Skiers with Lymphoedema of legs - how have you coped?

A snowHead

Slight swelling started this autumn, spread from the forefoot at first, but now, 4 months later, it’s pretty bad.
It now affects both feet, shins, calves, and both knees.
The swelling is now ‘pitting’, and I’ve reduced knee flexibility too.
Perhaps it hasn’t finished spreading yet.

There’ve been 3 GP appointments so far.
Tests have show nothing of clinical concern in 45 indicators.
Lastly, GP came to no conclusion for the third time, except on some other things it wasn’t (lymphoedema suggested by me, but GP ruled neither out nor in) and referred me to a specialist.
But that was 3 weeks ago, and I have yet to get the opportunity to even try for an appointment date!
So I went skiing.

I’ve already bought compression socks, and have skied with them on Day 1 of this, the first trip of the season (3 days ago).
I’m just managing the ski boots on/off bit.
The buckles allow enough slack to get over the difference in size.
The feet/lower legs seem OK in ski boots, as regards lack of pain in that area.

===

Day 1.
I managed only 1 hour on skis, because I had unexpectedly massive tiredness in the legs.
Back in my room, with the compression socks, my knees had swelled up like melons.
Too much compression? I then ordered compression tights online, but they don’t arrive here in resort until next week.
The boots seem to provide a fair bit of compression just on their own.

Day 2.
I ditched the compression socks, and went Smartwool.
Not bad.
Managed 3 hours on skis, with the strategy ‘ski ‘til the thighs say no, stop, recuperate, set off again’.
400 metres between stops was Ok on average blues, but in bumps and on steep bits, it dropped to 100 metres-ish.
Knees not so swollen.
Realised I had not been hydrating properly.

Day 3.
Managed 3.5 hours; water; same strategy, Smartwool; felt a bit better.

Day 4.
Yowzah. 4 hours of feeling pretty good and well pleased.
Strategy:::
The boot buckle strategy today was:
- looser for the forefoot;
- clips for retention of heel in pocket set firm;
- top buckle a bit looser than normal.
Also:
- bindings moved to a position that puts less stress on the upper leg muscles, by trial and error outside the boot room;
- lots of carbs for breakfast;
- overhydrating before skiing, i.e. more and more water until the last swallow is a bit uncomfortable;
- plenty hydrating between runs;
- 300mg of aspirin;
- more chairs, less bubbles;
- as a style, changing to deliberately making more movements of the hips and buttocks and less flexing of the knees.
(PS I’m trying to find something that works for my problem, rather than ‘performance’ or ‘skiing dynamically’ in the usual approved stance. Not interested in analysis or criticism of my technique, unless you’ve got or had this problem yourself, and found that this or something similar worked for you too.)
Result!
Remarkably less swelling of feet, legs and knees!
I think maybe this strategy helps, and hope for better on Day5.
The compression tights are due to arrive tomorrow, so in 2 days time I’ll give them a try.
There seems to be a happy midzone, where there’s neither too much compression nor too little, so circulation is not impaired as it was on Day1, yet the compression is enough to aid the movement of lymph up the legs.
After skiing, went to medical centre looking for professional advice, but long queues, so came back having ditched the idea in favour of dinner. May try again Saturday.
===

So:

Admittedly Lymphoedema is a self diagnosis, and am no medic, but it does look flippin’ obvious, if you see where I am coming from.
I want to get on with some kind of coping strategy to alleviate the issues I face as a skier, whatever.
I am not prepared to do nothing and just wait until it is all too late, or give up.
I’m 70, and I want to go on skiing as much as possible, for as long as possible, and in whatever manner may best be possible given my circumstances. I will change my expectations as necessary.

So the helpful information I’m looking for would be about how to continue to ski.
Please don’t advise me to give up skiing.
I have considered the possibility it’s on the cards; perhaps inevitable but no-one has said so.

Also please don’t bother to say “See a doctor” or “Get medical advice”.
If, on the other hand, there’s an expert you are aware of, who knows the medical side and also knows the skier end of it, and would point me to, I’d be grateful for that.

I’m also looking for practical ideas and strategies for coping to try out in the Alps.

