After writing a letter of complaint to my gp I have now had my meds put back to what they were until I see the pain clinic!
I couldn’t of got better news. I start back on 900 per day of pregabalin!
Thank you all for the support I had through that bad period
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That’s obviously the dose she needs to be on to control her pain
It is all down to the individual, her doctor was fine before her being on 900mg remember everybody is different
It is too high a dose and both the doctor and myself agree with that but being reduced gave me no quality of life. It’s a temporary thing until I see the pain clinic.
Fair enough. I think sometimes we have to be on high doses not because it’s what we want but because without it what is life?
Everyone has the right to their own opinion but for me, I don’t want high doses of meds. I don’t want any meds but life is nothing but agonising, debilitating pain without them!
It’s nice to be able to cope but I’m not doing! We are all different and have different needs and maybe I’m wrong but by you disagreeing, I get the feeling you can cope well! I wish I could
I asked for that!
I’m not even disagreeing with you. My old doctors surgery did me a dis service and they were wide open but I can’t change that. I just need to try and get something that will give me the relief I need to have some kind of normality!
I felt like I was listened to yesterday which was the 1st time since I was diagnosed 6-7 years ago! Hopefully for me this is a good start!
I only spoke to the doctor yesterday. We agreed temporary until the pain clinic have seen me again!
That's excellent news. You have to be tough with doctors otherwise they think they can do what they like. 👍
Thank you
That’s your choice but if I was on a lower dose of medications and I wasn’t living then what’s the point? Life in pain life in agony isn’t a life. I would rather be topped up with medications to live my life as best as I can
If you say so
Many years ago i was on 600mg and it did no damage to me.
From a drug addict point of view yes it can encourage that side of things and this we never wish to happen. Addiction to prescription drugs can obviously kill
Right now it is what it is for the lady, she knows her own body and if doses are to reduce it needs to be down slowly, I imagine any strange prescribing going in by doctors is monitored and investigated anyway
I didn’t ask for the dose when I was originally given it. I was in pain and was given 1200. When I changed surgeries I was told the dose was too high and was reduced to 600
I struggled for a few years on this dose until a doctor who had just finished a pain management course said and I quote “under certain circumstances a higher dose can be given and I believe u fall under this criteria” hence being put on 900!
If you think I want the high dose then you’re mistaken. I would want something to replace it but according to the many doctors I have spoken to, there is nothing that I personally can take! This is not a long term prescription and I would rather be pain free but I’m not and if taking a high dose means I can function enough to be a mum then I will take it
I wonder if you looked at the resources I gave from the Physiotherapy Pain Association? Please see: ppa.csp.org.uk/content/link... I do hope you might look into these. I'll not belabour the point, as I know you want to reduce your meds once you get your pain under control, that's why I gave the above link, hoping it might help you.
I am concerned, as I believe Ajay is also, & I certainly agree with him, so hopefully you will be able to reduce your pregabalin asap. Perhaps, just perhaps, you might find some of the resources in the link I gave helpful; surely worth a try.
I haven’t said I don’t agree about my meds being too high. I just said that to have my meds reduced it affected me in every aspect of life. I was left with no life and as a single mum, I need to be able to function even if it’s a minimal function!
I’m also not a doctor and I trusted the doctors I have seen. If I have been prescribed too high a dose that was on them.
I had meant to look when I 1st saw the response but being honest it slipped my mind (I don’t have a memory). I will do it now. Thank you
I was on 600mg, kept creeping up from 150mg to 600mg within the year, I decided to wean off them as they weren't doing much for the pain, the withdrawal was horrendous, 4 months in all it took and will never start them again.
600mg was the maximum to take in one day, I believe my body was craving for the pregabalin and that were the pain I was having not from my fibromyalgia symptoms, since Ive came off them and started on Duloxetine my pain levels has halved, I would never recommend pregabalin and if you take the maximum 600mg dosage and still in pain clearly they are not working, I do agree with you it way to high to take that amount in one day.
I did ask my doctor before weaning off the meds if I can take more than 600mg a day and he said no it too dangerous??
