Back and hip pain

Does anybody else suffer with back pain who has an MPN?  For weeks I have had excruating back and hip pain.  I have 120mg of morphine a day plus paracetamol and pregablin but all of that isn't touching the pain.  I am looking terribly pale but I am putting it all down to how miserable I am feeling.  I have been wondering if the scarring of the bone marrow that is associated with this disease could contribute to the pain?  Anybody with any advice?

19 Replies

  • I get a lot of arthritis pain in my joints which I think is made worse by the ET, none of the pain killers seem to touch it. I am currently waiting for an appointment with a doctor who does pain block injections into the nerves, it isn't until the end of June. I even said I would pay for a private appointment but the first available one was only a few days before the NHS one! So I hobble about like an old woman (yes I know I am one)  For the last few days I've had pain in my back too. I'm going swimming to see if that eases it, if I don't swim I seize up as I find it so painful to walk. I need 2 knee replacements but my haematologist doesn't want me to have an operation as my platelets aren't stable. So no advice from me just sympathy and sending you a virtual hug ❤️

    Best wishes 


  • Hi Jillydabrat So sorry to hear about your awful pain. I've had really bad bone pains at different times, mainly hip, shoulders, legs and ribs, everything except my spine really. All my joints as well. This often happens when I don't watch what I'm eating and jot doing enough walking and exercise. I'm on 16 Hydroxy tablets a week for my ET. I have tried many things but found that when I don't eat wheat, drink fizzy drinks, I don't get this as much. My theory is that we are all putting in lots of toxic stuff in our bodies through our medication, sometimes our bodies go into overload on what it can process. Bone marrow as you say has the MPN to combat as well. 

    I'm sure you've been to the GP about your pain. Have they checked out that you don't have a totally non MPN related problem, like a disc or something like that. I know I do it, but sometimes we think every ache and pain is down to our MPN when sometimes it isn't. 

    Nothing is more exhausting then pain, so it's no wonder you look pale.

    Hope you feel better soon. Big hugs xxxx

  • I too have hip and lower back pain and have had xrays for arthritis in hips and spine.  Only moderate wear which does not explain the level of pain.  I know that it would help if I lost weight but this is soooo hard when I don't feel like taking more than a little exercise to use up the calories I eat.  I try to keep the morphine down as I understand it is addictive but sometimes I just take the tablets to get some relief.  Never mind!  The sun is shining and I can still do my garden if I take it easy.


  • Poor you  no wonder you are pale .I have found a "PAIN GONE " pen really helpful . Worth looking up on google . I like the idea of less drugs .  

  • Sorry to hear you are in so much pain. How about contacting your specialist nurse to talk through a pain relief review. 

  • Hi Steve, I have phoned to bring my consultant appointment forward to Monday.  I am at docs this afternoon to see about a referral back to the pain clinic to review my pain relief.  Hopefully something can be found that helps.

  • Hi my wife is a retired RGN and has said nobody should be in pain. Doctors should increase levels accordingly

    Hope you get some satisfaction this afternoon if not give them hell.


  • Hi Jilly, don't put up with the pain, ask for different meds if you need them.  I have PV but osteoarthritis is making its way from thumbs to elbows, shoulders, back, hips, toes and now knees. There is nothing more exhausting than constant pain on top of another chronic condition we are all coping with.

    I have found that X-rays don't identify the severity of osteoarthritis. I was told my thumbs weren't bad, suffered pain on touching or picking up for years but the final year was horrendous to be told following my op that bone was scraping on bone!

    Do nag until you get something to relieve the pain especially at night otherwise your body gets more and more tense as you try and fight the pain and this in turn makes pain worse.

