I think it can be very easy to blame every ache and pain on the condition, however, I'm interested to see if anyone else has suffered similar!
I have recently started getting pain in one of my elbow joints, it's so painful sometimes that I can't lift much more than a kettle of water or open a jar. I also have almost constant neck pain.
I have ET JAK2 pos and take 500/1000 hydroxy on alternate days. I was diagnosed in early 2019 from a routine blood test. Prior to diagnosis I suffered abdominal pain, severe itching after showering and occasional night sweats, which was never explained.
Any help, advice or ideas would be much appreciated as my concern is disease progression. My bloods are generally stable, however, my haemoglobin levels have been a bit up and down.
Thanks
Ian
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Trueblue8
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Hi Ian, sorry to hear about the pain you are experiencing, and you are right, it is easy to blame aches, pains etc on our MPN when it might not be connected at all. You should see your GP about these pains and have them investigated, and also for advice on pain relief or ways you can manage the pain, maybe with exercises, and perhaps ask for a referral to the pain clinic for advice. Best wishes, Maz
Thank you Ian, wishing you a very merry Christmas, from a similarly very wet and windy Beaford (nr Great Torrington) so it seems to be like this all over Devon today. Maz x
Hello Maz ..difficult to understand why you say that all pains ..aches plus all the other misery that ET Jak 2 bring about ..may be nothing to do with our collective conditions...
How come then we all have the same symptoms???I find so many so called experts re this condition..seem to either not know what their talking about or there is something else going on ..??
it’s like you are all trying to play down the symptoms ..as if Mpn is the same as having not much more than a bad cold ... Yes go to a pain clinic , to more people who have no knowledge about this condition ... yes more medication on top of all the other toxins we all take .. ..
I am doing all my own research as aside from the people on this site ..I have no confidence in any of the so called professionals , been mislead to many times .. I just wish so many would admit .. they have very little knowledge of Mpn Jak 2 and of course the other conditions in this vein...or the real truth ... they don’t know ... Lainie ..
Hi Lainie, I can assure you that I am not trying to play down the symptoms and the distress and pain they can cause. I get some of these symptoms myself with my ET and know how awful they are.
The point I was making is that we should not always blame aches and pains on our MPN, they might be something completely unrelated and be because of a completely separate medical issue and should be investigated and treated appropriately, as Ian said, he has almost constant neck pain which may or may not be connected to his MPN, he should therefore get it checked by his GP.
Lainie, may I gently suggest that you may be being a little harsh? Maz doesn't claim to be medically qualified but she does a great job as admin of this forum and is an MPN patient, like us.If we assume that every symptom is related to our MPNs we risk having something else missed. Sadly, our disease doesn't give us a free pass on other illnesses.
I found PV caused so much joint pain that I am on 3 strong pain killers including morphine. I finally had to get an electric wheelchair as I couldn’t even walk down a supermarket aisle because the pain in my spine was so intense I would panic how I would take one more step. On investigation it was found I have osteoporosis. Unfortunately our pain relief clinic is hopeless and the consultant just humbles along. My GO referred me to them and then the consultant wrote to my GP to ask what he should do. I think taking Hydroxy has contributed to my joint pain but it is saving me so it’s a non brainier.
So sorry to hear about your pain, mine is minor in comparison! I'm reluctant to bother the medics at the moment as I know how busy they are, however, once the Covid thing is out of the way I will look at getting some sort of pain management.Wishing you a happy Christmas and New Year.
Hello. I also had the same problem. It is called a tennis elbow .... First kinetherapy , main reliëf pills. But it was not Passing so in the end I had to have an surgery.... Best of all you make an appointment with thé doctor. I aldmost forgot. The also tried with cortisol injections...It is really annoying if it is a tennis elbow. Hope you find help
When I was first diagnosed I was put on hydroxyurea and after a few months began to have significant arthritis, mostly in my hips and knees. Not as bad as what you are describing maybe, but quite debilitating and a real worry because my joints were deteriorating quite rapidly. After about a year and a half I switched to interferon and after a few months the arthritis resolved. Now, after a couple years on interferon, my joints are like normal. Different people react differently to the various drugs, but you should talk to your doctor about the symptoms you are having. A change of dose or a change of medication may make a significant difference.
