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Long Term Pain Killers

Is anyone here on long term pain killers. I have bone and muscle pain that is keeping me awake. Tried extra water, salt, magnesium tablets, etc, nothing is working. Went to see my GP but she was reluctant to give me anything as she’s never heard of ET. It wasn’t even listed on her NHS database. (In The UK NHS database they still have this under the old name of Primary Thrombocytosis) Any ideas on what pain killers may help and I’ll go back to my GP. Thank you & Happy New Year.

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I have serious muscle/bone pain problems with MF/AML. After a lot of resistance got palexia - meds not keen as it's an opioid so not to be taken lightly.

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Thanks Jane, when I see my GP I’ll mention it. Thanks Raph

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Hi. Have you asked your MPN doctor about this new problem? If not you should. Last, do you have CBD oil available where you are? Katie

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Hi Katie, I’m seeing my MPN doctor in 3 weeks, CBD has just been legalised here in the UK, it’s unlikely they will prescribe that, I wish they would as I’m really getting cheesed off with this pain. Thank you for replying Raph

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HI RAPHAEL ..... DO YOU KNOW IF THE CBD OIL RAISES PLATELETS ..... I HAVE BEEN TRYING TO FIND OUT .... DO NOT KNOW OF ANY TRIALS BEING DONE .... I REALLY NEED IT FOR BACK PAIN BUT AFRAID TO TRY IT BECAUSE RIGHT NOW MY PLATELETS ARE UNDER CONTROL .... THANKS

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I believe it doesn’t affect platelets, in fact reducing pain by taking CBDO, it could lower your platelets, but before you take it a health professional needs to look at other aspects of your health profile. Talk to your haematologist and see what he/she says. It’s only just been legalised in the UK and so there is not much on-going long term use data. Raphael

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Hi Raphael, I also suffer muscle and bone pain and my GP prescribed codein phosphate, which is moderately effective. As it is on opioid and potentially addictive, I try to limit its use where possible. However my GP also found that I have a vitamin D deficiency, which also causes bone pain and muscle weakness similar to ET. Since he put me on high dose vitamin D supplements the pain has virtually disappeared. It may be coincidence but it might be worth having a blood test to check your vitamin D levels. It also reduced my fatigue massively and has hugely improved my QOL.

Good luck

John

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Thanks John I’ll mention that to my haematologist when I see her in a couple of weeks. Thank you for taking the time to reply. Raph

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Just thought this may help you all.

I was advised to use D3 to combat my pain before I was diagnosed ET JAK2+, by my pain management nurse. I use a sublingual spray called Better You and it definitely helps. I tell you this because D3 tablets, notoriously, cause digestive problems. I bought 3 bottles of the top quality (and price) vegan D3 and discovered that was the effect they had on me, before discovering the sublingual dosage. ATB Penelope

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Hey Raphael... :-)

I do suffer from bone pain, and joint pains too...

I believe that it is a part of the suite of symptoms that accompany my Post ET/ MF condition.

I am now on Jakafi, and that has certainly helped. However, I do tend to find that my pains are exacerbated by the colder seasons. And at times, that bone pain, which is quite diffuse is also accompanied by restless leg syndrome. low-grade temperature, and my constant companion... cold sweats.

My GP & Haematologist have no problems issuing me with some suitable pain killers, and they do help. However, they can cause further complications if one keeps taking them because they are quite addictive, and eventually, one must decide when to stop taking them, and then go through some nasty withdrawal symptoms.

Hence, I do try to get by as best I can with the barest of minimums, (type of drugs), in order to save myself from some latter angst & frustration...

Nevertheless, at times , options can be very limiting, in my view...

Best wishes

Steve

(Sydney)

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Thanks Steve, that’s helpful, I hate taking any more meds, but the pain is really getting to me, I’ve tried using an ultrasound device and a tens machine but it’s not helping much. Also been on a mindfulness CBT course of pain management, it all helps a bit. Thanks for replying.

