Swelling legs

[Leslie912]

My legs in particular swell terribly when I go on holiday, whether it's a 3 hour flight or 8 hour train journey. It takes about a fortnight for this swelling to go down so ruins my holiday a bit. I already take a diuretic for fluid retention. My GP couldn't help. Would wearing compression socks while travelling help? Although overweight just now it also happened when I wasn't overweight. Thanks

[Chocolate-e-clare]

Hi Leslie, compression socks would help a great deal. See a qualified Lymphoedema therapist for measurement and advice. And question your doc about diuretics.

[Anne16 in reply to Chocolate-e-clare]

In my experience diuretics don't help with swollen legs/feet

[AnneBury]

Have you been diagnosed with lymphoedema? Whether or not you have been diagnosed it would be worth your while talking to the Lymphoedema Support Network. Details, and lots of information are on their website lymphoedema.org.

[nttsue in reply to AnneBury]

Following a fall resulting in a broken leg in Dec.2013, my feet & legs swell too - & I was formally diagnosed by the hospital as having lymphoedema .. I was measured for some support stockings, but couldn't wear them as my feet hurt so very much ... The lymph.Nurse shouted at me, saying lympoedema does 'not' hurt - well, my feet do, very much, and the very act of trying to put those stockings on made me cry with the pain ... Since this visit, I've been ignored by the hospital ... At times I get so depressed ... I have tried amyl - & - Gabe - but neither helped .. ... ... ...

Does anyone else have these problems ? - & if so - What do you do do which helps ? ...

I feel that at 71, I'm being cast aside ...

[Mistymay in reply to nttsue]

What a horrible nurse! I am sore when I swell and have read many times that one of the symptoms of lymphoedema is pain. I hope you find an answer soon, is there anyone else in your area you could see?

[nttsue in reply to Mistymay]

Thank you ... I shall have to look into that ... Good idea ..

[aepyornis in reply to nttsue]

I'm sorry to hear about your trouble. Of course swollen tissues can hurt a lot and sometimes compression can be too hurtful to wear. I have lipoedema on top of lymphoedema and some areas in my legs do not stand compression well, due to the pressure on nerve endings already damaged by the lipoedema.

I think you could try to get compression legging that would not hurt your feet but check that they do not push the fluids down in your feet more. Or maybe lighter compression (class 1) could be tolerable? If it is too much of a hassle getting a compression from these ignorant people at the hospital, maybe some that you can find online could help and some are not too pricey.

Other than that, being active and moving the muscles will help so if you can do even short walks regularly, that will help. Sleeping with elevated legs will too, and if you can swim, or just walk in water sometimes, this is good too.

[nttsue in reply to aepyornis]

Thank you for your response .. Buying a pair privately is certainly an option .. I did suggest to the nurse that I took the stockings home & kept trying with them, thinking that if I could put them on, rather than someone else doing it, I'd perhaps do better .. But she went on about me wasting over 100 pounds of NHS money .. Needless to say, I didn't pursue this .. We've recently bought a bed which elevates at the foot, and I'm currently experimenting on the right height for me .. So far, it's not bad, but it does play havoc with my back if I go too high .. Lying down does help, but I can't spend my days lying down can I .. .. After my break, I did do hydrotherapy, which helped a lot & have heard there is a class at one of our local pools, so will also look into that .. I would love to walk, but I broke my back many years ago & it left me with residual nerve damage, and my ability to walk very far was curtailed .. But, I do what I can & never like to give up .. Thanks Again ...

[aepyornis in reply to nttsue]

Damn, they are not a very helpful lot, are they… Do not worry about the 100£, made to measure compression costs the NHS 700£ while the manufacturer only bills about 200£, everything else is administrative costs. You sure aren't driving the NHS into debt!

The hydrotherapy class sounds great, it is good to have one so close. I do aquabiking and it helps a lot too.

I think it is ok not to do long walks but just walking around the house helps I think.

