Update: After writing a letter of... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Update

Louise-ash
Louise-ash

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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47 Replies
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Thats good you got pain meds back ,

You are still on too high a dose im sure ,i would phone surgery and ask why you are getting 900mg a day

Even fibromyalgia is recommended at 450mg per day

Hidden
Hidden in reply to Ajay575

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

Louise-ash
Louise-ash in reply to Hidden

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.

Hidden
Hidden in reply to Louise-ash

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?

Pregrablalin doesn't work for me I am o 140mg of oxycodone

Yeh it does not work for lots

Oxycodone i have never been offered that either i will keep tgat in mind as well to suggest to doc if pregablin dies not work

Hope it is helping you

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

Ajay575
Ajay575 in reply to Louise-ash

No far from it

You should be giveing other pain relief along side the max dose of pregabalin

You said you where on 1200mg at one time that is too high and if anything happened dics have left their selfs open for medical neglect

Your surgery could be a drugg addicts paradise with those doses going out

Louise-ash
Louise-ash in reply to Ajay575

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!

Ajay575
Ajay575 in reply to Louise-ash

I would be carefull with those doses

And i would still phone doc and quiery them though

Louise-ash
Louise-ash in reply to Ajay575

I only spoke to the doctor yesterday. We agreed temporary until the pain clinic have seen me again!

Ajay575
Ajay575 in reply to Louise-ash

I would still advice tread carefully

Something does not sit right

Jacjai
Jacjai in reply to Ajay575

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??

Hidden
Hidden in reply to Jacjai

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

🐼🥰💜

Jacjai
Jacjai in reply to Hidden

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😊

Ajay575
Ajay575 in reply to Jacjai

Wot a nice reply and you got the points as well

I am staggerred that the gp gave 1200 mg and 900mg as i thought very dangerouse as well

I will keep in mind about the duloxetine in future if i come off pregablin

Glad your pain has halfed for you with the duloxetine, hope thats helping you ,

Have a nice day ahead

Jacjai
Jacjai in reply to Ajay575

I did get your point across and had to reply😊

Thank you🤞

That's excellent news. You have to be tough with doctors otherwise they think they can do what they like. 👍

Thank you

Hidden
Hidden

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

Ajay575
Ajay575 in reply to Hidden

You are missing the point

Hidden
Hidden in reply to Ajay575

If you say so

Ajay575
Ajay575 in reply to Hidden

Pregablin controlled drug max dose 600mg per day 450mg recommended for fibromyalgia

It is a dangerous drug high dose

The poster asked for high dose i e

900mg and even had 1200mg which is a red flag and dangerous levels

Lots or most surgerys would withdraw it immediately

There are drugs to go along side pregablin max dose

If this surgerys is giveing this out in those doses im pretty sure drug addicts will latch onto this and this doctor tgats hiw it worjs on the streets this is also how it is a controlled drug now

It is wot it is

I have gave my advice

Hidden
Hidden in reply to Ajay575

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

Hidden
Hidden

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

Im not being rude

Move on we have different opinions and points on this and the safety of the administration of the drug best to move on

Louise-ash
Louise-ash in reply to Ajay575

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

Ajay575
Ajay575 in reply to Louise-ash

Thats understandable

You have had theses doses long term

Must be allowed im assume

Hope it helps

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.

Louise-ash
Louise-ash in reply to CM1EDSUK

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

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.

desquinn
desquinnAdministrator in reply to MaggieSylvie

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.

Hidden
Hidden

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 🐼🥰💜🌈

Ajay575
Ajay575 in reply to Hidden

Well said panda yes

myself i only was only concerned about overdose

No malice 👍

Hidden
Hidden in reply to Ajay575

☺️🙏🏻💨

Whatever happens or doesn’t happen it’s nice to know there is support out there from people who understand

Thank you

Hidden
Hidden

☺️🙏🏻

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?

desquinn
desquinnAdministrator in reply to Cat00

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.

Hidden
Hidden

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)

Ajay575
Ajay575 in reply to Louise-ash

I do understand and we put trust and faith in gps etc and mostly do not question them

I more on the questioning the gps giveing this dose

Very pleased for you. Well done! I have just been increased to 1800mg per day as 900mg didn't work sufficiently.

Ajay575
Ajay575 in reply to Maud-ie

Are you not meaning gabepentin ?

Im sure gabepentin is max dose 1800mg

And pregablin 600mg

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

Hidden
Hidden in reply to Mich19

Hi Mich, if you start your own post more people may be able to help and respond directly to you gentle hugs 🐼🥰💜

desquinn
desquinnAdministrator

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.

The ability to reply to this post has been turned off.

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