I have been on Duloxetine up to 120mg but I came off that due to the intense sweating and at the time I didn't feel it was doing anything in regards to my pain.
I was weaned off that pretty quickly, you may remember a previous post about this. Anyway after a month I told my GP that I did feel a bit brighter after a couple of week, but then the pain kicked in real bad and since that happened, my mental health took a turn for the worse again so I asked if I could be put back onto an antidepressant that was also used for pain, like Duloxetine was. He was being quite stubborn as he fully believed that if he gets my mental health on an even keel then my pain will settle. We had a debate about this, with me stating that he's looking at it wrong bcoz I only had issues with my mental health bcoz my health had taken so much of a turn and bcoz I'm in constant pain so if he looks at getting my pain levels down, my mental health will improve. Anyway, he asked me if it's just at least try another month on the Venlafaxine at a higher dose of 150mg. I agreed as I wasn't getting anywhere anyway. I started the 150mg Venlafaxine and then the sweats kicked in again and I was falling asleep everywhere, sat on the toilet, in other stupid places and positions, I was confused and acting strange so I've gone back to the surgery this week just gone to get a prescription and I told the receptionist my issues with the Venlafaxine and asked if I could have a quick word with my GP, but he sent out a note to me with a prescription for 60mg Duloxetine, telling me to go back down to 75mg Venlafaxine for a week then restart the duloxetine at a dose of 60mg.
I don't know his reasons for putting me back on Duloxetine but I do have an appointment with him on the 9th September and I've already spoken to him about possibility trying Gabapentin as I had been speaking to someone who said that was good for their pain. I've also been told Pregablin is too.
So my question is, those of you who are on either Gabapentin or Pregablin, or have been on either in the past, how do or did you find it? I got told Pregablin puts a lot of weight on you so if rather stay away from anything that does that as I've already put 8kg on since being diagnosed (medication weight as I've actually been eating less).
I would just like to know if either is any good, I'm so fed up of feeling like I'm in a constant flare-up 😥
TIA
Angela 😇 xxx
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misspicky82
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Hi Angela. I was put of pregabalin and ended up pre-diabetic with a 2 stone weight gain. Trazadone gave me severe lower limb swelling. Currently on duloxetine which seems to elevate my liver enzymes. This is currently being looked at as I have cihrossis. I think it's all trial and error. I wish you all the best.
Thank you for your reply. I be honest, I've alot of people saying they had huge weight gain on Pregablin so I'm not that keen on it due to that but I would like to know about Gabapentin as alot of people have said its been good for their pain but I've not so much heard about its effects for Fibromyalgia.Your response is very useful tbh as it's just given me further validation that is definitely a weight gainer. I've put 8kg on already and I'm sure that was due to Duloxetine so I'm not sure why he's put me back on that, unless it was because he just didn't have time to see me and didn't want to try me on anything new without speaking to me 🤷🏻♀️ I certainly don't want to stay on Duloxetine but I'm hoping at the lower dose than last time, I shouldn't have the sweats as badly as last time x
I've been on Pregablin for about 13 years. I did gain some weight but I put it down to inactivity as I was in severe pain. The benefits of Pregablin took a few weeks to cut in but it certainly helped with the burning, shooting pains that were ruining my life. With pain more controlled, I do still get quite a bit of pain but never as high as prePregablin I have been able to become more active. In fact I am nearly a stone lighter. I cut out several things in my diet, rarely eat bread and eat a lot of fruit and I think this has helped.Everyone is different and unfortunately the obly may yo find out if it helps and suits you is to try it. Often doctors prescribed Gabapentin as I believe it is cheaper but they have slightly different effects and one sometimes suits better than the other.
When I did mention Gabapentin to my GP last time, he said yes and there is Pregablin so he didn't rule it out, but was adamant that I have the Venlafaxine more time. I've gained alot more weight with the Venlafaxine though and he even said I've definitely got medication weight gain so I was actually surprised when he doubled my dose of it.
I agreed I'd give it a month and I have but it's not made no difference to my pain so I'm now on the wean down. My next appointment is 9th September and I will be pushing what I want then. He's looking at it wrong, he needs to concentrate on my pain before mental health bcoz imo it's the pain that's causing the issue mentally.
I agree the lack of movement and physical activity has definitely added onto the weight gain so I want something to take the pain levels down as much as possible so I can be more active then.
My main mission now is to work out which is best, Gabapentin or Pregablin?