[nttsue in reply to aepyornis]

When I searched for them online, they didn't cost anything like 100£ .. I don't think we've anything so fancy as aquabiking around here - but it's been difficult finding a pool which has warm water .. The physio said 'ordinary' pools are okay for swimming in, but for doing exercises it's best in warm water .. & Yes, I do walk around the house, although that's limited when my feet are really swollen & painful, but I do try to ignore them .. Thanks for responding ..

[Thomas45 in reply to nttsue]

When I said to my lymphoedema nurse that I must be costing the NHS a lot with my compression knee-lenth socks, she told me that improving my quality of life was more important. I'm also 71.

Today my left leg has been painful, probably due to what I've done today - drove 70 miles, stood for a long time at a Muslim funeral and burial, drove back by a different route about 100 miles, and the first thing I did after having a cup of tea was to remove the compression stocking on that leg. After 2 hours the pain has subsided. (My right leg stocking is still on.) Sorry I've strayed a bit, but at 71 I have wonderful treatment for all my ailments.

[Snaomi in reply to nttsue]

I've been told lymphedema doesn't hurt as well. Funny it is people who don't have this problem. My feet and legs hurt especially by mid afternoon or evening. The swelling presses on nerves so it's bound to hurt. Plus it is so difficult getting the stocking off after swelling. Along with Gaba lotion I use liguid peppermint. Believe it or not it works for me sometimes. Good luck.

[nttsue in reply to Snaomi]

Thanks for your reply ... Yes, funny it's said by people who don't have this problem .. ... Thanks for the tip on liquid peppermint - will try that ... Thanks again ..

[rother]

I have been like this all my life and was only diagnosed in 2010. I try and keep my legs moving all the time just so that the muscles keep pumping the fluid.

Drink plenty of water, I know it's tempting to not do but it's vital.

Walking is the best thing for it and if possible be as cold as you can at night I find this helps keep the swelling down.

Swimming is also fantastic as the stress is on the muscle and not the joints.

I in truth stopped going abroad a number of years ago because of how uncomfortable I get.

Where are you based as reflexology and lymph massage can be a great help.

Good luck but definitely get professionally measured support socks

[CCT67]

Hello Leslie

How many months/years have you had leg swelling after flying or raking a long train journey? I also experienced lots of horrendous swelling during air travel (which took many days to settle down) and it turned out to be symptoms - slow onset - of Primary Lymphoedema. Investigations in my case included specialist scans called Lymphoscintigram and ICG Lymphography. I'm not saying this is what you have but it's a possibility and time is of the essence in diagnosing it. My ex partner would get a lot of swelling from long haul flights and he doesn't have Lymphoedema so don't start getting overly worried before its properly looked into.

However, if you do have Lymphoedema diuretics won't help and they are not recommended as Lymphoedema is not simply water retention - it's far more complex than that and diuretics can have adverse affects.

I don't suggest you rely on your GP to have a solid knowledge of Lymphoedema as its not an area of medicine they receive much instruction about in medical school. I recently had to educate my GP about antibiotic Protocols for cellulitis which those of us with Lymphoedema are high risk to get.

Most Vascular consultants are knowledgable about this disease but better yet is getting a referral to your local Lymphoedema clinic (if you're in the UK). Speak to the Lymphoedema support network as others have advised for sign posting and advice.

Until you are seen I suggest using ordinary compression socks for air/train/car travel. If you do have Lymphoedema you'll be fitted with medical compression garments

Take care

Cat

[Leslie912 in reply to CCT67]

Hi Cat thanks for your reply. I first got the swelling about 20 years ago after a train journey from Inverness to Manchester. This is when I was put on diuretics (still on them). I haven't done much travelling since then as I spent most holidays with my (now deceased) mum. I flew to Switzerland last year (less than 3 hour flight) & the swelling was horrendous. Once I got home I forgot about it till I went to London in June by train. Again the swelling was really bad. I had a phone appointment with a GP who told me she doubted it was much as it only happened when I was on holiday but told me to go into the surgery for blood tests. It was a different GP I saw when I went in &!I found him quite condescending - he asked if I'd taken a photograph! I've to go back on 14th July to see HCA for blood tests.

