Life with ET.

[yarrowleaf]

Hi !! I've been in here for a while without realising that it would be best and most well-mannered to have a profile So it goes !!

I've been on Pegasys (45mm every third week) for a good 3 years now. Lots of side effects, but bearable.

Now I have "grown" some horrible pains in my feet. First I thought it was some sort of podagra, but it's not---most of the pain is located under my heels, so walking is pure torture.

I know that many suffer from trouble with bad teeth and nails and even bone pain, but this is different. If I'd been a horse I would have guessed on bone spavin, but as I'm not a horse--- I would be pleased to hear if others have trouble with their feet ??? And- if it's possible to do something about it

Thanks in advance. Yarrowleaf

[yarrowleaf]

Sorry-- maybe a good idea to add that I'm diagnosed ET Jak2

[Lainy1]

Hi yarrowleaf,

Sorry to hear you are in such pain 😔

I'm only on asprin so can't comment on pegsys medication. what does your haematologist say ?

I have pins, needles and burning pain in my toes and fingers and they look purple. It's worse during the night, first thing in the morning and if I walk a lot. In my profession I do 12.5 hr shifts x 3 a week.

I can't comment on what to do with it as I just take painkillers and rest a lot (when able) Nobody can give me a straight answer if it's due to my ET or not.

Best wishes lainy 🤗

[yarrowleaf in reply to Lainy1]

Thanks anyway lainy. I am sure there is a solution. Hope the best for you.Brave of you to go on with such long shifts. I'll keep you in mind if I run into a useful solution/tip for your pain.

Yarrowleaf

[shankei in reply to Lainy1]

Hi Lainy,

I suffer from the same burning pain in my toes/feet and was told it was ET related Erythromelalgia. I find that aspirin helps, but since you're already on that, I would talk to your consultant. At one point my consultant did advise increasing my aspirin dose, as for some reason the aspirin stopped working, but I wouldn't do so without professional advice.

Hope this helps.

Shankei

[piggie50]

Hi yarrowleaf,

I suffer from Plantar Fasciitis in one heel only. Yours sounds like a similar pain. I use gel heel cups and orthotics. I had it about 4 years ago and it went of its own accord. I've now had it for the last 6 months, it started from wearing very flat shoes most of last summer. Guess if it doesn't get better soon I'll need to see the Dr. I don't go unless I absolutely have to! I don't think it is anything to do with my PV.

I hope you get some relief soon.

Judy

[yarrowleaf in reply to piggie50]

Hi piggie50 Yes Lainy1 said that too. I've started to believe that you're right, but I also believe that it is worsened by Pegasys. I'll follow your advice and see what's happening. Mine is also only real bad in one foot.

I have found out that bicycling helps--but that must be the stretching you mentioned.

Thanks for your advice and have a nice weekend. Yarrowleaf

[katiewalsh]

Hi. Sounds like planter fasciatis to me also. I had it for a long time. Learn what stretches to do and do them religiously, never walk without good supportive shoes--even around your house and I've heard gel cups help too. Katie.

[piggie50 in reply to katiewalsh]

Hi Katie,

Can I ask how often you do your stretches? I decided yesterday that I have put up with this long enough and started doing stretches that I found on the Internet. I done them 3/4 times yesterday and do feel it's a little better today.

Thanks

Judy

[katiewalsh in reply to piggie50]

I'm glad you're feeling better. I do 5-6 times a day and also ice my heel 3 times a day. There's a device in the U.S. called 'pro-stretch' which I also use. Also have used a wooden foot roller. Good luck.

[piggie50 in reply to katiewalsh]

Thanks Katie that's really interesting. Maybe I need to increase the times I exercise mine. I also roll a small bottle of frozen water in the evening. I'll look for the pro stretch in the uk.

Many thanks

Judy

[yarrowleaf in reply to piggie50]

yogajournal.com/lifestyle/y...

Maybe this too could help piggie50 ??? Had a talk with my yoga group about it.

Have a nice week - yarrowleaf

[piggie50 in reply to yarrowleaf]

Thank you for this yarrowleaf, I have really started exercising it this week and have googled loads of u tube videos. Everyone seems to say it can take a long times to heal unfortunately.

Enjoy your week

Judy

[yarrowleaf in reply to piggie50]

My doctor said up to 2 years So--patient patients patiently waiting

[yarrowleaf in reply to katiewalsh]

Hi katiewalsh ! I've never worn shoos too much-- only when riding or driving my MC. I spend most of the days on concrete flooring in my studio, so I guess the situation has been caused by myself--"unconsciously".

Thanks for your advice and have a nice weekend. Yarrowleaf