I'm 44, JAK2+ with ET. I generally don't suffer from symptoms apart from frustrating fatigue and have had some thromboses. Now though, I have noticed severe stiffness and pain in my lower back. I'm like a very old lady. Heat treatment helps but I wonder if this is related to ET or just 'one of those things'. I've heard of people with bone pain - I don't think this is bone pain, just joint stiffness which causes pain when l stand up. I'm on warfarin and aspirin, not HU or interferon....
Thanks for any feedback
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Karol_Rua
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All of a sudden I also started feeling like an old lady. I am also 44yrs old with ET.
I am soo stiff when i stand up, its msinly my legs that are the worse but my back can get stiff stiff. I personally thinks its down to my ET cos i exercise at least 3 times a week and have a fairly active job.
I don’t know but mine is like that, I’m not sure if it’s my fibromyalgia or ET but back, legs and shoulders are the worst.
This ET is not my friend at the moment! please send it home! It’s definitely an alien.
Pain isn’t funny, I try breathing it away, heat and cold creams, a relaxing bath, pain meds and CBT diversion therapy’s. The only thing that helps is an early night a long sleep and hoping I’ll have a little while before this world is rocked once ET more.
Contact your GP, keep a journal and don’t suffer in silence. I thought perhaps I was going through the menopause! It had to be something surely!
Then I got diagnosed with fibromyalgia as well and now I try managing my days better, especially on bad pain days.
Your not alone in this
I’m 44 and too and at times it feels like a hot furnace is burning my bones from the inside out to a dull ache like flu feeling that are bending my bones. Whichever it is in the moment it has to pass.
I am a little older(62) but also have had lots of episodes of bone/muscle chronic pain throughout many years.. I’ve put down to Under active thyroid and ET Jak2+. Though now looking at Fibromyalgia , I see you were diagnosed, how and what specialist did you see, I’m in the uk . I have seen so many physiotherapist in the last 10yrs all trying different methods to ease the pain.. I’ve been told too difficult to diagnose fibromyalgia..
Hope you are having a good day today and the sun shining for you.
I live in Northern Ireland, moving walking around, transferring from seat to seat, seat to rolateor then starting to walk is a task ++. In many mpn groups there is more than a few ET patients that have stated they too have fibromyalgia, every time I ask the question is this a coincidence the reply is that not enough research has been done to an answer. I asked my gp about it and it’s definitely something I’d like to ask an mpn specialist.
I believe something was going on in my early 20’s when I suffered a stroke... three pregnancies... other ailments and symptoms and I’m thinking just how long, what did I do, should would and could have done something to hold these things back.
Thanks for replying. Yes frustrating no confirmed answers.. I live in Scotland (Aberdeenshire) and going to a forum in Nov and will be asking these questions. Plus an appointment with haematologist next week.. My GP thinks going to rheumatologist could help if fibromyalgia? Do you do anything that helps with the pain... ?
Warmth and stress free people and situations. It’s not that I’m antisocial but I’m coping with it and trying to manage this stuff. It’s ok not to do everything for everyone all the time, kinda have to find the balance and take it an hour at a time. It’s not bringing others down but being a little bit selfish as to where my energy goes each day. This is what this body is teaching me. I hope it makes sense.
My daughter is 15 and has the same symptoms with fibromyalgia. We got it under control with an autoimmune diet. It took 2+ months for changes to register. She was having pain several days a week. Now it’s only several days a month. Ive been on the same diet for 10 months longer. The change in my health is incredible! Many of us have problems with the toilet. It’s important to make sure we have a proper stool daily. If not, every illness is worsened and there’s pain and weakness, because toxins get reabsorbed by the gut. Wether it’s HU, Interferon, Anagrelid, warfarin, we have to keep cleaning our body and reduce intake of other toxins as much as possible.
Well you have quite a few responses here, but thought I might add my own experiences too as they may be relevant?
Three (3) years ago, I was originally diagnosed with ET. However, after some further test results that was changed to MF based upon my symptoms and BMB results.
It is quite a fascination, this journey I mean, because I can also look back to my past and now realise that many of my symptoms had always been present for quite some time, and by that I am guestimating circa 15-20 years, (60 yo now). That would have me around your current age of 45 yo etc.
I do suffer from quite severe bone pain, (from time to time). However, it always becomes more exacerbated by the colder seasons. In fact, I have just been through a bad couple of weeks really... And just to make sure I made myself even more ill, I did not listen to my body that was clearly telling me not to go riding at 3ºC last week, even in all my thermal gear...
About half way through the ride, I realised all too late that I had made a serious mistake... I am guessing that my bone marrow might be so badly scarred that it no longer provides me adequate protection from the elements, and as a result I suffer bone, joint, shoulder, hip and back pains.
