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i know this is very tabo but i wanted to know 🤓

Rosco14 profile image
61 Replies

Good Morning Everyone,

I have tried most drugs now and am currently coming off withdrawals from Duloxetine, which by the way is horrendous!!!!! When i started on the drug, it was 2 weeks in bed, very very drugged. Then i stayed on them for about 6 month's. Then seen my pain management team and they suggested to come off and try something different. So here i am, appreciating and now understanding what people go through with drug withdrawal symptoms. Just awful! So nothing medically has worked for me so far 😒

So i have researched a few things on smoking weed, everything suggests it helps in many different ways but without the side affects that the other drugs give me.

Now i am not completely in denial and m sure side affects would follow with weed but am hoping not as strong.

beffore i took on ir tried this very tabo subject, i wanted to her from people thr know the desperation and pain we go through daily. Even hourly most day's!

So i guess my question has or does anyone smoke weed on a consistent bases and find it helped? Or was it like all the other medical drugs with shitty side effects and not much help?!

I just want my life back, like we all do 😊

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Rosco14 profile image
Rosco14
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61 Replies
LisaSnow profile image
LisaSnowFMA UK Volunteer

Isn't weed smoking still illegal in the UK? I wouldn't think there is a large enough sample size in any support group of UK to get a feel of weed's beneft with pain because it isn't being tried (for good reasons). Anyways i live in a State where weed smoking is legal. I can say definitely that it did not help my pain, and in fact it made me feel worse.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toLisaSnow

It is still illegal and socially unpalatable for most. However medicinal use under a very strict regime is allowed albeit hidden behind the need for a specialist consultant and the need for more research.

Rosco14 profile image
Rosco14 in reply toLisaSnow

yes yes it is, i do not mean i shall roll hp a joint and pop in the garden. I apologise if that is how it came across. I mean a vape - with oure cbd oil and then correct extrcts taken from the plant for my condition. It would not hve any THC in it. X

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toRosco14

That sounds like cbd oil and not weed/cannabis. If so then it is legal with no no thc. But their is little evidence for it at present

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Some people do self prescribe with cannabis of the street but the reports are anecdotal and varied. You could help participate in research by contacting the likes of ProjectTwenty21 and get a prescription legally and with medical support. This will also minimise the "high" element and allow more ability to function potentially.

But, there is still the same issue as with most treatments. It does not work for all and there are plenty of silent non contributors that it does not work for.

Research is very much not convinced on its effectiveness and studies up till now that are in favour have very easy to spot weaknesses.

Painny profile image
Painny

I’m so sick to my bone from this bl00dy pain that ain’t trust anything. Just going to ask my neurologist if I could supply me with medical cannabis even though I know of the pitfalls with this drug

vella profile image
vella

I find it very helpful, but hard to get legally in the uk. The problem with ‘street meds’ is that you have no idea what else is mixed in with it. Pfizer are currently developing a new medication that combines morphine with cannabis. I hope they will get it to the market soon. My doctor gives me oramorph but I barely use it because it makes me feel sick and sometimes I throw up. It also makes me feel ‘stupid’ and disconnected from the world around me.

Masil profile image
Masil in reply tovella

hi vella ask your doctor for some anti sickness pills i use cyclizine as im on so many med that made me feel sick oramorph being 1 of them and they have no side effects and really do help there are other antisickness tablets aswell but the ones i mentioned are the strongest and what are given to cancer patients having chemo as i was so sick all the time and couldn't face the thought of food so maybe its worth talking to your doctor and explainig about the sickness and also try taking smalker doses of oramorph then you should get some relief but without feeling so spaced out, stray strong xxx

vella profile image
vella in reply toMasil

Thank you for taking the time to reply. I do have some odansetron left over from when I had chemo. Tbh I just didn’t think of using them since. I’ll check with my doctor. Have as good a day as you can 😊

Masil profile image
Masil in reply tovella

no problem just thought it would help to get some relief for you sane to you enjoy your day

Xxx

Rosco14 profile image
Rosco14 in reply tovella

i had those aickness tablets and they are incredible. They also really helped the dizziness!!

