Medication and useless doctors

[Thom75]

Hi all I have just been placed on pregabalin 2x 25mg a day for my fibromyalgia which seems very low for the condition and it is having no effect, all doctor said was let me know how you get on! with no advice on whether to up the dose over time!! Does this seem right or are they being dismissive as usual? Thanks for your time Nikki

[desquinn Partner Volunteer FMAUK Trustee]

No they are not being dismissive or useless but taking a balanced approach. A lot of people can have side effects that occur in first 30 days or so and this stops people giving the meds a chance so they need to taper it. Also it takes time to build up in your system to take effect,

[Yassytina FMA UK Volunteer]

I agree with Desquinn s reply , if it’s any help they normally give you time for medication to settle @normally they adjust after about 2 weeks (just advice from my own experience over the years @ family members ) very frustrating I know we just want to be able to carry on day to day with some kind of relief , perhaps phone your surgery for any advice as normally you can ask for a call back at the end of surgery from your doctor, take care and let us know how you get on xx

[Thom75 in reply to Yassytina]

I know I sound very negative towards the doctors but it was the first time I had contacted them in nearly two years because of misdiagnoses of a collapsed lung and cock up with tablets before. My phone appointment felt like I was being fobbed off less than 5mins and when I read that the minimum dose for fibromyalgia was 75 mg 2/3 times daily that made me angry but then pain can do that I suppose. Thanks for replying Nikki x

[Jaxie64 in reply to Thom75]

Hi Thom75 I have been on Pregabalin years ago. I remember that I started out on a small dose, and after some days, the dose was steadily increased every few days until I was on quite a high dosage. It just takes time for your body to adjust I think.

[Yassytina FMA UK Volunteer]

No not at all, I’ve been down the road like so many others of feeling frustrated honestly, I had a doctor for along time who really was very nice but had no idea what was happening until by chance my practitioner nurse booked me in with another doctor at the same surgery , gosh was so in tune I was just relieved when I was diagnosed after a short time with Fibromaylia @ CFS . Stick with it and do feel you can ask for help, sometimes trial and error until something sits right xx

[Thom75 in reply to Yassytina]

My doctors were in the local paper last week as the cqc have put them as inadequate for safe practice etc have tried to change practice to no avail 😠

[Yassytina FMA UK Volunteer in reply to Thom75]

Oh dear, our surgery is covering such a vast area so differently think Covid and staff going off sick is adding to problems, we now have to get online to try and book 1st in morning, okay if internet is okay but ours here not always so great 🙁xx

[Midori in reply to Thom75]

I signed up with my GP two years ago, and I haven't even had an introductory Interview, nor has my son, All I have seen is the District Nurse when she came to give us our jabs!

I'm buying my meds otc. Good job I'm not on a lot!

Cheers, Midori

[Lupusrelative]

I was started on 50mg three times a day. Upped to 75mg three times a day; had some vision problems so back down to 50mg. Now back up to 75mg three times a day for about 3 months now but lately not having much effect on symptoms. Seeing doctor again next week. She did tell me that some people go up to 200mg three times a day max.

[Thom75 in reply to Lupusrelative]

It is nice to know about other experiences on this I am having zero side effects but also zero relief. I take no other tablet and at the moment my pain especially at night is ridiculous. thanks for your time on this Nikki

[fredsmummy]

Mine was 75mgs twice daily and I now have 25mg top up when required. I guess you could just let them them know if it’s having no effect and ask for a higher dose

[Thom75 in reply to fredsmummy]

Everyone seems to have a higher start dose than I have been given, I understand doctor caution but I have suffered quietly for a long time with very little support and felt like I wasn’t being heard. Thanks for sharing your experience Nikki

[cantthinknow044]

Hi I started on a low dose to start with but they put them up over time. I'm on 300 mg of pregabalin now, the doctor who helped me has left now. It taken a long time for the doctors to understand this

I hope you find this helps

Take care

Daz

[Thom75]

I will get back onto doctors next week maybe I am being impatient and angry and not giving it enough time but the pain right now and at nighttime has been quite intense!! I also have ankylosing spondylitis. Thanks for sharing your own experience nik

[Coffeemum]

I started on a low dose of gabapentine which was then increased, I had bad side effects so was swapped over to pregabalin 150mg twice a day and then to 200mg and then to 300mg twice a day. The gp has to start low and slowly increase over time. My gp practice was also in the local paper as inadequate, it has taken me a long long time to get my referral to a rheumatologist which I think I need to get my diagnosis. I have kept putting off even ringing my gp due to anxiety and the fact u can't get through. Ring every week for an increase in tablets if the are not working and don't give up.

