Bone pain, is it normal for us?

[Val_P]

I've was diagnosed with ET jak2 neg in 2008. Recently I have started to get a deep ache/pain in my right leg, it doesn't feel muscular, but more like bone pain. It is from the hip to the knee bone. It doesn't feel like joint pain. It's constantly there, sitting, laying and walking. I haven't been to my GP yet. As usual my mind is being overactive and I'm thinking "is it my bone marrow", shall I wait until my next haematology appointment ? Has anyone else experienced this?

[Mazcd Partner MPNVoice]

Hi Val_P, sorry to hear that you are getting this awful bone pain, you will find that a lot of people on here do have the same thing, I get it myself, I also have ET, so know exactly what you are describing. In our ET booklet we have the results of a study that asked 709 patients with ET or PV about their most significant symptoms and bone pain was reported by 42%.

You should tell your haematologist at your next visit about the pain, also you might ask if they can suggest any pain relief or maybe even a referral to the pain clinic.

Best wishes, Maz

[Val_P in reply to Mazcd]

Thank you Maz, thats really helpful. It's good to know that I'm not on my own. 😉

[YogaLover]

Hello, when I read your post to my husband he said that I could have written it! I too have bone pain and have often wondered if it's real or imaginary so unless we are imagining the same thing which would be rather spooky then it has to be real. I did mention it to the specialist nurse when I attended clinic this morning and didn't really get any constructive response. Is it a symptom or side effect of hydroxy?

Generally the pain is bearable and I find that being active can help though not always.

Hopefully you will get a positive response at your next visit.

Best wishes xx

[Val_P]

Even though I'm sorry that you and Maz are experiencing the same pain, in a weird way I'm glad that you do, as I don't feel quite so alone with it. I'll let you know how I get on after my next appointment.

[Nickthedevil]

I also get bone pain and the worst of it is also in my right leg but worse in the lower leg than the upper. My haematologist is sceptical that either ET or Hydroxy is the cause and has referred me to a haematologist but I am still waiting for an appointment. However, my GP told me some time ago that it is definately caused by changes in the bone marrow.

[Phelpsy]

Hi Val , you described just how my legs been over the last few month , I visited my GP he said I was over weight

( I'm a size 14 ) pain inside the hip going down my leg but feels like a deep pain in the bone , he said to me go & get 2 Stone off , I'm now 1 stone lighter & Guess what it's still there ,

SO JUST SHOWS WHAT HE KNOWS ,,,

In going to mention it to my consultant in a few weeks ,

Thanks to people like Maz our questions

& mind are put to ease , xx

And my thumbs a bad also had X rays but nothing showed up ,

But I know my own body , 🎓

Take care Hope you soon get Answers to,

From PAM ( Newcastle upon Tyne ) XX

Take care x

[RazB in reply to Phelpsy]

Hi Pam, congrats on your weight loss- can I ask how you lost your stone? I’ve been told exactly the same (i’m size 12/14) and as a menopausal woman who likes a glass of wine or two am really struggling to shift any weight! I don’t eat sweet things, pastries, pasta or much bread. Admittedly I’ve had 10 months off exercise due to illness and a fractured coccyx but today am re entering the gym with a certain amount of trepidation! Hope you don’t mind me side-stepping the original convo on bone pain, and please private message me. Thanks x

[Hidden]

Hi Val yep horrible bone pain. As everyone has said can be in any bone, but for me the lower leg pain is the worst. I got to the point that I couldn't sleep with it had tried the usual Panadol, nothing really helped. A nutritionist friend of mine did mention that sometimes because of a build up of toxins our bodies can react like this. If you think how much toxin our bodies have to process, with Hydroxy etc!!! So she suggested a few things, firstly give up diet fizzy drinks, I was drinking 2 cans of diet coke a day. She also said that some people have slight food intolerances, so to do an elimination diet for 4 weeks, then gradually bring back each food type. So for 4 weeks I didn't have Alcohol, Caffeine, Wheat or Dairy!!! It was really tough.... But after a week the bone pain stopped, I could sleep again!!!! I was doing really well and then at the beginning of week4 we had some friends come to stay. Cheese has always been my downfall and I had the smallest slither of blue cheese!!! Within a few hours my bone pain was back and the next morning I looked so bad that I had to admit to sneaking a bit of cheese!!! So with months of trial and error I find that my pain triggers are wheat and dairy. I don't totally cut them out, but really limit them. This has worked for me but I know we are all different. I still sometimes get the bone pain, but no where near as much. Hope you keep well and pain free. Big hugs xxx

[meanJ]

Hi Val, I have PV and have suffered from bone pain for 4 years. My MPN specialist told me to take Zyrtec or Claritin I thought they wanted me to take it for Pruritus however one of my hems told me to take it for bone pain. I had better results with Zyrtec. I can't believe the results. I still have joint pain but my long bone pain has greatly reduced. Here in the States they are over the counter antihistamines. I was at a Advocacy meeting at one of the local universities and there was patients that had other types of cancers and they too experienced long bone pain and they too were advised to take Zyrtec. I would ask your physician to try it and can get some relief .

[cata]

i'm diagnosed with PV in 2008 in May i fell some disease on my right groin . After long investigation discovered myself in internet the symthoms are for coxarthrose. Rx confirmed diagnose found by me. I hope you are more fortunate.Best regards

[Hildrethbird]

Oh so nice to hear someone else is questioning this !! I get the same pain, have done now for 3 months. I am Jack2 N with MF, but in the really early stages. It has been worrying me, but haven't been to the doctor yet. It is all the time, and sometimes limp down the street !! Same pain .... tell me how you get on xx

[Polly-PV]

Oh Val, I do empathise with you....& everyone else who gets this blessed bone ache! I'm presently lying in bed typing this & the pain in my right foot, ankle, calf & knee is driving me banonkers (similar to bonkers but a little more severe). Peculiar most seem to get this in their right leg & not the left. I, for one, am going to try the cherry juice thing (thanks for that one) plus the elimination diet with the antihistamine as a fall back....see how informative this site is?!! Love to all, stay strong, Poll x

[Val_P]

What an amazing support network we all have here. I really don't know what I'd do without you guys.

[Phelpsy]

Val we are in this together , this forum has given me so much , I just couldn't of gotten through the last 2 years without all the support from everyone x

Take care x

Love from Pam x

[Hidden]

I really appreciate this site as a resource! I'm JAK neg. with ET and have been having pretty significant pain in my right hip that radiates down my leg for the last few weeks. It's stopped me from exercising and sent me to the emergency room Sunday, because I freaked out and thought I might have a clot. It's so helpful to see others who are going through this stuff and understand. Thank you all for your willingness to share here.

[lavender007]

Hello Val,

Very early on in my diagnosis of ET Jak2 pos, I experience this excruciating bone pain in all my bones I have taken a very strong cocktail of meds since 2009.

My needs were assessed at a hospice their input was invaluable.

I take 18 meds in the morning my pain control is very well managed at this time, I find the quantity astounding and some Drs dont like the number so I have to self advocate if meeting New Drs.

I wish you the very best try to get specialists input.

Lav007

[RazB]

Bone pain? Yes! I’ve just read all of the above answers which are so helpful to us all. This is definitely the place to come with any issues/queries, such a helpful community. Hope it’s been helpful and supportive for you too. X