Andie101 profile image
Andie101 in reply toMasil

hi, im with you, first time i took oramorph i was sick, so cut the dosage and it helped, i now take it everyday, i couldnt function without it combined with paracetamols, im useless without it, i would get some weed but what happens when you can't get any because its not legal here, be a pharmaceutical nightmare, sure its more about money than helping millions in pain.

Rosco14 profile image
Rosco14 in reply toAndie101

i could not smoke it pure but have you thought about the vape with CBD?

vella profile image
vella in reply toRosco14

Tried vaping for it didn’t work, sadly

rocklady73 profile image
rocklady73 in reply tovella

morphine depravities make me feel ill an o nothing for pain My whole family is like this all the way back to my great grandmother who had breast cancer. None of us can even take cocodimol. can't smoke pot the the salve is amazing. put in my acking places such as neck, knees, shoulders etc and it works wonders. Please make that legal

Penthouse13 profile image
Penthouse13

I have tried weed on two occasions and it did help with the fibro pain. I am not into taking addictive drugs though, due to the fear of long term side effects. Occasional use, say in a fibro flare, may work as long as you don’t become dependent on it.

Rosco14 profile image
Rosco14 in reply toPenthouse13

do you take any other prescribed medication? X

Penthouse13 profile image
Penthouse13 in reply toRosco14

I have tramadol but only use it sparingly as I’m reluctant to become addicted. Paracetamol takes the edge off slightly , but useless for really bad flare ups.

vella profile image
vella in reply toPenthouse13

The majority of the drugs they give us are addictive. Weed isn’t chemically addictive but some people do rely on it psychologically

Fibrofog profile image
Fibrofog

I do have one joint a day, and for a little while my body and head feel so much better. Sadly it does wear off. And i know i might get some back lash from this. I am on a few painkillers and the weed is more helpful than the painkillers.

And i sympathise with the withdrawal, once unknown to me, i came home from hospital without pregabalin, and didnt know till it was time to fill my dosset box. I ended up going 3 days without any, and it was horrendous!

Hope you find something that helps you. Have you tried a muscle relaxant?

Rosco14 profile image
Rosco14 in reply toFibrofog

so can i just say thank you for sharing your experience and no that no judgement is held.

It is such a conversation and subject that can literally change people behaviour towards you.

I mentioned to a consultant and they laughed, I mentioned it to a gp and they looked discussed.

Yet we will try all these extremely hard drugs with huge life change results without a thought because a doctor told us too.

I m learning experience is more important then anything else. X

Fibrofog profile image
Fibrofog in reply toRosco14

hThank you for not judging me xx

Amethyst-Mermaid profile image
Amethyst-Mermaid

hey!!

Firstly our bodies do have receptors for canniboids. So with that in mind, you can look into other methods of ingestion. Cbd with THC might be an option. You can also bake with cannabis - freeze the cake/brownie in small doses. That’s means you are not smoking and causing more damage.

Good luck!

Rosco14 profile image
Rosco14 in reply toAmethyst-Mermaid

i am just learning all of thus info and to be honest it seems to be life changing so far! Thank you for being open x

Amethyst-Mermaid profile image
Amethyst-Mermaid in reply toRosco14

plenty of great research on DuckDuckgo, including documentaries and books you can watch/read. Netflix/prime/plex have loads of info on natural drugs. They are currently looking into psycho active drugs for mental health, like psilocybin etc… micro dosing etc..

Simply Cbd uk and other uk based stores have good quality cbd -minus thc. I buy the highest dose possible and that way I use less. So much information out there! Just lots of big Pharma info that contradicts. Best option is read who did the study.. tends to be a little biased.

Supplements can help help also, magnesium is an important mineral. We need 300-450mg a day. Helps with restless legs and every cell in our body. Might be worth getting some and take at night with a good quality D3 and K2 along side a fish/pumpkin oil.

