I was given the diagnosis of Fibromyalgia in September (2019). Ever since I haven’t been convinced this was right. I still feel that all too often it is a diagnosis thrown out at people when their GP can’t be bothered to work out what’s really wrong. Especially those, like me, who keep pushing for answers. In March the same GP had actually said to me “well you are 50” :O as if that explained everything I was experiencing! I was too shocked that day to respond as I would have wanted to but I did throw that comment back at her in September. She, of course, didn’t recall saying it.
Unlike most I have heard of being diagnosed as having fibro, I wasn’t subjected to numerous tests or referred to anyone else. She just threw Fibromyalgia at me and that was that. She still didn’t refer me to anyone. I pushed to get a referral to occupational health so I could get some mobility aids. The OT has been very helpful and I’m so grateful to her.
But all this time I didn’t believe I had fibro. I knew I had ME (chronis fatigue) and the fatigue and exhaustion have been (and continue to be) my biggest concern. I simply do not have any energy. I cannot stay awake during the day for very long (2 hours tops). And the littlest activity drains me. This is what I had tried to get my GP to understand. Even with decent sleep I never feel rested. I never feel recovered or energized. It sucks!
Yes I get the odd time when simply brushing my left thigh causes terrible burning pain. Yes a lot of my body aches or feels sore on most days. But I thought these things were being caused by other things. Mainly having arthritis and myopathy and neuropathy. Well my GP did say that my arthritis was “very little so shouldn’t be causing so much pain” and the myopathy was “inconclusive due too the specimen being too small”. I pointed out that the arthritis was found 4 years prior and could have gotten worse and that she was the one who told me I had myopathy!!! Ugh! I feel I have to beg for her to listen and understand and BELIEVE me!
I had gotten so mad at one point prior to all this at her attitude (which used to be very good and she trusted what I had to say) and I saw a different doctor. Oh my word was that a mistake! That one dithered about one of my meds and would only give me 2 weeks worth at a time and kept wanting me to have blood tests. Problem was I couldn’t get the tests done before the medicine ran out!
Anyways I had an episode the other night that I have never experienced before in my life. It was scary! As per usual, I had video messaged with my mom then went to bed and read on my kindle for about an hour. My hands were a bit cold but that’s not unusual for me – they are usually cool. I put the book away, turned on some sleep music and switched off my light. I do this every night. I laid there for a while listening with my sleep mask on. Then it began!
It started with a tremor feeling inside me. In my torso. It felt as if every organ was shaking and contracting. It felt like a wave that started low in my torso and increased in intensity as it rose up to heart. My lungs felt contracted as did my heart. I think I held my breath during this as my lungs didn’t expand. Then it stopped. I remember thinking “that was one weirdly strong shiver”. But I wasn’t cold – just my hands.
It began again a few moments later. All my insides shuddering, shaking and contracting in a wave-like manner; growing in intensity once more. I cannot recall how many times this happened but then it got worse. Suddenly it wasn’t just my insides but my arms as well. With the internal wave of tremoring, my hands and arms began shaking uncontrollably. This happened at least twice before my legs also began twitching too. Then my head began to shake!
I thought I was having a “fit” and was so scared! With every pause between these episodes, I tried to think of what might be causing it. It couldn’t be my meds because those haven’t changed in 2 years. I hadn’t eaten anything new. Nothing at all had changed.
By this point, my heart was aching and my head was pounding. I knew my heart had been contracting so figured that was why it felt sore. My head I think was from lack of oxygen since I couldn’t breathe properly during the tremors. It was then I started to feel cold. I was already in my PJs, 2 pairs of socks and under a duvet and a quilt so no reason to be cold. During a pause, I cautiously made my way downstairs. I couldn’t get comfortable in my bed and downstairs would mean I could fill a hot water bottle and make a hot chocolate.
I got to my couch before the next tremor began and waited it out. I then turned up the heating and put the kettle on. Another tremor as I waited for it to boil then made the hot chocolate and filled the bottle. I managed to make it to the couch before it began again. When I could, I took my temperature … 98.6. Nope I didn’t have a fever. I was still trying to figure this thing out. I wanted to find a cause. I tested my blood glucose … a bit high but nothing that would cause all this.
Through all this I did wonder “should I call for help?”. I debated calling 111 for advice. The last time I did they, they sent an ambulance and I ended up in hospital for a week. Nope, I decided that I wasn’t going to do that again. It was not a fun experience.So I decided to wait it out and see what happened with the proviso that should things get worse I would get help.
It finally stopped 45 minutes after it first began. It felt like hours. I felt so drained and was in so much pain from it all. I wanted to go back to bed but I knew I didn’t have the strength to climb the stairs. My heart still felt a bit shaky at times and I kept worrying it would set the whole thing off again. I eventually drifted off huddled in my quilt with the hot water bottle and my Huggle hoodie on (with the hood up!).
I managed about 4 hours before waking with a horrendous headache. All that next day I felt dreadful. I was sore all over from all the twitching, contracting and shaking. My body is not used to that much activity! My headache stayed depsite medicine (though it was bearable with the meds). But I was completely spent and still felt the occasional rumble of my heart. With each one I anticipated everything to kick off but it never did … thankfully.
I did a bit of research and found that tremours are a symptom of fibromaylgia. I say a bit but I really spent hours reading a wide variety of sources before I finally accepted it was true. I did not want this to be the cause. I was still fighting the diagnosis in my head and wanted something to blame; preferably something more tangible. Fibro is such a mysterious illness. So much is not known or understood about it. There seems to be a stigma (maybe only in my head) about it. Like if you say you have it then people don’t take your seriously. Just like with chronic fatigue (ME). People don’t get it. They cannot understand (if they even bother to try). It’s also like the stigma about mental illness. None of these things are recognised as real problems because they are “invisible”.
But now I have to take stock and come to terms with this diagnosis. It’s time to stop fighting the diagnosis and start fighting for a way to cope and manage it. I know it won’t be easy – nothing is these days. Just typing this has sapped my energy and caused my shoulders and hands to be filled with a burning pain. I will need to rest at least twice as long as it took to write this in order to recover and be able to do something else. I’d never wish this on anyone and my sympathy goes out to those who also suffer.