It’s coming up to 6 years since it all started for me. Pain, extreme fatigue, memory and concentration issues, anxiety and many, many more symptoms which I will attempt to explain if I can concentrate for long enough! I’ve been wanting to write this for months but have not felt well enough at any point to attempt it… so finally I thought why not just try to do it when I feel awful. I wanted to write this partly to communicate what is going on inside my head and body to friends and relatives who I haven’t been able to get it across to properly for whatever reason and to hopefully find others who will really be able to relate to what I’m going through.
So if you have never heard of FMS or are just not sure what it really is, according to Wikipedia: ‘Fibromyalgia is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure. Other symptoms include tiredness to a degree that normal activities are affected, sleep problems and troubles with memory. Some people also report restless leg syndrome, bowel or bladder problems, numbness and tingling and sensitivity to noise, lights or temperature. Fibromyalgia is frequently associated with depression, anxiety and post-traumatic stress disorder. Other types of chronic pain are also frequently present.
All true, but nowhere near in depth enough especially because each person who suffers with fibromyalgia can experience completely different symptoms. For me personally, my main symptoms are muscle and nerve pain (mostly in my upper body), extreme fatigue, insomnia, lack of concentration, anxiety, stomach & bowel problems, hypersensitivity, abnormal temperature regulation and numbness & tingling in my hands and feet. Fibromyalgia mostly affects women (lucky us)! Since my flimsy fibromyalgia diagnosis I’ve met around 7 or 8 other women who have the condition, although everyone experiences it differently we all seem to have being chronically fatigued in common. This is a type of tiredness that you just cannot relate to unless you have it, sleeping doesn’t help. It doesn’t matter whether you get 2 hours or 12 hours of sleep , whether you spend all day sitting on the sofa or you’ve run a marathon you always feel immensely tired.
If you have insomnia on top of that it’s doubly debilitating, you can spend all night wide awake but still be desperately tired and get barely any sleep, which makes the pain worse. When the pain gets worse it’s even more difficult to sleep and then impossible to concentrate on anything and so the cycle goes on. Something it’s important to recognise is that because it affects everyone differently you can’t judge anyone for what they can’t do. I walk everywhere, sometimes for miles and people have said to me they are amazed I can walk so far considering I have fibromyalgia but what they don’t understand is that most of the time walking actually helps me. This isn’t the case for everyone, it’s just about knowing your limits. There are many things I can’t do that others can, for example: driving! Some people are not able to work because of the condition and I have even heard about some people who can’t walk at all.
Throughout school and college I can remember having the ability to focus really well, at least on the subjects I liked/was good at and remember writing pages and pages in exams as if I couldn’t get my thoughts out quick enough. These days (I’m 26) most of the time I can barely get my words out, in speech and writing. I love books but can rarely read (not literally but the words are moving around on the page and the information will not go in my brain). The most frustrating thing is when you’re at work or trying to do something important and you literally cannot concentrate on anything , nothing goes in your head and you feel as if your brain is wading through a thick fog and you’re completely unable to articulate your thoughts and feelings. You start to think people will think you’re stupid because you never do as well as them, when in reality there is just a barrier between your vast and complex thoughts and actually being able to convey them. I believe a lot of he cognitive problems associated with FMS are to do with anxiety, personally my problem is overthinking and an inability to concentrate on only one thing. Most people I know with fibromyalgia also have anxiety which is no coincidence. There is a strong link between anxiety, PTSD and other psychological problems and FMS. A lot of people’s fibro is triggered by a traumatic event such as an car accident, abuse in early life or bereavement. For me I cannot pinpoint it to one event, I believe it is caused by my predisposition to anxiety (which has been made worse by physical symptoms and vice versa) along with my over sensitivity to EVERYTHING both physically and psyhologically. I’m going to write a separate post about the link between FMS and anxiety as I could go on forever ! I think Lady Gaga came up with the best explanation for it :
“For me, and I think for many others, it’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result.”
We all have our triggers which send us into a ‘flare’, common ones being: stress, changes in weather, physical exertion, certain foods, alcohol and being over stimulated (loud noises, crowds etc). Being a natural introvert I get exhausted when being around people, this actually causes me physical pain which a lot of people find very difficult to understand . I gather energy from being alone or just with my husband and our cat and my energy is drained when i’m in a group of people which causes me a lot of irritability and I get to the point where I will just stop speaking as even that is too much effort. Again, I have got a lot to say about introversion which I will save for another time!