Enjoy the research

Masil profile image
Masil

Hi Rosco sorry to hear your not getting on with the normal medication for fibro it seems like everything it takes time for these things to work and everybody is so different in there condition but yes i tried smoking weed and it didnt help and had bad side effects , really bàd paranoia and i mean really bad weight gain and even more lethargic then usual crap nightmares you name it i had it never mind the problens it caused with my chest like a elephant sat on it and felt like i was struggling for every breathe never mind how much it cost to buy it!!! As its so exspensive . I really would go back and talk to your doctor as sadly there is no medical cure for this and there is no specific medication to make it go away completely you just gave to accept your never going to be the person you was and come to terns with that 1st before you can start to move forward with this illness and accept the things you carnt change and learn to pace yourself and not worry over the little stuff and take it one day at a time, i do suggest getting the book by bette brown titled you dont look sick .as it will help you understand fibro alot better it made me realise a few things i didnt know about and ive had fibro over 20years so its only a thin book but definately worth reading as it explains alot about the different stages and other conditions you can also expect that run concurrent with the fibro its a fantastic book i got mine from amazon priced about £5.99 you can also let family and friends read it so they also understand your illness alot better and what your going through i hope this helps you to think about what to do and to not really go down the weed route as its not worth the price you have to pay for it and having to get it from dealers that just want to make money and you dont know what they might have done to it!!! nevermind that its now illegal and if caught buying some you could be arrested for possession which is not what you need but stay strong abd keep us updated as to what you do

Best wishes

Rosco14 profile image
Rosco14 in reply toMasil

thank you so much for your open response and advice with no judgement!!

It sounds awful your experience and i hope you have found a place of comfort now 😊

X

Andie101 profile image
Andie101 in reply toMasil

hi, i try and write when im able to as my hands seize up after a while, although sometimes i write so much, you wouldn't think so, i was listing all the things down and how it affects me, like bright lights is just 2 words, but how it affects me is a page long, back pain, another page, loud noises another page, and so on and so on, the list goes on and on and i thought of so many hidden disabilities i have i thought i should write a book called behind closed doors, we put on such a brave face, ive even thought of the front cover, a face, cut in half one side smiling, the other with a tear running down the cheek, now if i find a book with that picture, I'll be after you for the copy rights, laugh, think all of us could write a book or two. I really do think its 1 of the hardest things to explain to friends and family, never in a million years did i think people/ family could be so thoughtless and judgemental, the comments and messages ive received would make your toes curl up.

One other thing im also weary of is everything from the top of your head to the tip of your toes will from this day forward be because we have fibromyalgia, i worry how many of us will have something else going on and it'll be blamed on it, but we know when its something different, so we've got to speak up, only on my 4th visit to the doctors did i manage to get an MRI scan on my back, she said the pain i was experiencing was the fibro, but i knew it was a different pain, the results were oastioarthritis in my spine and 2 protruding disks, never was an apology, infact when i paid £37 for a letter to take on holiday saying i needed more than 100mls of morphone, the reason she gave was rheumatoid arthritis, this was mis diagnosed years ago, i know i should just change my doctor but whats the point, once youve been diagnosed with fibro, no one wants to know after the usual physio and consultant, its repeat medication cus theres no cure, so nothing they can really do or say, its sites like this and on line reseach and learning to come to terms with the changes and the loss of so much.

Alb2 profile image
Alb2

As a health care professional, I find this post interesting. The Journal of Pain Research published results of a small study conducted in Israel, where medical cannabis is used routinely. Of the 25 Pain Consultants who responded to the questionnaire sent out, a good percentage use Cannabis over routine opioids with 21% prescribing for Fibromyalgia pain.

(Journal of Pain Research, volume 11:1411-1419 Sharon et al. July 2018)

We are so far behind research in this country. Back in 2012, I attended an international medical conference and listened to the positive evidence from other countries as to the validity of medical cannabis for many symptoms, pain and nausea in particular. Perhaps there needs to be a robust international working party to drive things forward but my cynical mind thinks it will be the pharmaceutical industries (ergo money) that will dictate.

KimiJay profile image
KimiJay in reply toAlb2

I heartily agree with everything you say.

Latics1989-90 profile image
Latics1989-90 in reply toKimiJay

Me too!! xc

k77a profile image
k77a in reply toAlb2

Yes knew a guy who was prescribed it for lupus in lsrael he was allowed to smoke it on his lunch break does show how far wales especially is behind as do think there are some clinics in london prescribing it under pain management!

