The last few weeks the soles of my feet have been very painful Just wondering if anyone else with ET has experienced this. They are not swollen just very painful when i walk.
It has spoiled my holiday in Cyprus as i haven’t been able to do some of the things i planned. We did manage to walk around the UNESCO site in Paphos yesterday but i suffered for it.
3 Likes
I had to change the wording on my post. I wanted to say ba**s of my feet but a message said not allowed! I changed it to soles but the pain is not the whole sole.
2 Likes
That’s sounds horrible. I have trouble with my feet (nothing to do with the lymphoma) and it really does impact what you can do. I’ll be interested to see what others say. Have you mentioned it to your GP?
I’m the meantime, I hope you enjoy the rest of your holiday X
2 Likes
Yes several times. I have tried lots of different treatments. The most successful was a fat transfer from my stomach to my feet. I have had it done 3 times but not been an option since covid. GP can only offer tablets which i dont want to take. Forget the name. They are antidepressents but also used for pain.
3 Likes
Hi Ilivesunshine - I have ET too diagnosed 16 years ago - what you describe is a very typical ET symptom so you will find many fellow MPNers will know what you are talking about! It’s tends to ebb and flow I have found over the years - when bad I always think it’s like my feet are walking on painful marbles ! Lots of massages, good foot creams, foot spa, wooden roller massager etc etc can help the not so good times and I know I had to start getting very comfy shoes too - hope your bad patch eases soon
3 Likes
Thanks for the information. As well as ET i also have scleroderma, an auto immune condition. I am not sure which is causing the problem with my feet. I had assumed it was the scleroderma so it is interesting to hear it is also a symptom of ET
3 Likes
Hello @ilivesunshine. So sorry to hear about your painful feet. I have a different MPN - myelofibrosis - but I have suffered similar pain in my feet. I was referred to a podiatrist a few years ago by my GP and had some inner soles made to fit inside my shoes. This helped but I was also told I had plantar fasciitis which is very painful. I do have mobility problems due to cerebral palsy so my foot pain has several causes. It is also possible to buy inner soles without seeing a podiatrist. I got some initially from a sports shop to go inside trainers. Hope this helps. I wish you well because I know how miserable it can be. Warm wishes. Willow X
4 Likes
Thanks Willow. Sorry to hear about your problem feet. I have been to a podiatrist and had some insoles specially made. Unfortunately they made my feet worse. I have been wearing Sketchers and until recently found them very comfortable. I have just sent for some Joya sandals. Not tried them before so hoping they will help
1 Like
Oh @ilivesunshine it sounds really painful and so sorry that it has spoiled your holiday.
I know how much your look forward to and usually enjoy your holidays.
I await others to see if they can share their experiences.
Look after yourself, I have never been to Cyprus.
2 Likes
Thanks Erica. Cyprus is a lovely island. I have had a relaxing day on my sun lounger today enjoying the sunshine
.
1 Like
Yes it is hard to decipher when different conditions have similar effects - I have an autoimmune condition too and whilst I had suffered foot problems over the years with ET when I got differing problems with my feet it was one of the things that led to the autoimmune condition being found - I do think there is quite an overlap on blood cancers and autoimmune with a basis of our blood, bone marrow and immune systems not working properly (I know that’s an understatement and it’s far more complex isn’t it) so it would be good to check with your consultants as you are seeing quite a change just lately - I know I was like you had bought Sketchers, Hotter, all the comfy brands for my years with bad feet from ET then couldn’t understand why I was getting such pain again - kept thinking these brands are going downhill - took me a while to realise it wasn’t the shoes it was my feet in them that were going downhill 
now I am treated for the autoimmune as well as my ET it has taken the pain levels down a few notches. Do hope you get your situation sorted soon
2 Likes
Hi @Jilly20 and @ilivesunshine I would be like you @Jilly20 and blame the trainers as not being as good as they used to be.
What I would say is a lot of the chocolate bars are getting smaller though.
So many conditions do having similar symptoms don’t they.
Look after yourselves, my reply is no good at all, I know.
1 Like
Hi, I have the same lfoblem as you, it has a name but I can’t remeber it. I have bought some moisturising boots and they help a bit. X
3 Likes
Hi@Jilly2@ilivesunshine@jinx@Erica@Nichola75,im just joining in to say its not the same as your conditions but evidently there are socks for peripheral neuropathy which say they can ease painful feet but I know it may be a different pain
but maybe worth investigating.I have sensory
neuropathy in my feet but no pain thankfully just feels like the groung moves under my feet .@ilivesunshine sorry to hear you’re not getting around as hoped ,lovely pics of you in the glorious 
2 Likes
What a strange coincidence !I have really sore feet now( the soles) and it started after the Total Electron Beam Radiation last week which I had to kill the cells of Mycosis Fungoides (a rare t cell lymphoma) in my skin.The radiation treatments lasted 2 weeks and the last was on Thursday of last week and I was ok however I decided to do a hike back from a village near here,23km, and I was hobbling at the end (and swearing!).I can only assume that the radiation has killed cells,both MF ones and good ones,so the skin has lost it’s buffering and it more sensitive?If it doesn’t improve by Monday I shall have to ring the cancer nurse about it as not much I can do with the wall to wall Bank Holiday’s at the moment.I did have a similar problem about 2 years ago before any radiation treatments and it was so bad that I was afraid that I’d end up in a wheelchair but the spot radiation treatments killed the Mycosis Fungoides cells and I was back in action.
2 Likes
Hi @Kevan7 a 23km walk is some ‘feet’ if I may say so.
A call to your cancer nurse sounds a plan to me, please let us know how you get on.
Take care on yourself
1 Like
When i saw you mentioning chocolate i thought it was going to be a cure for painful feet! I wish
3 Likes