I am quite new here I have fibromyalgia m.e and copd. I was diagnosed about 30 years ago. I am 69 years old and feel about 90.

[120848]

I am trying to come of some medications any advice?

[DanielleGemma]

Hey 120848

So sorry to hear that you are struggling with Fibro and welcome to the forum! Our mothersite has loads of really helpful hints and tips fmauk.org/

I came off all of my medication in May and was previoulsy on 32 tablets a day! My advise was be

1. Speak to your GP - make sure they are aware of what you are doing as they will hopefully provide you with ideas as to how to come off them safely

2. Tell the people close to you - its a difficult journey and you need the support of people around you!

3. Don't be hard on yourself, it's a long and difficult time and there will be days when you want to give up, but push forward

4. Be proud of yourself you are doing an amazing and brave thing

5. Don't come off everything at once - it took me just over 5 months to come off my tablets, stopping one or two at a time but in increments, don't just go cold turkey!

6. Treat yourself at the end, buy something you want or go for a nice dinner

Xxxx

[120848 in reply to DanielleGemma]

Thanks for your reply. It is due to been on here and reading all the advice that that as been given to other members that it as given the confidence to try. My doctor is not really interested. Many thanks once again.

[DanielleGemma in reply to 120848]

No problem at all! I agree being on a forum like this can give you the hope and confidence to do things you didn't think you'd be able to! I feel like I have an extra family that is always there to support me and offer advice and I don't know how I coped beforehand! Please keep in touch with me throughout your journey always here if you need a chat xxx

[120848]

thank you.

[Fra22-57]

What ever you try and reduce try it in small amounts.I would never reduce unless doctor advised me to.I have reduced but have had terrible drug withdrawal symptoms. Don't end up being worse than you already are.

[Maureenclayton]

I to have fibro I've never experienced anything like it apart from bronchiectasis that is, does it get any worse than this, I've had two knee replacements but that has t stopped me from doing anything no not like these other problems, of course the pain with the fibro is terrible and I'm on morpheme which has helped compared to tramadol which just made me sick, but the discomfort of this bronchleotesis and chest pain is the worst thing ever. Really hoping for some sort of relief soon. My friends tell me I look young for my age but like you I feel 90 I do t think that anyone understands unless there in the same boat. Hope your feeling fit soon. Take care. Xx

[120848 in reply to Maureenclayton]

Yes it can get worse, sorry to say. I to cannot take a lot of the medications because of the side effects. I am sorry to hear of your knee replacements. yes the pain from fibro is bad, nothing compered to not been able to breath. I fully understand how you feel. what are you taken for your breathing?. hope that you will get some relief soon. look after your self Xx

[Maureenclayton in reply to 120848]

I have a blue inhaler (ventalin )

[Maureenclayton in reply to Maureenclayton]

Sorry still working out this blumin phone lol, also have fluticasone furoate inhaler what ever that is, horrible to use, once a night quick suck in. Plus I use nebuliser only just been given whatever it was when I went on holiday it was to dry out the mucus rather than bring it up. Didn't work though I was ill. Couldn't wait to be home. Sorry if that's any help, I really don't know yet what I'm supposed to be on till I get advise from a specialist on the 5th October, as I think what I have is mainly for my asthma. I take morpheme for my fibro which has helped a lot. I hope whatever your taking works well for you and your comfortable and not in any pain. Thanks for asking though, it's good to talk to someone in the same position as myself. I never talk to any of my friends st home about anything incase they think I'm winging, so this is new to me. Take care. Xxxx

[120848 in reply to Maureenclayton]

I am no different th..en you I am still trying to learn. I have tried Ventolin and Nebuliser, all I got was a dry cough and mucus was not moving. I am not surprised that you were ill and could not wait to go home. I see the specialist every six months, she send me for a lung scan and it confirmed that I have Bronchetises. I take oregano cup 181 to help with mucus. I also take ldn for the fibro they have helped I am not in so much pain nor short of breath. I quite agree it helps to talk to some one who understands, I do not talk to my friend they would not understand about (fibro). you can get in touch with me. Take care Xxx

[Maureenclayton in reply to 120848]

How are you doing now, sorry I haven't been in touch as much as I would like but haven't been up to it, started physio which nearly killed me and for the first time ever I could hardly get out of bed in fact that's where I am right now, but I am going to have to pull myself together soon as I have an appointment with the specialist or consultant what ever you call them about the results of my CT scan so it's important that I go, I'm still not sure how this system works about keeping in touch with everyone, what I need is my 13 year old grand daughter here ever day to help of course but unfortunately she has to go to school. I do hope your feeling well and getting about, isn't it wonderful getting old lol.take care Maureen x

[120848 in reply to Maureenclayton]

Hi Maureen just seen your message I am so sorry to hear that you have not been well. ( physio Bad idea ) good luck with your appointment , yes it is important. your luck to have your grand daughter leaving near you My son leaves in Southampton I only see him three are four time a year I have to wait a long for advice. Thank you for asking I do feel a bit better and nearly of all my medications. yes it's awful getting old. take care Maria.Let me know how you get on at the specialist x