MPN Voice
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Bone pain

Hi does anyone who experience bone pain get pain in the pelvic bone area. I have only recently started with this and almost always the pain is in my arms. Today I have been getting pain in my pelvic bone

Janet x

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Hi Janet.

I have pains which travel about, mainly in the lower arms/hands, legs and back. It is incredibly frustrating. I have had lower back pain for years which could or couldn’t be down to ET as I have prolapsed a disc on more than one occasion in the past. I now have quite severe pelvic pain which could be related but I suspect it’s just my aging skeleton and a particularly feisty horse, who feels it’s better to leap about and buck rather than act her age (20)! And they say take gentle exercise!!! I think you’ll find many people on here who suffer bone pain and I suspect it can occur in most areas on and off.

I find a warm bath with two cups of Epsom salts in the water does wonders for the pain. I also add essential oils to the water and soak for a good half an hour - longer if I snooze off which is normally the case!

I hope you get to the bottom of it (no pun intended!) and get some relief. If the pain persists I suggest you talk to your GP just in case it is not MPN related.

All the best

Gill xx

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Hi Gill I think that is what I suspected. I am wondering if it is linked to a urine infection. I seem to get lots of them.

I have to say that this bone pain is quite painful and I hope it doesn’t get any worse than this.

Your feisty horse sounds adorable and a great character

Janet x

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Hi Janet

The link to urine infection sounds quite probable - my sister in law gets them a lot and has mentioned pain in the pelvic area.

Summer (horse) is definately a character. She’s an ex racehorse and forgets her last race was over 15 years ago. She was also abused when she came out of racing and when I got her 8 years ago she was quite frightened and skittish. Since then our bond has grown and grown and she is now a different horse - until she sees a jump or a big stubble field! She keeps me sane and has really helped with my mindset - no matter how I am feeling I have to put her first and an hour with her every day is the best therapy you can get, come rain or shine. Her companion is my elderly sheep, Glossy, who is also a character - I got her as a week old orphan 13 years ago and she is the last of 7 we had as pets. Glossy and Summer now spend their days together, never more than a few yards apart, so sweet!

I hope you resolve your pelvic pain and keep well.

Gill xx

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Thank you Gill I love that animals are fantastic therapists. Having such a bond can help you through a lot.

I have 4 cats who each have their own characters, one is my cuddle buddy and just knows when I need extra ones. He is a big fat ginger and is 10 now. Then the youngest is 2 and he suckles on whatever clothing I’m wearing but that is because I hand reared him and his 3 brothers since they were 2 days old, the others were adopted.

My dream was to have a small holding with a donkey, lamb and goat in residence. Well I’ve reached 67 so I don’t suppose that will happen now. I’ll make do with feeding the squirrels and birds though that’s hard with all the cats around but I’ve managed so far 😁

I will see how my pain goes but I hate going to our GP surgery so I tend to put it off as long as I can.

Janet xx

P.S pictures of your sheep and horse would be great.

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Hi Janet,

I've just seen your post ( I don't get on here much due to terrible internet connection), it caught my attention as I have PV been diagnosed for just over a year, but one of the symptoms I went to the Drs with originally apart from fatigue, was bone pain!

I've seen 2 different haematologists in that time, one saying that the bone pain was most likely due to the MPN the other saying probably not!

The pain is quite bad at the moment, feels like there's a metal corkscrew in my bone marrow, it's worse in my arms, and worse at night for some reason.

I'm not sure if the hip area pain is mpn or not, but I get that too, but like Gill I too have a shall we say 'spirited' horse 😁

I haven't got any answers or help for you unfortunately, but just thought it might help you to know, and also to log somewhere that others have these symptoms too.

Hope you get some answers, let us know if you do, and hopefully relief too.

Best wishes

Jacqui 🤗 X

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Thank you Jaqx17 I welcome anyone’s story on the subject of MPNs I think it’s the only place we can get together and discuss our symptoms. I really enjoy going to forums and having face to face chats. I only wish there was someone who lived close enough to have coffee days with. I will certainly keep you posted after I’ve seen my Haematologist next month.

Janet x

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Ask maz for a buddy.

Obtain a salt lamp for some mindfulness mediation , it also helps with mood swings too

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I have Himalayan salt lamps all over the house Roger 41. Not just for their qualities but because they are lovely to look at.

Janet x

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Hi, have you had your Vit D tested.

vitamind3world.com/vitamin_...

Peter

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No I hadn’t thought of that. I will certainly ask about that

Janet x

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