Bield

[Bield]

I’m just so exhausted all the time and the burning pain in my feet is excruciating. I’m ET Jak2 positive anyone else feel this

[Mallard]

Low dose daily aspirin sorted out my burning pain in my toes. I use to complain about my sore toes for ages before I was diagnosed with ET Jak2 positive.

[ksos]

Hi: I don't have the pain, but certainly do have the exhaustion. My sympathy to you on both. The only thing that has helped with the fatigue for me is to rest and not push, and when it's really bad -- which is been for awhile now -- I have days where I do absolutely nothing but rest. I know that others have things that work for them -- searching fatigue could give you more options. Wish I could offer more concrete help, but do want you to know you're not alone in this. Best,

Kim

[Applesnpears]

The link below has some useful information about erythromelalgia - the redness and pain that can affect feet, hands and face. Some of the suggestions might help you.

erythromelalgia.org/resourc...

[Bield in reply to Applesnpears]

Thank you

[JackLina]

Yes but the burning pain in my feet is only noticeable at night and not excruciating. I always seem to have it however!

[Bield in reply to JackLina]

I’ve had it for over 20 years but never spoken to a doctor about it. Always assumed they would tell me it’s fashion shoes

[JackLina in reply to Bield]

Well, there you go! ~You learn something every day!!!!!

[Bield in reply to JackLina]

👍🏿

[hunter5582]

Suggest you learn more about the role of inflammation in MPNs and how it may play a role in what you are experiencing. There is considerable emerging research regarding the consequences of the JAK2 mutation and the overproduction of inflammatory cytokines.

Here is a nice primer by one of the leading researchers.

youtube.com/watch?v=FzyoPAG...(Not working as expected?)

A bit of research from the professional literature. Lot's of secondary reading if you are not a medially trained professional, but helpful to start understanding.

ncbi.nlm.nih.gov/pmc/articl...

sciencedirect.com/science/a...

Unfortunately you have a lot of company in experiencing this sort of thing along with other the MPN symptoms you are experiencing. The pain I experience is different in that it is related to osteoarthritis and plantars fasciitis. Whether what you are experiencing is something like erythromelalgia, neuropathy or something totally different only time and further assessment will tell. I would lay money of the fact that you will find that inflammation is playing an important role in what you are experiencing.

The good news is that there is likely relief once you figure out what is going on. What has worked for me is to focus on the process of inflammation and reducing it. My interventions include: losing 50 pounds, more exercise, healthier anti-inflammatory diet, taking a Turmeric-Curcumin blend. The curcumin worked better than any NSAID I ever took for the arthritis. I have recently added some other anti-inflammatory agents and will see if that helps as well.

There is good advice from Voices of MPN and other sources re. the fatigue. What has worked for me is to limit caffeine, exercise (seems counterintuitive but it works), ensure a good night's sleep, push through it when mild-moderate fatigue, rest when I really need to. I also practice Qigong, which I believe helps as well.

Hope that helps. All the best to you.

[Bield in reply to hunter5582]

Thank you very much for this. It’s very helpful

[MacDWild]

Hi. Yes. I too experience this. I have no advice but wanted you to know you aren't alone with it. Hang in there.

[Bield in reply to MacDWild]

Thank you, it’s miserable to live with. I dread putting shoes on and I don’t buy cheap shoes but it doesn’t make any difference

[JenngeetingR828]

I have this too. My pain is mostly in my feet but over the last year it has expanded to cover my lower legs. I have found that what helps is to elevate them at night and to use a heating pad. In fact, the heating pad has helped so much that my husband recently bought me a larger heating pad that has a timer I can set at night. Without it, it would be miserable.

[Bield in reply to JenngeetingR828]

Thank you, I might try that. My daughter bought me an electric blanket and it does help but too warm for the rest of my body

[wormwood]

Hi,

I have e.t jak 2... I too suffer with burning feet.... I found cold helped enormously, I fill a water bottle with cold water and put my feet on that.... its mobile so i can move it to where I need it... I've been on hydroxy, but it stopped working for me, platelets started to elevate and higher dose gave me unwanted side effects.im on interferon now 12 mu per week, injection 4 x a week.... but I recently changed to pegasys, 1 x per week....and its working beautifully.... the burning isnt so bad....

Take care were all here for you xx

[Bield in reply to wormwood]

Thank you I’ll keep this in mind. Hope you stay well

[wormwood in reply to Bield]

You too

[ajdolly]

Hi. The excruciating burning pain in my feet was what made me go to the doctors. It took 3 years to discover what was causing it! Unfortunately I’ve got no relief from it or the tight calves I get when walking. I’m resigned to the fact that it was like that for so long before beginning treatment for my high platelet count that I’m stuck with it! I’ve tried clopidogrel, duloxetine and gabapentin and none have made the slightest difference.

[Bield in reply to ajdolly]

I think I ve had this for years before diagnosis too.

[Bield in reply to ajdolly]

Maybe the heat pad would help you with this. Hope you find some relief

[Anag]

Hi Bield,

Many don’t think of this, but I had pain in my feet and legs and they would get swollen and a bit red. I was finally diagnosed with deep vein insufficiency. Something to maybe check out. I received support socks and I feel alive again. Pain and burning in feet and legs is gone.

Worth looking into?

[Bield in reply to Anag]

This is worth looking into thank you

[Bield]

Thank you I will

[JackLina]

Yes. I have managed to make myself walk every day. If I do that first thing in the morning it raises my spirits no end and helps me combat the fatigue of body and brain.

I have a small dog that walks faster than any I have ever known. If you can manage to get yourself in that mode, I know it will help you. Without this I ache so badly all day, bones and muscles alike. It also helps my circulation so feet don't seem to 'noticeably' burn in the daytime. Without walking I'm in pain, all over and joints are so stiff I walk like a cripple if I've been sitting any length of time. I become more fatigues as the day progresses and dep depression follows.

I used to do yoga and play squash before this diagnosis and associated medication. It took me a long time to be satisfied with my daily walking in stead. I've convinced myself I'll get back on my bike but discovered I no longer have balance….So annoying!

ET JAL2+ Pegasys + Clopidogrel

[JenngeetingR828]

I’m just swing this now but so amazed at the similarities many of us share in the feet and leg pain.. it’s just not something the my doctor knows how to treat it address.. but just hearing it’s not so unusual for many of us.. it’s informative!