Fibromyalgia

Okay. Well, back, I think it was 2013, I was experiencing lots of pain… mainly my hands and my feet and other parts of my body. To a degree that if I went shopping I couldn’t physically take the [gestures with hand] you know in a shop, the conveyor belt when your shopping comes along, trying to pick it up and put it in the bags, I just couldn’t use my hands properly and it was really painful. So I went to see my GP and she did a little bit of examination and she more or less just said, “You’ve got fibromyalgia,” and she printed out a sheet with information which has got the date on it, that’s why I know the date I went. And she prescribed me some painkillers and basically, apart from going back and forth with pain, that’s all I’ve ever had is painkillers.

I first noticed symptoms of fibromyalgia, which I didn’t know what it was, as far back as 2000. I was working as a welder and I was getting all these pains in various places of my body and getting headaches, tiredness, forgetfulness, I didn’t know what it was.

I was back and forward to the surgery, yes, the local GP, they gave me different [points to side] I forget what you call it, different reasons for this and different reasons for that, but it was, nobody gave me anything. They gave me painkillers and different things, nothing was working until one day I couldn’t breathe.

Well the pain, but not knowing what it was I was very curious to see what was causing it, because initially I couldn’t get breath, so I was taking the asthma inhalers and I was getting awful pains just [uses finger to gesture] between the base of my neck to the middle of my spine, you breathe out, “Oh”, never thinking it would be musculoskeletal.

Yeah, so I first started getting, when I first started getting symptoms, I didn’t realise that they were symptoms of fibromyalgia. I first started getting them in around November of 2018. And, actually the first morning I got them I remember vividly, I was walking to the, I was walking to a bus stop to, go to college and, I just got this really sharp searing pain in my legs and I could barely walk, I had no idea what it was and it was really scary.

And I called my GP and, what they said to me is because, I was on steroid treatment at the time for a different, condition that I have, I have an autoimmune condition, so they suspected that it was because of the steroids, muscle pain is a very side effect of the steroids that I was on at the time, so they suspected it was that. Their suggestion was to drink some tonic water and that should help ease it, and I was just repeatedly told you know, “As you start to reduce the steroids the pain will get better and things will get back to normal”.

So this happened for a few months and then, around January of 2019 it started, spreading, it moved into my arms and my hands, so it wasn’t just in my legs. And, at the time I was studying, for a music performance degree, I was studying viola, and it got to the point where I couldn’t even pick my instrument up and play for sort of five minutes, I couldn’t do it. So, because of that I had to, drop out of my degree, I had to come back, I moved back home.

But again you know, we thought it was just the steroids. All the doctors that I was seeing thought it was just the steroids and that things would get better once I’d reduced that and come off them.

So, we then started reducing the steroids more quickly because you know, we wanted to get rid of the muscle pain as quickly as we could. I noticed that the pain wasn’t getting any better, if anything it was getting worse. So I think this is around May or June 2019, I went back to my GP and I just said, “Look, this pain is getting worse, it’s in my joints, it’s in my muscles you know”, I can’t do basic things like make a cup of tea because the kettle was too heavy for me to pick up and you know, at 23/24 years old that’s not normal [laughs].

Okay. My journey with fibromyalgia was quite complex. I worked in social care for 20-odd years as a senior carer, and one of the nurses had noticed a swelling in my hands that was abnormal, really quite firey-red, sausage fingers. And it took two years to get diagnosed because I wasn’t A-typical, but I had arthritis and it was quite an ongoing debilitating arthritis, but I stayed at my work for about three to four years, you know, during that. But with about six months into having this arthritis diagnosis, I was at a rheumatology appointment, and I’d been having horrendous pain. Painkillers weren’t even touching it, it was just awful. And I had very sensitive skin to touch, it was dreadful, and a very sensitive spot between the shoulder blades, at the hips and halfway down my legs. And at that time, I just put it down to having the arthritis and that’s what it was, but when I was seeing the rheumatologist, he said, ‘Well, no, because the drugs you’re on should help with your arthritis, and actually your arthritis is not under control but it’s better than it was.’

So we looked at other things that it could be, and it was evident because I was – we waited for the next two-or three-month meeting, and then it was evident from… I had horrendous fatigue, I was, but with this fatigue, it wasn’t like a normal fatigue. I could be okay in the morning and by dinner time, I could be wiped out and having to go to bed. And when I mean I get this horrible feeling that comes over me, and you have no energy, and I mean you can’t even hardly move one foot in front of the other. And if you sleep – because you have to, you think you have to lie down, even if it’s only for 20 or 30 minutes, just to get you refreshed, it doesn’t work. It’s not like a fatigue you can ever recover from; it’s a debilitating fatigue. What used to take me five minutes to do anything, can take me up to two to three hours now. It’s really frustrating.