I had exactly the same experience Jacjai I ended up on a very high dose i have actually read that your body will crave Pregabalin like a drug addict needs another dose of crack cocaine.
This was probably the worst experience of a drug that I ever had and the withdrawal was debilitating vomiting, shivers, stomach cramps and really wanting to take it to take these feelings away. On the black market these drugs along with Gabapentin are currently sold at £10.00 a tablet the contents are then snorted it has the same effects as cocaine think that says it all.
Panda
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I think it trial and error with these medications, doctors does not explain the effects of coming off these types of meds, since being diagnosed with fibromyalgia I have to educate myself and Google most medications if I'm been offered from my doctor, it took me weeks to start on the duloxetine when my doctor offered to try them, I read reviews for weeks I was so reluctant to start but on the other side of the coin I was in pain especially my left shoulder and arm, kept me awake for weeks and I became desperate and exhausted, I decided to take them started on 20mg and gone up to 60mg, I'm trying to stay on this dosage for now as it has made a difference but the shoulder still is painful but managing, been to physio and she said that I had frozen shoulder and my fibromyalgia was unrelated but I'm not convinced.
Take care😊
It seems everyone has an unasked-for opinion. But there's no need for the kind of bullying that's going on. Your dose may be too high but that is between you and your doctor. We are all different - patients and doctors. Enjoy your life as best you can Louise.
as one of the admin team disagreeing is not bullying and when it is a concern for someone having an incorrect dosage then that is support. Other forums do not allow dosages of any kind for this reason.
You said "It seems everyone has an unasked-for opinion" but if you are posting on an online forum you are asking for opinions from all the members whether they agree with you or not. But there is a right way and wrong way to all things.
Also doctors have been wrong so it is useful to have a questioning mind and validate things.
Sorry I just needed to say and hopefully defuse things, opinions are like bottoms everyone has one so whether it’s right for you or wrong for them or wrong for you right for them it’s just an opinion it made me feel sad that people are getting heated, so let’s all just agree to disagree.
Let Louise who has probably taken and digested everything everyone has said make her own decisions and make her own actions you are all right.
Please take this in way it is intended with no malice because we are ALL going through a hell of a lot. I would have tagged everyone but I don’t know if you can even do this so just tagged this onto AJAY’s reply.
Love 💕
Panda 🐼🥰💜🌈
Whatever happens or doesn’t happen it’s nice to know there is support out there from people who understand
Thank you
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☺️🙏🏻💨
Disagreeing with someone is not bullying, it's disagreeing. You can't say unasked for after something has been put something on a public forum, what other reason is someone posting other than for opinions from others? Plus the OP doesn't even disagree with the comments, so it's not even disagreeing really?
I would also hope rather than calling someone out for bullying (if that was their opinion) then they would report it to the admin team so we can have a look at it. But Cat00 is correct that disagreeing is not bullying and disagreeing to help someone when they are in the wrong or danger is support rather than bullying.
I am sure the OP is more than capable to question their medications with their health professionals and do the best thing for them. We are all different with different tolerance levels and medication experiences
Everyone is commenting on their own personal experiences and that’s all we have to go off. There has been things in every comment posted that I have agreed with and some that I may not!
We all have different pain levels, different ways of coping and more importantly different doctors!
My naivety was to accept what I was told without question. I put full faith in those meant to help me and this thread has made me realise that was wrong of me!
I can’t change what has been done but I can try and be less naive in future. (Big ask of myself)
Very pleased for you. Well done! I have just been increased to 1800mg per day as 900mg didn't work sufficiently.
Pregrablalin doesn't work for me I am o 140mg of oxycodone
Hi all I am new to this page I was told I fibromyalgia is year and I am finding it very difficult it runs in my family and I got 8 children and I am very worried about being put in a wheelchair can someone please talk to me about it
Hi Mich, if you start your own post more people may be able to help and respond directly to you gentle hugs 🐼🥰💜
I am going to turn off this thread as it has went as far as it can. The OP is comfortable with the advice they have been given and has been given information from others. It is there informed choice.
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