How do you handle the pain associated with PV?

[jillydabrat]

I have PV Jac2+. I suffered with painful joints for years before I was diagnosed but at 56 I feel 80. Despite powerful pain medication the pain gets so bad I could cry. My knees, my back, my shoulders, everywhere just hurts. My Haematologist sent me for x-rays of my spine to try and find out what’s wrong and I am seeing her soon. Does anybody else suffer like this? I am pretty miserable because I can’t get on top of the pain.

[Inca]

Me too Jilly,at the mo I have sciatica pain too,feel a hundred years old.

I keep walking just 20 mins to 30 mins ,come back as if a double decker bus has run over me.We cannot use Meds for inflammatory conditions,so has to be paracetamol,hot ,cold pads ,just gone on to Rux ,H u stopped working for me.....all depressing which of course makes us worse.

Keep going,perhaps the promised warm weather coming will ease the pain. Best wishes ,Sally

[Aime]

Hi Jilly, e hugs to you and loads of them. It is so horrid and exhausting being in so much pain. It’s very important to get into a regime of taking pain meds on a regular basis and finding the right one for you. I have constant pain, with mainly arthritic causes, so I take paracetamol (and Tramadol if I’m not driving) through the day and more Tramadol at tea time, paracetamol at bedtime. This seems to be the best way to work my pain and I hope it helps you.

I also go to the hydrotherapy pool to 2 Pilates classes per week, run by a physio. My itchy skin hates the heat but I have to tolerate it for my joints. The heat of the water allows my muscles to relax (I’m constantly tensed up when I’m in pain) and this helps greatly. I can also do exercises to stretch and mobilise my joints which would not be possible or be extremely painful on land. It really is a godsend for me.

Sending more E hugs and flowers 💐, hope the info helps. Kindest regards Aime xx😺😺

[Helena303]

Feel for you all. I’ve arthritis and osteoarthritis so Et does effect my joints as well. I can’t take inflammatory Naproxen any more due to Et and it may cause bleeding in my stomach. So suffer the pain with Co-codamol. But hate keep taking them. I have migraine so am on Propranolol. But my headaches back as my platelets went up last appointment. So just try hard go walks. Want to start swimming again but trying to keep motivated. Before I had this Et I was not so achey. But this illness seems to push you down what with the fatigue and side effects of Hydroxy. All pushes me down.

[hunter5582]

Also have osteoarthritis on top of PV. What works for me is a Turmeric-Curcumin blend. Has done way more good than any NSAID ever did. No side effects as well. Need to use a higher bioavailable compou d for it to work. Sticking to an anti-inflammatory diet and weight loss (65 lbs) have also helped. All the best to you.

[jillydabrat in reply to hunter5582]

Hi hunter, I have bought some 1000mg double strength turmeric, a day. how many should I take a day? Willing to try anything for the pain.

[piggie50 in reply to jillydabrat]

Hi Jilly,

Butting in to your thread, but my capsules are 600mg and I take 2 every morning, total 1200mg. Per day. The jar says take between 2 and 6. Mine also have pipeline (black pepper) added which I understand aids absorption. My heam knows I take them and isn’t concerned. I also have RA as well as PV.

I really want to get onto an anti inflammatory diet but just don’t have the will power at the moment.

I hope you get some relief soon

Judy

[jillydabrat in reply to piggie50]

Thanks Judy, yep mine have black pepper also. Thanks for the advice, I think I will give one twice a day a go. If I don’t try I will never know and I have heard so much about this stuff.

[hunter5582 in reply to jillydabrat]

It depends on the formulation. The typical is 1500MG-day. However it could change based on the specific formulation. Ot also matters what the bioavailability of the formulation is. Turmeric does not pass readily into the bloodstream without help. Check with manufacturor reccs for what you bought.

[fee13]

I generally get sore muscles & joints/spine but when I became intolerant of hydroxyurea I was similar to how you feel now, I could hardly walk & in severe pain constantly.

