Painful hands and feet

[Family-man]

Hi Guys, I was recently diagnosed with JAK2+ ET and platelet count 2 months ago was 511. I am 43 years old. Unfortunately living in Penang, Malaysia means that I have little access to an MPN specialist. I have started taking 100 mg of Aspirin a day on the recommendation of my Hematologist. I have lately been troubled with burning and throbbing pain and tingling of my hands and feet. The symptoms are pretty constant and particularly worse at night and occasionally wakes me up from my sleep. I wonder if anyone out there shares the same problem?

[Pippa63]

Hello Family-man and welcome

Yes I suffer the same. I have ET jak2 +

I take aspirin and hydroxy

My hands can appear very red sometimes too I find raising the duvet off my feet with a bed cage helps with my feet . My hands mostly feel cold but still appear quite red sometimes and I haven’t had much relief from the tingling . Maybe someone has other ideas to help

Pippa

[Kiki64]

Hi family -man I suffer with burning hands and feet. Yes you are correct in saying it’s worse at night . I have a JML cool pad you can purchase it from Amazon it really calms things down . I agree with Pippa 63 elevating one’s legs do help . Hope you find some relief.

Best wishes Kiki64

[PrinceA in reply to Kiki64]

Hello Kiki64, this is interesting. I have the burning in my feet and hands for long time now, but It usually happens when I sleep and it not always, never got concerned about it , thought it could be related to some kind of hormonal issues. Do you have any information what would cause it ? is the mutation or elevation in blood counts ? I'm JAK2 positive but dont know yet what kind of MPN I have...

[Kiki64 in reply to PrinceA]

Hi princeA sorry you are suffering with burning feet and hands. I believe it’s known as secondary Erythromelalgia to Mpn’s . It’s very common and very painful I use a cool mat and it does bring relief. Also elevating one’s legs can help. Hope this helps

Best wishes

Kiki64

[PrinceA in reply to Kiki64]

Thanks so much for your response.

[Kiki64 in reply to PrinceA]

You are more than welcome Kiki64

[Tomsgranny]

Hi there. Yes!!!! I have PV JAK2+ and I have very painful feet, especially overnight. My haematologist says it is a symptom of the blood condition and it is called erythromelalgia. There really doesn’t appear to be much you can do about it, although I did have some meds for gout when I was first diagnosed. But I find just knowing what it is and why I have it enables me to cope.

Btw, I’m on hydroxy (2 capsules a day) and I take an anticoagulant as I also have Atrial Fibrillation.

I hope this helps a bit!

[Uzza]

Yes, I had the same. Another sufferer suggested Duloxetine used in adults to treat nerve pain caused by neuropathy amongst other things. I don't suffer pain, just a glove-like sensation, suggesting nerve damage. At least I can walk distances now and sleep.

Regards,

Uri

[Family-man]

Thank you guys for all the prompt and helpful response! I feel so much more reassured knowing that I'm not alone in experiencing these troublesome symptoms. I hope understanding that it is part parcel of ET helps me cope a lot better with condition.

[Wyebird]

Welcome! I don’t suffer with that symptom yet so glad you got help and advice ftt try on others

[HazeBlue]

I had terrible pains in feet for years before being diagnosed with ET. As long as the Hydroxy pills keep the platelets down I don’t get the pains. Heam try’s to keep platelet count down to 400. I do fluctuate and he adjusts the dose. Hope you can get platelets down and then the pains should go.

[hunter5582]

Tomsgranny already addressed this. She is correct in citing erythromelalgia secondary to a MPN as a likely cause.

"Primary and secondary forms of erythromelalgia exist. Secondary erythromelalgia has been linked to a wide variety of diseases, the most common of which are certain myeloproliferative disorders: polycythemia vera and essential thrombocythemia."

jamanetwork.com/journals/ja....

With ET/PV we can be subject to microvascular events. Aspirin is the recommended treatment for both ET/PV and erythromelalgia. Do note that due to the half-life of aspirin if you take it in the morning, most of it will have exited you body by the time you go to bed. If you are taking a single dose, then taking it later in the day may help. Best to talk to your doc about this. Would suggest not taking it at bedtime since aspirin is hard on the GI system.

FYI - Lots of the MPN Centers are doing tele-medicine these days. Suggest getting a consult with one of them from where you are. Here is a list of MPN Expert docs.

mpnforum.com/list-hem./

I think some of the docs at Johns Hopkins MPN Center do tele-medicine consults

hopkinsmedicine.org/hematol...

Do please let us know how you get on.

[Family-man in reply to hunter5582]

Thanks hunter5582. Your evidence based knowledge about ET is very refreshing and helps me to understand my condition better.

[Bokkie1511]

Hi, I have ET CALR+ I'm currently on aspirin, hydroxy and Inteferon.

I've had painful feet for some time which have more recently been worse.

I also have Raynaud's and have recently been prescribed bisoprolol for tachycardia. The bisoprolol has made the Raynaud's worse and I'm not sure if the pains in my feet are worse due to the Raynauds.

My cardiologist is looking to change my heart medication and I'm hoping the pains in my feet will improve as a result. I'll have to wait and see.

[Family-man in reply to Bokkie1511]

Hi Bokkie1511, lets hope things work out for you too! Thanks for sharing

[falconered53]

Hi Family-man.

You have my greatest sympathy. I am PV jak2+. Many symptoms but the WORST was the pain in my feet. They were always numbish and tingling like pins and needles. At night in bed I'd get horrible shooting nerve pain, which kept me awake. At that time I was taking 81 mg aspirin only, platelets were in the 500-600s. Often I had to take 2 Tylenol PM tablets to get to sleep. During the day the blood would pool in my feet and they would get hot and red to purplish.

Those days were an 8 for foot pain. Now I'm down to a 3, same condition but much milder.

Here's what changed for me which probably explains the improvement. I started on hydroxyurea 500 mg/day in November 2019 and very slowly and gradually all my symptoms improved but didn't go away completely. I thought I was out of luck for the feet, but finally, in Sept 2020 I began to notice improvement which continued for months and seems to have leveled off now. Throughout that time I also started taking anti inflammatory supplements like Tumeric/Curcumin and glycine and watching my diet. This combo is working for me.

At 43 you may not want to try the hydroxy. But make sure your doctors LISTEN and acknowledge that this is real. I had several doctors just dismiss it and I had to keep talking about it anyway. They just did not have any knowledge or experience with this particular symptom.

Good luck to you. Keep after trying to see or phone chat with a specialist. If no luck, try writing to one of the really big names and maybe they'll respond.

Ellen

[Family-man in reply to falconered53]

Hi Falconered53. Thank you so much for empathizing with my condition. It really take fellow sufferers to empower each other. As you rightly pointed out, I am not keen to embark on Hydroxyurea because of my relatively young age. However, the better knowledge and understanding of the condition/symptoms will certainly help elevate the level of anxiety. Thanks!!