Hi. I've just rejoined after a few years & would love to be part of the group again.
I am struggling as we all are with this terrible Fibro.
Yesterday, after yet another chat with my GP, he prescribed Pregablin. 50mgx 3 a day.
I am already taking Co Codamol & Amitriptyline.
I have read many negatives about the drug & wonder if any one can share their experiences about it please?
Hi there, welcome back. Has these two meds are two of those widely given to people with fibro you will find tons of posts on this topic.
Have you tried using our search box? Maybe check out some of our recent posts. We have many members on this type of medication.
Sorry I can not answer your question. I am one of the people who don't take medication. I just wanted to say hello and welcome xx
Momo
Hello lovely
Im currently on pregabalin also which it was helping but I’ve been in a bad flare for days now and I’m so much pain, I’ve had to take co codamol and use Voltrol gel.
I couldn’t use amitriptyline as it counteracted my other medication.
50mg three times a day still isn’t a high dose, give it time; if it doesn’t improve your day then go back to your gp.
Hope it all works out for you. X
Hello Dash01
Thank you for your reply. Sorry to hear you are suffering a bad flare up at the moment.
What dose of Pregablin are you taking?
Hope your pain eases soon. X
Hello Pinkmarshmallow
I currently take 75mg in a morning and 50mg at night.
Thanks for your kind words. I am feeling better today thankfully, hopefully the flare up is over. Xx
I've been on it for about 12 years now. Quite a low dose 50mg and 75 at night as I don't tolerate meds very well. It has really helped with the tingling, hot zapping pains I was getting. It is certainly a medication which has made life bearable.It has given me quite a sweet tooth so I always make sure I have plenty of fresh food and heskthy nibbles although I do have treats. It has enabled me to exercise and move abiut more so I am actually lighter than I was before taken the medication.
Good luck, hope it helps you.x
Thank you, Rosewine. I haven't started on the meds yet, but positive information like yours is so helpful & encouraging. x
Just to say if I hadn't have been in so much painI might have stopped the capsules in the first few weeks asI felt like a zombie but that feeling gradually went and I haveno ill effects from them now.
Thank you, Ajay575. You have been very helpful. I've not started on it yet, but information like yours is very encouraging.
Hi, I take gabapentin which is similar drug to yours, basically they are muscle relaxants, I find they really do help, so fingers crossed 🤞 for you xxx
Thank you so much for your reply. xx
What dosage are you on? Have you had any side effects at all? xx
I'm on 100mg 3 times a day, as 50mg didn't do anything. Xxx
Hello, welcome back. I'm fairly new to this group and the world of fibro. I was started on amitriptyline which I couldn't tolerate and now on Duloxetine (only on starter dose of 20mg so it's currently laughing at my pain etc 😏). I imagine once I've maxed out on this I will be moved on to Pregalin some point down the line! Wow 450mg max dose for fibro is rather scary so I'm guessing your 150mg should be fairly tolerable 🤔🤷. Wish you luck with it 🤞 X ps when I read the title pinkmarshmallow I thought the post was going to be about Pink Marshmallows - yum lol 🤦
Thank you for your reply, Loobielu. Yes hopefully, I will heave no problems with the Pregablin. It's just that initial step of taking a new drug that bothers me. Especially when you hear so many negatives. You made me smile (thank you) when you mentioned pinkmarshmallow. Just domething I came up with on the spur of the moment! (I had a different name when I was last on here) 🤣
I love that name. Then again, I love marshmallows. 😋 I, too, am on Cocodamol and amitriptyline. Only on 10mg of amitriptyline at night but I find it helps somewhat. I'm also curious about pregablin in case I should need them at some point because I've heard some mares about it. 🙃
Thank you. Madmelly.
The name just came into my head & I thought it sounded good. Lol.
I took the Pregablin yesterday, but I am now in two minds not to take anymore. I feel really weird. Yesterday I came out of a shop with my hubby & I started to walk left instead of right as I couldn't control where I was walking. My speech is slurred & I'm finding it difficult to speak properly as though I am drunk.
Also, my ankles are swollen & this is only one day, so what will it do to me if I carry on with it? Maybe the side effects would go after a time, but I don't think I want to carry on taking it.
I will carry on with Amitriptyline & increase the dose & if that helps.
I'm also borderline diabetic & have read that Pregablin could increase blood sugar levels, which is yet another risk.
Wow, that is scary. My advice would be to make an urgent appointment with your gp and explain your side effects. Maybe it's normal to begin with, I don't know, like I said, I've never had them prescribed yet. Saying that, swollen ankles doesn't seem right at all. I'm also prediabetic so maybe they wouldn't be a good option for me either. Plus I have to work so no good walking weird and slurring. Lol. I'm a chef so... 🤷♀️
I had no side effects at all, it definitely relaxes me, and stops my muscles from tightening up and twitching xxxx
Thank you Meditationlover x
I am on 50mg 3 times a day and it definitely helps me.As I am an older lady I am nervous about increasing it as it affected my memory for the first few weeks (I could not remember my tai chi moves in order)
The group members rely on me to follow
As I have done it for 30 yrs.
Also it did affect my eyesight for a little while.
All returned to normal after about 6 weeks.
I did notice I ate more to start but that also calmed down and my weight stabled.
On balance I found it took the edge off some if my pain and I am able to do more activities.
Everyone is different. I am only describing my experience.
Good luck. Jill
Thank you, Jill, for sharing your experience of Pregablin with me.
I am also getting on in years & nervous about trying a new drug. I have had bad side effects in the past with blood pressure medication & have recently been started on another one.
