MPN Voice
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Am I just getting old?

Hi my MPN family. I don't know if it's because I am 55 and getting older or my condition or the effects of my Hydroxy but I am getting terrible lower back pain to the point it's waking me constantly during the night and I have to Biofreeze on my back (it's a cooling ointment that's wonderful for joint pain but only available online). Does anyone else suffer back pain as part of their condition?

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Hi Jilly, not sure if related to the MPN, but I had similar and in the end went to an osteopath (who had many referrals from GPs, so knew he was o.k). Had a few sessions with him and really helped. But he said that he usually recommended having a spinal x-ray, if it was not immediately straightforward, as 'something else could be going on'. I have excruciating pain in hand, which wakes me and keeps me awake, and told that is related to ET, 'erythmyalgia' (not sure how to spell it), so just wonder if that could affect your back too? So hope you get relief soon, as you need your sleep. Best wishes, Tinkerbell13.


Thanks Tinks, think its a trip to the GP as it is affecting my sleep badly. Please try the Biofreeze I mentioned. I live in a sheltered housing scheme and I recommended it to so many people that they keep knocking on the door asking if I can order some more. It's from ebay xx

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Will try it! Many thanks and really, really hope your back gets better. Affects everything. Tinkerbell13


I buy Biofreeze from Boots - find it works wonders too.


Hi Chris, didn't know Boots stock it now, thanks for letting me know x


Hi Jilly, I too get lower back pain, even though I keep fit do exercises every day, I put mine down to having a total knee replacement and not walking correctly. but sometime the pain is so bad when out walking I have to find somewhere to sit down for a while, all really strange when I asked my GP they just say it is old age which is soooo annoying, as I do not feel my age even though I am 67 I love life to the full. I suppose it could be to do with the ET and the Hydroxycarbamide but no one will say.

Chin up Jilly, can you not get a bone density scan done to be on the safe side, and I know that we have to protect ourselves from the sun in summer, but I love my garden, and feel so much better in the summer when the sun gets into my bones, I do protect myself with an Australian sun screen, called Solar D, it is amazing protects your skin from the harmful rays but allows the suns rays to penetrate the bones with natural vitamin D, which my levels are a bit low in winter, as we have no warm sun this time of year, also eat a lot of fruit, veg and nuts steeped in vit d. Maybe one day it The sun screen will be allowed to be sold in the U.K. My friends send it to me it is only 10 dollars plus post and packaging although cheap it is amazing stuff, well the Australians are in the forefront of sun protection.

Now I come to think of it, my joint pains seem to start around the time I went into the menopause, and have just got steaderly worse over the years, but keeping fit seems to help, and a nice lavender bath at the end of the day is so soothing.

Just about to go into the garden as the sun is out hurrah and it is really mild for February.

Jean x


Also going to look into the biofreeze stuff as well.


Hi Jilly , well i have had a back condition since mylate 30s. and i have felt more pain and inflamation last 6months so im thinking could be a connection ! im having acupuncher on Nhs at mo for it in my neck shoulders and thoracic area .its very hard to know all these bodily changes for sure eh! hope your pain eases soonn regards Holly


Hi Jilly, I too have lower back pain, a strange type of pain that throbs and comes in waves accross the middle and radiates to both sides, I have wondered for a while if it was related to ET but who knows ?

Like you I very often cannot make my mind up if it is ET or age related, the good news is we are still here to ponder on this, I feared at diagnosis that I would not be. Thank goodness for sites like this one.

I hope you get some relief from this soon

The only thing that helps my hand pain and strange itchy feelings in my fingers is aspirin, you would need to talk to your consultant about that, I find that my GP is not always up to speed with our conditions therefore is not the best person to give advice.

I am 60 was diagnosed almost 9 years ago and have just started on Pegasys after taking Anagrelide for 8 years, my count was 1900 on diagnosis, Pegasys not working as yet but on a smaller dose of Anagrelide for the transition.

Take care x


Hi all, I also get very bad bone,joint pain,my Dr has given me Co-codamol 8 a day,but they don't work. Can anybody recommend anything better?


Hey Jilly... :)

I am MF these days and no longer taking HU, but I do still suffer from back pain in the middle area of my back that often wakes me at night. I am 57, and I am exercising again these days - mostly cycling and some aerobics... Hence, my lower back pain, I feel sure that my exercise regime might be contributing to, but I have had this 'middle of the back pain' for much longer and feel that it is a part of my MPN, in my view...

I have never heard of or tried - Biofreeze. But I shall be looking into it... I am in Sydney and we tend not to have all of your remedies just yet...

When my pain is too unbearable, I take a Lyrica and hope it helps a little, I think it does some times...? I just try to put up with it mostly...

Sorry Jilly, I don't think I have been very helpful...

Best wishes

Steve xo


I have found that one of the most confusing things about having E.T. (I was diagnosed 12 years ago) is that it is so difficult to decide if any ache or pain is related to E.T. or is part of getting older, wear and tear on the body or some other medical condition. Discussing things with your G.P. might help rule out other medical conditions but MPN symptoms are very varied and affect all of us differently.

Hope your back trouble is sorted out for you soon .

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