Fibromyalgia Awareness Day 2018

Today is fibromyalgia awareness day. I’m posting a lot later than what I wanted to do today but I have had a busy day. I went to see an amazing wee play called Invisible today with my dad. It is written by Charlie Marx. It pretty much hits the nail on the head on what life with fibromyalgia is like. I felt quite emotional after watching it, it was so relatable. This story is so close to my own. It was educational, inspiring and hopeful. It made me feel hope. A feeling that I have been lacking a lot recently. I left the hall feeling valid, I felt that I was not a lone. I felt that I although I do not know what my future holds, it is worth finding out what it holds. I was reminded of the joy that life can bring and felt hope for my future. That changes could happen… For the better!

Fibromyalgia is common, and yet it is surprising how many people have never heard of it. I knew very little about it before I was diagnosed. When I say I knew very little about it, what I really mean is I knew a person who had it and I knew it caused pain. That was it! That was all I knew.

As you can see, fibromyalgia is a lot more than just pain. This is something that causes me a lot of health related anxiety. There are so many symptoms and effects. My fear is that I could have something else wrong with me and a health professional could just attribute it to the fact that I have fibromyalgia and not receive, or be able to manage it properly. I think that I have finally found a GP who listens to me and takes my condition seriously, but even he sometimes listens to what I’m saying and relates it to me having fibromyalgia instantly. I try to keep track of any new symptom, or any changes of symptoms. If you have new symptoms, you should tell a medical profession and get it checked!

Fibromyalgia symptoms can be anything from a mere irritation to debilitating. The severity of symptoms can vary from person to person. They can vary from day to day, hour to hour.

I think it is particularly important to remember that fibromyalgia does not discriminate by age! I am only 25, I have been having symptoms for years. I was a teenager when I started showing symptoms. In fact, there are times in childhood, that I remember having multiple appointments due to having ‘unexplained’ pain. I often wonder if this was the start of my troubles.

Despite fibromyalgia awareness day now coming to a close, it is important to continue to spread awareness.

Be kind to yourself, and other people. You don’t know what struggles people are going through. People are all just trying to feel their way through life!

Meds changing again…

Recently my doctor has suggested changing the medication that I take again. On the one hand I am so very fed up going through all the side effects of different medications and then the effects of changing it. I am fed up reading the leaflets that come along with the medication, or listening to the advice from the doctors and/or pharmacists about the possible side effects that these drugs can instill. I am so fed up having to take medication. I am so fed up feeling like there is so much more ‘wrong’ with me. However, on the other hand, I am very grateful that I am lucky enough to have a doctor that is listening to me and seems to be actively wanting to find something that may help me. That might just make living with fibromyalgia and anxiety and everything that entails just a bit more bearable.

Anyway, the drug that I was on was Duloxetine, or Cymbalta as it is widely known. I was taking 120 mg a day, which I believe is quite a high dosage. Now, in order to start a new medication I had to cut down the Duloxetine, before coming off of it and then starting the new medication. Since visiting the pain clinic, my GP had a list of drugs to try to treat my fibromyalgia. I have tried the different drugs and different doses of them with no avail. So far I have been through Amitriptyline, Gabapentin, Pregabalin and Duloxetine. I was also on Sertraline during this time. The move, from Sertraline to Duloxetine was particularly difficult. I knew coming off of Duloxetine was not going to be easy, especially when my doctor warned me that I was going to have “a rough couple of weeks”. He was not wrong! I have just started taking the new medication.

I could feel the effect as soon as I cut down the dosage of Duloxetine.

Then when it came to the period of time I was without medication, it was horrible! For years I have been having nightmares, these seemed to become more vivid. I was sweating. A lot! Not only that, I was having cold and hot flushes. I was feeling sick, all of the time. The pain I felt! It has been intense! On top of that my eyes have been funny. It was like I could hear them. I know how ridiculous this sounds as I type it but they were making lightsabre like sounds when I moved my eyes. Apparently these are brain zaps, and are common when coming off of Duloxetine. They are not nice! The headaches and feelings that accompany them is awful. I was getting random sharp pains in my head. I quite often get headaches and these sharp pains in my head but they seemed to come more often. I ended up holding my head, telling my papa that it felt like my head was going to explode more than one occasion.

It was just the other day I started this new one. So far I still feel rough and I still have a lot of horrible symptoms/side effects. However, it is still early days. I am clinging onto hope that perhaps this tablet will be the one to help me. I know nothing is going to take all my symptoms away from me, but anything that makes them that wee bit more bearable is a plus.

Remember to be kind to people. You don’t know their struggles. To look at me, I look “normal”. I do not have any obvious physical signs of being ill. Everybody will have their own burden, their own issues, and is just trying to work their way through life.

It’s been a while…… ( and that’s ok)

My last blog post feels like it was a hundred years ago! Slight exaggeration… but it was quite a while ago.

I have said before, in a previous post, that I have been finding things difficult. That still stands!

In January this year, I began to attend counselling again. This was only a 6 session intervention. Around the same time I attended appointments (the initial assessment ended up being 3 appointments!) with a pain psychologist (which has led to further appointments). In these appointments I have been looking at my own behaviour, my past, trying relaxation and breathing exercises and been trying to find triggers for my anxiety as well as my pain amongst other things. At the moment, things feel muddled and my mood and pain levels are not good! I have been having more panic attacks and I felt like I have lost any form of being able to cope that I had managed to grasp onto. So I stopped blogging, I didn’t know what to write. I did not think that I had anything of meaning to share. I slipped into believing I was worthless, and could contribute nothing. Truthfully I stopped pretty much everything I was doing. I had no motivation. No energy. No interest in doing anything really.

That being said, I have continued to go to my appointments and I still am working on finding something that works for me. Finding a remedy to manage, or at least help manage, my condition.

I began to blog to try and work my way through my own journey with my mental health, through my fibromyalgia and through life struggles. I want my own story, my own experiences to be out there in the hope that it could potentially help somebody else. Even just to remind a person struggling that they are not alone. That they do not need to suffer alone. To know that it is ok to not be ok. It is ok to feel lost and not know what everything with themselves makes sense. To be a reminder that it is ok to reach out and ask for help. I really needed to remind myself of all this. I had to remind myself this multiple times and it has taken until now for me to put words down.

I needed these few months to try and focus on myself. To work through issues and try and practice some self care. The ironic thing is, me making this step to create a post again, is also a bit of self care. I think it is clear that I may need to take time out from blogging from time to time just to continue my journey and try and grow. As of now though, I am back! Back to put my experiences into the mix of what life with a chronic condition is like. Back to say that it is ok to take some ‘me’ time. It is ok to take time out when needed to recharge. I am going to continue to remind myself that I am enough. I have something to contribute, something of meaning. I am not worthless.

Be kind to people. You don’t know what struggles other people are going through. They will be just trying to feel their way through life the same as you are!