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I also have bone, muscle and joint pain. I'm prescribed Zapain (Co-Codamaol) helps to take the edge off so I get a good nights sleep, but during the day the pain never actually goes away. It's like a toothache in my legs.

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High Val, that’s a good description, that’s what it feels like. I’ll add Zapain to my list of things to mention to the doctor on my next visit. Thank you for replying.

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I am using buprenorphine patches to combat bone,spleen and liver pain. At the moment I am on the lowest dose and do not want to go up a dose because of the sedative affect so I have taken the plunge (with the agreement of my haematologist) and started CBD oil on Jan 1st. Still too early to tell if it’s going to help as I have been recommended to start on a low dose and work up until I really feel the benefit. I know it is controversial but the oil I use is legal. I’ll let you know in due course if it is worth the expense!

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Thank you, that’s helpful, please keep us informed & also whether it affects your platelets count. Thank you for replying.

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I am not really expecting it to influence my blood counts although that would be great. I am using it purely to obtain pain relief. I will let you know at a later date if is has been effective for me.

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Thank you, it would be good if you could let us know, I can’t see how it can affect your count but it would be good to have feed back.

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Hi Raphael ~ as some others have mentioned, if your vitamin D is low it can cause terrible pain. I’m newly diagnosed with PV, and my hematologist recently told me there is no pain associated with my cancer! So I’m seeing a new doctor this month. I’m experimenting with CBD oil for the pain. So far it has allowed me to go off the nsaids I was taking, which are hard on the liver. I also take edible cannabis for the sweats. It doesn’t always help. Good luck finding a solution.

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Thank you, that’s really helpful, I will get tested for vitamin D I will get a blood test done, I think it’s called a D(25)(O/H)D test. If it’s less than 50 nmol it could explain the pain. Thank you so much, please keep in touch and let us know whether CBD oil affects platelets levels.

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Hi

You need vitamin D to be at the top end of the range, over 100nmol.

Peter

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Thank you Peter, that would be good.

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I did run the CBD oil past my haematologist last year. He only said he wouldn't take it himself because it hadn't been medically tested here. not because it would negatively impact my ET in any way so I decided to give it a go. Started low, built up the dose slowly and it did help with my bone pain. Once my platelets were back near normal range I stopped and now get some aches but more tolerable. If it gets bad again I shall go back on it. I even researched how to make my own CBD balm and now my family use it for all sorts of things. My son for eczema, my other son for lower back pain and my daughter for her monthly cramps. I even tried it rubbed into my temples for a niggling headache which worked, maybe a bit of mind over matter, expecting it to work, I don't know but if it works, I will continue.

There are FB communities you can join, most of them are people who have used it and can advise or you can just browse and see all the posts and gain more knowledge. Good luck Raph!

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Thank you so much for replying, that is really helpful. Happy New Year

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Hi Raphael,

Doesn't sound as if you are under a specialist, if I was you I would ask to be referred to a specialist in your condition. Maz may be able to help you with the list of specialist Drs UK wide.It would help a lot as they advise you instead of you advising them.I know it takes courage but you wont look back.I haven't.

good luck

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Thank you for replying, yes I got the idea my GP thought I was a hypochondriac, even though I had a spell of 20 years without a doctors visit. I think I may have been marked down as a hypochondriac as before this illness was diagnosed I was back and forth to doctors saying that I was feeling unwell but because the symptoms are vague with this illness they just thought it was a psychological problem I even researched my symptoms to the point where I gave them a clue that it was either something to do with my blood or my lymphatic system. I even pointed out that my platelets were high and was told the levels vary and it’s nothing to worry about, eventually I had a stroke and the health professionals took it more seriously. That’s when I was diagnosed with ET. It took 2 years of being made to look like I had mental health issues. Thanks again.

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Sounds great, one thing I haven’t tried. I’ll pop out now and get some. Thank you so much for taking the time to write.

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