    Let us know how you get on. I send you lots of hugs which you need just now- they are all gentle ones!  Best wishes Aime xx😺

  • thanks for the lovely message Aime.  I called my consultants secretary today and she bought my next appointment forward from the 23rd to Monday.  I saw my GP today for a check on some new meds I had been prescribed and he has kindly agreed to refer me back to the pain clinic for a review of my pain meds.  Have been on morphine for years so I have obviously gotten used to it by now.  Your right about it being exhausting as you wake up often during the night in pain because of sleeping in one position to long.  You know you have to move your leg but dread the thought of the pain.  Hopefully either Haemo consulltant or pain consultant can do some good.

    Willl keep in touch xx

  • Hi I have every sympathy with you , I also have lots of joint pain , even my elbows are sore to touch , defos down to MPN I partly blame the HU & disease , I take codeine find that helps me , sorry not got any answers for you , But I'm sending you lots of warm wishes & hope your feeling a bit better very soon , 

    Take care Love Pam x

  • thanks Phelpsy, when I asked my GP to refer me back to the pain clinic for a pain med review he asked me where I was hurting.  When I said "where I have a joint, that is where I hurt" he looked at me like I was mad but it's true.  Everyone here knows about the all over joint pain.  I am at a loss whether it is the disease or the Hydroxy.  All I know is that the pain takes over everything.   Mum has osteoarthritis so I am wondering about that also.  Hopefully Monday will bring some answers xx

  • Goodness  is your GP Same as mine😜 I do hope you get some answers very soon , 

    I've told my GP Consultant & pretty much as you discribe 

    They look at you like yerrrrr

    Wish I could give then my aches for just a week see how they function going to work & all our dad to day stuff , 

    I take Codine it's a good pain relief for me X 

    Have a lovely weekend 

    Love Pam x

  • Hi Pam, hope you have a great weekend as well.  I can't take Codeine as it makes me sick.  i have taken an extra 60ml of morphine but I am still scared to move with the pain.  Roll on Monday to see what consultant says.  

  • Bless it's not nice being in so much pain , , 

    Have a few bevies X 

    Anything until you get seen xx

  • Hi Jilly, I totally sympathise with you, I had exactly the same and was taking 200mg of morphine daily and it still wasn't touching the pain, I spoke to my heam and I was prescribed Zometa which is given by infusion every 3 weeks, IT HAS CHANGED MY LIFE! I can't recommend it enough, it isn't 100% but it really does help and I now manage with co-codomal and NO morphine. I really hope you can get this prescribed, please let me know how you get on. Best Wishes xxxx (PS I have ET and am 43 Year Female, diagnosed for 6 years, taking Peg Interferon and Hydroxycarbamide and Clopidogrel) Hope that helps.

  • PS. Meant to add, I also suffer with severe bone pain in my arms and legs, especially the long bones xx

  • Hi, I'm very curious about your post. Currently, I am really struggling with leg pain. Its apparently nerve pain radiating from my two lumbar discs which may be herniated (had MRI last week). I am wondering where this has all come from. Despite having ET for 14 years, undergoing an emergency transplant, numerous biopsies and two bmb, I have to say this pain is excruciating. I am taking lyrica, as I can take few painkillers due to my liver transplant and associated immune-suppressants. Could this be related to my MPN? Please keep us all posted and wishing you all the very best. . .

    I am pale too, pain is very very wearing. . . :'(

  • PS It doesn't feel like nerve pain; I've wondered if it's bone pain but unsure what that's like!?

  • Hi Karol-Rua, when I saw my consultant she sent me straight down to x-ray and saw me again half an hour later. My x-rays showed a bad curvaturemof my upper spine and a large section was totally see through on the x-ray. She is now referring me on for a bone density scan to see if I have developed osteoporosis. Bearing in mind I had breast cancer and had to have all hormones that would not only affect my bones but also feed my cancer stopped so I was a sitting duck for brittle bones, probably why I have cracked my rib so easily. Consultant said that Hydroxy can cause osteoporosis as well. Seems no matter what this blooming disease will make your life as hard as it can. Ask your GP to review your pain meds or, even better, refer you to your local pain clinic who are a wealth of expertise. Good luck, Jill xx

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