Fibromyalgia Action UK

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13jenda profile image
22 Replies

Hi everyone, I am a newbie who has been reading this great site for a couple of years and have now decided I want your advice. 3 years ago i was diagnosed with polymyalgia rheumatica and spent 2 years on steroids. Initially pain went but steroids would kill any pain but soon on reducing the dosage the pain came back. I am under the care of the Pain Management Clinic and it was now decided I had Fibromyalgia, not PMR !!! As we know there is not a diagnostic test, but all bloods were taken to eliminate other problems. I was then put on Gabapentin which really did not help, then on Duloxatin which again didn't do much and am finally on Pregabalin. Started on 75mg for one week, then 150mg for one week, 200 again for one week and now on 300mg. Pain slightly better but feel like a zombie. Only been on them for 4 days but cannot sit down for falling asleep. This is not what I want. I have to reduce back to at least 200 this week and try and get off these pills. I was told by my GP to try CBD oil but that was all the advice he gave me. He would not go further. I am so tempted to use CBD oil but like everyone do not know the best company to try and what amount to take. I can see that the CBD companies cannot help with medical advice so come on everyone, can you help. I really do not want to take chemicals that are certainly not doing me any good when there seem to be something natural out there. Sorry if I have rambled on too much.

22 Replies
Dannyf123 profile image

Hi 13jenda

I have been using CBD oil for 3 months now I buy 5000mg 10ml from live well cbd for around £55 it’s expensive but worth it.

13jenda profile image
13jenda in reply to Dannyf123

Hi Danny, Boy, that was a quick reply. Lots to read on Live Well so will spend some time checking them out. Many thanks for such a quick response.

in reply to Dannyf123

Can i ask where you buy this and how do you take it? Not tried it, a bit sceptical.

Dannyf123 profile image
Dannyf123 in reply to

Hi Nurse Gladys,

I buy it from a vape shop in Milton Keynes. You can have 1000mg-5000mg

under the tongue drops.

in reply to Dannyf123

Hi. Just out of interested how long does the 10ml CBD oil last you? And also are vaping shops selling the oils you would get from a pharmaceutical?

Hi hun from Nurse Gladys Emanuel (still open all hours), I hear your plight on these drugs, gabapent and pregab are not for everyone, I wonder if you have tried conventional pain releif? CBD??? be careful its a rip off in the high St. shops with very little effect, online its expensive and not yet tested on humans for our kind of pain just word or mouth from those who have used it. My father had polymyalgia and used steroids daily for pain, have you got problems in your upper arms around the joining with shoulder? I get pain therea lot but its NOT fibro related its calcific tendontis which steroids do relieve, I had injected ones. Much is labelled with fibro once we have been diagnosed and that is quite wrong something could be missed unless you are fiesty with your medics like me and insist on further investigations.

13jenda profile image
13jenda in reply to

Hi Nurse Gladys, Very strange but the most pain comes from my arms and shoulders with finding lifting things like the kettle and saucepans very difficult. Nothing like the pain in the rest of my body. I did not think it was fibro and having looked up calcific tendontis has made me wonder. Seeing the GP on Monday so will run it past her. Thanks for possibly coming up with the problem as I have mentioned it each time over my 3 visits in 3 months and no notice has been taken. Will investigate like you say. Thanks.

No wonder that you feel like a zombie, you increased your dose of pregablin far too quickly. It took me two or more weeks on one dose for my side affects to totally disappear and I would only increase by 50mg once my body was used to the last dose, it has been very helpful for my nerve pain. Please reduce the dose very slowly if you like to come off them.

I hope you find medication that will help you x

13jenda profile image
13jenda in reply to

Hi Morespoonsplease, Unfortunately I had no option about my dose as I was given only 1 week of each dose and 4 weeks of the 300mg but seeing the GP after 4 weeks. If I continue to feel no benefit and so drugged I will have to reduce slowly and look at the CBD oil. That could be the medication out there that will help me.

Thanks for your support.

E3178 profile image

I use Cbd oil under my tongue with good results for fibromyalgia pain.

13jenda profile image
13jenda in reply to E3178

Can you let us know what strength you use and where you buy it from. Did you start at a low dose and then slowly increase. So pleased it has helped you.

ruthmel1 profile image

Hi I've been using CBD oil for 11 months now and its brilliant. here is my story and whats worked for me and I'll also post you my How To start taking CBD guide.[

I have had Fibromyalgia for 26 years and M.E for 15. I have Also had Panic Disorder since I was 12 and have had episodes of Depression.

I started my CBD journey for the pain mainly as it was uncontrolled on 160mg of SR Morphine, 450mg of Pre Gabilin, Pramipaxole for restless legs, arms and body and Duloxetine. Plus quick acting Morphine 10mg for breakthrough pain!

The pain was so awful that I used to have 3 boiling hot baths a day to help the pain including one at 3-4am every single night without fail!! It could easily reduce me to tears.

I found benefits from the CBD oil almost immediately and began to reduce my Morphine under my G.P’s supervision. (The withdrawal was horrendous).

Using an oil with added CBDa has been really beneficial. I started on Love CBD Dutch 150mg which is 1.2mg per spray,sublingual, 3 times a day. I increased as we advise and went onto the Love Dutch 4mg spray eventually.Another popular CBD oil for beginners with added CBDa is Simply Green at 2.5% per drop.

For breakthrough pain I started vaping. I have used Cannavape Complete Grandaddy Purple which helps and is relaxing too. I sometimes use it if my anxiety is a bit high too. In the day time I vape Cannavape Complete White Witch for the pain.