And from somebody who had always been active and been the person that did everything for everybody, I really struggle with people having to do everyday things for me. Up to even just having a shower became impossible. I couldn’t get in my bath, I couldn’t lift my legs up, I used to get horrendous cramp in both thighs and get spasms, horrendous spasms. That was definitely the fibro and not my arthritis.

The sparkler burn feelings that I sometimes get, sometimes, are very painful. They’re one of the sorest things you can get. And luckily it doesn’t last for too long, but god, when it does, it is really, really, really painful.

I’ve had pains, swellings for about maybe ten years, but because I was so active, a lot of the times I thought it was simply because of maybe I was walking too much, maybe I’m overdoing it, and okay, maybe I need to icepack, rest. Or maybe my ankles are just big, you know? All of these different things, and I kind of ignored it. I would take maybe a tablet here, a tablet there, then I just got a bit worse. But one day I was at work, I’d just finished seeing a patient and I left the patient’s house and I kind of noticed that I wasn’t feeling great. I thought, “Oh, I’m getting a 24-hour bug,” carried on, went to see my last patient. And my last patient remarked, “You should be in bed, you should not be at work,” so I said, “Yeah, I know, I’m just suddenly not feeling well, I think I’m getting a bug, so after you I’m just going to go home.” The Tube station from her house would normally take me about five to seven minutes; it took me over half an hour to walk to the Tube station. I was just like, I am not well, I know I’m not well. That’s all I could say, it was like, I couldn’t think of anything else. I got to the Tube, sat on the Tube and can’t tell you what happened after. I literally went into such a deep sleep that when I got to my station, the guys who pick up papers on the train actually [touched] me and said, “You’re at the last stop, the train’s not going any further, you’ve got to get off.” And I kind of got up quite dazed, you know like, “What?” and I struggled up the steps of the Tube station to get to the lift, got on the bus, got home. And promptly rang my husband and said, “I’m not well, I’m just going to be in bed.” I rang my office and I said, “Listen, I’m, I’ve just come home because I’m just not well,” and they said, “Yeah, you didn’t sound well when you kept checking in with us but you know, we thought oh maybe you’d just got a cold or something and we didn’t notice it in the office.”

The next morning, I got up to go to work, got up and literally fell back on to the bed. What is this pain? Why am I in so much pain? My head felt like it was exploding to begin with, my back hurt, my hands hurt, everywhere is just like… just this pain.

As I got older I kept getting ruptured ovarian cysts, which were incredibly painful but I was put under gynaecology to rule out endometriosis, which they did thankfully. And then about three or four years ago on Christmas Day all of a sudden my entire body just stopped working as it should, nerve pain down my legs, through my arms, stabbing pains in my stomach, and just this feeling of nausea that I’d never experience before.

I sort of brushed it off thinking it was another ruptured cyst, and just my body’d reacted differently, but I was, I sort of spoke to the doctor about it, they got a little bit concerned, but because I’ve had such a long history of chronic pain they kind of were a little bit hesitant in sort of referring me to somewhere else. I think a lot of the time with, people like myself they often think we’re slightly hypochondriacle, which is unfortunate but I can understand why.

Okay, I’m 33 now, so when I was 16 I was diagnosed with depression, and over the years, into my late teens or early 20s I noticed that, I started getting pain across my shoulders and into my neck, and I went to the doctor and was told, “It’s just stress and tension, just try to relax. You also have anxiety, try to relax, don’t bring your shoulders up to your ears, try to relax”.

And then over the years I ended up going to different doctors with different types of pain; pain in my wrist, headaches, fatigue, feeling really tired, and I used to have a lot of energy, I mean I was very sporty at school, I mean I would climb trees and lampposts and you know, I was in the Army Cadets, I wanted to be a soldier, and then I just lost all my energy. I went to a different doctor who suggested it’s because of the depression and that I need to get up and go, and I said, “I can’t, I’m too sore”

So at that time I lived in a city, whereas now I live in small country town, so I have changed doctors yet again, and the doctor that I’m currently with has said that the only thing that I need to do is accept that I’m in pain and will be for the rest of [my] life, and that I need to learn to cope with chronic illness.

But in the meantime the pain has got worse, it has spread to my arms and legs and my shins and my feet and my other wrist now hurts too.