Painful arms/ shoulder

[Camelian]

Does anyone suffer from arm pain? I've read about people having leg pain I had that for a while myself but now it's mainly in my shoulder and arm. I thought I may have a frozen shoulder but this evening I've got the same pain in my other arm. The pain comes and goes I can't work out if it musle or bone pain but when it's in full swing it's soooo painful.

[francesb]

I get unexplained pains in arms and legs, consultant said most likely due to proliferative bone marrow working overtime. I take paracetamol and ibuprofen. Good luck.

[jillydabrat]

Yes, I get terrible arm and shoulder pain. I thought it was because I crochet every day, all day. I can handle the tiredness and dizziness but the pain is bringing me down. I am on 3 different pain killers but they are not touching the pain.

[Patsyok in reply to jillydabrat]

Thank goodness I am a knitter and was blaming it for my shoulder and upper arm pain which is unbearable at times. Ive always knitted and not had this before. Ive had the shoulder pain and sore upper arm pain for some months and just been diagnosed with ET and about to start medication

I will now discuss this pain with my haematoligist and stop blaming the knitting

[jillydabrat in reply to Patsyok]

heaven forbid we put the wool away, right. I have to knit my way through a box room full of wool before I give in to it lol

[Patsyok in reply to jillydabrat]

Me too the stash never seems to go down !!

[nodmeister]

I had shoulder pàin right in the joints. It would often go from one side to the other. I knew we suffered with none pain so just told my consultant at next appointment. It stopped once I started Hydroxy.

[hunter5582]

Hard to say with limited info, but we also have other medical issues not related to the MPN. I have shoulder injuries that cause problems - not the PV. You can get MPN-related paresthesia in limbs, but does not sound like what you are talking about. If you are JAK2+ then maybe some related inflammation issues. For sure follow up with your docs - no reason to suffer needlessly. All the best.

[Camelian]

Thanks for your replies I'm seeing the hematologist on the 3/5/19 so I'll ask him.

Yes I'm ET jak2 + so could be inflammation ??

It's strange really at first I thought athritits or frozen shoulder ? I sleep with my arm under the pillow with my head on top of the pillow so i thought it might be that?? It's weirdly fine today but can come on suddenly.

I'm so sorry to hear your in so much pain jillydarbrat. As I said mine comes and goes so it's manageable. I hope you find some resolve? Maybe the lovely people on this site can help. Good luck.

[Tinkerbell13]

I get excruciating pain in middle finger, which travels up my (right) arm to beyond elbow. Keeps me awake and also wakes me up....comes and goes for no apparent reason, but pain killers don't touch it. Haematologists always sympathetic but never sure if it is erythmyalgia (sp?)or something else. Do feel for you. Hope one day we can find out cause and a cure. Best regards, Tinkerbell

[Anag]

Hi Chameleon, Whenever I sleep with my arm up under my pillow I have pain and numb arms for a while afterwards and weakness the whole day. Our circulation is made difficult. I find generally not feeling good makes many people stressed and that stiffens the shoulders. Using the other shoulder, when there’s pain may cause pain there. If we have inflammation in the body, we feel it in our weakest areas. For me it’s knees and loser back. When my thrombos go up they start to hurt. I then faithfully take a tad more aspirin, drink more water, take one tbsp high grade salmon oil am and one pm (reduces inflammation beautifully) and if pain is strong, I make golden milk from turmeric powder. Works wonders against almost all pain and inflammation. I try to avoid meds at all costs. Our liver is already dealing with HU and Co.

Info:

foolproofliving.com/turmeri...

I use a full tsp. I started with 1/2 to test.

[Camelian in reply to Anag]

Hi anag

Thanks for the advice I definitely need to do something the pain is getting worse. I've always slept with my atm under the pillow I don't think I could sleep any other way. It's strange but texting causes me awful pain in both my shoulder and arm it must be something to do with the muscle you use to text because I type on a computer at work 5 days a week and that doesn't hurt well not as much. Text is excruciating pain so I'll make this short.

Thank you

[Anag in reply to Camelian]

I had huge pain in my hands and fingers from texting and holding my phone. The EMFs/radiation are not to be underestimated. They travel in the body especially if you are charging your phone. Try turning your wifi off in the night especially when sleeping. I have a special EMF Protection patch on my phone and have it on airplane mode most of the day and during the night. It’s worth a try. Nothing to lose. Even though you don’t feel pain when at work, it may still be the computer. It’s just that you warm up and it hurts less, then after a rest, the shoulders are stiff and painful. ? No matter what, I really hope you solve this problem. It’s a nuisance and take quality out of your day. Wishing you success in dealing with it! Have a good weekend

[Hidden]

Yes yes l have the same thing, so painful and impacting my sleep and everyday life and as you describe it comes and goes How are you managing it and expectations friend. lm currently waiting to speak with consultant in 2 weeks.