Have you been on Pregablin for long?
Best wishes x
Hi, I have been on pregablin for a 1 year. I am 80.
It's so good that you've chosen to rejoin the group.There's nothing better than to be able to get some reassurance , support and advice from others whom really understand what you are going through and feeling.
When it comes to Pregabalin I am on the same dose as you will be on ( a reduction from a dose of 100mg three times a day after I've got a drug combo that works for me).
Yes , especially in the first six weeks as your body adjusts or if you are on high doses it can make you feel a little spaced out or drowsy at times. That's the negative but , to be fair , the symptoms of Fibro can do the same especially when your pain isn't under control.
I chose to change from Pregabalin from Garbapentin after doing my own research. Pregabalin us easier on the stomach and does not cause the same chance of constipation as the Garb , and this was important for me as I also suffer with IBS - C.
The same pain management level can be achieved at lower doses on Pregabalin than on Garbapentin which does help reduce the level of drowsiness or brain fog you can get.
I am hypersensitive to drugs so I was sleepier on higher doses of Pregabalin but I'm in a good balance at 50mg.
I also take it in combination now with Duloxetine 30 mg three times a day and Paracetamol 500mg , again three times a day. The full combination keeps my pain managed.
As you know from your experience with Fibro the aim is to be pain managed while enjoying a well paced , enjoyable quality of life rather than being 100% pain free.
The medication combined with my Self Care of pacing my activity, daily gentle exercise in my comfort zone , managing stress and triggers and relaxation breathing does keep things in balance 85% of the time. My 20year old daughter has also started the same regime since her diagnosis and is finding this combo is working for her too.
I am allergic to Cocodamol but I know you need to be careful on it as it can unsettle the stomach but part of the way it causes addiction is that it can trigger a Codiene Pain Cycle in many people so as the dose drops it brings on rebound pain which makes you need another dose in a vicious cycle. My OH and many of my friends with Fibro had to taper off it and then found other antiinflammatory alternatives which worked as well with their other drugs with less side effects or strain on the stomach and kidneys.
My Fibro drug combination wasn't working on all the pain pathways for me as I have other chronic health conditions too including , Ehlers Danlos Syndrome, Chronic Migraine and Cluster Headaches and a heart issue which causes Chronic Dysautonomia. Getting the diagnosis right for all my conditions and treatment for them too was vital in reducing the pain and one of the most common triggers for my Fibro Flares. As you might know , illnesses can bash against each other and trigger one another like wailing babies in a nursery so it's important to get the whole body treated not just one issue to get to the best life you can have.
I take Ivabradine and Midodrine for the Dysautonomia which interestingly controlled my Tachycardia but the Midodrine is also good for the Fibro pain. It's not generally on offer for Fibro on the NHS though.
I get medical Manipulation Therapy and Hydrotherapy (when it's available ) from NHS Physiotherapy. The Hydro is particularly useful with the Fibro and my other joint issues as the warm water reduces the pain and water exercise helps to build strength without putting too much pressure on the joints. The Fatigue and Pain does feel better with light exercise each day like walking , leisure swimming or water exercises , low impact pilates stretches and tai chi. Getting your medications right also helps to make starting therapeutic exercise easier too.
It's worth a try basically , you may get side effects but give it chance as they often settle within 4-6 weeks after your body has got used to the new drug. Good Luck , Virtual Hugs and Welcome back , Bee
Thank you so much, Bee, for your most welcoming & extremely helpful reply!
I am truly grateful to everyone who has taken the time to let me know of their experiences with Pregablin.
Sending you virtual hugs back, & all good wishes. Pat x
Amitriptyline was first prescribed for me but I had terrible nightmares and it didn't really hit the pain for me. I went on to Gabapentin and its been wonderful, no side effects so far. I had got to the point where I was waking up 10 to 20 times a night numb, tingling or just in pain. Since taking two gabapentin every evening about 9pm I sleep pretty much most of the night and maybe wake up once for the loo and a couple of times to turn over but very little pain, a little miracle. I don't take it in the day because it makes me drowsy and dizzy and I need to work or drive but just getting sleep is so helpful. Trouble is with codeine when you take a lot you get so bunged up but I don't get that constipation issue with gabapentin. I do take codeine when needed in the day but I limit it to one or two when I really need it. As well as Fibro I have Lupus and Sjogrens too so a lot going on but hydroxychloroquine is a saviour in my case as well. So far no adverse drug interactions either. Tiger balm for headaches/general aches works great in my case. Maybe try a different pain med other than amitriptyline as I said it did not work for me. Talk to your Rheumy or GP about it. We sometimes react so differently to different drugs. You can only try and see how it goes. Be aware that all these drugs can have withdrawals so it would really good to speak to an expert about this.
Hi dg70. Thank you so much for your positive & helpful reply. I have been prescribed by my GP to take 50mg x 3 a day.
It will probably make me feel drowsy too during the day as Amitriptyline does that to me.
What dosage do you take at night?
300mg x 2 at night and there is scope to take another during the day if needed. I find that it seems to carry through to at least the morning with me. Gabapentin was an epilepsy drug rather than an antidepressant like the Amitriptyline. It just suited my brain and pain receptors better. Sounds a lot against what you take but it may be totally unrelated the dosage between different types of drug.
Helloand welcome back, I hope this new med helps xx
Hello Yassytina. Thank you very much! xx
Piriformis Syndrom
Successful PIP..Mandatory Reconsideration 
Goodbye Pregabalin !!!
Hey to all ...
Voice loss with breathing difficulties
