Pain in hands

[DamnYouEt]

Does anyone with ET experience pain in hands specially on the finger joints and knee pain too?

[Swede]

Hi, yes, I do. I seems to move around between my joints as well. Knee for 4 months or so, then shoulder 3 months, etc...

[DamnYouEt in reply to Swede]

How do you control it

[charl17]

I am JAK2+ pmf taking Pegasys. I feel occasional pains like you describe. They seem to float around my body randomly. My fingers sudden feel hot to the touch, inflamed. Our diseases have weird symptoms. The drugs we take have weird side effects and some drugs take a while to work.

[DamnYouEt in reply to charl17]

How do you control it?

[SuET2017]

Yes I do (ET triple neg) It comes and goes, is manageable and I don’t take anything for it (I think I have a high pain threshold and I try not to take any more medication than I absolutely have to).

[katiewalsh]

I haven’t had them in my knees but used to have them in my hands & feet & mine too would move around. Sometimes I’d get bad pain where my hand held the steering wheel sometimes there wasn’t any contact yet I’d have pain. Weirdest part is I live half the year in WISCONSIN (northern US and half in Florida (southern US). I only get the pains during the months I’m in Florida. Fortunately, once my neurologist started me on CBD oil (decent quality) no THC, the pain disappeared in a month or two. I’m premf, HU, jak2 +. Hope you find a solution. Katie

[DamnYouEt in reply to katiewalsh]

What is a cbd oil

[MiltonBradley in reply to DamnYouEt]

It is cannabis (marijuana without the THC (drug)) oil.

[katiewalsh in reply to DamnYouEt]

Good description Milton. There is more bad CBD oil for sale than good CBD oil so don’t be fooled into buying bad stuff. It also isn’t like a pain med where you take it and an hour later you’re pain free. It must be taken daily. It’s also helped my anxiety a lot.

[Shellbi in reply to katiewalsh]

It’s that darn humidity! I lived in the Houston area for a while and felt horrible. Now live in Central Texas with much less humidity and feel a bit better.

[Wyebird]

Yes my knee caps hurt especially walking up and down stairs. I sometimes put ice packs on them and elevate. Not sure if it’s Et related

[JackLina]

Hydroxy took the use of my hands and more severely, my thumbs away. They were swollen, I couldn't grip, I had no strength and they were agonisingly painful when I began taking it, which I stopped after 3 weeks and 3 days.

I still have a problem with them but it has taken approximately 11 months for the problem to subside enough for me to do the simplest things, such as grip....anything.

Usual comments from the haema.......even though it states on the extensive leaflet (4 pages of A4) hand and joint problems can be a side effect. So I would say it is a side effect of the drug. Now o Pegasys and although I have numerous side effects, many becoming unmanageable at times, no thoughts of being debilitated as I was with hydroxy. ATB. x

[charl17]

You ask how I manage. For the most part they go away on their own and I just tolerate until they do. Sometimes on the highest doses of Pegasys and I am sleeping I wake up with multiple aches throughout my body. I take 200 mg of ibuprofen and it goes away quickly.

[MiltonBradley]

Hi,

I do have pains in joints but also have degenerative disc disease and arthritis in thumbs and foot besides ET. So, not sure whether the pains are due to those things or HU and Dr.’s don’t seem to care:/ An anti inflammatory diet helps; no gluten, sugar or dairy products helps tremendously. But, when so bad at night I get up and take a Tylenol and try to go back to sleep. Hope this helps

[Tinkerbell13]

Hello, yes, get excruciating pains in middle fingers - both hands - and on one hand, pain been gradually moving up whole arm....sometimes, so severe, keeps me awake for hours in the night and pain killers don't touch it. Not sure if it is the ET (or possible rheumatoid arthritis, thoughnot been diagnosed with that....yet!). Had 'blood flow' check at hospital, re finger and arm, which did not show anything significant, but the pain is very severe sometimes and at times, can't even really use my hand (e.g. to cut up an apple), when it is bad and not easy to drive, either). Keep hoping someone somewhere will know the cause. Over 5 years, since diagnosed with ET, problem has got steadily worse. Haematologists aware, sympathetic, but puzzled. Best regards, Tinkerbell.

[Lab-Rat in reply to Tinkerbell13]

Have you been evaluated for carpal tunnel syndrome? Wearing wrist braces, especially during the night, may help with the pain.

[Tinkerbell13 in reply to Lab-Rat]

Yes, hospital says not carpal tunnel....all v odd, but all v painful!! Thanks for kind reply, though. Best regards, Tinkerbell

[teenia in reply to Tinkerbell13]

Have had et10 yrs and hand pain as long.on hydrox,been for 10 yrs .sometimes pain so bad but just sucking it up.tryed gabapentin for a few yr not good got of same pain with med or not. Painat its worse nights.

[Tinkerbell13 in reply to teenia]

Really sympathise and sounds v similar....I just suck fingers and hand, when it gets so agonising. Daughter thinks could be worse after having citrus or tomatoes....do check that out for yourself. Many thanks for reply and do wish you well and please keep in touch on this excellent Forum. Tinkerbell.

[Hidden in reply to teenia]

Hi teenia how old were you when diagnosed You been on hydroxy for 10 yrs has it kept your platelets down What dose do u take ? Amazing you in to 10 years

[hunter5582]

I am JAK2+PV. Also have osteoarthritis that causes pain in hands and many other joints. There is a possible link in the the JAK2 signaling system cam also increase peoduction of inflammatory cytokines - triggering a number of the inflammation related secondary conditions experienced with MPNs. The thing that helped me the most was a Turmeric-curcumin suppliment. Did a better job than prescription NSAIDs. Have not needed any NSAIDs since getting on the Turmeric-curcumin. Hope you find something that works.

[Kelly2]

Yes my finger joints. It started very recently.

[MoNut]

Funny you should say that, but after having ET for over 28 years, my fingers are really painful.

[Hidden in reply to MoNut]

ET for 28 years amazing I have had it for 8 yrs and expectin to not be here with this in next couple years Thanks for the uplifting thoughts

[Helena303]

Yes I have arthritis in my main index fingers. I get cramp my hands cramp in winter especially. My veins pop up when it hot and tingle. Sure it’s to do with blood vessels as when it’s hot my feet cramp and bottom of legs. Worst before I was diagnosed Et when my iron was low. Seems better now as my irons on good level. But hoping it’s improved a lot since being on Hydroxy not had cramps for over 6 months now.

[lavender007]

Hi there

recently all of my joints have been causing so much pain.I did have bone pain which was extremely painful. Saw a hospice Dr and been on very strong and varied drugs since ET confirmed 2009.My meds include morphine and others my levels felt off the scale.

good luck

[Borage]

I am in my 60’s and have ET, I am on Hydroxy and aspirin.

I had tests a few months ago to rule out inflammatory and auto-immune joint diseases.

My toes ache, and my fingers ache and the joints are getting stiff, I need to ‘unlock’ my middle finger joints at times. I have pulled hot drinks and a kettle over when my fingers didn’t let go of the handle quickly enough.

I feel worse when I have had sugary food, and much less achy and stiff on low carbs. I take turmeric powder with my kefir in the morning and that seems to help.

Just for variety, my hips ache at night! I find that a hot water bottle helps.

I am avoiding pain killers- I want my liver to last, and my pain threshold has improved.

[CalrType1]

Yes. Past 5 years. Slowly gets worse every day. Morning stiffness terrible too. Stiffness does not ever go away. Diagnosed ET 1 year ago. Take Tramadol to deal with pain. Hydrea has had no impact on hands.