I apologise if this question has been asked a plethora of times but I am a new addition to the site. I have had ET for approx. 17 years and now just turned 54. Fatigue seems to be a big issue for me, along with bone aches. I have to peel myself from the mattress in a morning as my hips (mainly) and back feel like I have run a marathon. Ludicrous haha as I cannot run to save my life! But is it age or the ET? I feel both factors are getting worse. I do hike a lot and have a dog so out walking a lot in the day too!
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Hello Cat1001954 as sorry as I am that you are a fellow sufferer, it kind of makes me feel a little more sane! Its hard to keep explaining to folk that I go to bed really early!
Thank goodness I am not the only one who goes to bed early. I don't get the bone pain, but I am shattered by 7pm. Usually in bed by 8 pm, earlier if I can. ET Jak2+ 12 years, aged75. I used to go out at 9 pm with girl friends for a get together at a local pub, but since covid have not been. I am very active all day, as I am a carer for my son. I don't feel guilty any more. If I am tired I go to bed. Unfortunately my girl friends don't understand why, so I don't see them now. Not having any outward signs of illness is a,drawback to this cancer. Never mind, keep on 😃
Hello! Yes I am Jak2+ and it is difficult to explain to friends about this ET as I do not look ill! I have now decided after all this time that I will be completely open with them and say I can go out at 6pm as will be in bed by 9pm latest! They either will or wont! I am too tired to care hahah!
Hi - I'm PMF rather than ET but the fatigue and bone pain are the worse symptoms here too. I'm 48 and I don't believe it's just normal getting older. I definitely have to prioritise what I spend your daily ration of energy on!
Sorry to hear about the increasing struggles. It could be a bit of both age and the gradual progression of ET symptoms but I would not assume anything. Any change in symptoms like this is something to review with your MPN care team. There could be other things going on as well, such as nutritional deficiencies. Best to have the symptoms properly assessed.
Hi , I am 54 and diagnosed with ET 2018 then post ET MF in January this year. Moved from HU to interferon. I have very similar aches and pains with extreme fatigue. In fact lying in bed at night, my legs and back feel hot and achy. I also walk my dogs every day and work full time( although I am currently trying to reduce hours) I have had an X-ray and this show early signs of arthritis, but I do believe what I am feeling is a bit age related, but mostly illness and medication related. My consultant is reluctant to agree with me and often disregards my symptoms. Insist on having them checked, I did and my MF was discovered. I felt that my friends of similar ages are all living a relatively full and pain free whilst doing similar activities and I could no longer keep up and feeling less strong than I have ever felt. Hope this helps . Penny
53 year old PV gal here in the UK just saying hi. I feel the same some days. Feel I’m too young to feel this old and quite cross about it! I really would check in with your team as the others have suggested. I’ve just started taking a curcumin supplement Hunter recommended it’s called Curcuwin 500 hoping it might help with inflammation and the joint pain. Sarah
have you had a routine blood test from your GP to check thyroid, iron and vitamin levels? Good to rule these possible causes out as they can also give you these type of symptoms.
make sure you get a copy of all your test results. Being in range does not necessarily mean optimal for good/ excellent health, especially with vit B12. Suggest you also ask for folate, vit D, TSH, Free T4 & Free T3, plus iron/ ferritin.
As with this MPN site, there is also Thyroid and B12 groups on health unlocked to help you understand your test results.
Hi. I have the same problems. I went for quite a long walk a couple of weeks ago, felt fine and surprisingly wasn't too tired after but when i went to bed i had burning pains in my ankles and knees which kept me awake most of the night. I never had these problems a couple of years ago and i cannot believe my joints have deteriorated in such a short time. I have recently changed from Hydroxy to Interferon, the side effects from Hydroxy have gone but now i have a new set.
Hello I definitely feel lucky at the moment as just on 75mg aspirin but I know the treatment is coming....I grill my Haem about the latest clinical trials so I can dodge the inevitable side effects but, sadly they all come with some! Take care. K
I notice a big change in how I feel physically, and how fatigued I can be if I haven’t had enough water the previous day. (Sometimes I rebel, and I just can’t face that water bottle one more minute )
My sister had recommended a pinch of pink Himalayan salt in the water bottle, and to add a couple ice cubes - both help.
(I’m *really* going to need to get that 64 oz now - my hemo wants to increase Hydroxy to 1,500 mg from 1,000 mg three days a week (my platelets are really good, Hematocrit keeps going up (47).) Thanks to this group I finally have a doctor who is thoughtful, listens to me and whom I trust. First two doctors since diagnosis—not so much.
