Medication

[seren1970]

I've stopped all medication

I thought I would wait till I see the specialist I'm not happy with how they made me feel and the weight gain which i think was causing the leg pain well making it worse has anyone else done this x

[Fibrofoggiest]

Ooowww seren, alarm bells are ringing as I read this. Please don't stop everything all at once, seriously you can get dreadful withdrawal symptoms at best and even the possibility of not surviving at worst. It has been hammered home to me several times by my doctor for wanting to do exactly the same as you, for the same reason, but you really are at risk of possible irreversible damage. Please can I ask you to make an appointment with your GP to discuss a withdrawal programme, which I am sure they will be happy to do if it is really important to you, and I can't reiterate the potential disaster you are risking by stopping all your meds so suddenly and all at once.

Sending positive vibes your way 😀

Foggy x

[Hidden]

Please don't do that and take the good advice given to you by Foggy. Too risky Seren.

Take care x

[Regnofibro1]

I am with foggy please don't stop all at once!!!! Very dangerous!! Please talk to your doctor first!!!

[seren1970]

I will call the doc tomorrow if I can get an appointment

I will get a telephone one thank you so much for your advice x

[Fibrofoggiest in reply to seren1970]

Oh seren, thank you so much for responding and taking on board what we have all said. I for one would have been worrying about you all night knowing the potential risk you were going to take.

Blessings 😀

Foggy x

[Hidden in reply to seren1970]

We all care what happens to you xxx

[Keeleybee]

I got a telling off for stopping amitriptyline, I thought they had stop working boy was I wrong! The pain was terrible 3 days in. I went back on them. I think it's hard a most med's us lot are on seem to only help make life more manageable so we seem to think they don't work?

Maybe reduce one med at a time? Under gp of course. I have many times just wanted to stop everything but being realistic we need them.

What medication are you thinking of stopping? Only a warning but I felt like I had a person crushing me when I stopped mine

All the best x

[stumpedok in reply to Keeleybee]

It's perhaps worth acknowledging that no, not everyone choses to go down the path of taking regular pain medication, choosing non medicinal alternatives with occasional temporary pain medicine instead .....again what's right for one isn't right for another.

In terms of coming off any medication it is, as others have said, always best doing so with proper instructions from GP. All medicine has side effects and as with when starting a pain medicine when it can take a few weeks for them to kick in and effects settle (if you are lucky) , coming off medication can also take several weeks (or more) for the symptoms of doing so to subside. ....only then can anyone really start to assess whether the benefits the medicine gave them out wayed its side effects and whether the medicine was doing what it said on the tin!

Some of the side effects of some of these drugs are the same as the symptoms of Fibro itself, so how anyone on these drugs long term works out whether the symptoms they have now are due to the medicine or Fibro baffles me completely! I guess there is only one way to find out...go through the necessary withdrawal period (with Dr advice on how to do) and reassess in the weeks after that. Pain relief comes in many forms, not solely via a tablet or injection and these have surely got to be worth a try as an alternative to 10,20,30 years etc on tablets with serious side effects. Just a thought. A scary thought I appreciate for some but being on serious pain medication long term is an equally scary thought for others, including myself!

[Lou1064]

I also would advise against this, withdrawal symptoms are dangerous and frightening x

[TheAuthor]

I am in total agreement with the other replies, and please seek medical advice prior to stopping all of your medication. There are alternatives to medication like a TENS Machine, but please discuss all of your options with your doctor first.

All my hopes and dreams for you

Ken

[seren1970]

Thank you funny you should say that just woke up with a feeling I was being grabbed horrible dream xxx

[BaffledKaffy]

Oh, dear, seren, that is not a good idea ~ ESPECIALLY not all your meds! I am glad you seem to have reconsidered.

I weaned myself off a very high daily dose of oral morphine to a much smaller daily dose over a period of time ... without my doc's assistance ... and he was not happy with me. I didn't do this alone for any specific reason, other than stupidity, and getting suddenly fed up with being a zombie. He just said we could have HELPED you! Actually, I think I did it fairly smartly, by reducing the dosage slowly ... spreading it out. I am better in that regard ... but I am in more pain. I am NOT sleeping my life away ~ but I am not sleeping. Either. At all. Period.

There are prices to pay, with or without your meds. Be cautious ...

