AIBU to consider private medical cannabis for severe nerve pain?

[IsThisGoodIdeaOrNot]

I have severe nerve pain in my legs and, despite strong pain medication I often struggle to stay awake during the day and equally struggle to sleep at night.

The nerve pain increases from the morning through the day, peaking in the evening and overnight.
I can get to sleep following last evening meds but wake up in the night and often can't get back to sleep

I exercise three times a week on an adapted exercise machine at home. Take magnesium last thing, stick to reading on my kindle when I can't sleep. So I am trying my best to have good sleep habits, but the pain and the tiredness is overwhelming,

I am working full time from home and I have fallen asleep during the day and after work. My husband wakes me up to work, and so I can eat my tea.

I need to find a solution.

I have spoken to a doctor about getting a private prescription for Cannabis with the hope that I could sleep at night and therefore be more alert during the day.
I have to decide whether to get my summary care record from my GP, to send to the doctor to progress the prescription or not.

However the introduction package of dry herb and oil is £170 and they suggest buying a Volcano Vaporiser, which would be £350. This is a lot of money!

I have no idea if this will help or make me worse, being addicted to another drug (already addicted to Opioids that my consultant prescribed), the expense, the legality of it if under the influence whilst working!

Though if I decide to try this, I am thinking evening before sleep or once a month at the weekend to give myself a break from the constant pain. But afternoons at work are so hard trying to ignore my discomfort, forcing a smile and a good attitude whilst working.

Would I be reasonable to try this privates prescription for pain relief or is it a ridiculous idea for a middle aged lady in a wheelchair?

Ps. I already spoke to my GP who suggested a private prescription and aim to speak to my consultant in my next appointment.

It’s not unreasonable at all. One of my family members did it to help with a difficult pain condition and it helped massively. He was able to later get surgery (which solved the pain issue) but while waiting, found the cannabis oil really helped.

Do it you will probably massively benefit from
it.

Was it nerve pain?

So if you have the money to spend, sure, give it a try. But I don’t know that I would expect cannabis to help you sleep so you are alert and functional the next day.

It can help with appetite and with pain, yes. I’ve considered it, but not gone that route for cancer related nerve pain. What so far is working for me is a combination of pregabalin and cocodamol (which you aren’t really supposed to take together but anywho, it’s necessary and it seems to work).

Have you ever used cannabis recreationally? While the dosages when used medicinally are different, I wouldn’t really describe it as providing a refreshing night of sleep such that I popped up in the morning ready to take on the world.

If money is a concern, could you get some to try to see how you react before you sign up for an expensive plan? I’m not telling you to buy illegal street drugs, but everyone has a friend of a friend somewhere.

I am on pregabalin and co-codamol already amongst other medication. I still don't sleep.

I worry about being even more groggy in the morning, than I currently am...like you suggest.

I wouldn't try street drugs, as me and my husband would be fired, if I did anything not legal,

I can find the money for the initial prescription but a bit scared to commit to the final step of sending summary records and ordering an official prescription.

Luckily my next consultant appointment is next week, so I will see what he advises.

Would like to hear anyone else's experience positive or negative.in the meantime.

Yeah go for it. Cannabis is really beneficial for insomnia and lots of types of pain.

Yanbu. I have cannabis (not medical) for severe pain and it’s bloody brilliant. Before I was heavily medicated up to my eyeballs incapable of most things, now I smoke it on a evening and it’s basically changed my life.

The doctor mentioned I might be able to reduce my other medications which would be wonderful.

Yanbu to consider it but be aware not everyone can tolerate it - dsd was prescribed a cannabis based medicine for epilepsy and it terrible side affects, had to come off it plus it didn’t help her seizures and made her dopey

The consultant might decline to advise if they don’t have expertise in the area which few NHS consultants would.

No personal experience but have treated a number of people who had psychotic illnesses induced by medical cannabis and that would put me off. Don’t go for the THC containing stuff. In fact do you even need a prescription just to try CBD oil with no THC? Could you not try that first?

I am also wary of private medicine in general. Obviously they are going to promise you the world as you are paying them a lot of money. That’s just my cynicism.

Assume you already tried more mainstream drugs for nerve pain like amitriptyline or duloxetine. Is it definitely nerve pain and not RLS as there are other options for treating that.

Not for nerve pain precisely but my mum was on various things over the decades from useful to terrible and has found marijuana extremely useful. She lives in the states and it’s legalised where she is so she thought she’d give it a try. It’s helped her so much. She never used it recreationally and tried for the first time in her 60s.

Given your current quality of life I would think it’s worth a try but only you can make that call. Is there anything else you can try if not this?

Amitriptyline didn't work for me, still on Duloxetine

Definitely nerve pain, I have yearly Nerve Conduct tests which check the damage to my nerves and show when it gets worse.

Yes, I am concerned about grogginess and yes the private doctor is unlikely to be negative about private scripts.

I reckon my consultant will tell if he thinks it is a bad idea. He after all will not make money off my decision.

I can't use oil due to another health condition I have and CBD cream rubbed directly into my legs did nothing.

It is difficult to know what to do for the best

There is no point in physio therapy, as my dead nerves are dead, there is no helping them, as my consultant said.

My condition kills the nerve cell body, so nothing can be done to correct damage, just the hope that I don't get worse in the future.

There is no treatment, research or anything for my condition, it is too rare.

Though I find exercising and stretching with straps lessens the muscles tightness and reduces muscle spasms aka I kick my husband less at night

I need to exercise more, but three times a week is the most I can force myself to do at the moment

I received a private prescription last week and have slept well every night since!

I have no idea if this change is a placebo effect or a true reaction to the cannabis, but frankly I don't care.

Just having sleep at night has so many benefits including no longer falling asleep at random points in the day

Im so pleased for you.
How expensive did it work out for you in the end? And how did you find the process?

I paid £130, which included 2 Doctor appointments. As I had a think between appointments, usually you have one appointment.
I had to ask my GP for a Summary Care Record, which I emailed over as confirmation to what I had told them.

I ask for some of the flower as it sounded more natural, and they suggest I try a liquid vape thing too, which came with a little rechargeable unit

I am finding the flower takes a while to sort out and the vape liquid easier. But I am no idea on the vape liquid remaining doses, where as it is easy to look at the flower remaining amount.

I also had to buy a vaporiser for the flower and that was in addition to the £130.
The company I used are not charging for doctor consults at the moment as it is a special offer.