I’m fortunate that my employer has let me change my job to remote work, and I can just go rest if it’s all a lot that day.
Hello Pv. Ahh right, that is where I am going wrong. I am drinking red wine instead of water!! You are right about having the right consultant. Mine is lovely and I told him he is not allowed to retire! Karen x
Ahhh, red wine. 37 years sober today, but I still miss a good Cabernet Mine is choosing too many espressos instead of choosing water. (I was joking with my husband that a good part about our beloved primary care physician is that he has three kids in high school, so he won’t be able to ever retire. )
Any and all questions are invited to this group. We are all in various stages of an MPN. After about 2 months after starting HU the outside of my left hip causes me great pain. Sometimes the right hip hurts also. It goes away, but returns. I am active and an avid walker and have never dealt with anything like this. I don’t know if it is the ET or the HU. Anyone else dealing with this?
Boy I can certainly relate to the aches and pains. I'm 62 and just got back from a two day trip to Denver spending time with my 7 yr. old grand daughter and we were on the go for 2 days solid. One day we went to the Meow Wolf exhibit that had lots of standing and walking up and down stairs. I actually felt surprisingly good and had no aches while being there for 3 plus hours. I will add that I've had a bone on bone knee that needs a replacement some day but other than that I'm very active and in shape. Later that evening when I was heading to bed, I had all over muscle body aches that went from my arms, chest and to both legs. It's weird how there is a delay onset of pain from what ever new activity that you do. The pain was so bad laying in bed that I took one ibprofen that incredibly made the pain subside. I do take 2 aspirin a day and a curcumin supplement. Seems like the older I get the more simple normal events are coming with more consequences! Hard to tell how much is age or PV or a combination. Oh......I slept the whole next day! Hard to go nonstop for 2 days with a 7 year old. Kerry
I was diagnosed with ET in 2008 at age 52 and then MF in 2019. But I’ve also had hip pain and lower back pain on and off for 30 years. In my 30’s they said I had fibromyalgia and in my 40’s, I was diagnosed with arthritis. The most recent case was about 3 years ago. I was in excruciating pain for about 9 days. I could barely walk. They finally figured out I had an inverted herniated disc. I guess what I’m trying to say is that you shouldn’t ignore your pain. There might be another cause other than ET.
Oh no I am so sorry! How awful. Thank you for your reply and I shall be more proactive than I have been. Its a double whammy for me as I also have Tourette's (not the swearing kind - I do that irrespectively haha) so I get aches and pains with that! You would think I had enough to worry about but that little surprise, appeared way before my ET! K x
I am quite a bit older than you and have only been dealing with pv for 3.5 years and, yes, the fatigue is a totally bummer. I'm pretty active and start my day early but by 3pm rest is absolutely necessary. That break does give me enough of a boost to get to 9pm. I also seem to be getting some bone pain but I attribute most of it to age (76) and arthritis. All the comments here are spot on. In addition, I've stepped up my hydration big time and cut down my alcohol - also big time. Most of my friends don't seem to get it when I turn down evening events but it is what it is. I can honestly say my health has become the top priority in everything I do. My wife understands the limitations and we kayak or bike early in the morning because that's when I feel my best. I think I'd be a lot worse without my dog and all the walking we do so very glad you have one also. Wishing you the very best on our journey.
Ah, its so....I would say, comforting to hear that a lot of "us" have the same issues. I have never spoken to anyone else who has ET until I came on this site and feel less alone. Cutting down on my red wine would be like cutting my head off so I wont do that! I am going out tonight for a curry with a friend and my stipulation was that we meet at 6 so I will be home and in bed by nine. Ha ha. I feel like Cinderella, only I turn into a pumpkin at 8pm usually.
I am 53 and have post PV MF and experience fatigue and achiness. Have you tried stretching or yoga? Helps with the aches and pains. When I eat a varied diet of as many plants as possible, I do find I have more energy.
Hello! Welllll, the only stretching I seem to be able to manage is reaching up for a wine glass....I have tried yoga but struggle to get into the positions. I find it a bit of a struggle to find the time too. I think I need to do some prioritising in my life!! I am taking my dog to Scotland next week so hope to do some serious walking and thinking!
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How severe is your bone pain in E T & is this made worse or better with treatment ?
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