It's been a bad day for my bone pain and that is with my pain medication that was helping me so much just a couple months ago. I was supposed to work tonight and the team was really counting on me as we were working on a new project but I'm in so much pain I called out from work. The embarrassment and guilt from not going to work is gnawing away at me. I know in my heart it's not my fault but the guilt remains. It feels like I'm walking on broken bones.
Anyway, while I was laying here in my bed I was researching more into what causes the bone pain and I found this video of a doctor explaining why some of us MPN patients get bone pain. Thought some of you might be interested.
I've often wondered what the bone pain associated with mpns is supposed to feel like. I get tiny areas on various ribs that are tender when pressed, is this 'the bone pain'? I also feel sore on my pelvic bones 'is this the bone pain'? Recently I suffered a second spinal fracture and before it was confirmed, the symptoms I had were excruciating pain deep in my hips like when you've just had a bone marrow biopsy. I don't know if what I am feeling is the bone pain everyone talks about in relation to mpns. You describe yours as feeling like broken bones, is that all over or in particular places?
It's in particular places. My feet and my right hip. Sometimes my hands and legs. Never my arms. The hip pain is a deep pain as you described like you just had a BMB. I found a thread on here where people said they had rib pain like you do.
Bone marrow is produced in the ribs and your disease seems fairly active so it makes sense that you would feel it. If the rib pain is mostly on left side near bottom rib it could actually be your spleen.
For me the foot pain is the worst because I'm putting pressure on the already angry bones. But I know what you mean when it first started happening I kept wondering if it was bone pain or something else but when that hip pain started up recently I knew without a doubt it was bone pain. Sorry to hear about your second spinal fracture. Does your doctor think your fractures are related to your MPN?
I had wondered myself if there was a connection but my consultant once quite bluntly said 'your back is nothing to do with the blood 'when I was complaining about the pain after the first fracture. He's beginning to be a bit more approachable now that I've been seeing him for a couple of years. I do have an enlarged spleen and get a fair bit of discomfort in that area. It would be interesting to hear how others describe their experiences of bone pain.
I have sore ribs to. If I press on them, they feel tender but it is not bottom left. I do get worried with the deep aches I get in lower back, ribs, shoulders and sometimes deep in my butt cheek and hips. It really is hard to know what the pain is coming from. Is it another condition or current condition worsening or stress or something else. It just seems like a lot of guess work with no one ( heamo) having satisfactory information. My aches can keep me up at night.
Hi mel. I Was only wondering the other day where you had disappeared to. Sorry to hear your pain meds seem to have stopped working. I occassionly still get the gnawing pain deep in my left femur but fingers crossed🤞nothing like the pain I used to experience when my platelets were really high and blood really sticky. The pain was so bad,nothing worked,I spent a fortune on various 'pain rubs' and high dose pain killers all to no avail but i',m lucky in that I haven't had to experience that level of pain for quite a bit. I definitely think the bone pain is linked to the platelet activity in the bone marrow. I hope you get some respite soon and can return to work but don't feel guilty if you can't. Atb,tina.🤗
Hey you. I lurk in the shadows sometimes but I definitely haven't been on here like I used to be. I hope you are doing well. I have a doctors appt set up for 2 weeks from now. You know it's bad when I go to the doctor voluntarily. 😅 Pain rubs do nothing and over the counter medicine does nothing. They don't like to hand out pain medication over here very easily due to the drug abuse epidemic. It's good to see that your new doctor seems to have gotten things under control for you. 🤗
Sorry for late response, actually mel it can't be nothing the new doc doing,still on Hydrea at the same dose. The only thing different about him he as got a different demeanor about him, were as the old one used to stress me out big time! I've acually been feeling fine of late but going into the wrong weather for me,the dreaded winter. It exhausts me, I struggle to keep my eyes open by early evening and of cause the dreaded 'blue fingers' and in my case the excruciating pain in the tongue and lips,already started! 😢. Do you think your body as got to used to the Cymbalta? I hope not, you seemed so upbeat after finally getting some relief. As you say you've got to be desperate to go to the doc's!🤔 Atb,tina.🤗
Ugh the dreaded blue tongue. Yeah, your old doctor was a donkey. I hear you about struggling to keep your eyes open. I just go with the flow now. If my body wants a 4 hour nap then that is what I will give it. It feels like I'm wasting my life but there is no use fighting it as I am miserable to be around when I get over-tired. I wonder if drinking warm liquids would help the tongue situation? I might try that next time it happens.