[Malsy]

Hiya. I see where you are coming from. I am on minimal pain relief, and won't take anymore yet. Dr. Thinks I'm bonkers! " My choice " i want to be able to function! But , yeah, if you're still in pain, and on loads of meds, it does make you wonder why you're on so many, and it's still there! But be careful, and do it gradually, it's not worth the withdrawal symptoms. See Dr if you can get in...hope all goes well....x

[stumpedok in reply to Malsy]

I take the same approach Maisy!

In amongst the ideas of best practice in the management of Fibro is this idea to ' listen to our bodies' ie be well tuned in to our body symptoms and learn to respect them so that we can adapt and develop a daily pacing routine which minimises our symptoms. I struggle to understand how we can do this if our bodies are constantly drugged up?

[rosie-2015]

Have you actually stopped your meds if so for how long? ? Gentle hugs xx

[Tinky13]

I'm now tramadol free following a 4 month phased withdrawal period which I did off my own back.

When I spoke to my GP she just stopped my prescription without a weaning off period as she believed (at the time) that they weren't addictive & you could just stop using them... she now knows better!

I was given them 2 years ago (8 daily) & frankly the issues & complications I've had since starting them (hindsight having 20/20 vision!), the fact that my pain levels were out of control, & numerous damning reports & studies into the drug from actual users helped me make up my mind to get off them.

I'd also noticed that I'd become very negative, critical, aggro, angsty & generally not myself - I'd lost my lust for life, my get up & go, & even the will to live at times - not to mention a totally screwed up sleep pattern, needing 12+ hours sleep a day, night terror (unable to sleep at night so slept in the day) which seriously negatively impacted on my moods too.

My circle of friends is now almost non existant, my parter walked out on me, I've lost my career (mostly due to my back but everything else hasn't helped), I've lost my hobbies (I was always a very active person) & I'm still struggling to cope with my home & garden. I have no family so have only ever had myself to rely on.

I also moved to be with my partner so know very few people where I live (as before I fell apart I was a very busy person).

I don't know how to ask for or accept help - this also doesn't help!

I'm not someone with an addictive personality - I was on codeine phosphate for a long time (over 18 months) as it was the only thing that calmed my digestive system down to the point where I could actually function after cryptosperidium & campylobacter - and I came off that in a matter of a month or so when my system started to behave again with no issues.

Tramadol gave me Tramadhell!

Even dropping one of the daily 8 tablets gave me 7 - 14 days of terrifying nightmares, sweats, fevers, chills, tremors, nausea, angst, crippling anxiety, & more besides.

Just before surgery 11 days ago I explained to the anestheseologist that I had got down to just 1 tramadol a day, and didn't want it being used for pain relief after the op.

Even on just 1 tablet a day I was still in enormous pain, & yes I did question my own sanity many times!

I haven't taken a single one since the day of my op.

Thankfully the drugs given IV helped damp the withdrawal affects of removing that one last tablet, but it still wasn't easy!

Within just 3 days I was almost completely out of fibro pain! Ok, no I'm not completely out of pain but the difference is HUGE to the point where I can mostly ignore it currently!

Prior to taking tramadol I had had 'flares' over many years which were dealt with as and when, with minimal drug intervention when 'off flare' - on tramadol I was permanently 'in flare'. This seriously screwed my head up as it was relentless.

I am currently managing ALL of my pain with 1 x 30/500mg co-codamol, which I break in half and take morning & evening.

I now have clarity of thought that I'd forgotten all about (apart from the emotional roller coaster bit!).

I'm still seriously struggling with the loss of the SSRI effect that tramadol gives, & I still have prolapsed discs in my lower spine which hurt, and the op site is uncomfortable & infected (& there are very few antibiotics I can take) but I can honestly, hand on heart say that getting that muck out of my system is the best thing I've done in a long time!

But please get help, support & advice from your GP - I already had a pain management contingency plan worked out before I even took the first step!

[stumpedok in reply to Tinky13]

Hi Tinky 13...hats off to you girl!! It took some courage to do what you did and I am delighted to hear you are reaping benefits from your perseverance.

Your story highlights perfectly my own concerns about anyone continuing long term on pain medication losing the ability to see /know if their symptoms are related to the original illness or the medication given for it.

I read a useful recc on the site 'painconcern' that people should come off the pain medication every 6 months to check just this.

Sorry to hear you have been through so much but be proud of yourself for coming through. All best.

[Tinky13 in reply to stumpedok]

I did used to drop the dose right down for a couple of days every 3 - 6 months but I think I had some much backed up in my system the withdrawals didn't have a chance to start...

