficult. Have you sought advice about any state or other benefits, that may be available to you?

It really is a postcode lottery with Lymphoedema diagnosis and treatment. I was horrified to read in the latest Lymphoedema Support Network newsletter, that NHS England, after lots of meetings with interested and advisory bodies, had turned down the recommendations for a Lymphoedema Strategy for England. Wales and Scotland apparently already have one. The cost to the individual is enormous and I don't just mean in financial terms, due to being unable to work and problems with mobilising. The psychological effect because of the pain and other symptoms is dreadful and would be largely avoidable if the correct treatment was available nationwide and also psychological support.

In allowing people to become disabled through not giving correct treatment it also costs the country as a whole, as the sufferer can become unable to work and end up being dependent on benefits, when they could be working and contributing, by paying tax and having more purchasing power. Family members may also be affected by the sufferers worsening condition, having to give up their employment to care for their loved one.

Clinical Commissioning Groups are being incredibly short sighted in not commissioning appropriate treatment.

Sorry for getting on my soapbox, but I am utterly fed up with this.

kind regards

Susan

[andyduudz in reply to Butterfly-lady]

hello butterfly I live in Newcastle upon tyne and last heard something was may from the clinic that have been referred too but in the mean time its just spread to my arms and hands and I was very active keeping it at bay throw cycling swimming etc now its like I all of a sudden like a old man I was a young 47, now its no social life and or relation ships, and when I go to see my docters they look clueless never mind thank you 4 your reply back to online bingo, gl

[Butterfly-lady in reply to andyduudz]

Hi Andrew

I recently spoke to St Oswalds in Newcastle, see - stoswaldsuk.org/who-we-care...

and they told me they treat cancer related and non cancer related Lymphoedema. Are you aware of this organisation? Was that where you were referred to?

[andyduudz in reply to Butterfly-lady]

hi butterfly, thank you for replying to me, yes funny enough I that is where I am on waiting list and its only round the corner, to where I live, thxs

[HelenRC]

HI: I have primary lymphedema everywhere. Both my arms and legs swell. As noted by others, swelling in the legs occur during the day and, if you can, you keep them up at night. I have a lower back problem so keeping the legs up doesn't work for the back. My arms do swell at night. I keep the right arm up because it feels better that way. My problem is the lymph nodes at the front of the elbows swell a lot on both sides. I have the feeling using ointment for very dry skin is causing a problem with the lymph nodes in the arms. Are you using ointment on your arms that might be clogging nodes in the arm?? Hope something helps for you.

[Rebec in reply to HelenRC]

I just wonder whether you shouldn't try different ointment as moisturising the affected limb is important. I'm using only natural products like coconut oil. If one can use it in cooking, then it should be fine to use it on the skin.

[Bluedolffin]

I don't use ointment before going to bed. I think it is due to the fact that I was sleeping on the affected arm. Let's keep in mind that eating healthy food and doing some exercises makes lots of difference!

My hand is really under control since I do 45 min cardio one to twice per week. I will follow all yur good advices lymphies. It is so great to have you guys on this blog! I don't feel lonely anymore with u around!

[Shazp]

I have lymphodema in the arm and do sleep on that side try to have arm up over pillow helps and have been given a lighter garment for night time helps