Thanks for your reply, hopefully I will get an opportunity to speak to my consultant in the new year. I also get pain in my knees but I put that down to running on 60 year old bones!Best wishes
Hi ianWhen I read your post I thought it was about me! I too was diagnosed with ET jak2+ in 2019 after symptoms of severe all over body itching, night sweats, fatigue and generally feeling not quite myself. I discovered that platelets had been rising for 15 years and gp had not told me or questioned it! So I finally was referred to haematologist who confirmed my condition. I was put on hydroxy but could not tolerate (awful side effects) and was switched to anagrelide and allopurinol with aspirin 75mg daily (tried clopidogrel but could not tolerate either) over the past few years joint pain has been the major concern and more recently pain in my elbow has been excruciating. I know I have inflammation but because platelets are now dropping and I feel better in myself I am reluctant to persue my joint pain as I don't want to be prescribed any other meds to interact with my blood meds. Besides I am a medical secretary and work in my local hospital (when I'm not shielding!) and see the pressures covid has brought to the NHS. But the good news is platelets were 800 3 months ago and latest bloods show 593 so anagrelide is working for me. I do worry about disease progression though. What we have to hold on to is that we are lucky that we are having regular blood tests and therefore any progression would be picked up early. I for one can't wait to be vaccinated so I can see my family and friends and get back to enjoying life again. I wish you the best of luck.
Hi Sue, thanks for your reply. Yes it certainly does sound very similar! If you don't mind me asking what side effects did you have with hydroxy? The main one I find is fatigue but I run regularly, which helps to combat it. I've also had a couple of bouts of mild anaemia but thankfully bloods are ok at the moment.Disease progression is always at the back of the mind but hopefully the odds are against it!
I myself was just diagnosed with ET JAK2 pos a few months ago, I have severe joint pain & weakness in both elbows. My platelets are at 600k and my Hematologists just prescribed 500 mg of hydroxy daily, he was hoping by lowering my platelets it would help with pain and itching. "Prior to diagnosis I suffered abdominal pain, severe itching after showering and occasional night sweats, which was never explained" (thats me).
I hope you have a wonderful Christmas, I will let you know how it works out.
Thank you! Oh boy I had awful itching last year but it seems to be improving. Anagrelide seems to be lowering my platelets thankfully. Merry Christmas and keep safe!Sue
Hi ianMany thanks for replying. On hydroxy I suffered with severe palpitations, sweating, nausea, dizziness and unsteadiness on my feet. Had to call 999 twice as my heart rate wouldn't come down. My platelets didn't move either! Thank goodness anagrelide works for me. Funny how medications seem to suit some and not others. On another note I bet you support a blue team. I support a red team, although just lately I'm having second thoughts! I live in Herts and we have just gone in tier 4 so I perhaps going to be working from home on my laptop in the new year.
Ha ha I'm guessing your a gooner then?! I'm a Chelsea fan, I was brought up in Kent but now live in Devon. The side effects are strange in the way they seem to vary from person to person. I have had occasional dizziness but not for a while, fatigue is quite bad and bowel movements are not as regular as they used to be(too much information?🤣).
We bare all on here, even our bowel movements 😂 The fatigue is sometimes overwhelming but strangely I do have problems sleeping too. It's amazing how better you feel with a good night's sleep. I have family in Devon & Kent but I knew this year that would be questionable . My daughter lives in Berkshire and son lives around the corner so it made sense to bubble up locally with him. My daughter had scheduled a visit between Xmas and New year but new tier 4 rules means that is scuppered now. What a dreadful time for everyone... But I'm grateful my health has improved no end, I still have the job I love and my family are keeping themselves safe. There are many worse off than me.... And yes I'm a gooner 😭
I too have trouble sleeping sometimes, the mind starts spinning and that's it, usually a cup of tea helps but then I'm completely knackered the next day!My Dad is 91 and lives in Sussex, I haven't seen him for over a year, which isn't great but we chat every day on the phone.
Where's your family in Devon if you don't mind me asking? I'm in Brixham, which is a fabulous place to live, like everywhere it has its problems but it's a really strong community.
