I can’t remember a time when I didn’t hurt, not anymore anyway. I can’t even fully remember when the pain started but i think it is somewhere around the 13 year mark. Either way all that doesn’t really matter. I’ve been diagnosed with Fibromyalgia for three years and with thanks to high profile cases in the media most of the time all I have to do is say “ you know the same thing Lady Gaga has?”
No one can agree on what exactly it is or what causes it. Some think it is triggered by a trauma either physiologically or physically but the only thing they really seem to agree on to date is that there isn’t a cure. I try my best not to let this weigh on my mind, it isn’t going to change the fact that I have it and will always have it.
Everyone with fibro’ will go through their own battles with drs, pain management, family, adapting life, emotional wellbeing, and not to mention to day to day issues that I know I used to take for granted. Of course I can only speak from my own perspective and experiences.
This post focuses on what Fibromyalgia is, what it feels like, and my experience so far with managing the pain.
So what is it?
The NHS states that Fibromyalgia Syndrome is a long term chronic illness resulting in widespread pain. It also comes with many other symptoms with the most common being:
- Widespread pain in the muscles, joints, and tendons.
- Tender points in the back of the head, neck, tops of the shoulders, shoulder blades, chest, hips, and knees.
- Chronic fatigue.
- Issues with sleeping.
- An inability to hold concentration and stay focused. Also referred to as “fibro fog”. (the reason why it can take me weeks to write a blog post)
- Irritable Bowl Syndrome (IBS)
- Psychological symptoms and pressure on emotional wellbeing.
Diagnosis happens after you have been tested for all other illnesses as there isn’t an actual test for Fibromyalgia on it’s own. I found that it took years for the drs to believe I was in so much pain and how that was impacting on my life. Eventually I was referred to a rheumatologist who, after sending me for a few more test made the diagnosis, sent me home with a leaflet and referred me back to the gp for pain management.
How it feels
This is the question I get a lot, and it is hard to put into words. The best way I can describe it is if you think about these certain things:
- The muscle and body aches you get when you have the flu. You know that really heavy feeling that even moving an arm seems like too much to handle, let a lone lifting your head?
- Hot aches.
- Pins and needles.
- Being bitten by insects.
- A dead arm or other limb from sleeping “funny”
- The build up from access Lactic acid after exercising.
- Have you ever had a twitching eye that you can’t control?
Combine all of these, 24-7 and that is the closest way I can describe how it is for me. The constant muscle twitches and spasms are exhausting, I’ve spilt more than one drink over me because of them at times,my legs always feel tired and very heavy. Sometimes my legs make things even more interesting by deciding to just not workat all, either when I’m trying to get up or half way through walking somewhere. I have falls on a regular basis, luckily I have an apple watch so can get Siri to call or message someone to come and helkp me although I did have a big fall the other month resulting in me smashing my head against a step in my garden and cracking my poor watch. I am expecting Siri to start responding with “now what have you done?” any day now.
I’m now on my third type of medication to help ease the pain. Once on medication I had hoped it would mean being able to get back to living a normal life, basically as nothing was really explained to me upon diagnoses I fully expected it to be a case of “oh it hurts? Here is some medication so you can carry on a you were before” I soon found out this wasn’t to be the case.
Amitriptyline. The go to first of drug of choice it seems. I lasted three days before I had to come off them. It wasn’t so much the cotton mouth or the feeling of being a complete zombie with no brain power that did it. The deciding factor came about when I was sat there trying to plan my own death in a way where I wouldn’t be found by a loved one! Luckily I had a moment of clarity where I gave myself a good talking to as I have felt suicidal before. it wasn’t something that came on all of a sudden like now, it had been a gradual decline that was over a longer period than three days. All of my DBT skills were not sticking and after it was decided that I had an adverse reaction my med’s were changed to Gabapentin.
At our GP practice there isn’t even a handful of regular drs. For what ever reason, it is what it is and we have various locums. Usually this wasn’t a problem but the issue soon arises when each one not only questions you on if you have been actually diagnosed by a professional, but also then has a different idea on what pain management you should be on. That is of course after they sometimes tell you that it is ‘just in your head” Helpful right?!! This lasted for around a year, a year of never being on the same dose for longer than a month at a time. My kidneys were the first ones to shout “oi, stop it now! We can’t take anymore” a quick checkover at the drs and my med’s were changed again to Pregabalin which, after a year of switching around the dosage and times to be taken is the one that I have stuck with. So far!
With every medication come side effects that can add to the difficulties of living with the initial illness that they are trying to treat. The fact that these can add to feeling drowsy and depletes any coordination you may have, which isn’t a lot to start off with. So far the Pregabalin only gives me a few side effects, it doesn’t get rid of the pain just the burning sensation and generally it certainly isn’t actually very helpful. For now I have given up going to the GP though as I’m not finding him very helpful, I am however trying to find another Dr. Which is proving to be very difficult.
What else is there?
As for the other issues related to Fibromyalgia I am going to save these for another post. They will cover things like dietary issues, incontinence, adapting life, and the tole it can take on your emotional wellbeing.
And as you have read this far I want to thank you.
If you or anyone you know is going through this do you find blog posts on the subject helpful? Is there anything you would like to know related to pain and pain management? Or is there anything you would like to see in future posts?