Bone pain

[Tipsy2023]

morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else

[Cat1001954]

Yes I get it too in legs and from elbow to wrist more so at night

[Spanelmad]

Right down the shin bones .It's been dismissed by the Rheumatologist for years now know its own to Et.At times so bad want to.cut a leg off.

[SuET2017]

Yes, mine is mostly in the shin bone, but can get in other random bones at times. I don’t get it all the time, it comes and goes.

[Ratton in reply to SuET2017]

I also have pain in shin bones ? arthritis in my toes- (I don't know if its ET or not)?

Pain goes backward up leg ??? also finger joints are painful but think its arthritis ?

Had X-rays in hands showing arthritis-but don't think its all down to that-think ET is part of it.

[SuET2017 in reply to Ratton]

I also get in my fingers. That’s the next most prolific area after shins. I don’t have arthritis, I did have tests for that.

[Trocken]

yes, from time to time, when it occurs its pretty intense, mainly in my left upper arm and shin bones

[J-fd]

Yes I suffer with bone pain legs mainly

[Lifam]

I have lots of bone pain, my arms, especially on both shoulder bones, mostly is on both shoulder, that started not long after been diagnosed with ET 4 years ago, although I have bad arthritis, my physio said arthritis not normally on shoulder bone. So I guess it must be my ET conditions.

[Hannah2308]

I get bone pain especially in my legs, and during the night. I also get it in fingers. I put Ibuprofen on legs before going to bed, this helps but not all the time.

[Foodies]

Good morning, I had severe bone pain and my haematologist prescribed Allopurinol which I take every evening. It has really helped. Hope you get some help.

[ciye]

Constantly, not always the same area....

[Pinktulips]

I too have a lot of bone pains on my shins, thighs and is worst at my pelvic bones.

I noticed that now that we have spaced out my Pegasys injections and lowered the dose, the bone pains are a bit better.

[Conneryfan]

Yes, in lower legs, feet, hands and random other areas. Worse at night.

[Kiwijazz]

I get it in hip bones and left shoulder. It's hard to know what is causing it as x-rays show mild arthritis in those places. What is bone pain from ET or other conditions? How do we know? Doctors don't seem to know much.

[Tipsy2023]

Thank you for all replies , allopurinol was given when I first started on Hydroxycarbamide it stopped the chilblain type foot pain redness etc but was stopped after a month that being the protocol . Though I have had arthritis of an inflammatory nature for many years I am inclined to think it is part of the ET as pain moves about .Do any of you experience dark staining of the skin on lower legs ? It is less if I drink lots of water .. sometimes accompanied by stinging sensation.. I ask as I believe this is all part of the condition but dismissed by haematologist.

it seems this is the experience of so many of you . Many Thanks again

[Spanelmad]

I have seronegative rheumatoid arthritis and ET jak2 and I can tell the difference between bone pain and joint pain .The former is much more intense and doesn't really respond to normal pain killers.I normally use cold packs on the shins.With regard to hip pain over the years I've had scans and xrays which have found nothing dispute being in pain.

So? Is it ET and is it progressing?

[Tipsy2023 in reply to Spanelmad]

It is so complicated isn’t it I use a Tens machine just cheap but really helps .

Since diagnosis I can’t take the anti inflammatory medication I had used for last 30 years .. but you are spot on with difference with joint pain and bone pain . Also have had positive blood test for Sjögren’s syndrome for 13 years but until 2021 the consultants refused to accept I had it . Then finally the last consultation total acceptance and started on Hydroxychloroqine which has helped with some symptoms… aren’t we complicated ..

I thought of myself as pretty fit inspite of all this , cycling swimming walking but the fatigue now with latest diagnosis doesn’t let me do much … just frustrating . I have had crisis moments with maximum dose steroid injections … into spine and joints don’t tolerate opiates but interestingly I want the route cause and mostly it feels my doctors just don’t .. feeling a bit confined and grumpy after lovely walk Saturday has left me tired out .

[Spanelmad in reply to Tipsy2023]

Yes your right I take hydroxychloroqine and methotrexate for the arthritis and and Carleton which help with the general pain.Have been out this morning with a friend and 6 dogs for morning walk in the woods.Now I'm flat out on the sofa and just woke up dribbling!

[EPguy in reply to Tipsy2023]

Just saw this older post. Your experience of Dr resisting Dx of Sjogren's is way too familiar, and with SSa + and symptoms your Dx should have been instant. I got Sjo triggered by a vaccine while on Besremi. You can see my ordeal in the past year's posts. My Sjo was/is very aggressive and my Dx was fast and easy. A good Rheum helps. Men tend to get a worse one (Sjo is 9/10 female) but Sjo is no good for anybody. I'm intolerant to all the normal Sjo meds. But I am feeling some relief so far with TCM (Chinese medicine) It's acupuncture and esp, a custom herbal blend. But it requires a top TCM Dr to be useful.

Sjo is not just a minor dry mouth/eye disease as you no doubt know. Good odds your severe fatigue is more the Sjo than the ET, I know this well.

If you want an active Sjo forum you might try the one on SmartPatients. I prefer Healthunlocked format and ease of use but the Sjo action is there. I post as SjoGuy.

There is a line up of good meds in phase 2 and 3 for Sjo after years of neglect, so there should be effective treatments coming as we already have for MPN.

Some Sjo pts get relief from low dose naltrexone (LDN) I'm totally intolerant.

If you at some point consider IFN, I suggest do so with great caution. Your immune system is already lit up and IFN can feed the fire. (my experience and also on the IFN label) Doesn't mean it's not an option.

[AndyKay]

Yes, in my hands and ankles.

[Cambria61]

Yes, I also have bone pain in pelvis, left clavicle, left ribs, and long bones in legs. I see pain management and take a low dose opioid. I also suggest chair yoga, and low impact exercise, as this helps me. I am 62 and have scoliosis and bone on bone SI joint on the right. Take care.

[Spanelmad]

Keep moving

[Spanelmad]

I wonder if the pain comes from the site of extra platelet production in the bone marrow and sometimes it's different bones?

[Tipsy2023 in reply to Spanelmad]

Morning I often think the same as it feels like it moves around quite acutely sometimes but this sounds so fanciful but just how it feels . I am convinced it’s right may have to ask someone who might know L

[Lena70]

Yes. This happens to me from time to time. Was one of my first symptoms. I even had X-Rays and a full Rheumatological screen twice. It was the Rheumatologist who referred me to Hematology as the peripheral blood smear was abnormal.

The pain is mainly in my thigh bones and hips.

[Spanelmad in reply to Lena70]

Rheumatologist was also the one who referred m e

[gilded]

Hello! I have ET ( diagnosed about 18 months ago). I suffered from bone pain in my back and legs. Thought it was the ageing process. Bone pain abated and eventually disappeared after I started Pegasys interferon.

[Bainbridge]

my husband has high risk MF 74yrs and taking the new drug Ojjaara and recently started having bone pain in chest area. It sounds like it’s the disease but not sure if MF patients have experienced this as well