What can snowHeads suggest?

(Edit:
PS: I am already doing elevation as and when possible to drain the lymph. Lying on your back in the boot room with your feet on a bench for 15 minutes does look a bit silly and you get comments, but it makes the boots easier to get on. Little Angel

)
(Edit2:
I am not fat, despite the username.
I don’t have heart problems.
I have other conditions not mentioned and lots of other stuff, but this is not ‘guess the ‘underlying disease’ ‘, if there actually is one, or ‘guess what drugs or other previous conditions are messing his legs up’.
I’m not interested in that, and I have given all of the medication info to the GPs, as well as it all being quite clear on my medical records if they can be bothered to read it.
There is a notice in GP reception saying ‘one complaint per appointment’.
I actually went because I had more than one thing.
I think they are related and this is b*ll*cks.
GP is treating conditions separately.
Nothing I can do about that.
I have no diagnosis for the other condition either.
I think that is erythromelalgia (hands).
It ticks all the boxes.
It happened a short period before the foot problem started.
No, they have not ‘joined up the dots’.
As you can imagine, that is a self-diagnosis as well.
I did ask if I could fly and go skiing and GP would not say ‘no’. It was ‘I see no reason why not’.
I have considered getting private healthcare, but that would only be as an attempt to speed things up.
In fact, the referral the GP last made has taken me to the gentle mercies of a private hospital nearby anyway, but if anything, it seems to have slowed things down rather than speeded them up.
This is about keeping me skiing, not about getting treatment for the disease, nor about what might have provoked the problem.)
(Edit3: updated re progress.)

A snowHead

Where are you skiing now?

Well, the person's real but it's just a made up name, see?

France. But why?

I’ve considered trying French healthcare whilst here. The pharmacist here has been helpful with skin treatments. I had no such help or advice from 3 GP visits.

I already have an appointment with a physio when I get back to UK with the objective of seeing what can be done to maintain or improve joint mobility in view of the knees and feet situation.

You need to Login to know who's really who.

@Fat George, I know you wrote that you didn't want to be told to go to a doctor but ...

The French doctors that I have seen in ski resorts were sports medicine specialists as well as GPs and were working with the local athletes as well as fixing up punters who had fallen over.

Anyway, snowHeads is much more fun if you do.

You know what I meant.
I have been seen by three doctors!

Agreed and I’d considered your very good thought whilst still in UK. My visits to the medical centres in resort in France have impressed me too. On the cards for an ad hoc visit tomorrow after playtime. They shut 7pm which is good.

You'll need to Register first of course.

@Fat George, good luck & keep us posted.

Then you can post your own questions or snow reports...

After all it is free

@pam w, and a lot of conditions that are nor recognised anywhere else, " heavy legs", " tired liver" (well, that's just a 3 day hangover but still) ... with specific remedies. " oh, yes, I have just the things for that"

Beware also, they do like their suppositories Shocked

If you're going to pay through the nose you might as well take it through the arse.

*Ski* the Net with snowHeads

@pam w, I had to use a suppository laxative a few weeks ago pre-operation. Seemed like it was the wrong way to go about it.

snowHeads are a friendly bunch.

@Fat George, are you on any prescription medicines for any other condition? Do you have any existing heart problems?

snow reports

@Hells Bells, one would hope that the (so far) 3 GPS would also have asked those questions - but, still ... Shocked

@under a new name, you may be surprised. wink

You know it makes sense.

Not sure if you should be self-diagnosing as it could be caused by an underlying condition or existing known condition.

Otherwise you'll just go on seeing the one name:

A snowHead

I think the standard GP appointment is 10 minutes - but that's still inadequate and doctors have been pressing for this to be increased. The OP clearly has oedema, but says himself he has "self diagnosed" it as lymphoedema. Not all oedema is lymphoedema. It can be caused by a variety of things, including heart failure (I have heart failure and am always checked for oedema) and overweight. I take diuretics to help prevent excess fluid build up.

It sounds very unpleasant, @Fat George. Getting as much exercise as possible sounds like a good idea - provided the doctor has not suggested otherwise - and I hope you can enjoy your skiing. And that you get your specialist appointment before too long.

