Hello everyone
I’m after some useful tips as my gp has decided to reduce my pregabalin dose by 300mg. I was in constant pain on the dose as it was and with the reduced dose I have had to get help from my older children (my daughter took time out from her uni course) to help me as basic living is becoming almost impossible
Hi, wow this seems unfair to just reduce your dose. Did they give any reasons?
The dose I was on was too high.
I was taking 900mg a day. They are reducing me by 75 daily on a month by month basis until I go to 600mg
I’m barely functioning on 825 and I’m a single mum to a 13 year old
I really don’t know what to do
Did you explain this to the doctor? I would personally go to see another GP to be honest. I do not think any doctor can dictate and force you to reduce your medications. They should advise, but ultimately it is the patient who does know how they feel. Are you on any other medications? Will this decrease affect your work as well?
I couldn’t work as it was. I am also an agoraphobe!
I will be getting a written letter of complaint sent to the gp but I was told I’m lucky to have the option to be reduced and not just stopped. I need an appointment with the pain clinic before they will give me anything
This will be my 3rd referral there so I don’t have much hope
I did try reflexology which helped but not for longer than a day! I can’t afford to have it done as often as I need
I'm astonished at the doctor for saying that to you. As far as I'm aware, it's not advised at all to stop the medication 'cold turkey' yet he's using that to scare you.
It worked!
Hi Louise, your doctor is a rat for scaring you like that. He should be ashamed of himself. You could remind him that when starting Pregabalin you have to start on a low dose then increase and to come off it or reduce dose, it's to be done the same but in reverse. If your meds are working, why not leave you on 900mg. You would end up going through withdrawal and have a really bad time, pain from Fibro. I've experienced withdrawal, and it's not to be mesued with. I'd forgot to do a repeat prescription over the weekend. With in no time I was in withdrawal and the headache was so bad nothing like I'd experienced before and not like a normal headache, I really got ill quickly.
Your doctor hasn't got your best interest at heart I think and certainly not caring, can you change doctors Louise-ash?
I know there's been a big push to reduce meds from research in America.
I had a horrible Doctor in pain clinic and he tried reducing my Tramadole . Their's definitely a push to reduce with Tramadole . If some GPs specialise in a condition they get about an extra 30 or 40 grand. I remind them sometimes, that GP stands for general practitioners, so just practicing on me!!!
You take care now and all the best with your pain clinic hun.
Bev ♡
Thank you
I looked for a surgery near me where there was a pain specialist but no
There are none round my area.
I just hope the pain clinic can help me this time round!
Pull me off pregabalin all they want but give me something else. That’s all I ask of them!
"I do not think any doctor can dictate and force you to reduce your medications"
You have this round the wrong way. The doctor is required to justify to himself, his practice and his regulator if required that the medication the patient is on is correct and adequate. This duty could be the reason that they are seeking to reduce it.
The patient is able to seek a second opinion but the signature on the prescription is the doctors as they are liable for the judgement and the care. By your logic of the patient is in control then patients would be ok to double doses beyond safety limits and overdose. This is of course not correct.
I think there has been a misunderstanding somewhere. I know why they are reducing and I fully understand that. What I don’t understand is how they can leave a person with no quality of life when there is surely something that can be done as an alternative medication
Sorry I meant to leave a reply directly to you as well but phone call distracted me and had to head out 
I think it is best to have a chat with them about the difficulties you are facing. If you are on that high a dose and it is not working for you then the reduction to maybe change to gabapentin or some other medication is where they are heading.
Hi
Sorry to hear this.
Have you tried to top up with paracetamol?
Is there a reason they reduced it? Or did they look for another medication to top up on the Pregabalin?
Hot baths will help with pain with some lavender bubble bath.
Herbal teas.
How long ago was you diagnosed with fibro?
Have you been referred to the pain clinic? They can really help you with managing your pain.
I hope you get some respite soon.
