Anyone else get burning legs

[JP1952]

Hi fellow members,

I have previously read that some other people on this site suffer with burning sensation in legs, feet, or hands and I was wondering what others do or take to ease the discomfort. I have always had this in my legs but just lately it has intensified and is constant; it is like having very bad sunburn all the time and is now affecting every part of my legs and feet. It keeps me awake at night despite only having a very lightweight duvet . Cold creams haven’t worked, a very cold flannel helps for a minute or two but obviously this is not very practical.

Any advice would be welcome.

[Hidden]

I have it mainly in feet and after going for a 2nd opinion have been advised to set up an aerterial ultrasound. I’ve used a cream to fortify “heavy legs syndrome” (“Vein-O-Nat), but without much success.

They were not able to say if it was side effect of PV or meds (Jakafi) …

[JP1952 in reply to Hidden]

Thank you for your reply Anouchka. I have read your bio data and note that we have similar stories. Both retired, diagnosed with PV Jak2 mutation, started on hydroxy which didn't suit and switched to Ruxolitnib, 20 mg per day for me too, symptoms heavy tired legs, tingling/ burning legs and fatigue. Please let me know how you get on with the arterial ultrasound, my haematologist didn't make much comment about the burning sensation so I don't hold out any hopes for tests. However, I have recently been discharged from the cardio unit with an all clear having been given a diagnosis of pulmonary hypertension 9 months ago.

[Hidden in reply to JP1952]

Hi JP1952 - sorry to hear about all your ups and downs. I haven’t forgotten to get back to you : my test is now only 2 weeks away, including a neurology one. With respect to the legs I find sometimes putting my feet outside of my duvet at night helps both them and my legs and made me wonder whether it might have to do with overal body heat under the duvet (?). Anybody’s guess m, eh? But u doubt the weight of one’s duvet makes a difference.

A bientôt!

[JP1952 in reply to Hidden]

Thanks for your reply. I agree with you by exposing my legs to the air it does help but it does make sleep a problem because I'm soon cold and need to cover up again. This winter I have never been so cold in my life, 4 layers indoors and my hands and feet always stone cold, however, the burning sensation in my legs is constant -even as I write this in my kitchen 15' degrees and wearing thin cotton pyjama bottoms .For others reading this I appreciate you are going through way more than me, I just wondered if it was an MPN thing or a me peculiarity.

Good luck Anouchka with your tests.

[Hidden in reply to JP1952]

Ditto here about cold hands and feet JP1952 and I agree that others reading things are going thru worse but sometimes it’s what’s relative to their be’s own that become a little heavier to bear than other times.

Keep in truckin’ , as the saying goes! 😊

[Manaaki]

I am sorry you are experiencing this! I had burning feet, the bottom of my feet and it was painful. Taking aspirin and turmeric has settled it for me and I only occasionally get tingling now. I am triple negative ET, platelets hover around 1100. The fact that it is so severe for you Definitly warrants a follow-up with your care team. Wishing you all the best going forward .

[JP1952 in reply to Manaaki]

Thank you Manaaki for your reply. It is my intention to raise this problem again at my next appointment but my haematologist seems happy that the itching hasn't returned, and obviously I am really happy that it hasn't but I would love to find something that reduces this constant sunburnt sensation. At the moment I'm not taking any supplements due to the clinical trial but it is my intention to take tumeric in the future. If it helps I'll post my news for others who may get this problem.

[Phantasia]

Do your legs go red as well?

[JP1952 in reply to Phantasia]

No, nothing visible at all, just like when I had the terrible itch.

[Phantasia in reply to JP1952]

So my next question is are you taking Hydroxyurea? After 7m on HU, I developed a horrendous burning sensation in my feet and lower legs. There wasn't any colour change to my skin. It was particularly bad at night.

It was peripheral neuropathy caused by the medication. My haematologist took me off the medication. It wasn't reducing my platelets anyway.

