A while ago, when I was in a good place & really positive about being proactive, I decided I wanted to look at all the pain medication I was taking and to see if I could come off any of them. I was looking at how many tablets I take every day & decided things needed to change......if they could. Unfortunately since I had this thought I have had to start taking medication for my bladder so I'm taking two more tablets, but they do make a difference so I guess that's worth it!
Some of the things I take, like Levothyroxin for my under active thyroid, I know I can't ever stop taking but if there are things I could then I at least needed to try!
I spoke to my GP, as I would never try anything like this without their input. She contacted my pain consultant & a plan was drawn up. We started off with Pre Gabalin also known as Lyrica & I was taking 300mgs twice a day.
At one stage I did manage to get down to 75mgs twice a day and I was tolerating that quite well but then I had a fall & ended up with sciatica in my arm.....who knew that was a thing?! I get a fizzing pain that goes from under my arm, down to my hand but only in my left arm!
So now I am back up to 150mgs twice a day but at least that is still half of what I used to be on! One of my reasons for trying to come off these drugs was to see if they were doing anything for me & it turns out some of them were! 👍
The next one I wanted to try was called Tapentadol or Palexia. I was on 300mgs twice a day. Again, I started the withdrawal slowly & with the guidance of my consultant/GP.
I am absolutely delighted to say that I have completely come off that medication and I can't tell you how much it has changed my life and I mean completely! It has really woken me up, literally, but also to the impact that medication has on us & not always in a positive way. I thought that a lot of my issues were symptoms of my MS but instead, it turns out that some things were actually side effects of the medication.
I really struggled with fatigue, which is a symptom of MS, but what I hadn't realised was the impact the Tapentadol was having. I generally wouldn't be able to get up before about 9am, on a good day, and I would be in bed by about 5 or 6pm. I came off the medication and now I am up anywhere between 5.30 & 6.30am, EVERY morning, and I stay awake until about 9 or 10pm and this is a daily occurrence!
It has blown my mind & I feel like a different person!
It's a bizarre turnaround but one that I have really welcomed. It's as though I have literally been woken up, I feel more alert and it's given me the realisation that I can't just blame everything on the MS. It's so easy to do that because it is a condition that has such a big range of symptoms and affects everyone SO differently. I've always said that you could have a room full of people that all have MS and we would all be different. Different symptoms, affecting us in different ways with totally different experiences. It's what makes diagnosing MS so difficult, it has to be given time to see what happens which can be incredibly frustrating for both patients and doctors alike.
In a way I was lucky with my diagnosis. I was referred to a consultant, who turned out to be one of the best, and I was officially diagnosed about 6 months after my symptoms started. I know that some people can go many years before they get a diagnosis and I can't imagine how frustrating that must be. I remember wondering if I was going mad and it was all in my head? My issue was that a lot of my initial problems were altered sensations on my skin and that wasn't something you could show people.....it still isn't! It's why, from the beginning, I have always found ways of trying to describe what the pain feels like so that I can try and give people some sort of reference.
With medication, it is a really important point though, you only want to be on things that are actually doing something for you. I have been on so many different medications over the years, many of them were trying to target my neuropathic pain and I always just assumed that they would be doing what they were prescribed for. That was when I hadn't had any experience with taking meds and didn't realise that not all medications work for everyone.
With a condition like MS, things change over time and that is something that I didn't factor in with my medications. I would have come off or reduced my pain meds over the years if I had realised. Things that were prescribed for me ten or fifteen years ago haven't been or aren't working in the same way now because my symptoms/body has changed, so it is always worth reviewing them every now and then. It has taken me twenty years to work that one out! 😂
Sending much love & Rosie cuddles to you all
Amelia
XxXxX 💕
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