Keep well if you can
Sending hugs 😊😊
Thank you
Dose was too high
I take paracetamol 4 times a day and I’ve tried hot baths. They do work but as a single mum, I can’t spend my life in 1 unfortunately
I was diagnosed almost 7 years ago and at that time I was prescribed 1200mg pregabalin a day. I got a new gp when I moved and they just don’t seem to be helping me!
Pain clinic for the 3rd time is my next step as they won’t give me anything to replace it. I’m literally being left until I can get an appointment with pain clinic
I think it is unbelievable that doctors do this and leave you in pain. I would be fuming. Can you even have a phone consultation with another doctor in the mean time?
I really don’t know what I can do. That’s why I joined here. The doctors at my surgery are not very good with my pain it seems.
I tried explaining my situation and how it affects my son as well but I was met with a very firm option of reduce or they just stop it
Totally gobsmacked. Some doctors are so dismissive. In the meantime have you ever tried anything non medicinal? Any holistic therapies for example? Just trying to think outside the box.
Reflexology but I can’t afford that for as often as I would need it! I’m totally at a loss right now and my mental state is shot! I’m hoping to feel better tomorrow mentally so I can deal with it better
I have just bought a gravity blanket which arrived today - but I don’t have the strength to carry it upstairs 😢🙄🤦♀️ !! When I try it I’ll have to let you know how I get on xxx 😘
I really feel for you.
I have had ME for nearly 30 years and was diagnosed with fibro too in 2016.
In my experience you do get pushed from pillar to post seeing so many doctors and medical people.
Some are sympathetic but others just move you through the system.
I hope you do get the attention you deserve very soon.
Pain clinic have been a godsend to me. They did accupuncture, sent me to mindfulness, hydrotherapy....didn't really help but when floating in water i got respite from pain.
I had a fall last September, i was in agony and pain clinic sent me for MRIs so got everything i could possibly get from pain clinic and am getting telephone appts now.
As you are under a different GP hopefully they get you an appt very soon with pain clinic. They really do care about us people with invisible illnesses.
Hope you get some help very soon.
Good luck & stay well if you can 😊😊
Just remembered i think you can re-refer yourself to MSK after finishing your treatment with them..... hope that still applies now but best to check first.
At least then you can bypass GP and they will help.
Good luck 😊😊
I saw a specialist when I got my diagnosis. That’s how I got such a high dose of pregabalin at the start. Unfortunately my situation is different so I can’t afford private. Can I just self refer thru the NHS?
I know i was given a self refer form a good while back for MSK through NHS.
Not sure if you can still do it with covid at mo but worth googling to find out.
Will have a look myself 😊😊
Have just checked self refer out. You can do this in a lot of areas.
Please check in area that you live.
I just put self refer to MSK and it gave me all info i need.
Def have a look 😊😊
Thank you. I will look in the morning as I don’t like to take time away from my son if I don’t have to. He’s my light thru all this
Yes children are a godsend.
My son is now 32 and no longer lives at home.
He is a wonderful human and so kind and caring. He was very young when i was diagnosed with ME and had to give up working.
He kept me sane as we spent so much time together reading, watching tv and lots of cuddles and fun.
When he went to junior school we were lucky it was just across a quiet road. Before he left for school he would help me so much.
He still txt everyday and facetimes every few days.
My husband worked very long late hours so it was pretty much me and my son.
I hope your son grows up like mine and is a delight to you all the time.
Enjoy your time together.
God bless you both 😊😊
I have a son who’s 23 and both him and his girlfriend have come to visit and help me the last week! My daughter who’s 18 took some time off from university to help and my son 13 helps me before and after school as much as he can!
He is also lucky as his primary and now secondary school are very close to our home
Glad to hear you have a caring family it makes all the difference.
One less thing to worry about if schools are close to home and they can there themselves.
Let us know how you get on 😊😊
Family is so Important and I’m lucky like that. I also am very good friends with my little boys dad. He helps me out a ridiculous amount. I just need to take the edge of this pain. I will update you when I hear something. Thank you
Stay safe and well
Unfortunately the only family i have now are my husband and son.
My husbands family are really nice but i don't talk about my health issues with them. They know a little bit but not everything.
