Saying goodbye to Meds (again)

Those who follow me will know I had to make a very difficult decision back in February this year. A decision that pressed a massive pause button on my life / plans; and that was to start taking a prescribed medication called Duloxetine. In February I was struggling to cope with a Fibromyalgia flare, a flare that continued until part way through May – that was causing me so much pain. When the pain hit a point in which I could do little to nothing, it was clear I needed some help.

Gulp after gulp I took my prescribed mediation, not waiting for a miracle but instead just waiting for the pain to ease or lessen. What started off as 20mg per day, was increased and increased, until I was eventually taking 120mg per day; from no medication to such a high dosage in such a short space of time I quickly became a fraction of my former self. I wish I could say the medication helped, that it gave me pain relief or a better quality of life, but this really was not my experience.

For months I existed in a zombie like state, I was unable to sleep longer than 2- 4 hours, insomnia was real, some days I just wouldn’t be able to sleep at all. Obviously this had a negative impact, little to no sleep led to my pain amplifying. Each time the dosage increased my appetite would go, I felt I was moving further away from myself, as emotionally I felt disconnected. Brain fog actually worsened and there’s many a sentence and conversation over the last few months that I’ve not been able to finish or recall. I found it so hard to focus, to read or write; the sound of white noise felt like it was trapped in my ears and it never gave up. I became weaker and weaker, moving less and less and watched as life appeared to go by in slow motion.

With every increase of the medication my body had to take time to adjust and a lot of those days were completely written off. My stomach couldn’t hack it. Amidst covid 19 and even before then, I’d been on lock down unable to manage much and unable to speak to the same doctor, so every time the medication dosage I was on at that time wasn’t cutting it, a different doctor would just increase the dosage and tell me this would be the one that worked for me. Eventually I spoke to a new GP who said, “if the medication was going to work, then it would have by now”. As much as I hated to admit it, because I’d never wanted to take said medication in the first place … he was right. I had been on the maximum dosage for a while and the pain itself had become something I was so used to … my new (horrible) normal.

I’ll be honest I felt very confused and conflicted; on the one hand I really didn’t want to take anything that didn’t work on the other hand, I’d literally put my life, work and plans on hold having being told previously that medication would be the only way forwards. What was it to be?

Duloxetine was previously not a medication I had been aware of until I conducted the google search of doom… the shortest way to describe my research is that there are countless lawsuits in the USA against Cymbalta or as I know it Duloxetine. The side effects had never really been explained, nor of the lasting symptoms some people experience for the rest of their lives. The medication was supposed to interfere with pain signals being sent from my head … maybe another reference to things being “all in my head”? Taking the medication meant I’d gone against my research but more importantly I’d gone against my gut feeling. So having been told to stop the medication, I knew in my heart of hearts this was the right thing, but I’d been warned of the consequences of just stopping taking them so I had to slowly taper off the medication.

This was the hardest time, I’ve never experienced withdrawal symptoms before but as I reduced and reduced my medication down, I was hit by scenes that reminded me of Trainspotter (the film). I had the shakes, fevers, nausea, vomitting, head aches and whilst no impact to my fibromyalgia pain was felt … my nerve pains ramped up. It wasn’t a great time or something I ever really wish to experience again. Coming off the medication made me realise it has helped with nerve pain, but nothing much else – it had numbed me as a person, a lot.

I started to feel my emotions again, laughing, giggling and crying … my husband even commented how much more like myself I appeared. My mind became a little less fogged, my insomnia began to fade away and my love of life returned. Horrific nightmares I’d been repeatedly having stopped and I took steps to move into a new chapter.

I’m not against medication, in fact I’m all for whatever works for anyone; we’re all so different and if something can help – then I urge you to use it. For me most medication really doesn’t agree with me, it does little to nothing to help with my pains and come with such extensive side effects that the positives have always fallen short of the negatives.

My new chapter is the one I’m most excited for, I’m back fighting and searching for answers that work for me. I’m seeing my new GP soon, a doctor who went back through all of my medical records to 2005, who I’ve helped educate in terms of endometriosis and who has taken this information and gone away to perform his own research. Investing his time in me to find new paths, new specialists and to try and find away of giving me a better quality of life. Whilst I do wish a tablet could magic everything away, when you’re dealing with multiple chronic illness you really need a multidisciplinary team around you supporting you and uplifting you. I need specialists who understand my illnesses, will listen and believe me. Being believed is one of the hardest battles, but it’s something I’ll never stop fighting for.

I finally feel that I’m out of the flare but need support in preventing something like this ever happening again.

Wish me luck on my journey to finding them!

xox


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