Michael
Michael was diagnosed with fibromyalgia in 2018. He is concerned about a lack of information and guidance for patients with fibromyalgia. He thinks that those with the condition would benefit from having a ‘care plan’ and regular reviews with their GP.
Michael is 63. He had to retire early due to complex health issues. Ethnicity: White English
More about me...
Michael describes having a long and complex medical history, starting with an abdominal tumour diagnosis about 35 years ago while at university. Treatment for this involved both chemotherapy and radiotherapy which he remembers was “very heavy” at the time. These treatments have resulted in a range of health problems to this day (for example, gastrointestinal, kidney, urological and neurological problems relating to nerve damage).
Over the last 10-15 years, Michael’s health issues worsened. He also noticed that he was becoming increasingly fatigued, resulting in him taking early retirement from his job. The neurological issues have also been impacting progressively on his mobility. Two years ago, Michael suffered a very severe flu infection which resulted in him being hospitalised with pneumonia. His fatigue symptoms in the aftermath were a lot worse, and he sought further advice from his GP. Several blood tests were carried out by his GP to check for underlying inflammatory issues, and he was referred to a rheumatologist. He describes the rheumatologist as being very clear that there was no evidence for underlying inflammatory issues, but they gave a diagnosis of fibromyalgia. The rheumatologist gave Michael an information booklet (produced by Versus Arthritis), but otherwise could offer no further advice or treatment.
Michael is unsure about the diagnosis. He feels that he doesn’t yet know enough to be sure because it can be “quite difficult to unpick symptoms and assign them to one issue as opposed to another” given all his other health conditions. Further, he has received contradicting information from various health professionals involved in his care.
In March last year, Michael contracted a viral illness again and suspects that it could have been coronavirus (COVID-19), but no tests were available at the time to confirm. He had a “complete loss of sense of taste” and experienced musculoskeletal-type pains. A lot of his other existing symptoms, especially fatigue have worsened in the aftermath. He describes one of the consequences of the fatigue as having now “almost a clouding effect, and on the bad days it turns life from being technicolour into monochrome…”.
Michael finds it helpful that he is mostly able to interact with the same GP about his various health issues. However, he describes “bewilderment” and “shock” at not being offered a follow appointment with the rheumatologist after his initial fibromyalgia diagnosis. In terms of long-term support, he thinks that people with fibromyalgia would benefit from having a ‘care plan’ and regular reviews with their GPs.
Due to the health difficulties he has experienced over the years, Michael feels he has “become quite good at…coping” despite often feeling frustrated by the constraints he lives under, especially around fatigue and mobility. One of his strategies is to take advantage of good days. He feels it is very important to engage in enjoyable activities, even though he may feel worse afterwards. On bad days, he tries to pace himself and focus on things he can do. Michael participates in public and patient involvement activities that support health professionals and researchers to improve healthcare. He also finds his friends and neighbours very supportive. Although he “values [his] independence…”, he is “…conscious of [his] vulnerability and [his] limitations”, and implications for the future if his symptoms worsen.
Michael thought that he should be given more resources and signposting when he was diagnosed.
Michael thought that he should be given more resources and signposting when he was diagnosed.
Yeah, I mean, it’s not great, quite frankly. I think with hindsight, I should have been given much greater clarity and a much greater pack of resources, including some signposting. When I came out of that appointment with the rheumatologist, and of course it’s easy for me to think back and say, “Well, I should have said X, Y and Z,” but you know, at the time you’re, you know, kind of knocked backed by what you’ve been told if it was unexpected and you’re just trying to come to terms with it. But yeah, that wasn’t very good. And by the way, something that is part of the inconsistency in healthcare these days, is whether a patient finds doctors, consultants, they’re supported by clinical nurse specialists.
Michael hadn’t been prepared for a diagnosis of fibromyalgia and was left surprised when the rheumatologist said there was no need for a follow up appointment.
Michael hadn’t been prepared for a diagnosis of fibromyalgia and was left surprised when the rheumatologist said there was no need for a follow up appointment.
That was about two years ago and it was the first time I’d heard, you know, mention of… I’d heard of fibromyalgia but it was the first time a healthcare professional had given me that label alongside, you know all the other, all the other conditions I have. 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.
So yeah, that’s how all of, all of that happened. And then after I’d seen the rheumatologist and reviewed the blood test results with her, she gave me this diagnosis of fibromyalgia, and I mean, that, that was quite a… a shock really, to be given that, given that [gestures with hands]. You know, something completely new when I’ve got all of these things and I’ve got them kind of all arranged in my mind and I thought I understood the picture. To have something significant and new added into that… so I wasn’t really prepared for that. And my GP hadn’t said, “Oh, by the way, I think you might have fibromyalgia,” so I wasn’t pre-informed before the consultation with the rheumatologist, that that might be what her conclusion was.