My mum was the only child of 4 who married a Londoner so I was brought up in London and then Hertfordshire. I have many wonderful childhood memories of long summers in Devon with my grandparents, aunties, uncles and cousins. Bideford, Hartland, Chudleigh, Newton Abbot, Paignton, Torquay. I still like to visit twice a year although sadly not this year. One of my aunties used to live in Brixham many moons ago. I hear it is a special place. I had the romantic notion of retirement by the sea so my grandchildren would enjoy their summers with me as I did mine with my grandparents.... We will see what the next 10 years bring (if the government doesn't move anymore retirement goalposts!)
Yes Brixham is a special place, nicer in the winter when it's quiet! I used to go on holiday to Paignton as a child and decided that one day I would move down here. I'm originally from Tunbridge Wells in Kent, which was a lovely place to grow up but I feel the south east is now so over crowded. To be honest, I've always fancied living in the middle of Dartmoor, it's beautiful up there!
My bi-annual trip down west always includes my birthday week. I have booked annual leave for end of march 2021 into Easter as I thought I would do a road trip through Devon. On my list is to explore Dartmoor and plan some good walks as I have a friend in Okehampton I could catch up on too. Sadly with yesterday's news I may have to postpone but let's hope not. I try to visit out of season nowadays as I'm less tolerate of all those tourists!!
I'm definitely quite intolerant of the tourists, this year was particularly bad as the place was rammed as no one was going abroad. That said, they are essential for the economy down here! I hope you get your trip down here but who knows what's going to happen in the new year, particularly with this new variant of the disease!
Yes you stay safe as well. Spurs losing definitely cheered me up, us Chelsea fans can't stand Mourinho anymore. We've just got to beat West Ham tomorrow night now.....Have a good Christmas and let's hope 21 is better than 20!
Hi Ian, it does sound like tennis elbow is a real possibility. It is worth looking up some exercises for it and, or, speak to an osteopath if you can. I have just had a mild bout out of the blue and avoiding tweaking it seems to let it settle.Ian
I did think it might be tennis elbow and like yours, mine has just come on completely out of the blue so I hope it goes away as quick as its come!Beautiful part of the world down here, we moved down 7 years ago from the south east and love living by the sea!
I agree it is easy to blame our Mpn for all of our ache &pains ..I’m going to add misery ... for me I have proved all of my symptoms are from Jak 2 as this causes over production of cytokines.. these cause inflammation...I had a flare up last October my elbows and knees ..hands were so swollen.. I was in effect disabled ... could not open my curtains ...Plus many other everyday duties ..I could no longer perform ...
Only through going back to what I had learned years ago (but forgotten ) DIET... I have gone back to eating plant based foods ... no processed food ..I am much better now .. but know I will have to watch what I eat for the rest of my life or suffer the misery of inflammation ...which I never want to experience again ... you do have all symptoms of Mpn..Jak2 but that is my opinion.. it’s what you think that will lead you to something that will help alleviate all your symptoms..or at least lessen them ..wishing you find information that will help you ..Lainie x
Hi Lainie, thanks for your message. Really sorry that you have suffered so badly with inflammation. My aches and pains are nothing compared with that, my elbow is very slightly swollen and quite painful, it just happened completely out of the blue and I was racking my brains about what I might have done to aggravate it. I'm going to rest it as much as possible to see if it improves and if it doesn't then further investigation is required!Best wishes Ian
Hi lainie, It's great to connect with people who suffer the same as me. This site is a wealth of knowledge and support. I havent yet sought any medication or supplements to ease my inflammation or joint aches and pains. I'm just working my way through by balancing rest, exercise, diet. But I might say the elbow sometimes causes a wince or two. With all that's going on right now I think I could put up with it a bit longer. It's important to me that my platelets are under control and that's the main priority for me at the moment. Don't want to be taking anymore meds for now.
I have a physically demanding job and 13 years ago i noticed i was getting much more fatigued than usual after work. Started getting joint pain (i was 33yo) muscle aches and bone aches. Eventually it was discovered i had ET. I held off from taking meds for a long time but have been taking Hydroxy for the last 2 years.