Hi misspicky82I was stuck on Gapapentin for PAD I say stuck because everything I got see my gp I begged to come of them After about 6,7 wks they were not helping with pain I felt like I did when drinking swinging and swaying on my feet (imagine standing in tiny row boat in storm in middle of the ocean) it came and went no warning
Monty python would have been impressed with my walk
I was put on 12 a day along with 8 Paracetamol
Be careful I become very scared I thought I was going to fall most the time...
Oh I'm sorry to hear that Pastafox, I know some others have said this. I've taken 1 before and I know that feeling you're saying, my mate gave me 1 years ago but I wondered if it was a side effect that may settle down with longer use. 12 a day seems alot, is that a normal dose?
I will bear this in mind, thankyou for your really hun, it's been helpful.
I've tried pregabalin and it did nothing but I piled weight on. I've tried gabapentin and that too did nothing. I've tried Amitriptyline and that was good for helping me sleep better but I had a heart attack so was stopped. I now have 60mgs duloxetine and my nerve pain I get has lessened loads. I also take 150mgs venlafaxine for the last ten years.
This is similar to what I was on but I couldn't handle the 150mg of Venlafaxine, I felt really confused and not with it on that side. I was also on 30mg Amitriptyline which I took down to 10mg.
It was definitely the Venlafaxine though as I'm now on a lower dose, back to 75mg and I'm not as confused and have noticed, which I didn't speak about in my post, but I was really struggling to wee. This happened when I very 1st started taking Amitriptyline but it stopped after a few weeks. Once I was put on Venlafaxine again this started up but it was 10x worse. It was taking me ages to start weeing, and since I've gone back down to 75mg that has settled too. I'm still having a bit of trouble but not as much.
I just don't think Venlafaxine is for me, I need more pain relief and it since I started Venlafaxine that my pain levels shot up again.
Trying to do as much research as I can now so I ask for the right medications. I'm fed up with all this trial and error 😒
Fibromyalgia does make you sweat with or without any kind of prescription Medication.In the majority or cases fibromyalgia stops the human body from regulating temperature etc.
All medication affects people in different ways.
I personally found
Gabapentin & Pregablin very harsh on the body & mind.
Gabapentin or Pregablin do have alot of side effects but there again all medication does.
I have heard these medications can make you feel weird at 1st but I'm ready for that and I just want to see if those side effects settle down, if they don't, I'll go back to the drawing board as they say. I'm really not that bothered about feeling out of it for a few weeks if this settles down.
I haven't been sweating as much since I took the Venlafaxine back down to 75mg so I think it was definitely that making me sweat and I only started the sweats on Duloxetine after going up to 120mg.
I just want to get as much research done on Gabapentin and Pregablin (more so Gabapentin tbh) as I definitely know Pregablin has put weight on alot of people and I'm already up by 8kg since being diagnosed but I've been eating a lot less.
In my opinion pregabalin and gabapentin are both horrible drugs. I had the most horrific withdrawal from pregablin and terrible constipation and either of them gave me any pain relief. If you can then see if you can try medical cannabis. It's really helped me. The only thing that really has in 8 years of constant pain. It has really helped my brother in law too with his chronic pain.
Thank you for your reply. I'm sorry you had such bad experiences on Pregablin. I am starting to build a picture about the Pregablin now that I don't like, but still want to try Gabapentin. I've not looked into medical cannabis. Where do you get this from?
Hi, I have been on pregablin for a couple of years. I haven't gained any weight at all.I admit I don't often eat very much anyway and my average calorie intake is about 1500 calories a day at the most.
Although I am only on 175mg a day it does lower the pain a bit except when I am in a bad flare up (I am in a painful flare up at the moment)
When I first started taking it I had about 8 weeks of feeling a bit drunk. My memory was affected to the point that I couldn't remember my tai chi moves.
I also had blurry vision.
These side effects settled down after a few weeks.
I think all these meds have different side effects that may or may not effect anyone of us. I am a great deal older than you so you may be able to take it without the initial problems I had.
