I wrote this a few months back when I was feeling really bad and decided I couldn’t live the rest of my life dealing with this pain. I am delighted to say a few months on, things are looking up but I will post about that next week and fill you in on everything. There is hope but its something you have to work on everyday.
My story so far:
It all started when I was 13 years old. I was experiencing really bad leg cramps all the time and especially at night in bed. I complained about it for a long time but we just put it down to growing pains and presumed they would go away but this was the beginning of my life with Fibromyalgia. Fibro is a very hard condition to describe. In my experience it’s basically full body pain at all times from your head to your toes and no matter how many x-rays, tests, injections and MRI scans you have done, they will never find anything wrong with you. To cut a very long story short, I grew up a very healthy happy girl, played lots of sports in school, loved hockey and athletics and gymnastics, did horse riding and just loved been active. Over the years as the pain in my legs got worse and I started experiencing pain around my whole body and especially my neck and shoulders. I started going to many different doctors and getting tests done and of course they all basically found nothing wrong with me so they told me to give up all sports and horse riding to be on the safe side! (biggest No No) So that is what I did…..I stopped it all.
For the next couple of years I continued on and eventually I think I was around 17 or 18 years old when I was diagnosed with Fibromyalgia. I had suspected it for a while as my mother suffers with it but to have a name to what was wrong with me was some what of a relief. I wasn’t going mad! From then until now I have had every test under the sun and moon done, I have tried and tested everything i have been advised to try. I’ve done acupuncture, massages, cupping, cryotherapy, blood tests, injections into the pain points, MRI scans, x-Rays, special diets , the works and NOT one of them helped at all. I have argued with many doctors, some saying maybe its in my head because my mother has it, some saying well there is just nothing they can do but I refuse to accept that as an answer. Being young and insecure I went to the gym a lot because I thought being skinny was the most important thing but apart from anything else I found exercise helped my body pain a lot. All those years ago when I was told to stop all physical exercise was the biggest mistake ever. Going to the gym really does help but at the same time, this can be very difficult due to the massive fatigue you can get with Fibro and in my case it’s pretty bad. You see Fibro isn’t just muscle pain there is so much more to it than just that and to this day I am still learning about it and how it effects me and my body.
I have just search the net for Fibro symptoms and I have left in all the ones that affect my body:
• Chronic muscle pain, muscle spasms, or tightness
• Moderate or severe fatigue and decreased energy
• Insomnia or waking up feeling just as tired as when you went to sleep
• Stiffness and pain upon waking
• Difficulty remembering, concentrating, and performing simple mental tasks
• Abdominal pain -IBS
• Tension or migraine headaches
• Jaw and facial tenderness
• Sensitivity to the cold
• Feeling anxious or depressed
• Numbness or tingling in the face, arms, hands, legs, or feet
• Increase in urinary urgency or frequency (irritable bladder)
• Reduced tolerance for exercise and muscle pain after exercise
• A feeling of swelling (without actual swelling) in the hands and feet
Over the years I have been told that it would not get worse the older I got but that also isn’t true for me and it is getting worse more and more everyday. So many different things I am noticing, the pain is one thing but my memory is getting so bad which is pretty scary and annoying as that’s not the person I am. This is why I am writing this, mainly because the future scares the shit out of me. To think that I will have to live with this body pain for the next 40 years is the hardest thing ever. Since I was 13 years old I haven’t woken up in the morning without pain. I don’t know a life without body pain. I don’t know how it feels to wake up pain free. So I am writing this to really keep a record of my determination to find some form of relief from this body pain. I can’t believe that there is nothing out there. I can’t believe that this is it forever and its just going to keep getting worse and worse because I know it is going to so I need to figure something out.
About two years ago now one morning I woke up with the normal body pain I have but also with an extra very bad pain in my coccyx and once again it was for NO reason at all. For about a week I could hardly sit and then the pain died down a bit and it was only tender in the evenings after being on my feet all day and since then its been the same. So now if I sit for a long time or If I’m on my feet for a long time it gets very sore. Basically every evening its pretty painful. When I exercise It gets pretty sore which is very annoying as the gym really helps with the Fibro and my mental health. After trying many different things, injections etc I have decided to have it removed. I don’t know if this is part of the Fibro or just a separate thing and I am very unlucky. So from next week on I am going to write a weekly account of how I am feeling and what things I am trying to help with the pain, fatigue and everything else. Please get in touch with me if you suffer with Fibro and tell me your story. xoxoxo