Many thanks x

[maggi999 in reply to Tinky13]

Well done Tinky, it take tremendous courage to come off those types of drugs.

I don't take anything other that Nortriptyline at night-time because I'm cautious of the very things you have written about.

Back in 1982 I was very kindly given pancreatitis whilst having ERCP tests in hospital - twice!

I was on 4 hourly morphine injections for the pain for 7 days. On the 8th day I was told that I would have an injection after 8 hours, then no more morphine. Before I gave in to the medication I panicked - I thought "I've got £30 in my purse, I can get a taxi to Moss Side, score some heroin and get a taxi back" - that's how dependent I felt after one week!!!

The second time it happened I didn't panic as much, but still went into a cold sweat thinking about having the medication cut off. I would rather have the pain than feelings of addiction.

I appreciate that not everybody can cope with the level of pain they are in but for me, it is the lesser of two evils - It scared the living bejesus out of me to feel that way.

[Tinky13 in reply to maggi999]

I've always had a stupid high pain tolerance (walked around on a spiral fractured leg for 5 days before getting it x-rayed, had stuff to do!) & tbh I was so busy in the first 6 - 8 months of taking tramadol I simply didn't notice the changes or the dependancy...

It was only after taking a very long hard look at the changes in me since beginning to take it & then researching that I realised it had to be the number 1 suspect!

Many thanks x

[habinns17 in reply to Tinky13]

Hi Tinky 13. Thanks for sharing your story with us. You are a true inspiration. I'm sorry to hear that you have had such a tough time, and I really hope things start to improve for you soon. Keep smiling. X

[Tinky13 in reply to habinns17]

Thank you Habinns

I'm not inspirational, I just wanted people to know that even though it's hell on earth it IS possible to get this muck out of your system!

I've been warned that it could be up to 6 months for my seratonin levels to sort themselves out, so I may have to consider sertraline, which I'd rather not take if I can get away with it...

Thank you again for your kind words x

[seren1970]

One week today I've spoke to the doc she's happy for me to wait till I see specialist x

[seren1970]

I don't want to go back on it surely there must be other ways of coping wit this xxx

[Malsy in reply to seren1970]

Hiya, you don't have to do anything! Remember, it's your choice! And don't let them tell you otherwise. Xx

[Hidden]

Hi Seren what medication are you on. Xx

[seren1970]

pregabalin Amitri and morphine sorry about spelling and cocodamol x

[Malsy in reply to seren1970]

Just seen what you're on!! I would really ease off these slowly. your Dr. Needs to Help and guide you off of the meds. My friend came off all of these after a back op. No proper help from Dr. She had a dreadful time for the next 2 years with withdrawal. I had to step in and help her, as she wouldn't go out the front door in the end! Took her to a drug help advice place, luckily we had one where we live. Then started a long road to recovery. It was a terrible thing to watch. But i got the proper help for her, people who really understood withdrawal, no matter what drugs they were. Over 2 years now, she's just returned to work. Not saying this will happen to you, but at least take Drs advice to how to come off properly. Her Dr just seemed to leave her to it on the meds. It was madness! Best of luck....xxx

[Tinky13]

Holy wow that's a lot of pain medication Seren! *hugs*

I can't take pregabalin or amitryptaline (or gabapentine) as they give me mouth ulcers, stomach ulcers, nausea & muscle spams / twitching, but morphine & codeine I'm ok with.

Opiates usually either completely surpress appetite, or increase it beyond measure! I tend to swing between the two.

And many people know if they take too much of either / both as they itch like crazy!

(ok I kinda like the codeine scratchies...).

It might also be worth speaking to your pharmacist & getting advice - those guys seriously know their stuff!

Good luck

[habinns17]

Hi Seren I am really sorry to read that your GP wasn't very helpful. I too found these when I asked for support to reduce my medication. I am on similar medication to you but felt that the side effects were becoming more problematic. Have you been referred to a pain clinic? if so maybe they can help you to wean yourself off the medication. I have worked with the specialist nurse at my local pain clinic for over 6 months to slowly decrease my medication. It has been a roller coaster ride but I have been so lucky to have a empathic nurse supporting me all the way. Good luck. X

[habinns17]

P.S I started to worry I was becoming addicted to some of my medications but after reading Painkiller addict from wreckage to redemption by Cathryn Kemp I realised I was doing ok. I found this book to be truly inspirational x

[seren1970]

I don't take anything now feeling much better in my mind still have pain and get very tired but so much better than being on medication thanks everyone for your replies xx