After stopping HU, the burning feeling dissipated but only after more than a year had elapsed.

Speak to your haematologist and ask if it could be peripheral neuropathy.

Often PN is described as tingling or a "pins and needles" sensation but more extreme cases can present as burning. Your legs look normal and feel cool to the touch but they feel like someone is applying a blow torch.

I hope you can find out what's going on.

Best of luck.

[hunter5582]

There are several potential causes of this symptom, including microvascular issues and issues with the nerves. You need t proper assessment by your care team to sort this out. Suggest that you start with a MPN Specialist who is familiar with this symptom as it relates to MPNs. As Manaaki suggests, if this is a microvascular MPN issue, then there are interventions that can help. I also had success managing erythromelalgia in the feet with aspirin. I also use curcumin to manage other inflammatory issues.

[JP1952 in reply to hunter5582]

Thank you Hunter, very good advice as always.As stated above I shall definitely raise it at my next appointment. I have a feeling I won't be getting any referrals for further investigation and as I have just been discharged from cardio I am very relieved and pleased that my heart is healthy. However, I was discharged by letter so have had no chance to ask any questions such as why the first echo cardiogram revealed leaking valves and an enlarged heart and 6 months later the second one showed a normal, healthy heart, and also why am I still experiencing palpitations.

At the moment I am feeling overwhelmed by appointments, hospitals and tests , am also nervously awaiting the results of a BMB ,so although I shall definitely raise it with my haemotologist I don't feel like I have the strength to push for another referral to a specialist at this present time.

Thank you so much for your help, I will bear in mind all advice.

[hunter5582 in reply to JP1952]

It is quite odd that the cardiologist would release you from care without more of an explanation. If you do not have it already, I would get both reports as well as the actual images and review the findings. You may be able to answer your own question by comparing the reports. If not, you will need the information if you decide to follow up with another medical professional.

[JP1952 in reply to hunter5582]

Would love to do that but it's not so easy in the UK where the National Health is having major problems, and that's not a complaint because it's how things are at the moment. However, I may well send a couple of requests for details, as I said previously I have been overwhelmed lately with medical issues and I haven't always got any fight left in me. As always grateful for your input.

[Hidden]

Hello JP1952 - a will gladly let you know what my results are - I’m due the ultrasound next month…. Wish me luck. ☺️

[JP1952 in reply to Hidden]

Of course.

[Anag]

this could be due to circulation problems. It’s good to try some support stockings or compression stockings. Get something light at first and see if it’s a bit better and if that’s the case you should get to a vein doctor to check out your legs. I had pain in my hands to especially when my thumb both sides were very high and I felt pulsating pain in my fingers because the blood could not get through properly. It’s important to drink lots of water at least 2 L per day. I drink 3 1/2. And also taking the aspirin to thin our blood.

[JP1952 in reply to Anag]

Never thought of that. My hands and feet are cold all the time. Will try support stockings. Thank you.

[Hidden in reply to Anag]

I’m beginning to wonder about support socks too - I see what the veinologist has to say….

[Anag]

most doctors oversee the veins of course the vein specialist is some thing that we should do at some point in life. Most people live a sedentary life, some people have weaker veins because of the constitution, or we just don't do enough movement or are too heavy. There are many reasons for vein insufficiency. Even doctors, nurses, teachers, etc who stand up for hours on d and in surgery are prone and should always wear support stockings while they're at work. by the time I got my support stockings I was on deep vein insufficiency " I was shocked! d contrary to what some doctor say, I do believe that MPN to fix the veins and another terrible culprit for van problems is the Covid vaccine which caused me to go to the next level of being support with my stockings. My lower legs were becoming Brown! d I went to a doctor to get rid of the spike proteins out of my body because I was also losing my mind. It all worked the spike proteins were removed and I did get Covid and I was not any sicker than my husband who had three vaccinations in my daughter who had two. within two months of treatment I was feeling again like a new human being.

😀