Oedema

[Guest]

Hi, I would be grateful if anyone can advise me regarding oedema of my feet. The MND started in my legs and I now use an electric wheelchair but can mobilise on a Troja, walking aid for short distances. It is a tall walking frame and I have rests for the forearm as I have upper body strength still. My bed is all singing and dancing so I can raise the bottom of the bed quite high.
The problem is my feet swell and I find this horrible feeling keeps me away, my toes feel like sausages. I’ve mentioned it to my GP and the neurologist but there is no helpful ideas from them. I take 10mg Amitriptyline and have increased it to 20mg but that has made no difference to the discomfort.
Any ideas please?
Thanks,
Nigel

[Terry]

Hi nigel,

I have a few ideas,

If your legs are tense then it will make it worse.

The hospitals normally have a nurse that specialises in it and will provide a couple of pairs of suitable sized compression stockings.

If you can get them massaged whilst you're reclined, it can be heaven.

You could also ask the specialist nurse to see if she can get a pair of air pulsating leg massagers and maybe buy some the same if they work.

Of course, if you can find a way to move your ankle so that the foot moves up and down it would help.

Also the wheelchair services sometimes provide leg lifters for there chairs so you can elevate them.

No easy magic formula I am afraid.

Love Terry

[HWRhoades]

Nigel:
I've worn compression socks for about four months now. They reduce the swelling but do not eliminate it. I now buy shoes that are 1/2 size larger and extra wide. The combination of the socks and larger shoes reduces the burning sensation that I feel, especially on the soles of my feet. I remove the socks at night and find the swelling is greatly reduced the next morning plus I'm able to sleep more comfortably. The swelling seems to have stabilized but never goes away entirely.
Hope this helps!

[Guest]

I tried all the above and it didn’t work. Now I can’t walk at all I spend more time in bed, after two days in bed with an active mattress it was gone. Lymphodema is caused in MND because the calf muscle is no longer working as the pump for the lymphatic system. GRAVITY is our enemy. It is a catch 22 because the swelling causes a lack of blood circulation in the feet. = burning pain. A circulation booster like the revitive is worth using and a massager, it all helps with tissue perfusion.

[kd1]

Might be worth mentioning that compression socks can be very difficult to get on and off, even with aids, and can leave swollen feet frozen. I found mine made a small difference but had to give them up.

[Ellie]

A plastic bag on the foot is a useful trick for putting on pesky compression socks !!

Put bag on the foot then the sock slides up the leg and the bag can be removed through the end opening of the sock.

Love Ellie.

[Barry52]

Hi Ellie,

I recall you recently mentioned a sock that M&S sells. Can you please remind me of the name.

Love Barry

[Guest]

Wow thank you all, you really are brilliant with your help. Lovely to her from you Ellie and Terry your help and support is really appreciated. Ages ago you advised me about the Royo cushion which transformed my mobility in the wheelchaire and pressure points on bum healed great. The aid lady apologised for ignoring my request and said she should have issued it much earlier. Courageous of her and I hope others will not have to wait so long.

[Ellie]

Hi Pharaoh Barry,

The M&S ones were the Heatgen Thermal socks. I also have Heat Holders socks which are 4.5 tog and really good for icy feet, but they're bulkier. They are widely available, even Screwfix sell them because builders apparently love them

Love Ellie.

[Barry52]

Thanks Ellie I will buy some next week to try as it is due to turn colder and I will be out on my scooter. I am having trouble putting socks on as my dexterity worsens so I hope they will be easier.

Love Barry

[Kayleigh]

Oh no, not cold weather again .... and hopefully it won't be icy! Enjoy burning some rubber next week Barry! (On the weather forecast this evening, there was a warning that 'Storm Freya' is approaching, but I think that the worst of it will take place tomorrow, and possibly into Monday in some regions).

Kayleigh x

[shrew]

certainly wet and windy here tonight Kayleigh!

[MNDConnect]

Hello Nigel,
I was so sorry to hear that you have developed a build-up of fluid in your feet. This must be extremely uncomfortable for you. I was also terribly sorry to hear that both your GP and neurologist have been unable to help find a solution to this.
I have found the following information on the NHS website, which may be helpful.

https://www.nhs.uk/conditions/oedema/

Although, I am conscious that this information only gives very general guidance and it the main it directs anyone with this problem to their GP.
I do hope this helps Nigel.
Kindest regards
Ruth
MND Connect

[Guest]

Thank you so much, Ihave an appointment with the GP and taking my wife so that we can be politely strong and firm! Thanks!

[Guest]

Terry, thank you for your amazingly good advice as always. I spoke with the MND nurse who said that the ones she is aware of are Flowtron but hospital use only. They are described for use to avoid dvt but I have seen other makes on Amazon where people have used them for oedema to good effect it seems. From your knowledge do you think the amazon ones are ok? Sorry to put you on the spot but just received a voucher for Amazon as a gift and may as well get on with trying to sort it myself than wait for the system to try and obtain something.