Constantly on pain meds

[Eddie1611]

Hi all, I really don't know how you cope with out meds! I went 1 day without as was out and forgot to take with me, I was in agony all day.

Only diagnosed couple months ago, I'm already on Diclofenac 3 x a day, Amitriptyline 100mg & now Gabapentin 400mg 3 x a day. I have 2 discs in back that are degenerative with 2 bulges, and 1 bulge in neck. I'm going on 2nd August to have a steroid & long acting anastasia in to my spine, to see if this helps. All that with fibromyalgia. I currently take 19 different tablets a day (other health issues too)

Constantly exhausted 😩 and then bouts of not being able to sleep adds to that.

[Hazel_Angelstar Administrator FMA UK Staff]

Everyone is different, with varying levels of pain. Some people choose not to medicate, others react badly to side effects

Personally, if I wasn't working I would probably try and manage without medication as I could use other pain management techniques

I tend to focus only on what works for me, and try not to compare to how others cope

[Buildashed]

Hi Eddie1611, I agree with Hazel_Angelstar. Everyone is different.I hate taking meds, I tried to go without them, tried everything, just going back on Duloxetine after a massive flair up.I have spent that much money hoping for some miracle, scouring the internet, buying vitamin supplements, which do work for some but not for me.

I am still trying to accept my diagnosis.

I have joined a support group, once a month which has been a huge help, talking to others has made me realise if the meds help then stick with them, it’s trial and error.

My hubby is on 30 plus tablets a day and takes morphine he has back and spine problems, I remember years ago saying to his consultants, “I’ve told him not to take the morphine, I don’t give it to him” OMG he soon put me in my place, his reply was are you in the pain your husband is in? Obviously not! give me something to think about on the way home, hubby has been on morphine now for 20 years, he would have no life if he didn’t take it.

So don’t beat yourself up if meds help then take them.

Hope the steroids etc help hubby has had all those.

Edwina x

[Eddie1611 in reply to Buildashed]

Hi, thanks for that, I to couldn't have any sort of life either without the pain meds. That's why I'm happy to try anything. Luckily I managed to get appointment with a private hospital through the NHS so they sent me straight for a new MRI about a month ago and they put it next toy MRI I had in 2018.They explained that tj lower 2 disc's had indeed degenerated and the spine specialist said " this is why your in so much pain with your back & it is not all in your mind"!

I sat and cried! At last I had answers for my back. The relief to know that it is not in my mine!

Now I just need to get PIP to believe me so I can get a mobility scooter and help financially. (Only on low care rate, which I had to fight for)

So the spinal consultant offered me the injection, I jump at the offer. I just hope it works!!

[DixieDexter]

It doesn't take long for the pain to come crashing back.You need to come off any medication slowly with the support of your GP.

I have halved my Fentanyl patch and gone down to 60mg of duloxetine from 90mg, both with support from my GP.

I have only been able to feel well enough to do this due to cold water dipping/ wild swimming. It's been a game changer for me. I understand it's not for everyone.

In the past I've missed doses of medication and the pain has been unbearable.

I certainly couldn't come off all of them .

I hope your pain is now back under control again.

I apologise for the long essay like reply!

[Buildashed]

Hi I feel so sorry for you, fibromyalgia on its own is bad enough.Your diagnosis for your spine and back is the same as my hubby’s, he had the injections twice.

My hubby had to fight for his PIP, he’s a very proud man, the first time he was refused so we had to go to tribunal, but we stuck it out and when the appeal came I requested a home visit he didn’t take his meds on the day so they seen him at his worst I also kept a diary only bad days never on good days, all though you couldn’t really call them good days.

I hope the injections work for you , my hubby cry’s with the pain and he could t live without meds.

Wishing you good luck with everything, keep in touch and let me know how it goes

Regards Edwina

[Al10]

Hello Eddie1611, don't forget the meds you've mentioned need to be taken regularly to recieve the benefit. You can't have a day off!! They need to build up in the system before you get the full benefit and then the body gets used to it's regular fix. Missing a dose can make you feel dreadful. Worse than if you weren't on meds even.

While you are not addicted to your meds, your body has adapted and needs them to feel normal. Many folks get side effectes getting on to meds before they settle. Coming off them, this will likely happen again. Going cold turkey can knock you sideways, possibly fooling you that your fibro is now infinately worse and you couldn't manage now without meds. In the past, patients have complained so much about dropping a medications the GP's have relented and just added more and more to the list. So dangerous!

Depending on what meds you are taking, some are extremely hard to come off, causing many weird and unpleasant symptoms. For some, it needs to be done slowly over many months and even then some will tell you, it's not a fun process; At all!

I would suggest you just learned a big lesson. Don't miss doses. And don't run out. Ever!!

If you want to drop a medication, discuss this with your GP first. There are protocols to enable this. Also, read up on line about how others have managed. Everyone is different in how sensitive they are.

I know people who ended up on a huge cocktail of meds who have bravely fought to come of their meds to find while they are not cured. overall, they actually feel better. I guess each pill has it's side effects and the combination of many means there is more chance you are being negatively impacted.

Don't forget, many fibros can and do cope without medication. They have sensitive systems that can't cope with strong meds. There are more natural options that can help.