I was diagnosed with PV (jak2) in December 2018.
I’m on daily Hydroxy and aspirin with the odd venesection and generally my condition is stable.
The last couple of weeks I’ve been under a lot of stress and I feel as unwell today as I did pre diagnosis.
Could this be caused by the stress?
I’m not a medic but worth speaking to your GP, as in my humble opinion stress has a huge affect on how we feel and I’m sure on our medical conditions. My GP was very sympathetic and I have been on sertraline for a number of years, which although reluctant to take at the beginning, I feel has helped me a lot and kept me on the “rails” when times have been difficult. Take care. 😻
Thanks Aime x
Hi, I'm no expert but there're plenty of medical papers that reference a link between stress, anxiety etc and increased hematocrit.I have ET (aspirin only) and venesection which helps with symptoms.
Last summer my VS was every 8 weeks. Then for 6 months I had a VS every 4 weeks (HCT always 48). There was increased stress in life.
I asked if we could try and shift the window and get HCT at say 46 every 4 weeks. So 2 weeks later they tested and HCT was 43. Much to everyone's surprise. 4 weeks after that it was 46. So I'm back to a 6 to 8 week window 🤞.
What do i think caused the improvement? I retired, left a job where micro management had ground me down. Hopefully, this holds true.
Morning to you. I have ET Jak 2 and over the past few years suffered a couple of bad anxiety attacks which seemingly came from nowhere. In fact I now know they were related to a double bereavement from a couple of years prior to that. However this was all pre ET diagnosis, but I have to say that now since that occurrence, any added stress or anxiety certainly exemplifies my symptoms quite considerably and can then take quite a while for them to settle down again. They can seem to linger on for a few weeks. I too am on Hydrioxy and aspirin and have raised the same question you are now raising. There are days when my symptoms etc feel as bad as they were before I started on the medication. Having not long had bloods done and found the platelets down to 358, I struggle to understand why this happens so truly sympathise with the question you are raising.
I have ET and I really can’t cope with stress. Even going shopping has to be planned in advance
Aime, I was diagnosed a few months ago with ET. I have found there are a few days that I am so stressed I can't think and feel like I'm going to fall apart. I have an appointment tomorrow to see if he can give me something for stress. Not only do I have ET, but high blood pressure that is very unstable right ow. I'm so glad you brought up the stress and love the responses to your questions. Thank you all.
Stress can have significant impact on your body. It has been specifically linked to thrombocytosis in the literature. It affects your ability to get restful sleep, which in turn contributes to fatigue. Stress also increases the overall level of inflammation in the body.
Dealing with stress effectively important, particularly when managing a MPN. This is my list of coping techniques.
1. Support from my family, friends, and faith community.
2. This forum (my friends and MPN Family)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
All the best to you.
hi hunter - you at the moment are my ‘font of knowledge’ thank you! Can you divulge a bit more on this reply you sent a while back please? 😉
Stress has enormous impact in the body in a wide variety of ways. It causes a cascade of biochemicals to be released in the body It can affect inflammation, platelet activation, volume and more. Managing stress is important for everyone. Even more so when you have a MPN. There is information on this in the literature if you care to look.
I went through a period of time back in 2013 when my stress load became overwhelming. I did not deal with it well at the time. I was experiencing significant GI issues, including gastroparesis and gastritis. I found out later that this was at the same time that the ET progressed to PV. After making it through this period in my life, I decided to never let that happen again. Rather than stuffing fear/anxiety when dealing with pain and medical issues, I would manage my stress actively and deal with the issues assertively.
Over the last several years, I have had four surgeries, including heart and brain surgery. I also found out the ET progressed to PV back in 2013 and I was misdiagnosed. While there were a lot of stressors, I handled them very differently this time. Despite a series of medical challenges (AKA interesting health earning opportunities), I have managed quite well. This was a conscious choice on my part.
I understand MPNs and the other conditions I manage much better now. Knowledge is power. Feeling empowered reduces stress. Confronting fear and anxiety allows me to manage it effectively. I developed my own list of coping skills that work for me. Everyone needs their own list.
Wishing you all the best.
Thanks everyone. You comments are very helpful and as usual the support of this network is invaluable.
I’m definitely going to focus on some mindfulness.
It’s one of those things I do periodically then neglect to make time for when life is plodding along normally.
A good night sleep would be nice and I clearly need to be more conscious of avoiding stressful situations (not always possible I know)
Your comment at the end on a good night's sleep is a great place to look. If you can sleep well it's a start to lower stress and body repair, and a sign of lowered stress in itself.
I have found a correlation to stress and my MPN symptoms, but in which order is sometimes not clear.
Absolutely. In my case i had severe anxiety on off for so many years, palpitations, hardly any sleep, how i survived is a mystery , blessed me with PV at 57 yrs. 100% due to stress, worries.
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