Bone pain

Hi All

I just wanted a bit of advice really. I was diagnosed with MF in April 2016 and have been relatively well since my diagnosis. Apart from feeling drained quite regularly I have not had any other symptoms. Friday last week however I started with a pain in my hip area on the right hand side. It feels very much like it did after I had my BMB. I just wondered if anyone else had felt this kind of thing or if this was the start of the bone pain symptoms that people feel. It aches most of the time but really aches when I'm standing or walking about.

It may seem like a strange question but I am usually the kind of person that will down play how I'm feeling and generally let everyone know I'm okay and if this is just an extra sign of getting that bit older, don't want to make a fuss and find that it is just something small.



6 Replies

  • Hi Lesley, , , good to hear from you but not so good on the bone pain front. . . As you know it can be a symptom of MF but I had intermediate / high risk and in the 10 years although I had day of aches and pains I couldn't categorically blame my MF, often it coincided with an activity like gardening or tidying the shed or some such thing. . Best thing is to see GP if it continues as you may get an xray to check your hip bone not worn or no arthritis etc. I had a couple of bone density scans in latter years but they were ok.

    I wouldn't put up with the discomfort for too long as the sooner you have it checked out the better. . Also see if there any changes in your bloods at your next clinic and if it's a ways off bring your appt forward if possible if only for peace of mind. . Take care Chris

  • As Jedireject says, get it checked out.

    If it's nothing all the better, if there's something going on, I personally feel it's better knowing what.

    I don't have Jedireject's 'experience' - for me suspision to transplant was only 18 months - but often suffered from aches and pains, rheumatism types of pains etc, but some of the pains themselves could be associated with the treatment secondary effects.

    Good luck. Crapaud

  • One of the worst symptoms of MPN is the bone pain. I haven't progressed to MF yet, I have PV and along with the fatigue the pain is right up there on my list of most hated symptoms. I would def. get it checked out for peace of mind. Let us know how you get on and best wishes xx

  • Hi Lesley, I have PMF Intermediate 2. I have had bone pain for some years now. It's mostly in the hips and ribs/sternum area. This is where our bone marrow mostly sits. The pain can be so bad that lying down or sitting down for periods of time can be uncomfortable and can even interrupt sleep. I have had checks carried out for possible other causes such as arthritis or mineral deficiencies, but those were proved not to be the cause. The management of the pain is difficult. I have found that acupuncture can bring relief, a cushion under your bum (if that part of the hip is problematic), and of course pain killers if you are that way inclined. For you, the first thing would be to eliminate other potential causes because it is possible that the pain is caused by other factors (particularly in the early stages of the illness) which will be easier to address. Good luck and let us know how you get on. x

  • Hi Lesley, I have PV and bone pain but hard to tell what's causing it as my osteoarthritis seems to be in a race at the moment to get as far round my body as possible! So not sure if I can blame PV but good to get anything new checked out as the rest have said and get some decent painkillers too. I find if I let the pain escalate it is difficult to bring it back down to zero again! Best wishes Aime xx😺😺

  • I have bone pain in my left hip !! How wonderful to hear someone else has it. It actually effects my walking. I was diagnosed in Feb 2015, and was told to "relax" by my Macmillan Councilor. That if I wanted to lie down, do it, as I suffer huge fatigue and I had a VERY active life before. What my GP said was that my mussels (not seafood!) and ligaments had become weak and the weakness then made me walk in a different way which made the problem worst. I don`t know, as I try to be as active as I can .... just hoping one day it will stop. Was put on heavy duty pain killers, but they didn't touch the pain, and also made my mind go gaga, so stopped them. Hope this helps xx

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