Fibromyalgia

So I think it was about 2017 I started really struggling with issues like insomnia, I was sleeping really badly, I found I was really restless at night so I wasn’t quite sure what was going on with that, so I went to my doctor and I said, ‘Look, I’m really struggling with my sleep, I’ve got quite bad pain in my legs, I’m not quite sure what’s going on. And I did have a history – I’ve had a very long-term history with depression as well, so I got diagnosed with depression back in around 2006 or 2007, I think it was. So they referred me on to try some CBT for insomnia, which I did, and it seemed to help sort of from the mental side of things, with things like sleep hygiene and stuff. But I was still finding that I was really restless at night and my legs were causing the main problem. I had quite bad hip pain as well.

There is other versions, painkillers, different exercises. I did the pain group, there was a course there for eight weeks, a day, one day a week for eight weeks and, I benefited from it as well, so. It is very helpful what they do, but underneath everything that damn fibromyalgia is still there.

… a course from the pain clinic with various exercises, press ups, medicine balls, balancing, just all this things. And there was a different thing week by week, so there was also like a bit of a lecture, [points] yes, there was like seven of you, right, there was about 20 people split into groups, [gestures with hands] two sevens and one six. So one OT had them [points to the left], one OT had them [points to the right] and they were, and then over a week you had a shot at all these different, OTs.

So one was showing you films of different pains and whatever and that and the next thing, then there was exercises, various things, speaking about different treatments, experiencing different lectures. Overall it was a really good course for making you realise how your pain originated to a point, but they could never actually just pinpoint bang on what it was. But it was about coping with it, certain drugs, ways to kind of cook certain foods, [gestures with hands] certain foods to eat, which was good for you, which wasn’t, like believe it or not I’ve got oranges there that I shouldn’t have because that can fire up fibro, but I only take [points] one like every second day rather than one every day like I was.

What else? Just a, a range of different things. So it was, it was quite an intense kind of course. And I now believe there’s something like a three year waiting list to get on it [shakes head], it’s fantastic for what you get.

Just that I’ll be seen by the physiotherapy and, the consultant led thing as well, and it’s to do with, exercises, I think there’s mindfulness as well, just advice really on how to, how to live with it daily, “You’re not going to get better but it’s just a case of managing with it”, he said you know, “It’s just, you’ve just got to get on with it really” [laughs] [shrugs].

So [the pain clinic in the city], they got in touch with me around about May time, to do an assessment, I had to talk to them to tell me what my daily life, my routine’s like and how I feel and, to see really if they could accept me on to the course, if you know, if it was appropriate. And then they got back to me to say yes, I’d be seen by, a pain consultant and the physiotherapy, therapist, and then I’ll be able to attend the ten week course, don’t know when that’s going to be.

I go to a lady in [a nearby town] that gives me a deep tissue massage, and she breaks down the knots in my body. I also go to another physiotherapist in the town and she works on the muscles in my bottom and my lower back.

I get more, I get more sense out of these people. Especially the, the one in the town, she’s a Polish girl and she, I’ve not long been going to her and, she’s come up with a few tips here and a few tips there, and, “You will do this. You will do this”, and, yeah, she’s helped quite a lot. In fact I get more advice from her than I would from the doctor, but she’s not a doctor.

What kind of difference does that make to you know, giving, getting these tips and this kind of advice and …

She’s …

… she’s pushing you know, “You’re doing this”?

I’m always pleased with myself because I get to the stage where I think, “Is it”, I spend far too much time sitting in this chair, so for me to go to the girl, it’s like an outing, a painful outing, but she’s so nice and she’s so funny and she makes me feel good, and she helps me.

And, although I’m paying for this service, I would gladly pay a doctor for that service, which we don’t get, a tablet will fix everything when the doctor, but it doesn’t, it doesn’t fix us, it doesn’t even, doesn’t even look at it.

How did you find out about that you know, like okay, maybe physiotherapy is something? Did somebody tell you about it you know, to try out physiotherapy or did you find out in a different way, or?

Well for a lot, a way, way back, going back a few years, well they would put you to the, the physiotherapy department at the health centre, and of course [laughs] we all know that’s a big waste of time, and it was a big waste of time. So when they got fed up with me they gave me a cortisone jab and said, “That’ll sort it” [laughs] and then that was it, [waving right hand in a goodbye gesture] “Bye” [laughs].

So that was, that’s when I thought, “Och, I’m going to have to take matters in my own hand here”.

In terms of my physios, I’ve had a good experience. The NHS physio that I saw was okay, but I think she seemed to be somebody who more specialised in like geriatric care, and like people recovering from surgeries and things like that, which I think is more common in the NHS. Whereas the physios that I’ve seen privately have usually been like sports physios and used to dealing with high level athletes, which, fits a lot better with me because I have, I still have some like left over injuries from being an athlete, but then I also have some of these other problems that like my physio at the moment is very good and he’s been able to work around.

So I don’t think that that was, my private physio was better, but I don’t think that the NHS physio was bad. I think that like, like everything that she did, and her like giving me the referral for the hydrotherapy, like that was all great, like she was doing everything that she had her, had in her ability.