This is what I'm thinking, I know alot of people have reported the feeling drunk and out of it but I'm ready to try that and see if that settles down. I'm more swaying towards Gabapentin at this time. Your response has been very useful. It tells me that the side effects do settle down. I know we are all different though so I'm going into it with that open mind. The GP might not even give it me yet but I want more of a say over my treatment .
having been prescribed for fibromyalgia , amtriptylin, Duloxetine and Nortritylin, and giving up on all possibly too quickly, I have now been taking Pregabalin 50mg twice daily for 7months. Pregabalin is not an antidepressant and over all I think I cope better. BUT I have just completed vis Somerset NHS Pain Management service , an 8 week 2hour live online Body reProgramming course that I believe has really helped.it is based on the 8week Mindfulness sessions offered in the book and CD and online , from ‘Mindfulness for Health - a practical guide for relieving pain, reducing stress and restoring wellbeing’. I cannot praise enough the 2 doctors who ran the sessions, and heartily recommend the book and the 8 weeks of mindfulness sessions, enough! Yes, I have bad days, and good days, but I am beginning to feel more in control and how to cope.
Hi.. I live in Somerset.. I have been suffering from Fibromyalgia for a long time.. My health went down hill after glandular fever.. I'm taking duloxotine (for years) and diazapam for anxiety 🙄.. I didn't like taking any meds to be honest.. But now I'm on strong antibiotics for a inflammatory bowel condition.. I hope you are ok?..where is the pain management clinic please?... Sending you lots of love and best wishes xxx
I wish they'd give me diazepam but my GP won't prescribe it. It does help me though, had it from a friend. I get panic attacks and they really help me calm down and help with sleep.
That link didn't work but I've looked online about it. I'm actually going to a pain clinic beginning of September so I should be starting something similar by the end of this year. Thank you for your response though, I'll definitely look into that if the activities from the pain clinic don't work.
Hello misspicky82, reading your story reminds me of myself. Afters many years on these drugs I decided to stop taking all painkillers due to the never-ending side effects.
It took me 6 months to clear down my body of drugs. I so regret taking them.
I put on a lot of weight a few stones which I have now lost without dieting.
I look at my lifestyle and changed my attitude towards self-help effects for pain.
I asked my doctor to put Me forward to the pain clinic 🙃 to have a better understanding of pain levels.
I looked at my diet which might affect fibromyalgia lots of stuff on the net about food and symptoms.
I started doing chair exercises which have so help me loads of video on YouTube.
I do lots of stretching exercises to relax my muscles. Relaxing your muscles is key . try rubbing warn oils into your muscles you will feel less pain.
I started using a tens machine to support my pain levels you can wear them anywhere.
I joined talking therapist website and talked about my struggling lifestyle they gave me such good support.
I keep moving as much as possible because I have osteoarthritis and fibromyalgia the pain in my knees in bad. I walk with sticks and keep building strength in my muscles to keep my mobility going.
My mindset has changed my fear of pain and sweating which Is hard to control. The way I deal with this is stop and do deep breathing to ease my anxiety.
I Had to review my stress levels as it makes fibromyalgia worse.
I research fibromyalgia vitamins which you can buy from amazon.
Eat a good diet of blackberry and blueberries 🫐 and strawberries and lots of veg and increase your fluid intake each day and take vitamin C.
Research pain there is load of information understanding how to live with long term pain. Any little changes can help you.
Your GP could do more for your illness by looking at different courses out there living with long term illness. The problem is most GP want to give you more painkillers rather than look into helping you to help yourself with extra support.
When I plan to do gardening or shopping I take Tramadol which helps with pain however this only works if I take this now and then. If I took it throughout the day and Continued to use it that way its stop working.
Getting control of pain and your body is a long journey and you are always learning new things .
My suggestion might not all work for you but give some of them a go and see if there is any change after a few months.
I had to build a strong mindset to achieve some of my changes.
the benefits of not taking painkillers everyday have been amazing . my 🧠 brain is back with no more fog. I am Speaking better & less sweating plus Lost a lot of weight.
Feel my energy levels have improved 😌.
My muscles feels stronger and my mindset has changed to listen to my body and keep my immune system in good health. Review your foot wear to support your feet and back. Movements is key to pain and your well being. Of course we are all very different in so many ways. Good luck 👍 keep looking for support from your GP and talking therapist website. All members on this site have an journey of pain and illness so they all totally understand your concerns. Big hugs 🫂 🤗
My psychologist has referred me to a pain clinic and I go to see them at the beginning of Sep. Now when I told my GP this, he made a comment that took me a little by surprise, something along the lines of you don't need that, it's your mental health that needs improving. I didn't like his response to be honest. His whole mission is very my mental health right first but I know it's my health that's causing the decline in my mental health. How can you be happy in life when you're living with constant pain and I also have had type 1 diabetes for 41 years and have complications from that to deal with on top of Fibromyalgia. It was the mental health team who referred me 🤷🏻♀️ I don't think my follow up letters from my psychologist are being passed onto him, they're going to my old GP so I'm going to tell my psychologist to start sending them directly to him instead as I don't know if he's reading them or not.
