Pain

[Windy51]

Hi I have ET has anyone tried medicinal marijuana at all I’m sick of taking pain killers wondering if something natural like this might help

[ja66ck]

Below is a link to an article related to your question.

pvreporter.com/the-marijuan...

[LondonWife]

Cannabis is a brilliant, safe and highly effective natural remedy for pain.

It contains many compounds which all work together but the best known are CBD and THC.

You could try CBD (oil or whole plant extract) first if you wanted which is legal to buy anywhere and doesn’t get you high. Some people find it can give some pain relief and help with sleep and fatigue.

CBD brothers/ the original alternative are a great company for this. cbdbrothers.com

But really for pain management cannabis containing THC is best. If you are concerned about getting high (although most people find it pleasant) then aim for a product containing lots of CBD too which helps balance it out and start with a super low dose (start low go slow). You can smoke or vape the flower for fast acting pain relief or use an oil or whole plant extract for a slower effect.

A private prescription is expensive at £2k a month - some info here on how to access that pleacommunity.org.uk

But seriously you can grow it in the garden. You can get seeds here seedsman.com

If the cost is a barrier / you decide to grow your own or buy the old fashioned way on the black market you can apply for a cancard so you have the comfort that if the situation ever arises the police can verify you are a medical cannabis patient.

cancard.co.uk

I hope this helps.

[Tico in reply to LondonWife]

Although some people might find getting 'high' smoking cannabis containing TLC pleasant, I know their is plenty of medical evidence out there which states it can lead to paranoia and anxiety leading to a host of other problems in itself. I don't know if your in the US but i've never heard of a cancard here in the UK and certainly wouldn't be growing anything other than veg in my garden! Tina.🤗

[LondonWife in reply to Tico]

The cancard is a new UK initiative backed by the police I posted the link but you can always google it. Cannabis has been used for thousands of years and is currently being (re) legalised all over the world. There is an increasing body of scientific evidence as well as all the empirical evidence about its many benefits including very effective pain relief. It has been available on private prescription in the UK since November 2018.

[Tico in reply to LondonWife]

I know it available on private prescription. I also heard a doctor on the t.v recently say to date only 3 prescriptions to date have been issued in the UK. I have googled the link you gave and its states your unlikely to be taken to court. Not a resounding endorsment.Cannabis is a controlled class b drug which contains TLC which is still illegal in the uk, Cbd oil dosen't contain it. I live on a street where drug dealing is rife, their are 4 HMO's within an 100 metre distance of my home and one is for so called ex addicts! Drug dealing goes on all times of the day and middle of the night with the police seemingly turning a blind eye so perhaps i'm a little biased were drugs are concerned. Tina.

[LondonWife in reply to Tico]

There have only been 3 NHS prescriptions so far. But lots of private ones.

[Windy51 in reply to LondonWife]

Thank you

[Windy51 in reply to LondonWife]

It’s funny none of those information work lol

[Adlon57]

I have what they call a high pain threshold, cannot use pain killers, no affect on me, I slashed my hand, the doctor stitched me up, no pain killers, she was more disturbed than I was? Looking for alternative, have broken rib at moment, bloody annoying, willing to try something like that! Good idea?😗😗

[TheaterCrazy]

Good Afternoon from sunny Orlando. I can not imagine not having MPN Voice in my life. What a Godsend it is for me. Thanks to whoever set it up and to all of you who contribute your knowledge and experiences. (If anyone wants to edit this feel free because it’s looong).

Before I was diagnosed with ET JAK2, I was in and out of Drs offices wondering what was going on with me. I’m sure I’m not alone with this scenario. My husband is a retired physician now. Medical people still treat us with deference, but that can be good and bad - no explanation needed.