I'm assuming if I have lymph oedema it will NOT show up on routine blood tests. Can you suggest the best way for me to ask for whatever tests are relevant to the condition please? Thanks

Leslie

[aepyornis in reply to Leslie912]

I'd start with measuring your legs so that you have some data to show a doctor, measuring for instance ankle, knee, largest point of the calves etc. Measure them before and after travelling until they are completely down. I would also suggest to measure them in the morning and in the evening to assess how much swelling you have during the day (if any at all). I was surprised to see the difference throughout the day as I did not feel there much of a difference but there was. I think this would help your GP consider you may indeed have it.

Could you get your GP to give you a referral to a lymph clinic? They would be able to assess that. Vascular consultants can also do this, I think it depends a bit on your practice and what's available in your area.

[CCT67 in reply to Leslie912]

Hi Leslie,

I'm sorry to hear the GP was so condescending and arrogant

You are right that any problem with your Lymphatics wil not show up on your blood tests. I wouldn't take the word of any GP who tells you that as your blood tests are normal that it means your Lymphatics are working normally. Only specialist scans can assess your Lymphatics and I would advise that you ask for a referral to a Vascular Consultant in light of the swelling you get

As already advised by someone else on his site, it would be a good idea to measure circumference of your legs in centemeters (just above your ankle, just above your knee and at the largest pat of thigh) in the morning before you start waking around and again at the end of the day. Take the measurements with you to the GP and Vascular Consiltany if you do measure any difference between morning and night. You may have a sluggish uptake of lymphatic fluid (called Lymph) in your legs which explains your swelling; this is a possibility

You can ask your GP for a referral to the nearest Lymphoedema Clinic however some only take referrals when a diagnosis has been made. You could also ask for a referral to a Vascular Consultant surgeon who would be the one to refer you for a Lymphscintography/gram which measures lymphatic update in a limb and determines a Lymphoedema diagnosis. I was referred by my GP to the Vasc Consultant 2 years ago who then sent me for a Lymphoscintigram.

As for diuretics I'm not a fan of these and suggest that you drink more water which is beneficial to a sluggish Lymphatic system. Like I said in my previous post, diuretics could do more harm than good as they are designed to expel water retention, however Lymphoedema is NOT simple water retention and your body could be adversely impacted by diruetics. In saying that, as your body is accustomed to them I don't suggest coming off of them quickly ie taper down.

If you do find your legs swollen I suggest elevating them - is should help reduce swelling and reduce pain. Walking is also good for the Lyphatics while standing still and sitting still are not.

Take care

Cat

[aepyornis]

Yes they would definitely help keep the swelling down (I am not overweight and have the same issue and compression hosiery helps a lot). Just be careful that they fit properly and don't cut into your skin or they could make things worse. You can order compression tights or leggings also on Amazon or Primark, you don't need to have something specifically designed for flying.

What also helps is moving frequently (walking in the alley from times to times for instance – if you explain this to the flight attendants they will be understanding – and also wriggling your toes and ankle) as the lymph relies on muscle movement to move.

Diuretics will not help lymphoedema but drinking plenty of fluids will help as well.

If you can, after the flight, put your legs up and/or go for a swim (even walking a bit in water will help).

[fiona-mae in reply to aepyornis]

Primark is where i get mine as i find them more comfortable than the medical one olus a reasonable price xx

[Leslie912 in reply to fiona-mae]

Thank you

[Leslie912 in reply to aepyornis]

Thanks for your reply and good suggestions. I'll have a look at compression socks & hopefully find suitable ones. I'm also going to try to get tested properly

[aepyornis in reply to Leslie912]

One last thing that helps: a bath with epsom salts. On holiday, you probably won't be allowed to throw buckets of it in the pool but if you have a tub, then really worth it. You can order some on Amazon.

[Snaomi]

I cannot express strongly enough the importance of the right size compression stockings. To tight can cause addition!lol problems. Also want to say that many doctors do not understand this disease so they talk down to th÷ir patients. I had one doctor tell me it was all in my head initially. Another was just plan rude and said it was my job alone to manage it. And many others who gave me different diagnoses. Just don't give up. Try Self massaging. Look it up on computer. There are many and they are helpful. Good luck.