ET & Bone Pain

[Smoothie2020]

I was diagnosed two years ago with ET and I got out of bed Wednesday morning and experienced what I believe was my first bone pain. It felt like someone stabbed me in the leg. It happened again on Thursday but nothing since then. Does anyone else experience bone pain? What do you do to control it? I don’t ever want to experience that again.

[Cat1001954]

hi I have triple negative ET and recently my legs ache when I lay down of a night and can be really painful. It affects my bottom where sciatic nerve joins in I only take paracetamols as I can’t tolerate strong painkillers I was diagnosed in august last year I used to think it was rheumatism before I was diagnosed

[Elly-Roze in reply to Cat1001954]

I have ET MF I also suffer with sciatica. I found a tens machine to be helpful. I got a new one the advice from a physiotherapist from Amazon it’s as good as my first one. Performance Health TPN200 plus.

[Anag in reply to Cat1001954]

try taking CBD tablets/capsules for the pain. It dock onto the pain receptors in the brain and works miracles for many people. Much better for you than medical pain killers that are bad for our gut and liver. Some few people, can’t tolerate cannabis though. You’ll know once you try. You get querzukommen. I also use a CBD cream on the spot where I have pain, wether muscular or joint pain

Below are very good products from Holland price excellent

gezondheidaanhuis.nl/de/pro...

This cream works well.

Below the drops. Also comes in oil. There are doctors who prescribe Cannabis oil or Tinkturen. You can also buy over the counter.

gezondheidaanhuis.nl/de/pro...

Hope to have helped.

Anag

[Rastavapa in reply to Anag]

I too use cannabis oil and flower for my bone pain ,I get a prescription from sapphire clinics in London and it works excellently ,no more painkillers ......although some people don't get on with it but it's work a try Def

[Turfbeg]

Hi! Interesting that you should have this shooting pain as I experienced this intermittently in my right arm for a few weeks last year but it has gone now - I had forgotten all about it until I read your post. I have had PV since 2016 and did think it might have been a symptom but as it's gone now it was probably not. Hope yours goes as mine did. Turfbeg

[Smoothie2020 in reply to Turfbeg]

Me too!

[Trocken in reply to Smoothie2020]

I too get an intense stabbing pain in my left upper arm, it’s horrible and can last a while, it’s not everyday but has been happening for over 6 months now. I also get dull pains in my legs at times more so at the end of the day, this has been present for many many years. I tend not to take anything for it and use distraction techniques, if it’s too much I just take paracetamol

[wendycu]

Hi, I have ET and MF, I’ve had bone ache for many years, it got worse since 2018. It’s worse in the cold weather, pain killers, hot baths, warm blanket over your legs. Plus I have arthritis too, both hips, both knees and right ankle. I’m not going to moan about it, I just get on.

[J-fd]

I have ET and have bone pain in my legs , feet ,hips specially at the end of the day I take pain killers and hot baths ease for a while but just have to get on with it as work 12 hour shifts in hospital so that doesn’t help , feel like a old woman , I don’t feel there’s much help for ET and just left to get on with it I’m only on aspirin at the moment ,

[JenngeetingR828 in reply to J-fd]

I agree with you.. I'm in the same situation, and have no relief.

[Orangeboykitty]

I complained to my hematologist about bone pain for years. It was mainly in my shins and mostly at night. I was diagnosed with PV in 2013. In the past year I've switched to Besremi from Pegasys and gradually the bone pain went away as did night sweats.

[JenngeetingR828 in reply to Orangeboykitty]

This is really encouraging to hear as I have similar pain + night sweats. I am on Hydroxy.. it doesn't seem to help. I'll ask my oncologist.

[Smoothie2020 in reply to Orangeboykitty]

It’s good to know that bone pain can actually go away. I know it’s not for everyone but just knowing there is a possibility gives me hope

[Jennytheb]

Strange to see this post, I have been in awful pain since end January, legs, feet, thighs, hips, couldn't walk at one time, bloods taken, nothing out of the ordinary, thought it was permanent but now just left with intermittent hip pain, I am Jak2ET, didn't think to link it with this. Hope you are better soon.