I would love to get off the painkillers which is what I've said to my psychologist but I'm the meantime is like to get some that work for me and once I find ways to deal with the pain thru exercise etc I will then start to wean off them so that is my final intention so I totally get where you're coming from and agree. I just need to get my pain sorted before I can even think about that I think. I don't actually start physio until December to January time.
I'll definitely take your advise though, it's quite interesting reading your journey and very helpful, thank you 😊
Sounds like your on the path of getting others to sit up and listen. Your body and mindset are all affected by pain and any illness. Stupid GP they get fed up of people like you and me .
We are worth kicking back and showing them underneath all this pain and frustration is a real person trying to survive.
Well done for doing what you done so far. The pain clinic gave me hope and understanding of not feeling guilty for being ill
i started to find me again.
Enjoy the group chats , because you meet some great people who totally in the same place as yourself.
You are never on your own and everyone on this site will understand you. Let us know how your doing 😊 you have already started the ball rolling.
Top lady for doing that there will be ups and downs but who cares its called fibromyalgia. Xx stay safe .
That's a lovely message and means alot to me. This group does really help me and I've made friends with someone who I find very special that I can easily open up to and know they are always there when needed and me for them too. Everyone in this group is amazing too and I feel we are all a little family of Fibro warriors ❤️
I’ve been put on pre gambling put on weight as I’m on steroids and 300 mg of venaflaxine the sweats have got worse on pregabilon and done. Nothing for the pain I’ve phoned for telephone apt And both times she’s just sent anti biopics pphoned. For. Chest infection and again just sent antibiotic I had a run in with doc where we didn’t agrreei don’t usually argue but couldn’t take anymore since then I feel she’s avoiding me I’m not happy because i have Parkinson’s angina and low immune systeem also on steroids which have affected my mood I know I should change doc as no faith in her but don’t know where to go it might be me but I never get to see herr it’s phone call then get prescription delivered by chemist and pphone call never takes place I’ve been so low and left twice with. Urine infection over weekend as something always happens nd don’t get meds on time I felt it was always up medication or new medication I told her I couldn’t cope with it all I was confused in morning forgetful but she seemed not intrested I feel like not going back to any dr there not intrested anyway hopefully I’ll get something sorted out minds just in a whirl alll the time can’t think straight .wee jinty .sorry meant to say I’ve now got itch as well even my scalp drives. Me crazy.
You need to find a new GP pronto. Are you in a surgery where you can choose to see a different doctor? See I'm in one where I can pick which doc sees me and they're joined up with 4 different surgeries and although my original GP was good, he was being way too slow on getting further tests arranged to get me diagnosed and he'd not even done any physical checks so on my next appointment I booked in with a different GP from the same group and I chose him bcoz my brother raved about how much hero he'd gotten from him. It was the best thing I did, as he did all the physical exams that had not been done and 2 other blood tests that had not been done, also sent me for xrays and I was diagnosed at my follow-up appointment with 3 different conditions inc fibromyalgia bcoz all the necessary checks had mainly already been done anyway. My old GP I think was just not wanting to diagnose fibromyalgia, why I don't know. But it doesn't sound like you have a responsive or even knowledgeable GP so move to someone else or at your chat with her, just be strong and say. I'm fed up of being left with no answers you either help me more I go elsewhere.
Bless you Janettewhitelaw, I am so disappointed to read you story about the non care of your GP surgery. I am afraid GP do not focus on there clients anymore it more about the window times and costs.
I feel you should not suffer like this because your doctor has a duty of care if not she shouldn't be doing the job. Please push for a 2nd opinion and see other doctors in your medical centre and in the meantime think about researching other GPs surgeries need you.
The issues around seeing a GP nowadays is a nightmare and I too have had issues so your not on your own. Unfortunately you have to get firm about having a face yo face appointment 😒 tell them a five minute phone call just doesn't work for you.
