I was diagnosed march this year with Essential Thrombocythemia with a rare mutation plus Jak 2. I suffer with Osteoarthritis as well and was taking Naproxen daily for this. I have had to stop the naproxen due to now being on Aspirin.
Im finding things difficult to understand due to I have all the symptoms of my blood cancer but yet the CNS i am assigned just dismisses everything saying its not anything to do with my diagnosis. I accept that a lot of my pain could be from not being able to take the anti inflammatory medication, but other pain like somedays I can use my hands due to pain.
I feel lost as to who to talk too.
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@jules64 sorry to welcome you to this community.
There are a few on here who have lived with Essential thrombocythemia (ET) for years and are full of great advice as are the @BloodCancerUK_Nurses if you need to chat via the support number.
I have Polycythaemia vera (PV), a closely related Myeloproliferative neoplasms (MPN), and we share many of the painful symptoms, such as bone and muscle pain as our blood struggles to move around our body due to the viscosity being on the treacle side. It means old wounds and scars of a life well lived can sometimes flare up too.
I suggest reading this support booklet, Essential thrombocythaemia | Blood Cancer UK rather than hunting Dc Google for information.
Keep posting and nothing is a stupid question when you don’t know the answer
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Oh @jules64 welcome, I am glad that you have found us.
Personally I think that we are such complex beings and everything is so interconnected.
I find that if I have a new symptom, lump and bump and I do not know which of my complex conditions to attribute it to or is it something new.
It is so confusing.
I just keep raising my symptoms with everyone.
My GP is the first point of call as they are my generalist contact, order tests and they are the ones to refer me to the specialists.
@clickinhistory has given you great links.
Please do keep posting and I hope that you can say how it really is for you and I look forward to hearing more about you.
Be very kind to yourself
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Thank you for your replies. I have read the information on this site and slso on Myeloproliferative neoplasms (MPN) voice and i take comfort in the support provided. Im amazed though that the people who im assigned too dismiss anything i ask in regards to symptoms, i started staking Hydroxycarbamide in May and the only thing they ask is whether i have any mouth issues or night sweats. I mentioned the extreme fatigue but that was dismissed.
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Hi @jules64 . I have been on aspirin for a few years and suffer from osteoarthritis in my hands. I was referred to a hand specialist and she recommended i use a gel called flexiseq max strength (available from Boots and Superdrug)which i found has helped a lot. Nothing in it that you can’t use with aspirin. It does take a few weeks to feel the full benefit but may be worth a try. I also take turmeric with black pepper and a vitamin B complex. I did get approval from my consultant before i took any of these but you may prefer to ask yours too…
I hope you can get some relief as i know how painful my hands can get.
x
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Hi there. I was diagnosed this year. At the moment I take aspirin and see the consultant every 3 months.
At the moment the only thing I have is hot sweats. Part of me dosnt know if it’s this or my hormones!
I’m finding being able to talk to people here is good
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Hi @Happy2019 isn’t it difficult when symptoms might be attributed to more than one condition or both.
Look after yourself
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Hello @jules64
I am so pleased you have found our Forum.
Sorry to read that you are experiencing symptoms and not getting any support or reassurance around this. I’m glad you posted on here and started the conversations.
Sadly Essential thrombocythemia (ET) and Polycythaemia vera (PV) are thought to not have any symptoms, and some information even says it is ‘symptom-less’, however, we know this to not be the case. Unfortunately some healthcare professionals still think of MPNs as having no symptoms, but newer research is slowly highlighting data that states patients do have/can have common symptoms.
Essential thrombocythemia (ET) can cause symptoms for some, and Fatigue is definitely linked - this can be the Essential thrombocythemia (ET) itself, or the medications. If you find that the fatigue is impacting your daily life, you are entitled to ask for help with this. Different hospitals have different approaches; some have a specialist physiotherapist, some have Fatigue courses run by nurses, and in my county our local Hospice does the ‘FAB’ (Fatigue And Breathlessness) workshop.
Your GP or CNS should be able to tell you what is available locally, and also refer you - please do ask them for help and advice. Possibly the practice nurse at the GP surgery can also advise you on Fatigue or where to access support.
Do you mind me asking if you have a specialist nurse or Consultant for your Osteoarthritis? Do they know that you have stopped the Naproxen? You should ask about other medications or options to help manage that pain. I am not sure if this page is helpful: OA/NHS/treatments If you are not under a specialist team, then do ask your GP to refer you for an assessment and discussion on pain management.
If you would like to talk to one of us in the Support Services Team then please do call: 0808 2080 888 it’s free and confidential. We could chat about your diagnosis, symptoms, anything that’s bothering you, or even what to say/discuss with your CNS.
Take care and keep posting, Heidi. 
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