Yeah, I think my body has become immune to the Cymbalta. Actually the Cymbalta is part of the reason why I stopped coming on here... because without the pain I almost forgot I had a MPN. 😖
The bone pain is by far the worst symptom for me. I shop online now because if I stand for the shortest time I am crippled with the pain in my spine and hips. It feels like a hot rod has been placed down my spine and I could cry out with the pain. It has got so bad that I invested in an electric wheelchair so that I could get out of the house. I have tried to explain it to my consultant but unless you feel the pain yourself you can’t understand it. My consultant did send me for a bone density scan and I was borderline osteoporosis and I was to have it done again in a couple of years time.
I find it incredibly scary that if I am like this at 58 then what will I be like in say 5 years?
Oh man. I work at Amazon for 30 hours a week and I am not allowed to sit down at all unless I'm on break. I literally work 4 floors and spend all night walking and auditing. I probably walk a marathon a week. That Cymbalta was working so well that it made my job manageable. If I can't get this pain under control I will have to look for a new job.
Your pain sounds worse than mine though. Mine feels more like I have the flu every day. I hope you can find something that works. I know what you mean about being scared. I'm 42 and I feel 90 and it's only going to get worse. 😩 I also shop online so I can rest as much as possible on my days off.
Thanks for the link , very interesting. I've had bone pain throughout my body from ankles to shoulder over the last 5 years, spent a fortune on physiotherapists, as our area waiting time for NHS can be 10 weeks, as advice from doctors was not to do with MPN (ET JAK2+)so tried to see what could be the problem. Needless to say still in pain and no further forward. I find it is worse when stressed but like others the pain can be unbearable sometimes . Not being able to stand or walk. The only thing that is good that it does go away after a while, but then brings confusion at to what brings this pain on as it can happen in a moment . Yes I get the sharp pains as if a knife has been stuck in that point , whether it be shoulder hip or ankle.
I'm off to a Forum in Aberdeen on Tuesday and if able will see if any of the panel can enlighten this point any further. Hope all are feeling better today.
That is a great idea. Please let us know what they say. The only place I get the stabbing pains is on the bottom of my feet. As if I'm walking on knives sometimes.
So sorry to hear what you are going through. I hope you find some relief soon.
In relation to the bone pain, I tried yoga at the beginning of the year to try to build up my strength but it was so painful, I had to stop. My friends thought I was “crazy” so I tried to work through it. Now I wonder if the pain was because of my mpn. I was diagnosed with post ET MF in September.
Your work sounds exhausting. I don’t know how you do it. I work from home but have reduced my hours considerably this last year due to worsening fatigue.
Hi Cindy. Yes, I often feel like people think I may be exaggerating when it comes to the pain...because, hey, I look fine on the outside. The only thing that keeps me going at work is I don't want to be homeless. I live by myself. Plus I only have to work 3 days a week. I can't imagine working 5 days a week again. Even at a desk job. People can't understand the pain because they've never experienced it.
I definitely believe it's likely your pain is due to your MF. Whenever you Google symptoms of MF bone pain is always listed. You may be experiencing the negative pressure the doctor in the video spoke about. I hope you find some relief from your pain as well. Take care.