Rosco14 profile image
Rosco14 in reply toAlb2

wow your incredible and it is really all about information and knowing what or where you stand with somethings. X

JayCeon profile image
JayCeon in reply toAlb2

Similarly the 2020 - again Israeli - review by Tzadok & Ablin "Current and Emerging Pharmacotherapy for Fibromyalgia" pubmed.ncbi.nlm.nih.gov/321... / ncbi.nlm.nih.gov/pmc/articl... puts hope into finding out how the endocannabinoid system works and that helping develop meds with precisely measured quantities of cannabinoid agents such as THC and CBD.... (as well as finding out about individual genetic (and pharmacogenetic) characteristics, brain connectivity and neuroinflammation)....

Alb2 profile image
Alb2 in reply toJayCeon

Yes, it’s very interesting. The fact that it looks at the correct combination to affect outcome is what is needed. Too often the synergy is overlooked in trying to reproduce the desired outcome, especially when synthetically trying to replicate what nature is providing.

JayCeon profile image
JayCeon in reply toAlb2

Generally totally agreed. :-) But from what I hear from US people, nature here is providing an enormous variety and/or it's possible to make an enormous variety out of that, so it's a science or matter of long individual trial and error to find the perfect balance of contents. Not something medical science is good at (yet). Fine for people just readjusting something that's already working a bit. But just one drop of high quality CBD oil severely zombifies me, so not for me - and I haven't pursued trying to get MMJ altho it was the last suggestion from my pain docs - they actually said they'd applied for it, but nothing came of that....

Andie101 profile image
Andie101 in reply toAlb2

I couldnt agree more, would be a pharmaceutical nightmare for the companies who produce all these meds, but as other countrys are moving forward, i guess it can only give us hope in the future, if not in my time, surely i think the time will come when somewhere someone has to wake up and start making the changes needed. In the mean time, keel taking the tablets. At least theres that to be thankful for, i couldnt do what i do without it.

Smoggie1 profile image
Smoggie1

my sister is on a private prescription for a liquid called.LDN..it is allowed in Scotland but not in UK..she was lucky.. I have talked to gp who was not interested at all and pain specialist was a joke..he said he had never heard of it. I said type it into your computer and you will find out...

My says it has helped her alot and is off most other medications which were very strong and she feels alot better. ..unless she has a flare up from her asthma and goes on steroids... She is 74..

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply toSmoggie1

ldn is allowed anywhere in the UK, not only Scotland. Dicksons chemist in Glasgow can advise on getting a private prescription if your gp is unwilling to prescribe for you.

Smoggie1 profile image
Smoggie1 in reply toHazel_Angelstar

yes I know but my gp is an arsehole..I have no chance..have been asking for several years.. different docs..but they are not interested ..but others may have better luck

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply toSmoggie1

I was on it myself for several years and it made a significant difference to my pain levels)

Andie101 profile image
Andie101 in reply toSmoggie1

yeah, might be easy if you have a doctor thats open minded, but like you the ones ive seen are closed and somewhat rude if i mention being able to access private consultation through the NHS, if you have the right doctor they will give you the right information, i know someone from a different part of the country, dorset. That got to have private treatment through the nhs for sonething else, they must have a great doctor, thats proper patient care, mine said if you want to go private then you would have to pay and complete the treatment privately. But seems like reading between the lines, were heading that way eventually..

Smoggie1 profile image
Smoggie1 in reply toAndie101

my great doc left 10yrs ago since then just past around docs and now your lucky if you see one that actually wants yo look for your problems..once they see fibromyalgia they put anything else down to this..so I don't have much chance.. I just try to do what i can for myself.x

Rosco14 profile image
Rosco14 in reply toSmoggie1

ahh amazing, i am sooo gld it hs helped her!! Why can some people be so judgemental 😐