Every day is different with fibromyalgia, some days you will wake up so stiff you can barely get out of bed , other days you might only experience mild pain , others you might just feel sick and have really bad IBS and some days you will just lay there crying in pain and this may only last for a couple of hours or it could last for months. Usually, there’s no rhyme nor reason for why we feel the way we do, when we feel it and for how long we feel it. For me, when it started I literally woke up one morning and my hands were so stiff, painful and swollen I could barely move my fingers enough to dress myself – my first thought was that it was arthritis. This lasted for a few months before it migrated into other parts of my body and the type of pain changed, I was tested for arthritis and anemia initially which came back clear. I knew about FMS because my mum was diagnosed with it too so always knew it was a possibility.
When you have fibromyalgia you have to be your own doctor, what I mean by that is that most doctors have no idea what it actually is and ‘diagnose’ (I use that term loosely) you with it when they can’t find anything else immediately wrong with you and then never actually tell you what it entails. You have to research everything for yourself , luckily for me I already knew quite a lot about it. For a long time I wasn’t happy with that conclusion (and sometimes I’m still not), I was tested for MS, diabetes, Hyperthyroidism and Anemia. In my opinion that’s not enough conditions to be tested for in the space of 6 years to rule everything out considering the vast and ever changing symptoms and despite many many visits to the doctors. The way they diagnose FMS is by basically poking 18 ‘pain points’ on the body and asking if they hurt which is ridiculous in my opinion because the pain moves around the body all the time, what hurts today will not be the same type of pain or in the same place as tomorrow. The Rheumatologist I saw said something like ‘yeah it’s most likely Fibromyalgia’ which is all that’s on my record. A few years later, before I was tested for MS I saw a neurologist who said he thinks it’s ‘functional neurological disorder’ which is basically the same thing (except only covers the neurological type symptoms), another wishy washy ‘we don’t know what’s wrong with you , it doesn’t show up on any of our tests, you don’t look ill, just deal with it, it might go away ‘ type answer. It seems that the diagnosis is different depending on which specialist you see. Don’t get me wrong, I do think the NHS is amazing in general just not when it comes to FMS in my experience.
A lot of people think fibro is all in our heads, which it is to a degree. Not because it doesn’t exist but because it’s linked to our subconscious emotions and our brains are sending pain signals to certain parts of our bodies when there is not necessarily anything physically there to cause the pain. However, the pain is VERY real. FMS is not a degenerative condition meaning it may get worse but there’s just as much chance it will get better. It seems that we all go through good and bad periods with it.
Some tips I would like to share with anyone suffering from FMS, CFS, ME and anxiety/depression: I don’t take any medication for anything at the moment , that’s a personal choice which may not be for everyone but along side any medication you are taking I believe trying to stick to a healthy diet really does help (I’m not always so good at this one myself) .Completely cutting out alcohol and caffeine and not smoking. Using natural remedies such as lavender oil, peppermint oil, orange oil (as a massage oil or in the bath). Using cleaning products and toiletries with little to no chemicals in. Listen to music as often as you can as well as relaxation and meditation music. Do Yoga! I used to think I couldn’t because it would cause more pain but it’s actually brilliant if you go at your own pace and don’t push yourself physically. Use CBD oil. Take vitamins & supplements, the most effective ones including: Magnesium (tablets and body spray) Vitamin D, Vitamin C, Iron, Vitamin B, Zinc,selenium and Tumeric. Set routines for yourself , make a list everyday of what you’re going to do, prioritise them (but don’t give yourself a hard time if you can’t get everything done). E.g going to be at a certain time everyday ( If you can get to sleep!) planning what you’re going to eat , what you’re going to wear just makes everything easier. Do something creative, if you are able to paint or draw or write or sing. Whatever it is, just do something creative even if you don’t believe you have any talent it doesn’t matter, if you are physically able, do it. you’re doing it for you, no one else ! Art has been one of the only things to keep me sane. And most importantly do not apologise for making time for yourself and needing time to rest, try to plan ahead and make lots of time to relax and do the things you enjoy however small it is. Don’t apologise for not being able to go out , if someone can’t accept that you need to make time to rest and recover then they are not worth your time anyway !
I hope you’re not too bored by now! Thank you for reading and please let me know if there is anything you would like to add. If you agree or disagree with anything I’ve said, if this has helped you in any way or if you want to share your own experience with me. 🙂
Bigmouthstrikesagain 