I do have a young lady next door that grew up with our son and she is like a daughter and she helps a lot when she is not at work.
We do have loads of friends between us but they are not local and have their own lives and i only confide with one but she is caught up with her grandchildren now.
My husband is wonderful and helps as much as he can when not at work. He now does all our shopping, picks up my medication and puts it all in my pill tray.... there is a lot 😂
He was in the army so he is very domesticated and does most that needs doing but he still cant get his head around the washing machine programs 😂😂
I am very lucky with those few people i do have.
Take good care and stay well yourself 😊😊
I’m being referred for a 3rd time to the pain clinic
I did hydrotherapy and the water eased it until I got out and I was in more pain after. Something to do with having hyper mobility and my joints move more than they should!
Reflexology is a godsend if I can afford it but it’s not an option right now as I would need it multiple times a week!
With me being agoraphobic, it makes it difficult to go to places I’m not familiar with
How are you now? Hope you are well! I’m glad you have medical support. Makes a huge difference
Oh bless you
i was born with hyper mobility, known then as being double jointed....
It was wonderful when i was a child as i was very good at most sports especially gymnastics.
The downside....not so good when you get older 😫😫
I was the same with hydro and was really sluggish and tired for days after.
I am currently having a very bad time with colitis which affects fibro and ME all the time. I cannot remember the last time i slept through the night or even ventured outside.
I am very lucky that i have help from pain clinic but my drs are worse than bad. I only have a rapport with one dr but he is helping at another gp surgery doing phone appts so not even going to bother ringing GP.
I have a gastro appt 15th Dec so will wait until that.
I do try to stay positive and keep strong as my mum used to say that all the time.
So i am sitting on my sofa talking to people on this site as it helps to know we are all dealing with the same thing and we are not alone.
Sending hugs and hoping you get help very soon 😊😊
I did try and explain that as much as I understand my meds may have to be reduced, they should try and understand how that will impact on my pain and asked for something else
I was told they can’t offer me anything until they do a referral to a pain clinic and I have my appointment
I get pip and they should only be giving me 600. I started on 1200 which was halved with the gp I’m with now. It was increased within the last year by a doctor who had told me under certain circumstances they can prescribe more than the recommended 600! I’m not medical to agree or disagree with the ethics involved. I just know that a person should not be left in pain when there will be an alternative. Even if it’s a short term alternative whilst I await the pain clinic referral/appointment
When I found out the max dose was 600 I was amazed. I had taken that dose for a couple of years.
I can’t take gabapentin. Similar to pregab but they don’t agree with me.
I am writing a letter of complaint as there are many options I’m sure. Just need to find the right 1 for me
Surely a doctor should listen if they are trying to reduce your medications when you are in immense pain without the medication and your quality of life takes a dive?
That’s why I need to do a letter of complaint. She did say she’s sorry about the pain but until she does my referral and I’m seen by the pain clinic (again), she can’t do anything as her hands are tied
Hmmm I would question why her hands are tied. I could just not be left in pain like that. I feel so so sorry for your predicament
Apparently she spoke to a partner at the practice. I will be taking it further I have just been knocked sideways as it happened today
Please keep us updated, we are all here to support you the best we can
I will do. Thank you!
Hi Louise-ash - I'm sorry to read you are in so much pain. As you understand, & has been mentioned, 600mg of Pregabalin a day is all a Dr can usually prescribe for usage of this drug for non-epileptic problems such as pain.
You have also mentioned hypermobility, something I'm all too familiar with, as I have the hypermobile type of Ehlers-Danlos Syndrome, & Drs don't really know why we're in so much pain.
Currently I take 600mg of Pregabalin a day, & all it does is take the edge of things, as I also have neurological problems. What I have learnt to do is look at other non-medical resources in order to cope/keep battling this everyday pain. Perhaps this might help you too. Unfortunately there's not always an immediate response in trying these, & it can be a bit of trial & error to find out what will work for you. Often it can be a combination of things that may help, e.g. I use gentle exercise, pacing, distraction, a breathing exercise, & mindfulness.