Smoggie1 profile image
Smoggie1 in reply toRosco14

because thry dint care or want or have time to these days at our practice .x

Emk68 profile image
Emk68

Hi, when I was younger I used to smoke weed but I stopped as I no longer enjoyed it, I gave up smoking cigarettes over 10 yeas ago. The meds I get from Drs., do not touch my pain, there are 100s of strains of cannabis and the benefits far outweigh any negatives, I have read loads about the different strains there is a strain for every illness, i am experimenting with different strains that help me, for pain, anxiety, fatigue depression, lack of energy and now I’m looking into strains that help with excessive sweating and for help with the menopause. I used to think weed was all about that heavy stoned feeling but I’ve had my eyes opened, people need to read up on the facts and the science cannabis is the way forward for all meds, you don’t have to smoke it, I have tried my homemade gummies, I do smoke it but in a dry vape I also infuse honey and my first 2 or 3 cups of coffee in the morning has a spoonful of honey in and that eases me into the day, I have also found that some give me more energy, it makes me laugh & giggle and I’ve also found myself having a little dance round listening to the radio, which is like me before fibromyalgia. Don’t knock it until you try it, it’s not a gateway drug, and compared to meds from big pharma the side effects are insignificant. X

Rosco14 profile image
Rosco14 in reply toEmk68

Can i just say it is so nice to heard you have found your balance 🤩😊

Emk68 profile image
Emk68 in reply toRosco14

I wouldn’t go that far lol, but if you research it’s all there, it’s mind blowing, I’ve read a few articles that say “ for illnesses, disease, syndrome?” That doesn’t have an explanation could be down to having Endocannabinoid Deficiency, pintrest has loads of info. Enjoy x

Gaballetto profile image
Gaballetto

Hey, if you can muster up the money and energy, you could have a short holiday somewhere it is legal and do your own trial for a few days/weeks. No breaking the law that way before you know if it helps! Holland isn't far or expensive to travel to.

Lussan profile image
Lussan

Hi, I live in Sweden and would never dare to buy or even consume as the legal consequences are severe, out of proportion severe, if you ask me. Once, however, I was in Copenhagen, in Christiania, an enclave where lighter drugs can be sold and consumed legally. I bought one biscuit and was pain free for one week. The impairment lasted one evening, then I was back mentally and pain free for 5 days, plus two days with a totally manageable level of pain. I will now try to source the compound without the psychotropic component, then it is legal to consume. The problem is, who can guarantee it is no scam, it does not contain impurities.

KimiJay profile image
KimiJay

I would tend towards taking care of the lungs first. Oil, not smoke. THC really should be legalised then it would not be driven underground and lead to appalling crimes. It could then be monitored and studied properly because for some it does have healing properties. Years ago as an assistant nurse on a psychiatric unit I remember the odd person coming in having had a really bad experience and it would take ages for them to get over it. Some are just not suited to this plant's chemicals. Chinese medicine being thousands of years old understands the extraction process still requires balancing. The list of herbs in any one remedy can be quite long. One balances the side effects of another and often the results are more subtle in their effect. Pharmaceuticals do not really seem to understand this and the results of research that has taken much time and money to develop, is not always what was expected as many research students will acknowledge.// It's the continuing pain levels which can make us panic because there is no life with it, but there are ways to slowly work at getting back to liveable levels. Recognition and support is perhaps the most important way to begin, so if someone offers a spliff and a social experience by way of care and connection, it is probably more acceptable than five minutes in the office of a doctor who doesn't really know you. What we need is potency. A real potential to heal. Trust your intuition but always be prepared to draw some kind of a line.

Jingle2014 profile image
Jingle2014

you can apply for a CamCard in the UK. I’ve no idea what it costs though.

Gooddaysagain profile image
Gooddaysagain

Hi Rosco,

I was on Duloxetine for about 6 months, having spent 3 weeks being ill getting on to them and another 6 weeks being ill coming off them again (great for losing weight, tho'....)

Duloxetine had helped me a lot with pain, much more than some others I had been taking over the years, but I hated how 'numb' and foggy I felt most of the time. I would have liked to try weed, but had no idea how to access any and have a long-term dread of being caught breaking the law.

So, I looked into the difference between Duloxetine and the other meds. The others (Amytriptiline, Pregablin, etc.) are SSRIs, suppressing the re-uptake of Seratonin in the hope that this hormone stays in your system longer to block pain signals. Duloxetine is an SSNRI, which works to suppress the re-uptake of both Seratonin and Norepiphrenine (old Noradrenalin), which do the same but on broader/parallel pain pathways.

