Fibromyalgia

Yeah, because there, with, because with fibro there are other things that come with it like the dry eyes, there are the IBS, the costochondritis you know, things, different types of things, if there’s something, if a healthcare professional knows that these things come with fibro and that there’s something that can help those symptoms, by all means refer you know.

But with fibro as a whole there, there are so many other little things embedded in there that make up the diagnosis of fibromyalgia, so I think it, it’s finding the little things and noticing the little things that might need addressed, and that in turn might then help the big thing which is fibro itself.

You know the healthcare professional, I mean I went to go and see about getting laser eye surgery done but because I had dry eyes I couldn’t get it done, and I have to have drops in my eyes now all the time, and the doctor didn’t notice that. I went to the doctor because my eyes were streaming and he said, “It’s hayfever”, and I said, “It’s winter, I don’t have hayfever, it’s winter”.

But when I went to get the laser eye surgery I was told, “No, you’ve got dry eyes, you can’t have it done”, I thought, “Well if that had have been picked up I could’ve been having the treatment for the dry eyes sooner”. You know there’s things different healthcare professionals might notice about someone that they can then make a difference to.

So how would they you know, find out about or you know, notice these little things, how could they find out about that?

I think it’s communication, it’s asking the patient, “Has anything changed? Is there anything worse or better?” you know, there’s like a list of things that come with fibromyalgia, it’s asking them, “Do you have this? Do you think you might have this?”

You know like with the IBS, a lot of people have bowel issues and don’t realise that it’s connected. Dry eyes you know, the costochondritis, like the pain in my chest, people don’t realise that they’re all connected.

So it’s asking the patients those questions and finding out for themselves you know. It might take that, it might take that bit more time with that one patient, but it’s time that that patient will appreciate.

And then after about say three years it seemed to disappear again, and I became back to normal. And then I started getting symptoms, again, I was getting tired again, I started getting the symptoms that I was then told was irritable bowel syndromes, and basically everything degenerated again. I was in quite a lot of pain, I get a lot of muscle pain, knots, particularly in my back, my shoulders, my neck is always jammed up, my shoulder blades are terrible, and that gives you a long headache because all your muscles are just in knots and jammed.

I started getting very, very cold; I could never get warm. My mental process slowed down very much and I found I had a lot of mental fog, I couldn’t process information very well, and lots of really peculiar things such as, lack of facial recognition, so unless it was somebody I knew very, very well, if somebody had been and spoken to me, and came back again even a few minutes later I wouldn’t recognise then, which could actually be, well frustrating, but exceedingly embarrassing.

I’ve become quite dyslexic, with numbers and writing, my handwriting’s gone quite peculiar, lots of different things. But after my symptoms appeared, they came on fairly quickly and they got more severe, and I was at the time, the second time they appeared working as a gardener, and eventually I had to give up work, partly because of the tiredness because I literally couldn’t stay awake, I was just falling asleep anywhere, partly because of the pain in my muscles and the IBS, and eventually I gave up work and, I didn’t work for over three years and was finding it hard to get back into it, but at the time, I had to go for, doctors’ appointments, whatever and they said whether they thought you should be back at work or not.

But I went back to the GP and I said, ‘Look, I’m just still not feeling right, I’m feeling really tired, I’m feeling really achy,’ I was sometimes getting quite odd rashes on my legs as well, so weird bruising or just that my legs would get really itchy and I would itchy my legs, and then it would come up with like a bruise, yeah, it looked like a bruise on my legs. And I just said, ‘I just don’t feel right.’ And I think because I’d had depression for a long time as well, I was thinking, ‘Maybe it’s my mental health that’s not very good.’ But I thought, actually, my mental health had been really good and it’s been stable for a really long time. There was nothing really significant going on in my life, you know, I’d just got married, I was you know settling down into a really nice way of working and things like that, so there was nothing to make me feel depressed. I said, ‘This isn’t depression, this is something more.’

And then, so I was on medication then, so I was on the naproxen and paracetamol until, I’m trying to think now, say about four years after, again physiotherapy for back, elbows, and then in between this with the pain I was experiencing horrible tiredness as well, which we just put it down to being a mum, and then also headaches and other things going on, irritable bowel and what have you, and depression, which again they just thought it was just postnatal depression and then carried on and on.