[jillydabrat in reply to fee13]

That’s how I feel. My 95 year old mum broke her hip last month and underwent major surgery so I go visit her everyday. Just the effort of driving there and visiting means I come home to such pain everywhere. It worries me that I am only 57 so what am I going to be like later in life?

[Mazcd Partner MPNVoice]

Hi Jilly, sorry to hear you are in so much pain and discomfort, I am not surprised you are miserable. I know you are waiting for the x-ray results, but it might be worth asking for a referral to a pain management clinic, they might be able to help you. Take care Maz x

[jillydabrat in reply to Mazcd]

Hi Maz, I already see the pain management clinic every 6 months but to be honest they are hopeless, even writing to our GP for advice on the best pain medication! I saw them 3 weeks ago and told them of my acute pain and all he said was we will keep you as you are and see you again for 6 months. He did ask about me going on the pain management course. My husband went to this and was told to stop all pain medication and just go out and do something nice to take your mind off it. My husband was having to have morphine for his pain, as am I, so to tell him not to take it would make him go through withdrawal which is so unpleasant. Also he was told that when the pain is bad try looking out the window and concentrate on something he could see rather than the pain. Honestly, the people who run these things must never have experienced chronic pain. I am going to call my GP and see her because the pain in my knees and spine is terrible and is dominating my life. Getting older really sucks. Thanks for taking the time to reply Maz, very much appreciated.

[ilovetoastwithbutter]

Hi all, I can thoroughly recommend an anti-inflam diet. Dr Carol Granger has been great. She works via Skype.

carolgranger.co.uk/

Also Breathworks for mindfulness approach to pain reduction.

breathworks-mindfulness.org...

[hunter5582]

Just saw your post from a month ago. For those of us who are JAK2+ - it does more than increase hematopoiesis. It can also increase your body's production of inflammatory cytokines. Increased cytokine load has been linked to a number of the secondary symptoms experienced by those with MPNs. What worked for me re joint pain/osteoarthritis was a Turmeric-Curcumin blend. Since I got on that daily 1500mg regimen, I have not used/needed any NSAIDs. Have not used NSAIDS for nearly two years now. Don't know if it will work for you, but it sure helped me. Not all of these supplements are the same and there is variable quality issues. I found that you need to pay attention to the bioavailability of the formulation as it does not readily pass into the bloodstream. Hope you find something that works for you.

[hunter5582]

FYI - just in case you have never seen this post.

JAK2 = Janus Kinase 2 gene. The JAK2 gene is comprised of a set of alleles. When some of these alleles become mutated, then you are JAK2+ - typically results in either ET or PV. The percentage of the alleles that are mutated = JAK2 Mutant Allele Burden. Speaking broadly, people with a JAK2 burden less than 50% will have a milder course of the MPN. There are a number of factors why this is so. JAK2 signaling drives hematopoiesis (thrombocytosis, leukocytosis, erythrocytosis). It is also thought to trigger thrombosis. Emerging research is focusing on the role JAK2 signaling play in increasing the production of inflammatory cytokines. The cytokines appear to be responsible for many of the secondary symptoms we all experience.

Here is one reference about the JAK2 Mutant Allele burden. bloodjournal.org/content/13....

Here is a reference to the role of inflammatory cytokines in MPNs

ncbi.nlm.nih.gov/pmc/articl... .

There is a lot more out there on these topics. Takes a bit of effort to find the information - but knowledge is power and worth the effort. Hope this helps.

[jillydabrat in reply to hunter5582]

No wonder I had 3 DVT's, I am Jak2+

[jillydabrat in reply to hunter5582]

The blood journal page won't open. Guess I know who to turn to for information lol

[hunter5582 in reply to jillydabrat]

bloodjournal.org/content/13...

Must have copied funky. try this one - it just worked.

[jillydabrat in reply to hunter5582]

thanks, it's opened fine this time