Living with Fibromyalgia

As far as I can remember, I have had physical pain. It all started at the age of 5, I had been complaining of pain in the upper body that led to my arms and fingers. I can't really remember complaining to my mother but what I remember is that she took me to the doctor, and that's where my story begins. The doctor examined me and the results: Muscle Scolioses. What caused it? Nobody knew. This was back in 1993 when fibromyalgia was a very unknown condition and considered something that did not really exist, all in your head, all in your mind. But why would a 5-year-old kid make up pain or even be thinking of pain if it didn't feel pain?

In this blog, I want to tell my story of living with Fibromyalgia, what I have done to make myself feel better, and what I have failed to do that causes me to sink to the bottom of my endless ocean.

After being diagnosed with muscle scoliosis, I started various treatments. At the age of 6, I had my first physio session, which would then keep on going until later on in my life. My symptoms were not severed, and my parents were able to support me to keep my pains moderated for a few years. It wasn't until I became 9 years old when I started to get more and more symptoms that were linked to this so-called Fibromyalgia. My father was fortunate to be working for a woman who was a physical therapist that specialized in people like me, people with possible Fibromyalgia. She agreed to take me aboard. I was lucky to have met this woman and will be forever grateful.

By the age of 12 years old, I had developed most of the symptoms for Fibromyalgia. I had tried various treatments to feel better, I was well into sports, which I think did help me a little bit and I did Physio once a week, every week, all year round. This was around the year 2000, the idea of that Fibromyalgia could be a real condition was out there but yet not accepted by most doctors. My physical therapist diagnosed me with Fibromyalgia at the age of 12. It was finally on paper, stamped on my forehead in big capital letters, FIBROMYALGIA.

What causes Fibromyalgia? In most cases it springs from trauma or accidents, something goes wrong in the system when trauma occurs, or at least that's what I have heard. In some rather rare cases, it can be genetic. I had a pretty trauma/accident-free childhood, but my mother has Fibromyalgia, so in my case this is genetic.

My teenage years consisted of insomniac nights, all sorts of therapies and ways to get better. I tried homeopathy, herbal doctor, all sorts of massages, chiropractors, osteopaths, I even went so far to seek help from a holistic healer. Unfortunately, nothing of this did cure me but kept me going, but my symptoms would just get worse.

I developed depression and anxiety, social anxiety and became isolated. I was stuck in that bubble for about 10 years. I had tried everything, nothing worked. The pain remained, insomnia got worse and I was only alive to exist, to be there, nothing else. The worst thing of this all, nobody knew how I really felt, I was a master of disguise. I woke up in the morning, I took that invisible mask that laid beside my bed and put it on, every morning and I didn't take it off until I went to sleep.

It wasn't until I was around 27 years old, I had moved out from my parents and lived in a nice cozy basement flat by myself. I had totally given up, I had reached the bottom, finally that never ending pit had a bottom. I sat there begging for somebody to help me, but nobody would hear me, or that is what I thought. The day after my dramatic night of wanting to give up, my parents called me and told me that they had managed to get me a room in a very good health rehabilitation, somewhere in the countryside and they would like me to accept this offer. There is a god. Or at least somebody like that. I kindly accepted the offer and did 5 weeks of rehabilitation.

It was wonderful, such a blessing and was so useful for me and everybody around me.

There I found the answer. The answer to my question; how do I go on living this life with Fibromyalgia?

The answer was simple: Acceptance.

Accept the fact that this is going to be your life for as long as you live. Accept the fact that the pain, is always going to be there and accept the fact that you will never be cured. Once you accept your Fibromyalgia, everything else becomes a bit easier. You stop going into doctors appointments with the hope of finding a solution, you may even not go to the doctor anymore regarding your fibromyalgia, because you already know what the answer will be.

I used to cry after every doctor's appointment back in the days because the answers I got from them were almost comical. My GP said, „ you have a mysterious condition, that I can not help you with“. Another one said „ You have got very interesting medical problems “ and he left it at that. A most recent comment from a doctor was „ you know, Fibromyalgia really does not exist“ and this was in the year 2018!. It only shows that doctors know absolutely nothing and some are still not accepting the fact that Fibromyalgia is a real condition. If you ever come across doctors who will not admit this condition, then I have got one advice = WALK OUT.

Once you accept your Fibromyalgia, then first you can start to work on yourself, mentally and physically, to reduce symptoms. There will always be times where you can not do anything to feel better, but it will pass and you can start all over again.

It's an endless battle, but are you willing to fight? I know that I am not always up for a battle, so I take a break, but I never give up.

It is interesting that my parents gave me the name Hildur, not knowing my future, because Hildur means a battle, it also means a female warrior, valkyrie. Hildur was a famous Valkyrie in the old Norse tales, one of Odin's wives. I can say for sure that I am a warrior and I have always been battling against my health. So as long as I live, I will fight, because that is my name.

We are all different when it comes to our Fibromyalgia. Nobody is the same, nobody deals with it in the same way, some things that work for me, may not work for you. It also depends on when you start to get symptoms. Imagine being healthy all your life, and then BOOM all of a sudden you are in so much pain. You are not used to this. I think that is the worst way to go. You can not do things that you could before, you're always tired yet you can not sleep. Your mobility is declining and you may even have to quit your job. Again, I feel lucky that I was born with this condition because I don't know life without pain, I don't know life without insomnia and fatigue. So I am used to it, meaning that I can cope with this all pretty well. It's not fun, but at least I don't know any better, I can not reflect on how I was before, how life was when I was healthy, because I've never been healthy. Of course, I dream about how life would be if I was healthy, but its just dreams, not reality.

Fibromyalgia is a project that we need to develop and tailor to ourselves. Finding what helps you, is the next key. acceptance comes first and then our holy solutions.

I want to share my solutions and what I have done in the past to feel better. Like I mentioned before, I have tried everything, from herbal remedies to holistic healers and everything in between. The only thing that really works for me is exercise, being active and healthy diet.

But we are all human and I have failed many times on keeping a healthy diet and exercising, therefore I feel like shit, every day, every minute, every second. But there will come a time when I am so sick and tired of feeling that way, that I will go back to my routine.

Maybe I am making fibromyalgia very easy to deal with, by saying you only need to accept the fact you have it and you need to lead a healthy lifestyle. But those two things are difficult enough and I yet haven't got my shit together after 26 years.

Thank you all that have read this Blog. This is my first one and hopefully many more to come.

Warmest

Hildur