Does anyone have an opinion on why my thighs and ankles are so painful when I’m in bed , also have swollen hot feet.? I can manage the pain through the day but can’t sleep at night
My haemo thinks it might be Polymyalgia rheumatica but I’m not convinced and don’t want to take steroids. I’m trying an anti inflammatory diet .
My platelets are about 700 and I’m on 10 x 500g of hydroxycarbamide a week.
I’m also on Diltiazem and Rivaroxaban for AFib
Thankyou
Hi, I am Jak 2 positive and ET,I'm taking 1500 hydrea daily and I suffer at night with pains in feet and thighs, recently consultant increased hydrea and pains not so severe,Hope you get sorted as it not easy living with leg pain,good luck
There are a number of things consistent with what you describe, including edema, Peripheral Artery Disease, varicose veins, cardiac issues, and more. While the symptom may be related to the MPN or may be a medication side effect, it is worth noting that AFib is one of the potential causes. "Fluid buildup. You may notice that your legs, ankles or feet retain water or look swollen if you have AFib. " bannerhealth.com/healthcare....
None of us are qualified to advise you about what is causing this issue. Pain and swelling are the body's warning that something is wrong. It is best to heed the warning and follow up with your care team promptly rather than just put up with this discomfort. You need an answer to what is going on and effective treatment for it. Suggest contacting your cardiologist about this symptom. It would also be advisable to contact your MPN Specialist.
Please let us know what you learn and how you get on.
Thankyou
Hi Juliet46. Unfortunately I cannot help as I have similar issues and have been unable to get to the bottom of it. I would be most interested if you do manage to find answers. I don't have the issues with my thighs but I do get restless legs which is probably down to low iron so I just try and put up with that (easier said than done!)
My ankles and feet are the main problem, especially at night or when I get up after sitting. My feet are always hot and my ankles get swollen. This is despite walking regularly and not being overweight. I have had my heart checked, blood pressure and even xrays on my ankles but nothing has been revealed. (I read somewhere that the reason for hot hands and feet is high blood pressure, but mine is always fine?) I asked for an MRI on my ankles and feet but I was refused. Unfortunately, GP or Haematologists cannot give me an answer or suggest any further tests. So, guess I'm just left to put up with it - I hope you have more success.
I have had MF and AF since 2017 and experience aching legs, but by chance discovered that consuming small quantities of 70% cocoa dark chocolate seems to help. About 10mgs a time. Better than ibuprofen or paracetamol.
Hi, my husband has achy legs when sitting for any amount of time, and especially at night which makes sleeping very difficult. He also feels a slight disconnect with his legs when we are out walking.
We are unable to get to the bottom of this. His haematologist says it is not ET, but this all began at the time he rapidly lost a lot of weight (not intentional as he had no weight to lose) and we then discovered his platelets at 930.
He is otherwise healthy, so we are trying to do more exercise, and we think this may be helping. His platelets are also down to 600 and its possible that might be helping too.
I wish I had an answer for you, and would love to know if anyone else has found a solution to this
Sorry to hear, you also have these symptoms. I take Duloxetine which seems to help a lot especially in the early stages. This drug is is primarily an anti-depressive but also used in the treatment of peripheral neuropathy. If you a liable to fluid retention as I am, I have found the occasional Frusemide to be effective. I only take steroids if there is devolution into gout.
I also have leg pain and my feet hurt terribly at night. I believe it is the PV . My Dr dosnt know either…i am on 1500 Hydrea and not helped much at all on the feet or leg pain so far….
Hello Juliet,
Me too, swollen hot feet, especially when unable to elevate the feet at all during the day.
Try washing feet in cool water at night and rubbing in a good moisturiser. Sit down to peel vegetables and on every other possible excuse!
Statia
Thankyou
Is Aching at night a symptom of ET
Weak lower legs and thighs
Restless Legs / Body
Elevated platelets - so worried
New , looking for advice and a friend. 