I saw my GP and he thought it was a result of the accident I had been in and the fall, a combination, but as months went on and it didn’t clear up, and I’d been put on painkillers and anti-inflammatories I was told, “Right, we’ll start physiotherapy, that might help”. So I started physiotherapy for three months, which was extremely painful because what they were doing they were putting me, putting weights on me to stretch my spine, which was fine on the day, but by the next day I couldn’t move.

So what happened afterwards, did …

Absolutely nothing at all [laughs]. As I say, I tried physiotherapy, I go to a local class if I want to do the exercises for the elderly, which I can do just the same in the house, so I don’t see the need to persist in going to pain clinic that’s not actually offering what I need, I feel I need. It’s as if “We’re not listening, that’s our course of action and if you’re not happy you don’t need to come”.

No, basically I just went twice and she’s just give me a sheet with exercises to do, showed me exercises to do and away out the door.

So how, how do you feel about this kind of approach?

Maybe it’s just personality but I don’t know, I don’t actually feel comfortable going, I don’t feel, I don’t feel there’s, well talking about this rapport things, she’s not a very, person you can really build up a, that kind of person that, and that does affect how you feel and how you’re, so. It might be me that’ll quit it before she’ll quit me [laughs] to be honest [laughs].

And when I went back to my next appointment with him I explained to him, “What you had me do at the last appointment left me in bed for five days, I couldn’t move my legs”, and he said, “How did you get to the toilet?” and I thought, “Is that what you take away from that, how did I get to the toilet?” So I said, “I’m not coming back”.

So I went back to the doctor again, and I said, “Listen, I am still sore. Every time I go to a physiotherapist they want me to exercise. I’m aware that I am fat, I am aware that I’ve put on weight, I cannot exercise because I’m in pain, if you sort out my pain I will exercise” Happily, I want to.

So I was referred to a physiotherapist in the hospital this time. The others had been in the primary care centre. I went to the appointment at the hospital and I was taken in and seen by a lovely woman and she said, “You don’t look too happy to be here”, and I said, “Well because I’m not and I will tell you why”, I said, “I am not going to exercise, I am not going to squat against a wall. I am not going to do yoga positions. I am here because I am in pain and either you can help me or you can’t”, and she said, “That’s totally understandable”.

And she went through different, she actually went and got out a printout leaflet and brought it to me and gave me a list of exercises that I can do for someone with limited mobility and I looked at it and I laughed, and she said, “What’s funny?” and I went, “They’re all on the floor, I can’t get off the floor. I appreciate that you’re trying to help me but I cannot do those either because I need someone to help me off the floor, I can’t get up”, and she went, “Oh, so I take it you don’t want to come back for a follow up appointment?” and I said, “No, I don’t want to”.

Right now, no. I’ve tried different forms of therapy through the NHS, things like CBT, and other things. And a lot of them go, “It’s a physical problem, we can’t help you”, and they don’t seem to see that I have these two separate entities; they only see them as one.

And although I am depressed because I’m in pain, I’m not just depressed because I’m in pain, I’m also depressed because of X, Y and Z and, so then a lot of people have been like, “Oh, you’re in pain because you’re depressed”. And then when they kind of go, “Oh, it’s a physical thing, I can’t help you”, or “You’re putting barriers up”, I’m like, “I’m not putting barriers up, I’m literally telling you I physically can’t do that because I have a disability”.

And yeah, so I’ve had some, sort of the CBT people weren’t very great; I just think it was just unfortunate of the people that I was speaking to really.

And then I’ve tried different therapists and a lot of the time they have very weird ways of working, and people say like it takes a while to find the right therapist for you, but when you’ve seen so many and you’ve not had a great time with most of them it, it kind of makes you stop wanting to go to them.

And then before I decided to hand my notice in work I saw a therapist privately, but she was very expensive and, so I couldn’t really afford to go again particularly now that I don’t have a job.

So I think it’s very difficult, and it’s great that the NHS does provide these services but it just takes an awfully long time to talk to someone, and they’re always short term, they’re not ever really long term, and the long term ones you have to pay for but they can be extortionately priced, particularly trying to find someone that deals with chronic pain as well.

I’ve been having some counselling recently. I was on the waiting list for a very long time but I have got, had started some sessions now. And I think through that I’ve figured out that, a lot of it also ties into, things that have happened in my past you know, things like you know, self-esteem and self-belief and all of that kind of stuff. But I’ve also realised from that that I need, much longer term support than the NHS can offer, which you know, you think, “I need to do this thing and I want to do this thing”, but then you have that reminder of, “You can’t get this through the NHS, how are you going to pay for all of this?” and you know, again, you’re having to do that question of you know, “How, how am I, am I earning enough to get the support and”, sorry, spend money on the things that I need you know.

There’s definitely a worry of I’m going to get to a point financially where I think well you know, I’m having to choose between necessities for you know, basic every day necessities that everyone needs and this longer term support that I need and you know, how do you choose between those two?

That sounds like a very difficult one. So does it mean now you have just a you know, a certain amount of counselling sessions you know, approved by the NHS you know, like which you can take?

