Hi it’s Chris,
So from my last post last week, I recently visited my GP because of my musculoskeletal chest issues which have been a problem for around 3 months now. I am now on steroids for 5 days and more painkillers to ease my aches and pains. My recent blood test showed my PT was borderline but I have been told that it should be nothing concerning. My main issues now with my Essential thrombocythemia (ET) are daily struggles because I am limited physically with my chest, it becomes frustrating and I just want to get back to some normality. Anybody else on here had similar issues with musculoskeletal and Essential thrombocythemia (ET)? My ferritin level is at 11, so quite low which is also a problem that needs to rectified, my GP said I will need at least 3 months of meds to get that level up. I am due to see my consultant in 3 weeks, I am hoping my platelets have dropped and my iron levels have improved.
Best regards
Chris
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Good morning Chris
Thank you for taking time to post on the forum.
I cannot relate to your circumstance, beyond having tests, waiting for results, and speaking to numerous medical specialists (and that’s probably the case for the majority pf people on here).
From what you’ve said it sounds like you are really focused on your condition and that you have a robust support structure in place.
I’m confident there will be other members with not dissimilar circumstance that will hopefully be able to share their experiences to date.
Take good care of yourself and do feel free to let us know how you get on.
Mike.
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Hi Mike, thanks for your reply. Yes I am in good hands and i am positive and focused on recovering from my problems. I do believe that with time I will be able to return to work, my condition has just made my issues more complicated and obviously is prolonging my recovery. Thanks again
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Good afternoon @Fleming97,
Thank you for your post.
We are sorry to hear about your diagnosis and that you are experiencing some symptoms.
We can imagine this is frustrating for you, but it sounds reassuring that you are in touch with your GP and consultant about these issues and that they are checking your bloods at regular intervals. We would suggest keeping them updated on how you are feeling so that they can support you as best they can. Could we ask if you have been referred to physiotherapy for your musculoskeletal problem?
We do hope others are able to share their experiences with you, but in case it is helpful we have a page on Looking after yourself with ET (essential thrombocythaemia) | Blood Cancer UK which includes some tips that may help to ease some of your symptoms or make you feel a little better.
If you would like to talk to a member of our support services team, please get in touch on 0808 2080 888 or email us at support@bloodcancer.org.uk
Warm wishes,
Emma (Support services nurse)
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Hi Emma,
Thanks for your reply, yes I have been referred for some physio sessions at my local hospice. Unfortunately when I was last there they didn’t think I was ready to do any because of my chest condition. I can self refer once I feel like I’m on the road to recovery. Yes it’s frustrating because my chest is not getting better but because I also have an iron deficiency issue, it is prolonging my recovery. My platelets were 799 on my latest blood, with also a slightly elevated PT reading but nothing too concerning. I have been told that I will need at least 3 months of iron meds before chest will feel better. I am due to see my consultant in 3 weeks. Many Thanks
Chris
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