When it becomes intensified, I find the only thing that really works for me is to act like a Bear and go into hibernation, and just keep myself as warm as humanly possible.
Many years ago, I use to sail quite a bit, and on one particular yacht delivery (during a cold winter), I suffered from being exposed to the elements on a long night's watch through some rather stormy and perilous seas...
That feeling, caused by my being over-exposed to the elements, gave me a small case of hypothermia... And that feeling is about the best way for me to try to describe this diffuse and ubiquitous sense of aching pain, that usually exists just below the surface, usually...
Just to be on the safe side I am also having my thyroid retested too... However, and as mentioned earlier, I know I have had this condition for a very long time... Something that I have been doing to relieve the cold is by taking scalding hot showers... I am certain that is not a normal response for most people, yet it is something I have been doing for many years...
As it does provide some short term immediate relief, in my case...
Have you been tested for gout. I got so that I couldn't walk far and my hips were ceasing up as well as knees and foot problems. I didn't realise gout can attack almost anywhere in the body and after x-rays negative for osteo arthritis I had positive test for gout. I was prescribed Allopurinol and although I still have occasional flare-ups, the improvement is colossal. I have Jak2 positive PV. It's worth a try anyway.
Hi, I’m a 47 year old female, with ET and JAK2 +..... I also suffer from bone pain & stiffness especially at the end of the day. My consultant would say it’s not the ET and to be tested by my GP for anything else. Those results indicated nothing else was going on. Only now will the consultant accept its part of ET. I’m afraid I don’t have any suggestions or remedies to dealing with it. I just accept its part of having this condition.
I'm also experiencing a lot of stiffness and pain in my joints and bone. I'm sure it's the ET. I've heard that the Jak2 mutation causes inflamation. I've been fit and active all my life and played sport into my mid 40s with no problems. Suddenly I'm experiencing multiple joint pain and feeling like a geriatric. Also a lot of hot swets. I always have an headache and frequent bouts of lightheadedness.
I was diagnosed with fibromyalgia in my early 30’s, arthritis in both my hips and lower back in my 40’s, and ET Jak2 at age 52. I was married during most of that time, raising 2 children, and teaching children with special needs. I’m 63 now and also have PV. I don’t know if it’s related or not, but I read on this site that our blood disorders can cause inflammation. Try to reduce your stress, see a physical therapist to give you the proper exercises, drink lots of water, and rest when necessary. I got divorced in 2005, quit teaching, and now sell insurance on my own schedule.
Hi Karol_Rua, I was only diagnosed a month ago, and still learning, I'm 45, diagnosed JAK2 +ive and ET after cerebral venous thrombosis. I don't have many stiffness, pain symptoms, but had been having a few a while back, and the GP found I was Vitamin D deficient (common in europe!) and going on supplements for that helped a bit I think (this was prior to ET diagnosis) . I also exercise regularly and find swimming really helps keep things loose.
However, I'm also a chartered physio, specialising to some extent in persistent pain, and I'm sure I saw something in the literature that I've read so far (not that much yet!) that there may be a link to increased inflammatory cytokines in the bloodstream with MPNs - this is the stuff that can cause pain, stiffness etc, and can to some extent be influenced by lifestyle and nutrition. As I learn more, if I come across it again , or if anyone else knows where it is, I'm happy to try and find out a bit more.
There is always a little bit of a vicious cycle, in that anxiety about pain (or other life events / factors) can cause an increase in muscular tension, which in turn can increase the stiffness and then that increases the pain from the tired, stiff muscles, so I'd highly recommend gentle regular movement (even with the back pain), basic pain relief if needed and suitable for you (e.g. paracetamol) and relaxation with deep breathing techniques for releasing tension, plus the warmth.
And, if its new to you, and doesn't start improving soon do seek advice from a qualified physio near you.
I am 64 with the same condition but with AF, Mitral Valve regurgitation, etc. I experience fatigue and whole body stiffness, with heightened sensation in feet and hands. Because of my base-line meds, I cannot take most anti-inflammatory drugs because of the "Triple-whammy" effect which may result in kidney failure. I am on Pradaxa, no longer aspirin, as I recently suffered a duodenal hemorrhage, increased bilirubin, potassium and increased liver function levels. The bottom line how are your biochemistry parameters?
I am overwhelmed, once again, by the care and interest of the MPN community! Thank you one and all for your replies. I remembered that I actually am on the border of osteoporosis so this could explain some of the stiffness....I've been on high doses of steroids at times.
But I intend to take onboard all the tips and advice and try to get my stiffness diagnosed at least, if not remedied.
Where would I be without the support of MPN Voice?😘😉
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