Your illnesses need to be considered differently because you have more than one issue
Talk to the Practice manager at the surgery and explain the support and help your not always getting and how low this is making you feel. She or he should take your concerns to the doctor and they will arrange a review. Its your rights to ask for this to take place explain how this is making you more stressed out and your mental health is now getting affected with anxiety 🙃. Don't let this carry on its not acceptable and they need to step up and sort you out. Please call them on Monday or call 111 and advise then your unwell and can not get a face to face with your GP they too should help you achieve this.
A very big hug for you 🤗 take care and good luck xxx
I don’t know who. The practice manager is we’ve only got small practice one doctor two mornings a week nine till one a male doctor two mornings a week same time I found out the other day she’s only on line on a Tuesday doesn’t see patients they’ve got another surgery at other side of city about ten miles away would be about £13.00 each way in taxi two buses and I’m scared on the bus I just want her to listen not give me more tablets all the time .
I’m in pain most of the time head neck shoulders tried pre gabilon but piled on weight now I’m breathless couldn’t tolerate the pregabilon not got good tolerance to heavviyeer kind of drugs I’ve asked neighbours about there doctors buttons none too enthusiastic just have to keep looking
Understand your frustration and your situation. There are a few things you could do to ease your pain. Using a warm mat around your shoulder would relax the pain in the muscles. you can buy from amazon or on line . A ten's machine would also help you to ease pain. Also rub warm oils into the muscles to ease pain. Do chair 💺 exercises to take away tension. There's many slow ones on YouTube. Look at taking vitamins for Fibromyalgia which can also help you feel better . Drink more water this also support to ease pain levels. Look at your lifestyle and diet some food can create problems with fibromyalgia.
There so much information on this site which could help you . Take a look and research the recommendation.
Sign on line for talking therapist website in your community they too can help you to support some of your needs.
You need to checked over for your breathing problems because that doesn't sound like fibromyalgia.
Keep strong you will get support unfortunately these days we have to push harder to get any. Good luck get an appointment with your GP to check you over and there maybe an option to talk and explain your situation. Take care x
I take 150mg of Pregablin twice a day. I couldn't function without them. I have terrible nerve pain like hot pokers from ties to groin, fingers to neck and underneath (perinium) to stomach, takes my breath away its so bad. I don't like taking them but have no choice. They work for me and haven't caused weight gain.
I'm sorry to hear about how bad your pain is. There's days I cannot move at all. Have to try and push thru as much as possible though so I need some more pain relief 😮💨
Well the Duxoline (?) is part of the Amitriptyline group, they do cause increased sweating. I rarely take them now as they make me fall asleep anywhere😂so because the nerve pain increased I went on the Pregablin. I once tried Gabapentin but they didn't like me! I also have the 200mg dose to use as & when needed. They may give uou a dry mouth but then that's just me as I react to most meds. I'll eventually have to come off Pregablin as I've no doubt I'll start morphing into a lumpy, itchy mass at some point, but definitely worth trying. Unfortunately, the invention of new pain relief isn't quick enough for me to get something that doesn't cause a reaction!
I'm going to be back on 60mg Duloxetine is another week, just less after coming off the Venlafaxine, but I came off Duloxetine due to profuse sweating but that was when I was on 120mg and I didn't think they were doing so that much with my pain but looking back now, I do actually think they must have been doing something.
I've heard Gabapentin can make you feel really weird and sleepy but I'm fine with that if it's just for a short time, then if it settles ill be OK, if not then back to another plan.
I think it's pot luck with the weight gain but I've put 8kg on since my diagnosisin March and I shot up quite quickly after starting Venlafaxine.
I'll just have to see, I'm doing some research but it's always best to hear other people's experiences on them, hence my post on here.
There seems to be more people taking Pregablin rather than Gabapentin on here so far though so I'm still unsure about the Gabapentin.
Is useful to have your experience in mind so thank you for your responses 🤗
What side effects do you get from Gabapentin? Or what did you get at the start that eventually settled down?
This is information that I'm really after and I would be very grateful to you if you could provide me with your experience of this particular medication.
I have been lucky , I haven’t experienced any side effects with these meds at all
. I was introduced to gabapentin gradually as I take the full dose sertraline ,Gabapentin can clash with sertraline and reduce its effectiveness. Haven’t even had any problems with that - which at the beginning was a worry.
. I can’t compare with pregabalin as I have never been prescribed this .
Sorry I cannot be more constructive.