[Thom75 in reply to Coffeemum]

I fully understand what you are saying I too have anxiety and have barely gone out of the house or seen/spoke to doctors in two years, due to their negligence before! I have been under 2 rheumatologist second one not so helpful! it is good to know what your dealing with and be listen to as it can make the anxiety worse if your not. I hope you get the support you need take care Nikki

[StaceyME4]

They shouldn’t be giving us these meds now, they do us more harm than good in the long run. I’m working my way off gabapentin because it depletes my vitD and I’m already deficient without it. Pregabalin was an awful withdrawal experience, being hospitalised.

The pain is real with or without these meds. We have to find new ways of managing the pain and learning to live beyond it.

Google the long term effects of the meds you are taking and using legitimate medical sites with accurate info take a look through and ask yourself is the benefit you are not getting from the meds worth this damage.

I’m in no way anti meds or anti anything but having retrained as a pain management practitioner because of my own fibro and CFS journey I understand it much better and feel more empowered to live my life beyond this xx

[sue5555]

Hi, increase very slowly. I was on 50 in a morning and my go increased it to 200 with 100 in the morning and 100 in the evening and I couldn’t function or stay awake. It took 2 days to clear my head. Now I’m taking 50 morning and evening and waiting at least another week before trying the 100 instead of a 50. P. S the 200 helped the pain😀😀

[Mollie22]

Hi Thom I started on gabapentin then pain management swapped it to 300mg pregabalin twice a day. I get alot of nerve pain in my head face and neck and other health conditions. Best try speak to the your doctor which is a hard job these days. Take care x

[SamL7]

I seen a fibromyalgia specialist privately they actually told me that a lower doses of "antidepressants" meds is for nerve pain and increasing dose does not actually have a greater response when it comes to fibro pain higher doses are more applicable for depression and anxiety he told be to try a new medication for at least 4 weeks, I'm currently of Duloxetine good look with your journey x

[Bmw640]

Hi Thom, I’m sorry you’re having to go through being in pain whilst waiting for medication to settle/be the right dose for you. I just wanted to add to the mix that if at some point you do find your Gp ups your Pregabalin dose the process of getting used to it can be different for everyone. Whilst it took weeks for me to adapt to every 25mg increase a friend went up to 300mg morning and night in a week! But then everyone else I’ve known on it have remained at much lower doses with that being enough for their needs. Just wanted to mention this just in case it becomes relevant to you at some point. I hope Pregabalin works for you and you don’t have to wait long before your pain level feels better than it does now.Take care

Bm

[Tyme2win]

Hi, I started Pregabalin on 1st January. On 25mg 3 times a day and I started 10mg Amitryptaline which I take around 6/7 pm. One of the Doctors is very helpful, the others not so much. She has said that as long as I’ve had no side affects then she will double the dose of Pregabalin to 50mg 3 times a day. Unfortunately she was sick this week so I couldn’t confirm it

[Hidden]

Hi Thom u can take pain meds along side it co codamol helps me ....

[Thom75 in reply to Hidden]

They upset my stomach and have trouble swallowing them and to be honest I would rather take one medication that is doing the job enough rather than multiple that will do more damage but thanks for your advice take care Nikki

[Thom75]

Hi all, I phoned the doctors again on Monday for an appointment as they were offering none online for phone appointments told to phone surgery. Only to be answered by the automated message saying I was number 30 in the que!! I stayed on the phone for half an hour and didn’t move in the que at all in half an hour! So I decided to do an e- consult form on app. I got a automated reply saying I would be contacted by the latest by 6.30 pm on the 15th February. Surprise Surprise NOTHING!! I will try again today but am not holding out much hope. Hope your all holding up yourselves Nikki