Pregabalin for fibromyalgia

[Gingers]

Hi. I have had ibs and muscle pains for 40 years and finally been diagnosed with fibromyalgia! I have been taking amitriptyline for 20 years which really helped but now my gp has taken me off of it as he said it causes dementia in older patients! . I now have pregabalin which I haven't taken yet. My question is two fold. Firstly does anyone experience a itchy scalp with fibro and has anyone tried pregabalin

[Ivyamanda]

no to your query about itchy scalp. What I’d o have burning that can appear on face, younger, lips, arms etc. i have trust amytriptiline, Duloxetine, and norotriptyin - and gave up on them, possibly too soon. Am now taking Pregabalin and 50 mg X-ray. I have stuck with this for 8 months, along with support from NHS Somerset pain management team and their online live support sessions(8x2 hours) called Body reProgramming. These sessions have been VERy helpful, and are nudging me towards trying to taper off pills and try other ways of coping with pain. I do also use high strength CBD paste when I feel it is going to be a hard day.

[Cat00]

I didn't find Pregablin very effective and it made me put on quite a lot of weight so I'm not keen. I had much greater success with its older cousin Gabapentin which I was on for years before coming off it to have children.

[misspicky82 in reply to Cat00]

Hi Cat, did you put weight on with Gabapentin? I'm thinking of asking my GP if I can be swapped to that at my next appointment. I've already mentioned it but he wanted me to try a higher dose of Venlafaxine and upped my dose of Amitriptyline by 20mg, but I've put on alot of weight already with that and it's not helping my mood, I'm fact it's making it worse. I said I'd give his idea a go for another month but I can't see me changing my mind, I feel like poop most days and I've been in so much pain since I was taken off Duloxetine and put on this regime 💤💤😴😴

Angela 😇x

[Cat00 in reply to misspicky82]

I did put on a bit of weight with Gabapentin but nothing like Pregablin, Pregablin was quite frightening for me in this respect. I was anorexic before going on Gabapentin but anorexic from stress/pain/lack of sleep rather than anorexia nervosa which is from body image, so everyone was very pleased I was putting on weight. When I changed it to Pregablin I started to become a bit over weight, but Pregablin only worked when I was on Gabapentin at the same time and they wouldn't let me stay on the two together.I was and still am on Amitriptyline aswell though. Although Amitriptyline has no effect on my weight, I'm on 90mg now, I was on 110mg and have been on 50mg in the past. I very been put on a new sleep drug so I would like to try on come off Amitriptyline but it's early days on that front.

Weight gain is very depressing and when you're in pain all the time too it gets very hard emotionally, I know how you feel!

[squarah40]

I found Pregabalin had no effect on my pain and it made me feel ghastly. Tried it for 6 months and as had no effect and still in pain, I came off it. Yes to an itchy head! Try head & shoulders dermacare shampoo in the blue bottles.

[MW07]

Hi, I tried both Pregabalin and Gabapentin for head pain and myoclonis. The Pregabalin helped reduce the myoclonus but not the head pain at all, and the constant hunger and weight gain were horrible, so I stopped. The Gabapentin made me feel terribly depressed, so didn't last long on them. Tried Dosulepin (old school - not sure all doctors prescribe) as well, for head pain, but it also caused depression, so had to stop. Coming off Amytriptline too, as advised by doctors. No other solution as yet.

[fibropatient]

I am concerned as I have been taking Amitriptyline for years also with great effect on my fibro. Who told you that this drug causes dementia? Do that have any proof?

[Gingers in reply to fibropatient]

Hi. I was happy on amitriptyline and been on it for 20 years. When I last saw my gp he informed me it causes dementia in over 60s so I am weaning myself off it and has put me on pregabalin

[FussyHussy]

I found this article on the Alzheimer's Society website. It is old (from 2018) but it does detail research into this issue. alzheimers.org.uk/news/2018...

[CraftyTeacher]

I have had no issues with pregablin, unfortunately I couldn’t take amitriptylin as I had some horrible side effects. As ever, your body may behave differently than mine or anyone else’s, so it’s best to give it a try.

[Tisme72]

I’m a 72 y o Male, I have been on Pregabalin for a couple of years, it’s caused me to put weight on so I am tapering down to the lowest level where it still has any benefit. I also have random itching including in my head. It doesn’t seem to make any noticeable difference but as with all Fibro sufferers being different you can’t really generalise. Unfortunately it’s all a case of ‘suck it and see’, but you have to give it a chance. Around 4 - 6 months should give you the idea if it’s going to work or not, but don’t expect miracles from it at best it takes the edge off it, and you’ll still get flare ups. In your position, like me undiagnosed for a long time you have to think about how long it’s been yet we’re still here having this conversation! I researched the mechanism of why the pain exists without injury or illness and why it was so widespread; the answer was what eventually got me to accept that it was just there, basically it’s a brain malfunction that senses you might be in danger, its reaction is to send out pain signals, but as it doesn’t know where the danger is it sends out widespread signals. Unfortunately this is the reason why it’s so difficult to treat and as yet there’s no cure. Keeping calm, avoiding stress and getting the best sleep you can are all important plus a healthy diet is very important, especially concerning free radicals and other antioxidants. Avoid processed food if you can and eat a wide variety of different foods. Everything helps, if you can get some simple exercise like daily walks that’s really helpful.

Good luck, hope you get on OK!

[bigpigs77]

I have been taken amytriptiline about seven years I take 50mg a night two 25mg tablets. They are ok but I would not like to be taken amitriptyline for the rest of my life. I do feel thirsty a lot and dry mouth I don't know lf it's the amitriptyline or my other medication I take.