To those of you who are suffering with Fibromyalgia ! When the medication stops working....

[Grumpiest-git]

Speaking from personal experience for past 30 years... Unfortunately we all start to accommodate the medication dosage... you have 2 choices, increase the dosage with doctor or consultants help... or decrease with or without help for a few months then increase back to lower than normal levels, it always works, but nigh on impossible to get gp help as it goes against what they think! Whatever you do DONT GO COLD TURKEY! Cose it only hurts you.... decrease slowly then increase a little quicker. But remember it's not a quick fix... or try different medication with doctors recommendations not your own... however sometimes that's all there is.

But! Distraction always works.... find something you enjoy and do it!

Or try something you have always wanted to have a go at..

Or listen to calm music. Or have something read to you, by one of the digital sources or a friend!

Take up gardening especially with scented plants and flowers...

Me! I became a bee keeper and on my grumpiest of days I get stung accidentally that's when I realise I wasnt concentrating, and from that moment I am! And it make a world of difference. bit like getting a good slap from a trusted friend to get you back on track. Completely takes your mind off your pain 🤪😂🤣🤫for hours. Sometimes days.

So those who have been bothered to read all I've suggested. thank you, and keep going. There are better times ahead. Even hope.... but first get yourself respect back. Cose as an individual your worth so much and contribute so much to life and possibly others lives too! Find something no matter what and go for it. You just need to give yourself permission and make your own improvements. no one else will... if you qualify for additional help ask your county council for direct payments to pay for a personal assistant or supported help, you can but ask. If dont ask you dont get...

Yes better times ahead. Always look forward and forgive others, it's a sure way to forgive yourselves. Often we beat ourselves up over past mistakes but, its past and often cant be undone, so move on and give yourselves permission to enjoy life. Dont just take my word it works, try it yourselves. bye all 😉

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org

Thank you for sharing what had worked for you - bee keeping must be an interesting hobby (I love fresh honey but think I'll stick to buying locally)

[clareboitelle]

Great Post. Have you still been able to claim PIP after Coming off all meds? I found meds made me worse but also worry that without them, I will not be taken seriously???

[Grumpiest-git in reply to clareboitelle]

Unfortunately, I still take my meds but play with them ie decrease and increase within the prescribed range , you get to know yourself what works even if the and when the gp refuses to help... whatever you do ! DONT TAKE MEDS JUST TO GET YOUR BENEFITS! There is so much more to life than living on a pittance... including self worth and your own peace of mind... but sometimes it's all some can manage, then you must find a personal balance of what works for you personally, we are all individuals and all react differently to both pain and medications, the gps and pharmaceuticals dont think so!!!! Keep going, keep finding out what works and what doesnt and apply it in your life... and enjoy the good days, note the bad days but dont dwell on them, use your hobbies or interests as a distraction for your aches and pains, just so as to try to enjoy something, no matter if it's just seconds or minutes to start with, keep at it! Work at it, then gradually you'll start to realise your able to do a little more each time, dont forget it takes at least 3 weeks of trying regularly to do something before it actually becomes a habit!!! But honestly youll enjoy trying, there is nothing better than personal success even if it's so small no one notices it but yourself... it's all about YOU! YOUR important, irrespective if it's your pain, your meds, your tiredness etc, the only person who can make a difference to you, is actually YOU!!!! unfortunately often others have no idea unless they too have dealt with it or are successfully dealing with it... night all 😉

[handsy1 in reply to Grumpiest-git]

sorry i think you don't no what your talking about i don't think you have fib maybe go back to gp to find out what they have missed.

[SusieSquirrel]

Firstly. I'm not sure you are the grumpiness git...I married him

Secondly. I'd love to keep bees but can't afford the bee keeping course and all the other start up costs. How did you get the knowledge. Did you do a course or just research?

I was just put on duloxetine and my start up dose is now uneffective. I was talking to someone th8s week about not knowing what to do when I'm on a higher dose that's stopted having any benefits

[Dragonfly43 in reply to SusieSquirrel]

Hi SusieSquirrel, I was on highest dose of duloxetine and it stopped working for me. I'm back on amitriptyline, low dose but pain getting worse. Just need to keep onto gp, its all trial and error to find something that works

[SusieSquirrel in reply to Dragonfly43]

Amitripiline gives me the worst nightmares and I get restless arms not legs lol

[Jaine7]

Thankyou I really needed your words today x

[Fibroska]

Thank You so much for your wisdom.

Stay safe, keep well and bee strong

[Welshcatlady]

Hi thanks for you post, I have recently weaned myself off Co-codamol, and must say I felt so much better than when I was taking them, they had practically stopped working, I now take them if my pain is severe, and I just take Paracetamol if I feel I need some help with the pain. And I take my last Gabapentin capsule tonight, after having a telephone conversation with my GP, telling him that I felt I would be better off not taking them asI was experiencing some side effects. There was no quibble about it, he immediately gave me a prescription for a lower dose capsules so that I could wean myself off them. I feel so much better in myself now. Yes I still get pain, but no worse than when I was on the medication. I still take Amitriptyline at night, that does help me sleep.

[LulaElla]

I've just followed you, after 30 years I think you know your stuff by now great post and very positive.

At the mo I'm under the crisis team, I've been looking for someone to save me and now I realise I have to save myself..

As soon as I read your post it hit home... thank you not so grumpy git

[Pagan707]

I totally agree with your way of thinking about listening to your body and adjusting your meds within a range accordingingly. Unfortunately NHS policy is to take all and I mean ALL chronic-aim sufferers off any opiate based drugs that includes MST, oramorph, oxy, tramadol, codiene, co drymydol tablets, patches and syrups. The replacement being paracetamol and ibuprofen. I am really worried about this, have others heard or experienced it in uk?

[Jeja in reply to Pagan707]

I haven’t heard about this but it’s very scary. I’ve been on dihydrocodeine for about 15 years. Nobody explained it was addictive and when I found out I asked my go to help me come off it. She said there was no real help but suggested how I could do it myself. I couldn’t come off it and am now well and truly addicted. It doesn’t really help the pain that much, but psychologically I need it . I was told by one doctor I was no better than a junkie, but they prescribed it in the first place. There doesn’t seem to be much support for people with long term conditions.

[Pagan707]

I don't doubt the lack of support you have had but the NHS does have clinics to wean people off prescription drugs. I bet the waiting lists are long but it's a start. Go to NHS direct.com as a starting point. One of my son's school friends went privately after pain killer addiction. This is obviously a quick route if open to you. Each major hospital has a specialist pain team who deal with these issues. I am under mine and have been for years, maybe get your GP to refer you to them. The difference in standards and abilities of GPs in this country is shocking. If you need help tracking down an NHS clinic let me know and I will help. Meanwhile even taking 10 per cent less is a great step in the right direction. Remember you've been on them for year's so your talking months if not a year to stop. Good luck, you can do it with help.

[Edey60]

I'm new to this site. Your post has really helped me. Searched for help on Google as in a severe acute flare up. The picture of the bees was perfect as I love bees and always rescue any in trouble, and know the need to be mindful with them. Anyway you successfully distracted me with you post. Hope you are well at moment 😊 🙏