I had burning feet and the burn went up to my knees. I had extreme fatigue, attributed to lack of sleep from the burning feet. My hands were prickly and tingly but they didn’t drive me crazy like the feet. I saw 2 Neurologists but no diagnosis, I saw a vascular surgeon for my purple toe, painful arch and heel. He put me on Eliquis. I had numerous tests. My Internist, following all the specialist’s suggestions, was baffled about all my complaints. I had just had a failed hip replacement before this all began; I have Osteoarthritis off the chart and a new knee that works but two back operations that didn’t. I think I was just considered old (77) and a real or quasi-hypochondriac.

3 months in, the Vascular surgeon released me because the blockage in my thigh was gone. I continued to limp on the foot, complained to the internist about the burning feet and having run out of ideas and worried about opiate addiction, she put me on Med Marijuana.

I was ready to kill myself but it truly stopped me. I took the liquid under my tongue and there it was - no burning feet and deep sleep! I was ecstatic. I still complained

of fatigue and bowel problems that sprung up and they were attributed to the med marijuana. It is so new, no one knows what is really going on with it.

Then I had my yearly check up with my Endocrinologist and after the labs came back, she called my Internist about abnormal blood levels. So after 10 months of these miscellaneous weird symptoms a Hematologist saw me and two weeks later gave me the ET JAK2 diagnosis.

I love the Med Marijuana but it also makes me nervous thinking I could turn into a pot-head. I sleep like I have had Versed or Propofol.

I missed the generation who smoked pot, never drank alcohol, so I’d never been high or drunk. Hardly anyone would believe I was such a babe-in-the-woods at 77.

I now am familiar with the high you can get from Marijuana after wobbling to the bathroom in the middle of the night and wondering why I couldn’t walk straight. I adjusted the amount and still feel my feet stop burning like magic.

If I was 37 instead of 77, I might worry about the long-term effects of the Med Marijuana, but hey, I can sleep at last. The gastroenterologist wonders if the fatigue and the IBS are related to the marijuana because all tests say I have nothing untoward going on bowel-wise.

There is a study out that purports that MPNs have more IBS than the regular population. So, I live with it and adjust my life around where the closest bathroom is. Things could be and certainly were worse.

I recommend trying the Med Marijuana. Again, there is little research on its long term effects except it’s a gateway drug to the killer drugs. I haven’t found that and am glad I no longer take opiates and Tylenol PM.

[hunter5582 in reply to TheaterCrazy]

What you are reporting is very consistent with JAK2 positive MPNs. At the core, MPNs are inflammatory disorders. The deregulation of the JAK-STAT pathway does more than drive hematopoiesis. It also drives the overproductions of inflammatory cytokines. This is responsible for many of the secondary symptoms and conditions we experience. Fatigue is one of the most common of the constitutional symptoms of MPNs. If you are not already seeing a MPN Specialist rather than a regular hematologist, then it would really help to do so. There are quite a few MPN expert docs in Florida, including some in your area. mpnforum.com/list-hem./ .

The research on the role of inflammation in MPNs is quite informative. Here is a presentation on the topic if you are interested in learning more.

youtube.com/watch?v=FzyoPAG...(Not working as expected?)

[Windy51 in reply to hunter5582]

Thanks

[Windy51 in reply to hunter5582]

None of these work I wonder if it’s my phone

[Windy51 in reply to TheaterCrazy]

That sounds so good I take Hydrea at the moment do you take any other meds I’m going to ask about it I did once at the hospital awhile ago and they shut down they don’t want to talk about it if it helps our condition at this age it’s good thank you for your info

[hunter5582 in reply to Windy51]

Suggest firing any docs that do not want to talk about options than may help or are unwilling to consider changes to your tx plan.

[Windy51 in reply to hunter5582]

Yes true

[Tico in reply to Windy51]

I wouldn't stop the Hydrea under any circumstances before discussing other options with you Haematologist. Tina.🤗

[LondonWife]

Hi just a quick one as I just found out a private prescription for dealing with chronic pain with cannabis is much less than I thought. Approx £130 a month. I have repeatedly read reports of £2,000 a month paid by families of children who have severe epilepsy. But this is different and not as expensive at all. This is one clinic in the UK who have clear pricing in case it is helpful. sapphireclinics.com/pricing/