Overall my experience with gabapentin has been a good one so far , the only real problem I have is its effectiveness with the pain however it’s better than nothing .
No this is great info. Tbh I really wanted to know more about Gabapentin than Pregablin really, I should have made that more clear I think. Thing is, I've heard from a lot of people that Pregablin is a weight gainer and given I've already got medication weight gain, I'd rather stay away from anything else that's a given in that department!
You've definitely given me info I wanted so thank you 😊 I really appreciate your help.
I'm nearly 80 and have been on pregabalin for about two years. It helps my pain from compression fractures (that have overcome the pain from fibromyalgia) and it helps stop my bladder from waking me in the middle of the night, so I get to sleep and stay asleep. The problem with that drug, so far as I'm concerned is if I run out of it. The withdrawals are nasty, but I keep on a moderate dose, with no extra dose in the morning. It suits me, and I have read that people who don't get on with it get on with gabapentin, and vice versa. I have lost weight but that probably has nothing to do with the drug. For more pain, I take Tramadol at night or Zapain during the day. Normally, though, it's paracetamol. I hope this helps.
That's very good information that you've provided. Especially the part about how it can affect others but they are good on Pregablin. I'll definitely look into this with my GP in September x
hi, i've been on pregabalin on and off since 2019. i say on and off but that's only because its been a struggle for me to get an appointment with my gp to get the prescription refilled! i havent had any since about 2022.
i personally had no weight gain attributed to the pregabalin specifically, it was just caused by general inactivity during lockdown. i think my blood pressure went up a little bit on pregabalin, but my bp's always been on the lower side anyway so that wasn't a big concern for me - it just brought me closer to "normal" pressure.
pregabalin has been the only painkiller that actually does something about my pain, and i wish it was easier for me to sustain my prescription (being a controlled drug in the UK, you can't get it on repeat, and you can't get it delivered). over the counter (paracetamol, ibuprofen, and weak codeine) only really brought my pain down from a 9 to a 7. i had a bad reaction to naproxen (bleeding from places nobody should bleed from) so that was a no-go. i was put on pregabalin instead of gabapentin as pregabalin is said to be gentler - my gp specifically said gentler on the gut but my research lead me to believe pregabalin is less aggressive side-effects wise all around. pregabalin took my pain from a 9 down to a 3 i would say.
i started on 3 doses of 25mg a day which gave me about the same relief as OTC painkillers, and at my peak i was taking 150mg in the morning and 100 or 150mg at night. i had to up my dose slowly because big changes made me very dizzy within an hour of taking the dose. whenever i'd been off for more than a few weeks i'd have to start again at 50mg twice a day and slowly work my way back up to the 150+100 i was at before. my dizziness would last for at least half an hour, sometimes as long as two from what i remember.
most of my pain is nerve based, so paracetamol/ibuprofen/naproxen wont touch most of that - they're only really good at tackling the inflammation that comes after my nerves have been aggravated enough. i think a GABA painkiller might be worth investigating for you, especially if you aren't getting relief from NSAIDs like paracetamol, ibuprofen or naproxen. i have no experience with duloxetine or venlafaxine unfortunately so i can't compare it to those, though i can sympathise with the struggle of your doctor being convinced your pain solely comes from your mental health!
i hope you can find something that helps you soon.
Sorry I didn't reply yesterday I was really tired. I can't take NSAIDs anyway, I think I know where your bleeding comes from, I could not tolerate Naproxen or Etadolac and that's how I ended up on DHC but I'm tolerant to that now and supposed to be weaning down but it's been halted that plan until I get a pain relief that actually works for me as there's no way I'm coming off that until I'm on something else as Amitriptyline doesn't work on its own.
So I was wanting to try Gabapentin but it's good to know that you're saying Pregablin has less side effects so I'll bear that in mind.
Thank. You for your response it's been really helpful.
