Painful feet

[Phelpsy]

Suffering terrible with pains in my feet

Worse first thing in morning , but still a problem all day

My Consultant checked them for Blood-flow

& sensation seams all is ok

Says doesn’t think it’s MPN related

I’ve now made an appointment for my GP

Does HU damage nerve ends

As I also suffer trigger mental Neuralgia?

Any advice would be much appreciated

Thanks love Pam x

[Nickthedevil]

Hi Pam where is the pain? As you know I have arthritis in my feet and ankles. The foot pain is on top of my feet. I had plantar fasciitis a few years ago and that was pain in the heel and was agony first thing in the morning. I believe hu can affect nerve endings - my toes are completely numb but hurt at the same time if that makes sense. Hope you and your lovely little ones are well apart from this.

Karen x

[Phelpsy in reply to Nickthedevil]

Hi Karen goodness you also going through it ,

Appointment on Monday so we shall see x Take care x

[Aime]

Hi, I’m going back and fore to a podiatrist at the moment. I’m not on HU, so can’t blame that. I also have arthritis in my toes, feet and possibly my ankles. I have had a few cortisone jabs to calm inflammation in my heels. Not pleasant but they work!

It’s worth seeing a podiatrist as the insoles I was given do help as does the manipulation (ouch) and acupuncture.

Hope this helps, kind regards Aime xx😸😸

[Phelpsy in reply to Aime]

Hi Aime

I made an appointment to see GP on Monday so see if I get any joy !!!

I do have arthritis in the thumb’s had Cortisone injections also

Never again ,

So it’s possible to ,

I keep you informed of the outcome x

[Marossi]

Have you checked for gout? Can be a painful symptom of PV.

[Phelpsy]

Hi Marossi thanks for the reply

The pain is in the heel & sole of the foot Is Gout from the big toe & surrounding area ,

I hope to get some answers on Monday ,

Thanks Pam x

[UKZA]

Hi, I have pain in the heel, especially in the morning. It is said to be plantar fasciitis. It also worsens dependant on the shoes that I wear. I wish you well at your appointment. Penny

[Phelpsy in reply to UKZA]

Thanks Penny it sounds like that doesn’t it ,

I hope to get some answers on Monday

Pam x

[UKZA in reply to Phelpsy]

Good luck

[Anag]

All of the above replies sound possible. My daughter had rheumatoid arthritis in the ankles. Worse in the morning. pain, warm around the area, swelling and stiffness (especially in the morning) are the clues. RA can be in any joint. When you get your next blood exam get checked for Rheumatoid factor and ANA. (Antinuclear antibodies). A tip for swelling and pain in joints is spreading some curd on a folded paper towel and put it on the affected area. It works to relieve pain beautifully. Also, 2-3 g of Turmeric powder with a pinch of pepper in milk or rice milk, honey to taste and 2-3 drops of oil to activate. Works fabulously for all kinds of pain and inflammation. All the best!

[Phelpsy in reply to Anag]

Thanks Anag

That’s helpful

forgotten what it’s like to have

pain free feet x

Pam x

[Ann16]

Hope you get relief soon. I too have pain in my feet, most of the time it’s sharp pain. It’s much better since I was put on Hydroxyurea but still get it some with discoloration on my feet. Good luck to you! Ann

[Inca]

Hi Pam,Sorry you are suffering with feet...me too,my left foot middle toes are agony,can't really see anything,will have to go to a 'podalog'.

Problem is ,when you cannot get shoes or boots on ,you are grounded.

Be interested to know if it's MPN related or fashion shoes over the years.

Hugs,xxSally

[Phelpsy in reply to Inca]

Hi Sally Nice to hear from you

I count my blessings I don’t have the problems you do x

But I’m a busy lady need my feet

For the nanny sitting ,

It’s really come on over the last few month x

Hope your ok x

[Inca in reply to Phelpsy]

Yep ,in a bad place at the mo...saw the pic of Reina,blimey,next thing you will be great granny the way those two toddlers are growing !!!!

Keep you going and focused ,that is the main thing....hope the feet are better soon...I wonder about the gout thing the foot swells sometimes ,but I did break it years ago.....so who knows.xxxxxxS.

[hunter5582]

Never heard of HU causing this problem; however there is some emerging research regarding inflammatory conditions related to MPNs. If you are JAK2 positive, the JAK signaling pathway can apparently increase the bodies production of inflammatory cytokines. There are a host of secondary issues this can cause. HU will do nothing for these issues if that is what is going on. Hope you get some relief to this soon.

[Phelpsy in reply to hunter5582]

Hi Hunter , That’s very interesting for the last few years I’ve been pained with aching joints sore to touch in

My thumbs / elbows now feet

Definitely inflammation in my joints

Difficult to as I’m not been able to take ibuprofen ,

Anyway hope to get some answers on Monday at my GPs or blood tests anyway ,

Thanks Pam x

[hunter5582 in reply to Phelpsy]

FYI - I have been taking Turmeric-Curcumin extract blend for several years now for the arthritis. I have not needed any form of NSAID since then. I always use a formulation with increased bioavailability.

[ChattyPanda]

I don’t know if it’s the same kind of pain you have, but my first symptoms were incredible fatigue and a painful, burning in my feet almost every time I stood up. Later I was told it’s a common thing when you have too many platelets or your blood is too thick (too many red cells or high hematocrit). They started me on just aspirin, for 1.5 years before adding HU. The pain in my feet subsided rather quickly after starting the daily aspirin therapy. I didn’t connect the dots, but my doctor pointed it out.

[lavender007]

Hi Pam,

I have a condition called erythromelalgia common in MPN patients.Look it up and it may help you to understand it .

Good luck Lav007

[Phelpsy in reply to lavender007]

Hi sure sounds like my feet at the moment

I’m definitely going to mention this to my GP , I’ve taken photos of it on bad days

So they ca see what I’m experiencing x

Thanks for this Lav007 very interesting x

[clubdino]

I suffered the same problem for several years. The pain in my feet was excruciating. Over the counter pain medication did NOTHING for the pain. It was always worse in the morning but the pain continued all day. I was tested for lupus and rheumatoid arthritis and both the tests came back negative. I can tell you what I did to ease the pain but you probably won't like the answer...I tried intermittent fasting. Last month I did two 30 hour fasts and two 24 hours fasts. I drank nothing but water for all 4 fasts. I also lost 25 pounds over the past year and my foot pain is so much better. I guess the idea is that MPN patients are more prone to inflammation issues in our bodies and certain diets contribute to inflammation. (I never have had the best diet.) I have to admit that fasting is not fun but I can't deny that fasting in conjunction with my weight loss has cured my foot pain.

[Uzza]

Hi Pam...I have also increasing pain and discomfort in feet mostly, but hands too.