A snowHead

@Gored, you know what "assume" does ... ? Anyway, you guess wrong. And teh OP has seen 3 GPs so not really just self-diagnosiing (well, not totally).

@Hells Bells, sadly I would not be surprised Sad

Well, the person's real but it's just a made up name, see?

OK folks, thanks for the replies.

I’ve edited my OP which I hope helps fill in some blanks, @pam w, @Hells Bells, @Gored.

The things about the French pharmacists: the GPs did not give any advice about skin. I read on the NHS website says in cases of lypmhoedema, extra careful skin care is important. The skin is at more risk of drying, stiffening, cracking, scaling, risk of not healing if there is a wound, getting infected and causing serious complications, putting you at risk of things like athlete’s foot. So I’m doing it as a precaution which cannot be putting me at any serious risk of worsening anything, and I don’t care if ‘shouldn’t be diagnosing myself’. I am not unaware of the risk of that. But not a dickybird from GP about skin . . . . So self diagnosis and self treatment. Skin was getting dry noticeably here in France, so treating myself a good idea. The stuff they gave me, there were only two things not three, we had a proper conversation, there was no cowdoo, I read the packages, and they were just what I wanted.

By coincidence I found out yesterday that another snowHead in the hotel does actually have lymphoedema (diagnosed, had it some time) so we had a nice chat about it. He has experienced and does experience exactly what I am experiencing when I ski at the moment.

That was what provoked this thread.

You need to Login to know who's really who.

@pam w, despite his name, Fat George is definitely not overweight!

Anyway, snowHeads is much more fun if you do.

You'll need to Register first of course.

Then you can post your own questions or snow reports...

@Fat George, Anecdotal from me, researched in the same way as anyone can do with topic such as this.

Topical treatment of skin condition I use Castor oil supplied from route that sells into treatment products as it's quite numerous in many preparation sold. No particular problem for me to treat, but often barefoot with attendant wear/hard skin/ minor damage etc it seems to work really well, claims of mild antiseptic quality too, seems benign but nevertheless successful. Viscous and easliy rubbed in, don't put it on before a shower though as you'll never get traction to get out again Very Happy

appears to survive quite well in any damp foot scenario inside socks etc. Usually keeps good skin hydrated too.

Consider raising vitamin C level if not considered or any notable problems. No not with supplements, I try to eat one Grapefruit or two Orange or two Kiwi fruit daily, yes it's perception but feel it honestly improves skin healing etc.

Sounds like you've made a little progress in socks etc to extend the skiing time, hopefully it will continue to allow enjoyment as it's such a superb environment to be outside in.

After all it is free

@Gored, before you write off the medical profession any more completely, bear in mind that we only have one side of this story. We don't know what the GP, or GPs, have done, or what constraints they were working with.

*Ski* the Net with snowHeads

Rubbish generalisations. My brother in law's GP pulled strings a week ago to get him an MRI - called them in 0830 Friday morning to tell them the bad news he has a brain tumour - he was in hospital before the end of the day. "Superb" was my sister's verdict. And the Royal College of Physicians would not agree that they are providing "the best care in the world" to the dying. https://www.rcplondon.ac.uk/projects/end-life-care-audit-dying-hospital

snowHeads are a friendly bunch.

@Fat George, I was not attempting to diagnose or guess any underlying disease, but to establish if you were taking any prescription medication that might cause lower limb swelling.

snow reports

@pam w,

You know it makes sense.

Otherwise you'll just go on seeing the one name:

@ski3. Many thanks, and all relevant.

Otherwise, some classic snowHeads thread drift?

I had hoped that the title in a few words would get across the implied question of whether anyone who has direct and indirect experience of skiing with Lymphoedema could help here, in a sort of inpromptu skiing-with-lymphoedema-sufferers mini forum?

That’s why this is on snowHeads and not some other place where the NHS, lymphoedema diagnosis and treatment, if any, since it’s basically incurable, could be discussed until the cows come home with not a flicker of relevance to the problem I am posing here: how does one carry on skiing with lymphoedema?