Can I just ask though, when you couldn't get your script, did you not start going thru withdrawal effects?
for withdrawal symptoms: i think i largely managed to avoid them by lowering my dose gradually when i got to my last 3 or so days worth of a full daily dose. my gp was happy with this strategy, especially when lockdown kicked in and made it hard to go in for an appointment/pick up my meds.
instead of taking my usual 150mg in the morning and then 150mg or 100mg at night, i would go down to 100mg twice a day, then 75mg twice a day, then i'd stay on 50mg twice a day until i ran out completely. 50mg was enough to keep the worst of the pain away, would buy me some extra time to see my gp before i fully ran out, and it meant i was less likely to need a slower ramp up back to full dose once i had it refilled.
i would sometimes also lower my dose a little bit if i had a big activity day/week coming up, even if i had more than 3 full days of full dose. i would do that just make sure i had enough to cover me during the activity and rest period after when i'd normally flare up.
i would say the biggest thing i noticed once i was fully off them was my pain would feel more intense for a week or two, which i assumed was more just because i wasn't used to the pain by that point rather than being an actual increase in pain. pain-related effects like brain fog and stiffness/inflammation would also be more obvious during the fortnight after i'd stopped, but all of that would level out to my "normal" pre-medication levels after that time.
i was on the pregabalin consistently for about 2 years before i had any breaks longer than a week, and i'd probably spent the first year and a half slowly increasing the dose for a month at a time. so perhaps it's possible that i wasn't really on a high enough dose for long enough to experience any major side effects when i came off it, or perhaps the weaning down strategy was enough to reduce any withdrawal effects i might've had.
if you're worried about addictiveness due to it being an opiate, i regularly forgot to even take mine (and i'm pretty prone to addiction!) perhaps that's another perk of pregabalin specifically. from my understanding, gabapentin is basically an "active" opiate which your body uses directly, whereas pregabalin is an "inactive" opiate of sorts that your body breaks down into an opiate (which, i believe, is why pregabalin is generally more gentle)
Oh I see, I didn't know it was an opiate as I'm already on an opiate, dihydrocodiene which I'm trying to wean down as they want me to come off it now that I've been on it long term. Would Pregablin not help me reduce the dihydrocodiene then? Or the Gabapentin as that's not opiate?
I think I need to speak to my GP further about this when I next see him as he didn't rule it out, he just wanted to give me more time on the antidepressants but I don't want them, I know once my pain levels are reduced. My mood will improve without antidepressants being used.
I would suggest seeing a good naturopath and look at doing gut health tests like GI Map test and OATS test.
It’s possible H Pylori or gut disbiosis is causing a lot your issues. I’ve noticed this from my own experience with CFS/Fibro and reading others experiences with gut health having similar symptoms or issues. I am treating these naturally which has been slowly improving my health. The Naturopath told me it takes time to heal and can take months using natural remedies. However, it is healing the root causes of the problems and not just using prescription medications on top of prescription medications to simply put a bandage on the symptoms.
I've got diabetic gastroparesis so I do have trouble with my guts anyway, my nerves don't work as well as they should done so I don't digest food as quickly as others and that results in a lot of nausea, the runs, vomiting when it's at its worst so I take anti sickness tablets amongst laxido which keeps me moving more regularly.
pregablin for me is a miracle.. i just take 100mg before bed.. I sometimes take 50-100mg in the morning too, Obviously different people have different outcomes, Good luck
Unfortunately fibromyalgia is very difficult to treat. I’ve had it for literally years and tried all the suggested treatments and drugs and nothing really worked so I made a decision to come off all the various drugs that had been described with horrible side effects snd just stick to simple painkillers. I found that the drugs I use to take actually made things worse and coping with side effects increased stress levels which made fibromyalgia worse. Have you tried relaxation therapy? It can help but fibromyalgia may not be curable. I have good days and bad days and have to adjust accordingly. I’ve also had two compression fractures in my spine due osteoporosis. Still waiting to get an appointment at the osteoporosis clinic which my doctor referred me to 9 months ago. I suffer from migraine too. Doctors can only try different things and drugs to see if they will help. Some people are lucky and do get some relief but others don’t. Yes it can affect our mental health but thankfully I’m a retired counsellor who helped people with mental health problems and taught relaxation therapy. I’m also lucky as I have various interests and play piano and I find using distraction techniques can help. Yes constant pain can be very hard to deal with and you may have to find alternatives to drugs or keep things simple. Have you been referred to a pain clinic?
Yes I've been referred to a pain clinic finally by my psychologist and I have my 1st appointment beg September. They will be looking at starting physio possibly around Dec/January time.
I would just like something tidy works for more at least, I feel like I've been in a constant flare for weeks. I also suffer with lumbar spondylitis and migraines so there's always something going on.
Hopefully the pain clinic will help but I'm just scared they I have to go there in person as I'm very anxious about going places I've not been before and I'm not good at talking about my health, especially to people I don't know. I have fear of speaking to people face to face now.
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