Here's the breathing exercise for when the pain gets too bad, but try & practice it when you're hopefully feeling not too bad to get the hang of it. Please see: guysandstthomas.nhs.uk/reso...
And here is a list of resources from the Physiotherapy Pain Association: ppa.csp.org.uk/content/link...
From the same Physiotherapy Pain Association, some gentle exercises: ppa.csp.org.uk/content/keep...
You may wonder why I've posted some physio resources; this is because I am a physio, & know such things can help. I'm now on the 'other side of the fence' so to speak, & know without continuing to exercise I would be far worse off than I am. I now practice daily the first link I gave to a relaxation/breathing exercise, which helps reduce stress & subsequent increased pain.....an exercise I used to teach!
Please look into these.....something you can try at home. Hope some of this helps.
Hi Louise
I had exactly the same problem as you I had no relief on a very high dose and the weight was piling on so decided being obese (doesn’t help with my pains) and still in a lot of pain I would stop my pregabalin (don’t ever do this the withdrawal was the most horrendous thing I have been through). I am now on 50mg twice a day along with other meds I am back to my normal weight but still in a lot of pain but it slightly takes the edge off my neuropathy to the point that I can function with help.
I really hope you get some answers.
Panda 🐼 🥰
That was brave. I couldn’t stop my pregab. It takes the edge off enough so I can leave my bed. Without it I would be confined to a bed day and night!
I’m happy with manageable pain. Not happy but ok with it. I just wanna be a proper mum! I don’t think that’s a lot to ask at all!
I know exactly what you mean I know it’s easy to say but please don’t be so hard on yourself you have so much to deal with. 🐼
That’s the kind of response I would get from my 13 year old!
Thank you. The words mean a lot
Then you have a very caring child 🥰
The reduction amount of 75mg day is too high.When I was on 450mg I was told to reduce and that was 50mg day til taking 350mg .Your body gets addicted to these pain killers and objects very badly when reduction is done. I couldn't function ..I couldn't stand up and was sick.My husband had to take me to the toilet. A kind gp gave me a reduction plan to reduce by 25mg every other day on morning dose then next week same with evening dose week later every day at 25mg reduction.It was side effects.This was repeated to 50 mg.It needs to be done gradually so your body can accept this
Hope this helps
I asked for 50mg reduction at a time. She said she will speak to me in 2 weeks! Hitting a brick wall but not for long as complaint will be done and sent in by tomorrow
Hi. GP's are hopeless. I take 3 x 300mg Gabapentin per day and it doesn't work nearly well enough. I then top up with cocodamol (which GP rations grudgingly like heroin!!!). Cocodamol makes my constipation worse which then makes my lower back and leg pain worse. Very lonely and frustrating.
Unfortunately GP's have to follow NICE guidelines and 600mg is max dose for Pregabalin. Gone are the days they can deal with people on a case by case basis. Hope you find something else that helps you. Pain can be soul destroying can't it? Just for info - has your 13yr old joined the Young Carers group? They go into schools and offer free bus pass for them which is a godsend. Also do trips away & days out (pre Covid!). Take care
He’s with young Carers but he’s 1 of the eldest there.
Days out would be nice if I wasn’t agoraphobic and if the pain allowed. I’m barely able to move round my 2 bed flat unaided
Thanks tho
I was told that stopping a pain medication can make your pain worse for awhile. Even adjusting your dose down might take time for your body to adjust. The reduced dose could be involve a withdrawal from the benefits that Pregabalin provided you. Specifically, Pregabalin works to reduce the release of neurotransmitters such as glutamate. A lower dosage will let more glutamate and other neurotransmitters into your system. And I believe that will make the pain worse for awhile.
My doctor would tell me to "wait it out" or "take acetominophen" until my body adjusts. Thankfully she hasn't done that yet. I only take 300mg of Pregabalin a day, 100mb 3 times a day. But I have other pain meds I take as well.
Hi all had a great day out in the sun
Dr gave me great news, biopsy report all OK
I'm thinking of starting a support group,any advice would be appreciated.
my doctor is no help at all
New to all this please help
