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.

As you are already taking strong medication, it would be sensible to check carefully with your GP, consultant, or licensed specialist about safety, interactions, cost, and daytime alertness. Patient-focused resources such as LeafEase may also help you prepare for that conversation, but your own clinicians are best placed to advise based on your full medical history.

Given the amount of pain you're dealing with, I don't think it's unreasonable to explore all of your options. It sounds as though you've already tried a lot of the usual approaches and are being sensible about weighing up the pros and cons. You should definitely discuss it with your consultant, but if something has the potential to improve your sleep and quality of life, it's understandable to at least consider it. Hope you find something that gives you some relief. ❤️

Op I am glad that you are sleeping better after trying the medicinal vape. As long as you are sensible with dosing and don’t drive while under the influence of it you will be fine. Marajuana gets a bad rap on MN which is not really deserved, it’s much safer and healthier than alcohol which is a socially accepted drug that can kill you. No one has ever died from a weed overdose..

@IsThisGoodIdeaOrNot I was wondering if you are still benefiting from the MC. I am in a similar situation and also a bit wary about the possible impacts - grogginess etc.....

I am less groggy, as I am sleeping more (excluding heatwave issues)

I take a vape dose after work around teatime, another one in the evening and an oil dose before bed as it last longer.

Saturday I might take an extra vape dose in the evening, as I can sleep longer Sunday morning.

I have two months worth prescription and I am seeing how long this lasts as I am taking less than I am allowed both vape and oil, as the lower dose the better for my body and the cheaper it will be overall.

Short answer is I would not work or drive under MC, it is not worth the risk. It is good enough to sleep more at night and have something that distracts from the evening/night nerve pain. I struggle in the afternoon and take my opioids then and if I am out of the house and driving.

Just need to find a portable air conditioner unit for our bedroom, when they are restocked.

Please note I have spoken to both my GP and my neurologist consultant before I got a private prescription and I agree everyone should do that before applying for a private prescription

Thank you. That is very useful. I mentioned it at the NHS pain clinic and they seemed to know less than me. I will discuss with GP if I want to pursue.

I am also interested in pursuing hypnotherapy as I had great success dealing with a phobia and I know chronic pain is something they try to help with. I might try that first and then MC.

I think most NHS Drs would likely not know much about it and/ or be reluctant to discuss it. This is not a licensed or NICE recommended treatment for any condition so it does not feature on any curriculum or CPD. The evidence base is poor for most indications so there’s not even much reliable evidence you can look up even if you were minded to. An NHS Drs can really only say ‘this is at your own risk/ discretion but thanks for telling me’. If a person had a history of psychosis or a high risk for that I would tell them not to but otherwise I genuinely don’t have any basis on which to advise. If any other Drs do I don’t know what they are basing that on.