My Fibro Journey Part 2.

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I realised that it is nearly a year ago since I wrote about my fibro journey. So I thought it was time to do an update and let you know how I am now.

Medication update.

Since the last update quite a few things have changed. I was taken off the amitriptyline as I just didn’t feel myself at all. The doctors didn’t seem to have any other answers than to prescribe me another drug called gabapentin so I thought it was worth giving it a go.

I started off on a low dose of gabapentin for my fibro. I got up to 100mg of amitriptyline per day and during this time I put on nearly 2 stone in weight. It was affecting my mental health as I just didn’t feel good about myself as well as the horrible side effects and lack of help with pain.

I went back to the doctors and said that it wasn’t working for me. No other advice was given than to try another drug called gabapentin. Again I started off on a low dosage but soon it was increased after going back to the doctors until I was taking 400mg of Gabapentin x3 per day but I didn’t like taking them. I didn’t feel like they made barely and difference pain wise and I was sure I was experiencing side effects from them.

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Once again, I went back to the doctors and asked if there was anything else that could be done. They suggested another drug called pregablin but when I looked up the side effects I didn’t like the look of this at all so I decided against taking it.

I stayed on the gabapentin for a good few years. I was getting sick of taking tablets that didn’t seem to help with the pain and over time the pain got worse and I felt worse too so I decided it was time to go back to the GP again.

I couldn’t get an appointment with my normal GP but saw a locum doctor who was absolutely brilliant. He said that he often sees patients with fibro who say it’s got worse. His view was that fibro isn’t a progressive illness (a view shared by many) but that people’s body get used to the medications that they take and so need a higher dosage.

When you start to take a higher dose, the side effects get worse and he said that people often assume this is the fibro itself getting worse. He also said that before you know it, people have gone back and said they’re still in pain so they’re prescribed multiple pain drugs which combine to give a whole host of side effects.

It was nice to hear a doctor whose answer wasn’t just to push drugs on you as I felt that this was always the case when I went back even though I stated each time that I didn’t really like taking medication. This doctor advised me how to start coming off the gabapentin and so each week I dropped one day by 100mg, the next week two days by 100mg and slowly started to come off them.

Some weeks I couldn’t drop any dosage due to fibro flares so I started this process last August and finally ended up coming off the gabapentin completely by the end of October. As soon as I started to decrease the dosage the weight that I’d first put on whilst taking the amitriptyline started to literally drop off. It was quite typical that I’d not long got rid of the smaller clothes thinking I’d never lose the weight! It was a good excuse to go out shopping haha!

Life without prescribed meds.

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Life without prescribed meds is much better. I didn’t realise how many side effects I actually got from the gabapentin. The main one being getting up in a morning. When I was taking the gabapentin I cannot explain how hard it was to get up. I couldn’t wake up, I felt groggy and it felt like a cloud loomed over my head until about 11am when I finally started to wake up.

I don’t have this now at all. I tend to wake early and when my alarm does go off I don’t have any trouble getting up except when on a flare. It’s amazing the difference it has made. I had thought it was the fibro getting worse.

I have to say I find it easier to listen to my body now and know that is my fibro symptoms. That might seem a weird phrase but I know that nothing is masking my symptoms so I know I can trust more how I feel. Does that make more sense now?

But how do you not take any meds? Your fibro can’t be that bad!

This is a message that I hear quite often and tbh it still quite shocks me. I’ve always been quite a positive person and I’ve spoken to so many fellow fibro sufferers lately who have all said that they believe mindset is incredibly important. Having that positive mindset helps me get through every day.

I find that the pain I can manage day to day. If it is a high pain day then I’ll just adjust my tasks and do less. It’s the fatigue that I struggle with most as I just cannot shift it. That’s the hardest part.

I have since coming off the gabapentin started to take regular supplements. By regular I mean daily. I did a lot of research into this before taking them. I have found these to help take the edge off the pain day to day. I’ll share some links below:

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Magnesium 250mg Tablets

Magnesium helps our bodies turn the food we eat into energy. It therefore helps with:

  • helps with fatigue and tiredness
  • helps the function of the nervous system
  • helps with muscle function
  • helps with metabolism
  • helps to keep bones and teeth healthy

Vitamin C 1500mg with Rosehip 15mg

  • vitamin c helps the body to absorb iron
  • just be careful that you don’t experience stomach pain, flatulance or diarrhoea as this can be a side effect from taking too much vitamin C
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I hope that this blog post has helped you 🙂 I can say from my own personal experience that I have found taking these supplements to make a difference.

Disclaimer: please make sure that you consult your doctor before making any changes to your medication. I am not a doctor or a healthcare professional. The same goes for taking supplements too.

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