I had a pain in my left shin a few times: sharp pain wakes me up, rubbing does nothing, radiates down my leg. I asked my oncologist last week about it. He said it isn't bone pain because adults don't have marrow in their legs-only their core, so it's muscular. From what I have read on here, it sounds like many of you have bone pain in your legs and elsewhere. Is my doc totally off? Why would muscle pain stab when I am sleeping? It seems that whenever I ask questions, I end up more confused...
Thanks for any input...
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BeckyM4
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I have exactly that pain in my shins, particularly the right. My haematologist also thinks it is not to do with ET and referred me to a rheumatologist who is doing many tests, including an MRI for shin splints, though he is not convinced that is the problem. I think it is too much of a coincidence that so many of us suffer this problem.
I too have bone pain even down to my ankles when I am in bed. Definatley not muscular. I think it's just one of those things that we get with our condition.. Sorry no help to you there.
I agree with you all,I am P V,6years now,have the long bone pain ,and elsewhere,hard to know if it is wear and tear,but too much a coincidence that we all seem to have it to some degree,regardless of age.Have a good healthy 2016 everyone,won't say Happy New Year,I will be in bed long before midnight......guess many of you will struggle to stay up!!!'
It's just unbelievable how many of us suffer with the same deep bone pain ,
Mines from my right hip to the foot it's a pain like you just don't know where to put it , it's wearing me out just now ,😱
Im sure going to mention it again in January to my consultant , that's if I see him they normally give me a person from pharmacy , ( which I don't agree with ) my conclusion is we know our own body's , good lucky Becky with your next appointment , X love Pam ( in Newcastle)
The bone pain/ marrow debate is very interesting. And I did wonder why they took biopsies from the hip bone when it would seem to be accessible from a leg bone? Looking on google this is what I found.
"All bones in newborn babies have active marrow, which means they are producing new marrow cells. . By the time a child reaches young adulthood, the marrow inside the bones of the hands, feet, arms, and legs stop producing new marrow cells. In adults, active marrow is found inside the spine, hip and shoulder bones, ribs, breastbone, and skull. However, bone marrow found in the spine and hip has the richest source of bone marrow cells."
So I guess we do have marrow in our legs but it is not active.
Hi BeckyM4, as you can see from the replies there are quite a lot of us who do suffer with this bone pain, I also get it in my legs, drives me up the wall sometimes as it is so painful, so you have my every sympathy. In our booklet we have the results from a survey, 709 people with MPNs were asked about their symptoms, and the results for bone pain are: ET 40%, for PV it was 43% and for MF it was 47%, I hope this helps. Maz
Thanks ever so much Maz , it's obvious to see the booklet provides the information clearly to see , im so going to take this to my next haematology Appointment .
I know they don't like us to tell them there job ,
But I'm so fed up of being passed from GP to Consultant
Hi Becky - just to add my take on this subject. I asked my Haemo about the pain in my left shin - was it bone pain? She looked at my leg, saw that there was what looks like a small cluster on veins under the skin but not raised at all, and said "No its varicose veins". Well my experience of varicose veins previously is that they ache, (admittedly I have only had one before and that is now much better as I exercise more now). They do not produce the shooting pains that this does which, wakes me up in the middle of the night. It does seem strange that many of us have the same or very similar experience of this. By the way, I rub a small amount of ibuprofen gel on the affected area and it works a treat. Sue
Hi Sue, wish I could use anti inflammatory products but even the gel (applied correctly) affects my stomach and results in inflammation of stomach lining and associated pathways! My GP said to careful as it can affect stomachs and I thought he was joking.
Everything seems ache just now, not sure how much I can blame on my PV and how much on arthritis but hey ho there is always someone worse off. Kindest regards Aime xx😺
Thanks for that Aime - I knew there was a connection between taking ibuprofen tablets and taking Hydroxy and hoped it was just the tablets they referred to. I only use it very sparingly and only when the pain is bad and affecting my sleep, but I will bear your comments in mind if I get any stomach problems relating to this. I will also mention it at my next hospital appointment to see what they have to say about it. Regards Sue
I live in the states and suffer from extreme long bone and joint pain. My oncologist prescribed Zyrtec or Clairton (antihistamines). I take it daily. It has drastically reduced the long bone pain but has done little for the joint pains.
another hallelujah moment when I found this topic. Most nights now I have to have paracetamol because of my hip and knee pain. It's like the most annoying toothache ever. I have PV but it seems lots of us on here are experiencing the same pain problems. I am already on MST (50mg per night) and Pregablin so you know how bad the pain must be when that can't get me through the night. I have ordered one of those huge body pilllows, which hopefully will be here tomorrow, so I will keep you all up todate if it's helped or not, at least it will keep my leg aligned with my hip which can't do any harm.
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