It’s about skiing, isn’t it? [whether I’ve got it or not]

So have you carried on skiing successfully or unsuccessfully knowing that you have the condition yourself, or with a similar condition, or know someone else who has done so, or have dealt with this sporting problem successfully in this or a similar context on a professional or non-professional basis?

A snowHead

@Fat George, ask at reception for some extra pillows to elevate your legs at night, I doubt they have any wood to elevate the end of the bed Eh oh!

A snowHead

OP updated: Day4 progress! There is hope.

Well, the person's real but it's just a made up name, see?

If it is lymphoedema (with no cure in case of cancer patients who have had lymph nodes removed) then full leg TED’s/compression socks are an everyday, lifelong necessity as the condition usually progresses. If there is no cure for yours, if it is the condition, then the same will apply to you. Lymphoedema can leave one with legs so grossly swollen that one cannot ambulate, never mind ski.

You need to Login to know who's really who.

I'm early 40s and have had lymphoedema in one leg for about 5 years (probably longer, but it was diagnosed then after a bout of cellulitis which increased the swelling significantly). I haven't skied much since then, but I'm looking to get back into it now - I'm medically cleared for it, but I would recommend not skiing on it until you have it diagnosed and managed. If you don't know what precipitated it, I would be concerned that there may be something else going on that needs to be dealt with - especially since it has started in both legs at the same time, as I think it more commonly occurs in a single limb. I would also be concerned that you might accidentally cause additional damage.

Lymphoedema clinic provision varies a lot by area - the LSN (https://www.lymphoedema.org/) is a good resource and can tell you about the provisions in your area and they also have a pretty good book available on the condition (as well as lots of online articles). If you're interested in going private and are in London or Oxford I may be able to suggest some consultants - I had some private testing paid for by health insurance, and I found it interesting, but it was expensive (for my insurer...) and didn't ultimately change the treatment recommendations (which is primarily compression garments). You could also consider looking for an MLD therapist (https://www.mlduk.org.uk/ - site is currently down) - this is a special kind of massage for lymphoedema, it's not usually provided on the NHS. Most people also find swimming good for lymphoedema.

If you do ski on it, the number one thing I would recommend is good skin care, as mentioned elsewhere in this thread. Moisturise daily and don't keep skiing if you feel your boots rubbing. Inspect your legs each day for any damage, even minor, apply antiseptic cream, and especially watch out for any areas of skin which are red and hot, and also generally feeling ill or a bit weird. These can be signs of cellulitis, which people with lymphoedema are more susceptible to, and you should seek medical advice immediately if you think you might have it - it needs to be treated with antibiotics and can turn septic and for some people it progresses very quickly. It can also cause permanent increased swelling as in my case, or open ulcers that take a long time to heal. I am fairly sure that my cellulitis was from a ski boot - I had minor grazing on my shin after ski touring. When you are able to see a specialist I suggest talking to them about whether they will prescribe (or ask your GP to do so) an emergency pack of antibiotics so you are able to start them immediately if cellulitis starts when you are away.

The issue I'm currently having (and why I joined this forum!) is finding boots that fit my larger calf, but it sounds like you're ok on that front. Good luck!

Anyway, snowHeads is much more fun if you do.

@carrie33:

Many thanks for this-^ and for your advice.

I do understand your comment about not skiing until diagnosed etc., which in normal times would be what I would be doing.

But times are not so normal. Recently, an NHS medic (I'm NHS and have no medical insurance) - told me very informally, that although I was referred in November 2022, I'm 'non-urgent' so I'm unlikely even to get an appointment to see a specialist until at least May 2023, let alone a diagnosis.

Will PM you about specialists etc.

Thanks again; FG

You'll need to Register first of course.

@carrie33, welcome to snowHead

Then you can post your own questions or snow reports...

Thanks @gordyjh ! @Fat George totally understood that these are challenging times for the NHS and you need to make some judgements for yourself before you're able to see a specialist. I hope your winter goes well and the wait ends up shorter than you fear it might.

Happy New Year all!

Help!!

Skiers with Lymphoedema of legs - how have you coped?

snowHeads Forum Index >>> Ski Fitness, Exercise, Injury and Rehab