And it’s a bit disempowering, you know, when you’re not, you’re not ready for it, you know? You don’t have the questions to ask that you otherwise might have had, if you had more time to think it through. I think the only question I asked her was, well, you know, “Is there any treatment or therapy or help or assistance that, that you can direct me to or recommend to me, that will help with it?” and that’s when she went to the set of booklets and picked out the one, I think, produced by the charity Versus Arthritis, and gave me the one on fibromyalgia.
And she said, you know, “Go away and have a read of that, there’s some self-help groups and so on,” and that was it. And I didn’t have a follow-up appointment with her, she said, “I don’t think there’s any benefit in you having any follow-up appointment with me, I’ll write back to your GP and I’ll copy you in and let your GP know what my, what my findings are.”
So when she said, you know, “I don’t see any benefit for a follow-up from my side,” and you know, how did you feel about this whole kind of appointment then?
Well, I think, in terms of emotions, shock is number one, as I’ve said. And bewilderment is the second one.
Michael thinks that the neurological problems resulting from his past treatment for cancer contributed to his fibromyalgia.
Michael thinks that the neurological problems resulting from his past treatment for cancer contributed to his fibromyalgia.
So initially, I had gastrointestinal problems leading to me needing to have a stomach operation, that was because of the radiotherapy damage to my stomach. I had cardiovascular issues, kidney issues, other urology issues, neurological issues, and the, I have a feeling based on my understanding of fibromyalgia that my neurological problems, caused by the damage to my nervous system from past chemotherapy and radiotherapy, overlapped with what is being called fibromyalgia in my, in my own case.
Michael can see the potential for CBT to be useful.
Michael can see the potential for CBT to be useful.
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.
Michael says it can be “quite difficult to unpick symptoms and assign them to one issue as opposed to another.”
Michael says it can be “quite difficult to unpick symptoms and assign them to one issue as opposed to another.”
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.
Michael got advice about various aids from a Disability Living centre which he found helpful.
Michael got advice about various aids from a Disability Living centre which he found helpful.
I got initially, I got a perching stool. She gave me some steps, a bit like a giant version of a stand that you put a computer monitor on, you know where there’s things for players. Because I had a shower that had a step in it. She gave me some advice on stairs, and having an extra handrail, and she gave me some of those things that I absolutely hate but are quite useful, that go on toilets to make the toilet a bit higher. Now, one of the big benefits I got from the financial assistance through the PIP was, and again, was help from my sister with, you know, with OT, on one of her visits we went to… there’s a Disability Living Centre in [the city] and we went there and got some advice on bath lifters and all sorts of different things. And then we went to a local firm that does kitchens and bathrooms, a firm that I know, one of their specialisms is disability bathrooms.
So I had all of the bathrooms refitted, including the downstairs toilet, with a toilet that… well, I think the rather interesting language they used in the showroom was “comfort height”. I mean, it’s higher than the old toilet was, even with this screw-on attachment, but it doesn’t look like, you know… and they don’t look very hygienic either, those things that screw on to the toilet. So, functionally it’s better, it’s higher, it’s clean and contemporary-looking, you know? And you know, the money I got through the Personal Independence Payment helped pay for all of that. And I had some modifications done to the staircase as well, with extra handrails.
Michael says applying for benefits is not an easy process and you have to be careful how you answer the questions.
Michael says applying for benefits is not an easy process and you have to be careful how you answer the questions.
Well it goes back to the [this] clinical nurse specialist in [the city]. I think I may have mentioned this, one of the things she drew to my attention, that was in the aftermath of the change from Disability Living Allowance to Personal Independence Payment. Sorry, I think you used the initial, PIP. And yeah, I mean, what can I say about my experience?
It’s not an easy process. I think that’s a bit of an understatement. I mean just the sheer amount of paperwork. And the other thing is that, and my sister was somebody with… she’s an OT by training, an occupational therapist, but her professional career, most of it has been in community mental health support in [another region]. And when I told her about, “Oh, I’ve been recommended to apply,” I mean, she was saying, “Oh, you need to be very careful,” because all these questions in the application paperwork, are, they can seem quite benign but if you’re not careful, you can give an answer which will not do you any favours. So you almost need coaching, a bit like coaching in a job interview and so on, on how to answer the questions in the right way. My sister was very cynical about it, you know, “Well, oh, because he’s answered this, then oh well, he’s not eligible for that,” you know? It’s almost as stark as that. I just try to be as frank and honest as I could.