Hi everyone. I was very interested in all your comments re bone pain. I have ET JAK2 and since the beginning of October I have had excruciating pain in my left hip,, pelvis and lower back. GP gave me co-codamol but they caused urin retention and I ended up in A&E. I had a CT scan with dye which came back negative so I was discharged back to my GP. Last Tuesday I saw my haematologist and I mentioned to her about the pain and asked whether it could be MPN related. Definitely not I will phone your GP to arrange an MRI scan. GP was very reluctant and said I was a mystery case. However after reading your comments I am wondering what good the scan will prove. I also have numbness down my left side which started a little while before the pain? I am on Hydroxycarbamide 500 mg a day. What do others take for the pain and has anyone had an MRI scan and if so what was the result? Heather
Hello Heather. I'm sorry to hear about your pain. I've never had a scan for the pain. It is possible your pain is not related to your MPN. But like the doctor said in the video the pain can be hard to pinpoint. After having this disease for such a long time I can tell you doctors are quick to dismiss symptoms as not MPN related even when they are. I took Cymbalta for the pain which worked marvelously for about 5 months but is now not working very well. I hope you find something that works for your pain.
Hello ...yes watched and learned so much I did not know ...Thankyou ..... Could you please describe this pain... I know it is not easy ...but I have my joints really hurting at present and was told this was separate to mpn .... many thanks ... Lainie
Hello. My name is Melanie too. It's very hard to describe the pain. I would never describe it as excruciating. But it does become severe enough that I have left work early many times because of it. Joint pain has been related to MPN's too.
Hi I have chronic myeloproliferative leukaemia which apparently is rare I’m under the care of professor Harrison at Guys. I also have leg pain but it’s down the side of my legs I thought it was cramp but not sure now it’s mainly in bed but other times as well. Anyone else suffer with this. Brenda
Morning .. As said would get back after forum in Aberdeen.. Don’t think we in uk are dealing with the bone pain at the moment. When asked the doctors didn’t seem to think it was related, though after asking those present who had bone pain (at least over half) they were willing to query maybe a connection. Thinking this will be another issue we all have to deal with.. Didn’t get opportunity to show research that you posted , but hope they get to see it and more studies can be done. As not able to take ibuprofen think I’m off to get co-codamol which was suggested by another member... Hope all well today ...
Wow...that's interesting that so many people in the audience felt the same symptom. Ibuprofen (800 mg) did absolutely nothing for my pain. I hope the co-codamol works for you. Thanks for asking!
How awful that you have to endure feelings of guilt when you are genuinely ill. I really feel for you. It’s not easy when your work is so physical. Maybe time to be looking for a change in employment!
I don’t have the bone pain (yet 🤔), but found that link very interesting. Correct me if I’m wrong, but I don’t think you’re on any drugs, other than aspirin for your ET. I can see why you would have made that choice, being young, CalR+ and low platelets. However, maybe it’s time to see an MPN Specialist. There is a reason why this bone pain is happening. I don’t know how health insurance works in the USA, but if it covers a consultation with an MPN Specialist, I’d advise you to arrange an appointment. It makes me realise how lucky we are in the UK with our wonderful NHS.
I do think you’re an unusual case. Most ET with CalR mutation present with higher platelet counts, and yours have always been quite low 500s. I know in your previous post you said they were in the normal range for the first time. I definitely think this needs further investigation. We have to be cautious of progression.
Hi Mary. You are correct in that my ET presents weirdly because CALR positive people usually have fairly high platelet counts. The possibility of progression has been going through my mind since my last platelet level was normal. I have a doctor appt Dec 4. I'm going to see how those results go and take it from there. I actually live within a couple miles of a few MPN specialists but I'm stuck in a weird position now. The MPN specialist I was trying to get an appt with requires 2 abnormal bloodworks in a 2 month period. And of course that got messed up when that second blood work came back absolutely normal. Argh...first time in 15 years. So now I have to wait for my platelets to be abnormal again or for my blood to shown signs of MF. Maybe I can get in to see a different specialist.
Yeah, I may need a different job. Especially since I could tell my boss was irritated when I returned to work. She is unfamiliar with my health situation and I doubt she would care too much anyway.
So many things to think about. I hope you are doing well. I'll let you know what happens. 🤗
I have an appt for bloodwork next week to see if my platelets continue trending downward. If they do I will certainly be making an appt with a hematologist ASAP.
I gotta be honest...I don't even bother taking it half the time after seeing articles that say CALR people probably don't need aspirin as much as JAK2 people.
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