[J-fd in reply to Jennytheb]

I’m jak2ET and I was brushed off by my consultant over the bone pain but we can’t all have it and it not be related to our illness , I really don’t know much about condition apart from what I google

[Grendall in reply to J-fd]

I totally agree, it’s one of the symptoms but I’m on peg interferon and that is also listed as a side effect. I don’t ask them anymore as they don’t know (not experienced enough) so just shun it off but if they read up like we do it is real….

[Staroftheday]

I also suffer with sore legs like an aching pain feel it’s my bones also pains in my arm I have told my doctor but feel he just brushed it of x

[JenngeetingR828 in reply to Staroftheday]

I can relate - I even had my primary care doctor say - there is no such thing as bone pain?? !!

[Staroftheday in reply to JenngeetingR828]

I could and have cryed with the pain I took the wk of work the other wk that’s something I have never done the doctor gave me tramadol they made me really sick I vomited a few times so now it’s just the standard painkillers xx hope you are okay x

[Smoothie2020 in reply to Staroftheday]

Same here. I felt like they brushed me off too

[JenngeetingR828]

It is really helpful to read that others are going through this as I too have suffered from bone pain. I was diagnosed in 2018, and I'm not sure when the pain started, but it has become something that impacts me daily. It started with my lower legs, and now includes my feet. There are times when the pain is so bad, I am just in agony, daily. I have found that keeping them elevated and warm helps. I have two heating pads in my home. One in the family room when I am watching TV with my family and one in my bed. I find that when I am able to elevate them, and warm them.. it hurts, but then helps. Cold seems to really make them worse. Also, every morning it hurts to get up and get on my feet and I feel like my 76 year old mom, hobbling to the rest room as I start my day. I asked my Oncologist about it.. he referred me to my primary care physician who makes me feel like a hypchondriac but who ordered blood work and x-rays to see if it was arthritus.. but both were negative. So.. then he referred me to physical thereapy.. which is crazy b/c it's INTERNAL pain.. not muscular. So for now.. there seems to be nothing but pain management..

Would love to hear what others are doing if they have the same symptoms.

[Smoothie2020 in reply to JenngeetingR828]

Yep. I notified my oncologist and his nurse said keep a diary and if it gets worse call back.

[JenngeetingR828 in reply to Smoothie2020]

Not helpful at all - right?! I feel like we are constantly interacting with medical staff, who really don't get it. 😔

[Grendall in reply to JenngeetingR828]

totally agree, I don’t ask anymore just get my info from fellow followers on here as bd reading 😡😡

[Pte82 in reply to Smoothie2020]

Smoothie2020, after my wife's ET progressed to MF and all pain drugs no longer could touch the bone pain in her legs, arms , hips and shoulders she tried Low Dose Radiation Therapy. No guarantees they said, might last a month maybe a year. Her treatment, no pain thankfully, lasted two until she passed from leukemia last year.

[Smoothie2020 in reply to Pte82]

So sorry to hear she passed. My condolences.

[J-fd in reply to Pte82]

sorry too hear of your wife’s passing x

[Pte82 in reply to J-fd]

Thank you. Do investigate a transplant while your young, we didn't know 70 is the cutoff age.

[J-fd in reply to Pte82]

really , I didn’t know that thank you wonder how someone is a candidate for a transplant

[Pte82 in reply to J-fd]

Ask your Doctor at your next appointment. In the mean time research the subject as it currently offers the only cure. Also search on "stem cell transplant thiamine" to raise your awareness. All the best to you.

[Weasel2020]

Where in the leg do you feel the pain? I'm curious because I have this pain in my leg too...and it's a very deep pain and only lasts a few minutes at a time...always in the same spot - very upper thigh, a bit toward the inside (not quite groin area). I've been having this for a few years and now have had it happen in my ribs and upper arm...all on the right side. I don't know if mine is bone pain, but always suspect it is.

[Smoothie2020 in reply to Weasel2020]

Outside of upper thigh and it was in the same spot each time. Mine is on the left side.