I cope with it the pain by self massage and a Stretching routine. And have learnt to make sleep a priority. No unhealthy food (or very little as i dont want to contribute to any inflammation). I drink only water in and effort to not tax my body to much. I also break the day up in alternate periods of work and rest. But not too long rest as long inactivity seems to produce the same pain also.
For showering i dont go too hot and use even colder water on my head. Thats seems to work for me. But i think most of the itching went away after i started Hydroxy. Try playing around with different water temperatures at each shower.
I always get night sweats so throughout the night im alternating sheets on and off. I prefer hot nights that way i can just go without the blanket altogether.
Im not concerned about disease progression. Fear and worry just seem to give me more pain. And its pretty much out of my hands anyway except for choice of meds. I make an effort to have moments of calm and peace. For example in the garden watching the chooks or doing some tai chi that i learnt off Youtube. (Qi gung is good also). My theory is that the more relaxed and not stresses or worried my body is. The better it can try to regulate whats going on in my body.
Seeing that you want to climb Kilimanjaro, i think your probably know what your doing in regards exercise and food. But ill mention what i do incase any others are curious.
Light exercise most days has helped me build pain tolerance and keep some strength as i seems to be getting weaker fast. But exercise is a balancing act. To much and im KO'ed for a few days. However, if i stick to it. It does help.
In my opinion, if you give your body the nutrients it needs, the rest it needs, the peace it needs, them you will be giving yourself the best chance of doing well. And whatever happens you will know that you did what you could. You did your best.
I wish you well and i hope you can find something useful in my experience.
I too am ET Jak2+ and on Hydroxy. I get pain all over my body, normally localising in the legs from the knee downwards, lower back and arms from the elbow downwards. I also have fibromyalgia so it's hard to pinpoint exactly what is causing the pain but I do believe the MPN plays its part.
What you are describing could be tennis elbow (which I have in both elbows) which is a tricky thing to completely get rid of. Repetitive movement and overuse of the joint will continue the cycle and I have found iboprufen gel rubbed over the offending area does reduce the discomfort.
My overall remedy for all the aches and pains are:
Never do anything repetitive for long - switch jobs about so you are using different areas of your body for short periods of time
Take a step back and assess how much you are actually doing - you could be pushing your body too much and need to reduce what you do in a day
Have a daily Epsom Salts bath and add essential oils such as lavender, eucalyptus, chamomile, marjoram, peppermint. It works wonders with me!
I hope you manage to sort your elbow out in time to allow it a bit of exercise lifting the Christmas glass of tipple....
Hi Gill, thanks for your reply and some good advice. I keep myself very fit with running and it's so frustrating to get this joint pain. I too have pain in my legs, particularly first thing in the morning and I've got annoying neck pain, which I can't seem to get rid of. The elbow pain just came on really quickly and I do think it might be tennis elbow.There will definitely be some repetitive strain over the festive period as I've got some very nice red wine to get through!
Hi IanGood to hear you can get out and exercise - it is the one thing we are all encouraged to do, however ambitious or small.
One small thought - which your GP would be able to look into - could the elbow pain be related to the neck pain? Quite often problems in the neck/spine can be felt in other parts of the body (think of sciatia - pinched nerve in the spine causing pain down the legs or hip problems being felt in the knees).
I am a keen rider and haven't been able to ride my horse for nearly 8 months now due to the pain in my hips and arms which is most frustrating. At least I get a workout tending to her - albeit far more slowly nowadays!
Take care and enjoy that red! I'll be on the zero alcohol bubbly as alcohol plays havoc with my meds (or me I guess!) but I'll still make the most of the celebrations!
Hi Gill, that's an interesting thought, not something I'd considered, but it's definitely worth investigating.My neck has been bad for a few months now and even my chiropractor said she couldn't treat it. To be honest it's an annoyance, which I just get on and live with, whereas the elbow stops me from doing some everyday tasks. Maybe an osteopath is worth a shot?
Although it sounds as though I'm falling apart, I'm really not in fact I'm proud of my fitness. I set out to run 600 miles in my 60th year, however, I'm now up to 755 and before anyone says it's bad for the joints(which I realise may not help), the cardiovascular benefits and mental wellbeing are priceless!
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