My pain is much better controlled than it ever was on all the medications. 9 Months later, with G.P Supervision, I am on SR Morphine 60mg and Duloxetine.

ruthmel1 profile image

Heres my How To Start CBD oil guide;

You must start Low and slow with any CBD oil/paste as you need to kick start your own Endocannabinoid system into working.This is how scientists believe CBD works. Its called Microdosing.You start with one 2-3mg drop of CBD per dose, 3 times a day. You up it by one drop 3 times a day each week until you find what’s called your 'Sweetspot'. I. e what dose works best for you. I personally found upping it by 1mg per dose worked best for me.

CBD has whats called a Biphasic effect whereby taking too much can enhance your symptoms , such as increased Anxiety or Pain and taking the lowest therapeutic dose will work better and be more beneficial.

Sometimes you may experience what's called the Herxheimer effect. (you can Google DR Herxheimer and read more about him and it). Basically its like your body is detoxing and you may feel flu like, or have headaches or nausea. It usually happens if you start on too high a dose but not always. It goes after a few days.

CBD products take time to get into your system and work.Its not like taking a pain tablet which works in a hour or so. So be patient and increase the drops slowly as advised .

There is no right or wrong dose of CBD oil.. Researchers have actually found that you could, in theory, take up to 200mg of CBD a day, apparently without side effects! Most bottles of CBD oil, I’ve found tell you what dose to take and not to exceed it. This advice isnt usually very accurate so basically, ignore it and Microdose as suggested.


If you're on medication then ,apart from consulting with your G.P/Consultant, you must leave 2 hrs between CBD and meds or if you're on any heart meds /Statins/Anticoagulants/Beta Blockers or anything that clashes with grapefruit, then you need to leave 4 hrs. This is because Cytochrome P450 ,which is produced in your liver, is responsible for breaking down both medications and CBD

13jenda profile image
13jenda in reply to ruthmel1

Hi Ruth, You have had a rough time over the years and I feel for you. Thank you so much for such a detailed post on the oils and I will spend some time checking the sites to decide where to go with the oils. Have to do something as all the meds I have taken have had no effect whatsoever so will give the oils a go. So pleased that with all you have wrong that you have found so much benefit from the oils. Many thanks and take care, Jenny.

Roseyinthegarden profile image

I’ve been using CBD for several years now and it has enabled me to come off all my fibro meds now, including Pregabalin. I’m using an aqua based, full entourage CBD from Simply CBD. I’ve written up my experience of taking various types of CBD and I’m happy to send it to you, if you’re interested. Rosey

13jenda profile image
13jenda in reply to Roseyinthegarden

Hi Rosey, So pleased you have done so well on the oils. I would love to read your experience as I am a bit baffled by so much information coming in to my post. So much to take in so I look forward to reading how you coped with the change over. Spoke with GP this morning as could not cope anymore on 300mg 2 a day. Zombie and so giddy. She has put out some 200mg for me at the surgery to pick up but she asked the question "have they helped though". Of course, I told her not one bit so am seeing her on Monday to see what is next. Whether I am brave enough to mention CBD oil, will have to see. Just want to get off these meds as nothing helps. Ranting again, sorry. Look forward to receiving your notes. Take care, Jenny.

ruthmel1 profile image
ruthmel1 in reply to 13jenda

My G.P was receptive to me taking CBD oil. Legally they're not allowed to advise you but when I mentioned reducing my \Morphine she was delighted and very helpful. I assured her it was the legal variety I was taking! I'd already decided that whether she supported me or not I was doing it anyway as I know my body. Good luck

Roseyinthegarden profile image
Roseyinthegarden in reply to 13jenda

I’ll send it to you shortly, Jenny.

I_am_still_me profile image
I_am_still_me in reply to Roseyinthegarden

Hi! So glad to hear you have such a good experience with CBD as I'm also looking into more natural way of managing my fibro, since I am so intolerant of proscribed meds. I would really appreciate your guide please. Many thanks in advance.

Roseyinthegarden profile image
Roseyinthegarden in reply to I_am_still_me

Sending them now. 🙂

carmenp1 profile image

Hi 13fenda, I agree with you about getting off these medications. Gapapentin affected my vision after taking it the second time. Had double vision even the day after stopping. It left my vision less than it was. The other medication I tried the other meds too and took myself off cold turkey. I was fine. I was on very high doses and didn't really help. That's why I decided it was pointless. At that time I had been couch bound for a few years. Once I stopped the medication I was able to do a few hours of oil painting. It took some time but I eventually was able to do more things.

I am very warry now of antidepressants and these medications supposedly able to help with fibromyalgia pain.

Just do it. What have you got to lose. That's what I was thinking when I decided to try taking a more active role in my treatment. The doctors I've seen are all at a loss of how to treat the symptoms. It's an awful situation so commonsense, trial and error together with research are the way I am going.

I researched D-ribose and have been taking it twice a day for the chronic fatigue and it has improved it so much I feel almost like my old self. The other supplement I started recently is Q10 which works on the mitochondria too.

Hope you find something that works for you.

I_am_still_me profile image

So sorry to hear about your ongoing struggle with medication. I am also a newbie and find myself in the same predicament, it seems that with each new med they want to try me on I only get all the side effects without any noticeable improvement. I have tried CBD in the past for my anxiety issues but thought it made things worse, but reading through the replies here it sounds like I may have started too strong, so I am keen to try again.

My last episode with Duloxetine (followed by Co-dydramol and Tramadol which I also reacted really badly too) certainly put me off prescribed medication altogether, so I am desperate to find another way. When I last saw my doctor I asked her opinion on St Johns Worth as an alternative to deal with it, she said to try it but off course she didn't know much more, such as what dose or anything.

Sorry I am not really offering any useful advice, just wanted to kind of say, I know where you're coming from and I hope we both find a way to manage our symptoms without further wrecking our bodies with medication that our bodies obviously don't agree with. Good luck with CBD, let us know how it goes. All best

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