“You look ill.” Words I never thought I would hear out of a medical professional’s mouth when referring to someone with an Invisible Illness. It offered something I had all but given up – hope. I was asked what I wanted today and I just said “some way forward”. I have reached a point in my Fibromyalgia and Chronic Fatigue where I could no longer cope. The doctor asked about my life and said the combination of running a business (I employ others), Chronic Pain/Fatigue, expecting a new family and the combination of medication I was on was probably the worst possibly Venn Diagram that could have been created. A new way was needed – a “reset” – to start coming off Fibromyalgia Medication that clearly wasn’t doing its job.
Which Medication Am I On For Fibromyalgia?
Prepare to be amazed or horrified as I’ve never shared this list. This is my current daily medication setup. I have linked to different websites on these medications, just to try to be unbiassed.
- Paracetamol × 8
- Ibuprofen × 8
- Nefopam (Opiate Pain Medication) × 3
- Quetiapine (Mood Stabiliser) × 2
- Mirtazapine (Antidepressant) × 1
- Baclofen (Muscle Relaxants) × 3
- Amitriptyline (mild antidepressant, but at this level is for pain management – × 1
- Shortec – aka Oxycodone (quick-release controlled pain medication) × 4
- Longtec – slow-release controlled pain medication – × 2
- Omeprazole – to try to protect my stomach from all the above – × 1
You should tally those up. I am currently on 33 Prescribed Tablets a day, and that’s before the fact that I need a certain level of Magnesium and Vitamin D. There’s no wonder that the doctor today called the above list “all this crap”.
What was the Outcome?
So, scary time. It’s time for me to discover what an almost medication-free Jedi looks like. The plan is from after our Jedi Youngling is born (probably 1-2 weeks away now) to begin to withdraw from all the above. This is excepting the Anti-Depressants and Mood Stabilisers – which, trust me, I need to be on. Fighting pain, in my case, led to depression, which the medication really helps with.
He also said this should be done over a 4 week period which I should also take off work. That’s probabaly is most terrifying. However before the doctor had even suggested it, my wife and I had spoken about my need to cut out the stress, and how do we live for a month without pay. Not simple. Due to some inheritance (don’t get excited it’s not much), we should be able to cover living costs for a month.
Time for a Reset – to start Coming Off Fibromyalgia Medication
The important thing for me from today is that the doctor had an idea. Even if my pain is no better, I’ll know what reference point we’re working from. It’s unnerving. But the reality is, the 33 tablets above are not controlling my pain, so a new plan was required. I’m initially cutting out the Paracetamol and Ibruprofen as there are minimal effects from doing so. And I’m doing that right away.
It’s going to be tough. There will be withdrawal kick-backs. But there is a plan – and that’s all I’ve ever wanted (apart from being pain-free of course).
I have come off Paracetamol with almost no impact. That practically halves the number of tablets I’m taking in a day. I tried coming off Ibuprofen but I couldn’t move and definitely couldn’t work. So I’ve reduced the number I’ve taken by 25% and that seems to have stabilised things. However the signs are not good for the month of December. It’s going to be a rough ride, I think. Coming off Fibromyalgia Medication is not going to be easy!
November 2016 Update: after a week of unbearable pain levels, I went to see the doctor again. For now we have re-introduced Amitriptyline. It is possible, as this drug takes time to get working after starting it – and time to stop working – that I need it right now. I have a telephone update scheduled for 2 weeks time to see how I am and work out a new-revised-deaft plan for coming off other Fibromyalgia medication!
December 2016 Update: I have now come off Paracetamol (the “weakest” drug) completely, and Longtec (one of my “strongest” drugs) completely. My wife thinks “I am no worse” for doing so. My doctor thought reducing Fibromyalgia Medication might improve my Chronic Fatigue symptoms. This does seem to be the case – to the point that getting to sleep some nights is much harder. I have another catch up with my doctor next to see what he thinks I should remove next. The only new thing to have happened in the last week is that I am experiencing Back Pain regularly for the first time. I don’t think it’s due to coming off medication – it might just be the decline in my health that would have happened anyway.
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