Yes. So, initially they offer you, six sessions, they can be extended to eight if, you and your, counsellor think that that’s appropriate, but that’s it, that’s all they can offer on that, which I think you know, if you go in there and you’ve got maybe one or maybe two things that have been weighing on your mind and you want some help working through I think that could be enough.

But I think anybody going in with a chronic illness, that’s, it’s not enough, it you know, because things change with time as well you know, if you go in there and you have eight sessions at the beginning of your diagnosis and early on you know, you have different worries and concerns from then six months, a year, two years later. I just don’t feel like there’s enough support for mental health with people with chronic illnesses, I feel like that’s not a discussion that is being had and being taken seriously.

My latest counsellor that I’ve got is really good though, and she has like recognised a lot of different things and seems to be taking it fairly seriously. And also now I’m in a position where I actually, I want to work on the different things, so that makes a huge difference.

Okay. One of the most important things for me in terms of a relationship that I have with any form of healthcare provider is actually having the person listen to me, which is something that I have struggled with a lot because a lot of the time people say, “Oh, but you look fine, you don’t look ill, you seem fine”. And just generally I often come away with a feeling of they don’t actually believe what I’m saying, which is frustrating, but it’s also difficult because I tend to play down my symptoms a lot of the time because I don’t want to make a big fuss.

I’m learning that I need to do the opposite and I need to actually over emphasise how bad things are, because a lot of the time it just doesn’t get through to people.

But my GP and my counsellor have both been very good at accepting what I tell them at face value, because I think that like I don’t know if they fully believe me, but they are, like in terms of the causes of my symptoms, but they seem to accept, “You are in pain”, regardless of what that comes from they can help me treat it and deal with it.

I’ve always, so I’ve suffered from depression on and off for 20 odd years and I’ve got a lot of anxiety and I go to see a psychiatrist approx every six to eight weeks I go and see, I go and see him, and that’s when I can really let him know how things are, and he also sees my sons as well with their autism.

And again, I’ve built up a really good relationship with him, and I do think, I know I’ve said this before in this, I do think it’s very important if you’ve got long term health conditions you are building that, the doctor you are seeing, the professional you’re seeing, that you’re not just a number, you’re not just a patient, you’re a person to them, and that relationship has got to be in trust and built up on both parts, and that means, that means a lot to me.

So as I say, I built up a relationship with the psychiatrist, and obviously you can tell a psychiatrist anything, but they’re, he listens and maybe tweak the medications and things like that, so I do get quite a benefit from that.

Cognitive behavioural therapy, which is again something I don’t know much about but I suspect, based on a little bit I have heard about it, can probably be highly beneficial and helpful to patients, and I think particularly with fibromyalgia, in the context of their relationships with key people around them. Loved ones, close family, friends, people who they work with. CBT is one of those areas of expertise that’s in quite short supply in the NHS, unfortunately. We don’t have a number of those guys with that expertise as we would like.

I think most people, I mean, some people will have the resources, maybe, to get their own provider. But the disadvantage of that is that it’s disconnected with the rest of your healthcare, even to the extent of… you know, it’s much better, I think, in the case of a CBT practitioner, they can pull up your healthcare record before you go in and have your appointment with them. If they were in a freestanding private practice, probably that wouldn’t be possible.

Yeah, great. 

And a CBT practitioner would probably say, in terms of what you were asking me about restrictions on day to day life, they would probably try and get you from not being a mindset of focussed on the restrictions and all the constraints and the things that you can’t do, to the other mindset or realising what you are capable of, and making maximum use of what capability you do have.

And how do you feel, you know, about shifting this focus from… “This is things I can’t do anymore,” to, “These are the things I can do at certain times,” you know, how do you feel like, what kind of difference does that shift or focus can make to a person?

I mean, obviously I haven’t had the benefit of a huge amount of contact time with these specialists, but I suspect it could be incredibly powerful and it could be, almost transformative. Not in a single moment, but over a programme of interaction with a specialist.

I was offered CBT, I was offered the pain clinic and I thought, “Talking about this isn’t going to make me feel better, I know what I’m living with, talking about someone else isn’t going to make me feel better.” It’s not going to make the pain go away, I know I’m in pain, I don’t need anyone to confirm that. I’m not particularly happy about taking lots of painkillers for the pain because it just leads to other issues. So the rheumatoid arthritis bit of it, I’m well supported with it. And there is probably a connection between the two: the rheumatoid arthritis and the fibromyalgia. So, I feel that the support I’m getting with the rheumatoid arthritis is supporting the fibromyalgia, you know, and helping it. But that’s me, my opinion.

No, you have periods in a year, I would say in a year I would have three periods where it’s severe and the rest of the time it’s manageable. If you go out your comfort zone and do things, like I wouldn’t go to a full on exercise class because that would trigger it all off again. So it’s within yourself to actually manage your symptoms by not doing things, not doing nothing but just certain things you know, don’t lift heavy paint pots, don’t paint the ceiling because these things trigger off a bad bout where you’re incapacitated for two or three weeks at a time.