Well, other things have developed over the years. Swellings under my skin, lumps, hard lumps that have to be massaged. I’ve had a tennis elbow for the last five years, the soles of my feet, it’s like golf ball-sized lumps. My hands are swollen still, my jaw it has got worse… I have to literally… if I don’t speak for half an hour, I have to put my fingers in my mouth to push open my jaws, to just allow me to even get a fork or a spoon into my mouth. My key, my dentist is still not able to treat me. And then Covid-19 happened and the hospital is not able to treat me, so I still have touches both jaws with left hand] cavity where one of my teeth just died, the roots just died. And my tooth seems to be breaking and no one is able to give me answers yet as to why. Those symptoms I think have increased. The headaches have increased, they come on… I used to have, I sort of normally have a low-grade headache, but occasionally there will be a spike out of nowhere, just a spike that can last for three or four days. What else? My knees have gotten worse and my ankles – I can no longer wear heels. I love heels, speciality four-and-a-half inches because I’m short. I’m at the point of selling my shoes because I literally can’t wear them. I can’t wear my long dresses because I’m tripping over them, I trip over my feet at the slightest thing. I have what I call the power-down, I’m walking and suddenly, like a car without any petrol, I come to a standstill and I can’t move. So, I call it the power-down, it’s my word, you know? I just power-down and then I have to wait to get some petrol back in the tank to move again.

What’s, what is fibro and what is not fibro. And I’ve been to the doctor many times because I felt so awful and they say, “It’s just your fibro”. But they’re only looking at me, how do they know it’s just my fibro when I’m sitting at home worried sick that it’s not fibro, that it’s something else and they’re just chalking it up as that? It’s, it’s scary, very scary, very worrying.

Sometimes, that’s a good question, sometimes I think, “Oh, my goodness I’m, what is this pain?” sometimes I think it’s a heart attack and then only to find out that I’ve got wind trapped round my body that you have to move to get rid of it, which is not very elegant sometimes [laughs].

And you’ll understand from what I’ve just said, I guess, Stefanie that with my basket of health conditions, it’s actually quite difficult to unpick symptoms and assign them to one issue as opposed to another.

Two years ago, after the flu pneumonia, that was manifested mainly in my hand, I had a very painful wrist. And actually, first thing in the morning, I couldn’t actually clench my left fist. That hasn’t really come back this time, in the aftermath of this recent viral infection, but I’ve had sort of upper body pains in the sort of shoulder area. The level of the upper body pain almost seems like an indicator of all the other symptoms, so when the pain is worse, the fatigue is worse, gastric upset is worse, and all the other things.

I don’t think I’ve had any problems with it, but I think I’m quite lucky in that my research or my – my job is around mental health. I think where I’ve had depression for quite a long time and from sort of, yeah, around the age of 18, 19, I’ve sort of noticed that my moods have never been great. It’s almost like before the fibromyalgia came along, I’d had enough time to sort out the depression, so I’d had counselling, I’d had CBT, and I did quite a lot of the sort of counselling and therapy side of things before I then made the decision to go onto the antidepressants.

But I think it’s the fact that I was able to say to my doctor, ‘Look, I know I’ve got depression written down and I know it’s on my records,’ but I think as well, I’d managed my depression really quite well and I’d never had any sort of really significant crises or I wasn’t going to the doctor every five minutes to say, ‘My mental health’s not good,’ so I think again, by the GP having that empathy as well, I think she was able to sit there and say, ‘Okay, you know what you’re talking about, you know that it’s not your mental health,’ and it’s the fact as well that I was able to separate out the mental problems.

Another thing is that I had quite significant problems with my concentration, my memory… my memory’s never been brilliant, but… [laughs] you know, ask me what I had for dinner yesterday and I can’t remember. But it’s it was just something… you know, it was the fact that, sort of, the concentration side of things was not because my mood wasn’t good or I was struggling, and then things like leg pain or restless legs or the fact that my skin really hurt to the touch, that’s not a mental health problem as such. So I think that she understood it and I think she gave me the time to be able to explain exactly what was going on as well, so I think that was something that was really helpful.

So I think for me, sort of, the depression side of things, obviously I know there will be… so, the fibromyalgia will make me feel down and then by feeling down, it might make my fibromyalgia worse or more aware of my symptoms, so they, they do sort of mix together. There is you know, there is some overlap. But I think for me, when I do have a depressive episode or if I do have a real drop in my depression, I know that that’s depression compared to the fibromyalgia. When I have a flare-up of my fibromyalgia symptoms, mentally, I’m normally quite good because I want to keep going and doing things, which when I’m depressed, I just want to stop.