I then researched foods and supplements that mimic the effect of both of these hormones. The most effective/simple way I found is to take a broad-spectrum Amino Acid along with B vits and Vitamin C, which help in their absorption and effectiveness.

You will also find it helpful to improve your gut health as this is where most of the hormones are produced and where we also make (short chain fatty acids) Butyrate, which is transported to the brain as GABA (Gama Amino-butyric Acid) where it replicates the effects of alcohol on our opiod system.

I am not totally free of pain, but I'm definitely more comfortable than I was.

I hope this helps..... If nothing else, at least doing your own research will take your mind off the pain for a while.

Also, I need to mention that - although these are 'only' supplements, they can interact with your current meds. So, talk to your GP or pharmacist.

Best wishes for a future, free of pain,

Dee

Andie101 profile image
Andie101

hi,

If your from the uk, unfortunately its not legal, my worry would be when i can't get hold of any, if my supplier ran out, if your in a country its legal, hell yes definitely. Otherwise its trial and error to see what works for you, were all different and it takes along time to settle into one that suits your body and works for you,sorry not much help, just know theres alot of us out there.

Eddie1611 profile image
Eddie1611

Im happy to say that you do not need to smoke weed (its still illegal here) if you go holland & Barrett you can buy CBD oil, tablets . These are what helps with pain, side affects. It is all the good stuff from the hemp plant (cannabis) without the halousagent bits. And it is totally legal!

There are different strengths, so start small and increase slowly until you get to a pain management that is right for you

I also take Botswana tablets, from same place, fantastic for arthritis.

Hope this helps.

Laughlikeumeanit profile image
Laughlikeumeanit

Hi Rosco14

(my first ever comment!)

A bit of a segway but have you considered or discussed lidocaine infusions? Nothing else worked for me and side effects from the usual suspects were bad up to and including hallucinations. Lidocaine works but only for a certain period of time. Even a breather helps. I think most of us eventually come to grips with the fact that chemicals alone/by themselves are not the solution. But in my case, the infusion along with a host of other measures/lifestyle changes, especially pacing and stress reduction (say that 3X fast😱) helped me get some control over my life. Nowhere near where I'd like to be yet, but accepting a new life (not the old one but certainly not a limited life either) has made a massive difference in the frequency of flares and baseline pain levels. Best of luck finding what works best for you.

dinkic profile image
dinkic

Tried CBD oil and all it did was make me hungry, all the time.

Chrisbel profile image
Chrisbel

you can go to certain clinics that are licenced, and be prescribed medical marihuana, if you have tried all the normal drugs and they have not worked. I have smoked weed in countries where it is legal and it does relax you, and help with the pain, as far as I am aware side effects are 1) you get stoned, so driving or working etc is off the agenda, using after work in the evening or to help you sleep more peacefully works. however the most effective way I have found to alleviate the symptoms of fibro, has been to change my diet to a non inflammatory way of eating and taking the right supplements, and going chemical free in everything. between that and breathing oxygen under pressure and exercise, have an almost normal life.

Hiya

Great question and I think the answer really depends on how it affects the individual.

I’ve tried the cbd vapes from Amazon, to no avail - there isn’t enough to make a difference to the pain and they just make me feel sick!

I have also tried the non-legal route and really didn’t find it at all beneficial for me. In my youth, I tried the odd toke and it used to make me giggly, but it tends to just make me very tired and vaguely nauseated these days!

Years ago, a cousin of mine found that (again illegal) weed in cupcakes helped him with his MS pains and I knew people from my days working for a disability charity who swore by the stuff for their pain.

**I’m not recommending you try the illegal route 😅

If you can get it prescribed, it could be worth a go, but I think it is a very personal decision.

As I’m typing, I’m realising how little help I’m being! Sorry 😅

Charliebear1234 profile image
Charliebear1234

hi rosco14, IV tried a smoke it made me feel so I'll, sick out of my face head ache and it irritatedmy pain I could hardly walk not good

Jensenelly profile image
Jensenelly

I do but I always have on and off but I do every day and it really helps me and I don’t get withdrawal symptoms or foggy head like from tramadol and stuff but if you can’t get a script for it you have to try and get it good luck 🤞

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