Shoulder pain

[Chelle_]

Guys has anyone experienced shooting pains in shoulder? I was woken up with it this morning and it's happened a few times throughout the day. Had first does of inter-a on Tuesday.....have PV.

[Chelle_]

I have pain all up my neck now. I know it's just probably side effects of the inter-a just want to know if anyone else has experienced the same x

[light]

Hi, I am patient with ET for 2 years and seven months now, and have been having joint, bone, muscles, etc........, pain. This started six months after I was put on Hydroxicarbomide, high dose. My right hip joint got so bad that I am now using crutch to help mi walk. Recently my right shoulder is in pain and got some exercise from my GP to see if this is going to help before we consider other treatments. Over the time I have learnt that all these pains are part of MPN and side effects of the treatments. I help myself with different supplements and drink three liter a day water. Hope this helps you.

Wishing you well.

[Chelle_]

Hi Light, thank you for that. I have PV (diagnosed a month ago) and diagnosed for 2.5 months (with mpn) I have only been on inter-a for a week or so. I'm

Worried to move when I wake up because I'll find another ache...lol.

Wishing you well.

Chelle

[jogging1]

Hi, I also have PV and am on interferon. I haven't experienced any shoulder pains but occasionally I have pains in my legs. How much interferon are you on per week?x

[Aime]

Hi, I also have Pv and osteoarthritis - sometimes i don't know which one to blame for aches!! Every sympathy.

regards Aime x

[Chelle_]

Hi I'm on just the one injection every two weeks so a real small does, 45mg I think. So it could just be the PV having a bit of a moment....heads banging constantly too

[Inca]

Me too,all kinds of pains neck to legs etc.Been fit all my life,breeding horses riding,P v was a life changing shock! Find I must exercise tho not get too tired ,walking my GSD dogs ,working (I am sculptor )but again limited to my onset of weariness,which is such a rotten ,stress making thing we MPD's must endure.I' m on Hydroxy & meds for a stent as a result of damaged artery due to PV.Good to know others have similar side effects,it's a "lonely"disease,and we don't look I'll! Best of Luck to you all

[linds in reply to Inca]

Oh Inca you are so right about it being a 'lonely' disease and not looking ill. I am on a good spell at the moment but this has caused my haem to question why and waiting for a bone marrow biopsy. My feeling is, don't much care just love not feeling so TIRED all the time. Best wishes to everyone.

[Swede]

Hi,

My E.T started with hip pain I think. Was sent to a physiotherapist that made it all worse...I have now got some very very horrible pain in the back of my neck and down to my shoulders. I have tried the Henrikson massage 6 times now but no difference what so ever.It comes and goes . One minute it hurts so I go mad and scream, next minute it is nearly gone but I am then stuck with a headache.

It is really painful at times, so painful that I scream. Pain in the neck one can say...

[Titatagg]

My PV was discovered due to joint pain . My joint pain ( right shoulder and spine is worse but every joint hurts at some time or other ) is the worse symptom I have , more so than fatigue as I find I can work through this. But the pain stops me sleeping and prevents me living the lively life I would like. There is no explanation for it as I have been to every specialist imaginable so the only explanation is that the PV is to blame. I am now on interferon but I was on hydrox. And the joint pain has never disappeared . It has got a lot worse over the 2 years since my diagnosis. I would like to know how you all deal with the pain. Has any one tried acupuncture. I have poor liver function so I prefer to take pain killers as little as possible. If any thing helps please let me know. Thanks for posting .

[LouisePRV Volunteer]

Hi

Someone recommended hemp oil for another query re tailbone pain.

Worth trying.

Have a look at goodwebsite.co.uk

Keep a look out for rubbish quality stuff sold on amazon etc.

x

[Superwoman]

Hi Everyone, god now I do not feel so alone, just been reading everyone's comments about joint pain. I was told I had ET last July after having a Jak 2 test and a FBC was put on Hydroxy and was already taking Asprin, I had been doing OK until April, when I had to attend hospital to see about having a new knee, Yuk, anyway had such a long wait as my notes had been lost in transit, so sat there for over three hours until they found them, ended up getting rather a nasty chest infection which I have been told I must of picked up while I was there, as the hospital was crammed full of people coughing and spluttering which was not nice!!! anyway have since been on Antibiotics for two weeks which helped but what I have noticed in the last month is that I started to get such bad pain in my lower back and right hip which goes down into the groin area and leg, and will just not go away, finding it hard to stand for any length of time and if I sit down I seem to stiffen up from my waist down. This has really pulled me down as I was such an active person always on the go and enjoyed life to the full, having a new knee is bad enough but the pain in my back is awful no let up with the pain, Have blood tests due next week so am going to ask could it be the Hydoxy or the ET not that I expect to get a decent answer. Anyway I will not ramble on anymore just good to know that I am not alone in my pain. Thank you all for just being there.