It turns out that when I was first diagnosed with fibromyalgia, the doctor didn’t feel the need to actually tell me. Yes, you read that right! I had seen a rheumatologist for Raynaud's and she asked me to do various blood tests, and examined me too. I presumed they were Raynauds-related. Later, I discovered that in my hospital notes she diagnosed me with fibromyalgia. Of course, I received no treatment at that point.
It was some years later that my GP raised the possibility that I had fibromyalgia as I had chronic fatigue and pain. After a few more tests to rule out other conditions, a specialist doctor diagnosed me with the condition. I was lucky to have been seen at an integrated clinic where you can see other health professionals after your diagnosis. I found it to be invaluable, and I want to share my experience in case it is helpful for you too.
Aside from my medical doctor I saw a physiotherapist, dietician, occupational therapist and a CBT therapist. Here’s the kind of care they offered me as a patient with fibromyalgia. Please note that this is specific to me, and they tailor their input to each person as an individual patient.
This is simply my story, and this post is for informational purposes only. It does not constitute medical care in any way.
One of the characteristics of fibromyalgia is having stiff and tight muscles, especially in the morning. This can be really painful and personally I have a degree of pain and aching all the time. My physiotherapist did a full body assessment and looked at areas where I was particularly stiff and where she thought I could benefit from some stretching and ‘hands-on’ treatment. She identified that my neck was stiff in one direction, and that my hamstrings and calves needed a lot of work.
In terms of fatigue we discussed exercise, and worked out a plan to make my activity more consistent. One thing I noticed after keeping an activity journal for a few weeks as she suggested, was that my daily walking time was all over the place. Some days I was on my feet for hours, often walking long distances between medical appointments, other times it was twenty minutes in the day. She got me to start at ten minutes a day, and we worked up from there.
We also worked on some simple movements to improve overall strength, as at the time I wasn’t doing any form of weight or body weight training. She talked through core strength work and we started with that, then moved on to other exercises such as squats and modified press-ups.
Seeing a physiotherapist really gave me confidence to begin to exercise again (although I then had to pull back when dysautonomia symptoms started to emerge – and saw a different physiotherapist for that who got me back into exercise using a pedal exerciser) and how to stretch out my muscles. I still do that everyday now.
*I know graded exercise is controversial for fibromyalgia and ME/CFS. This post does NOT advocate for graded exercise therapy (GET). It has been shown to be very harmful for many people. The exercise I do is tailored to my personal circumstances.
I’ve always been quite a foodie, and now even have a low histamine recipes page where I share my home cooking for people following that diet!
Back when I was diagnosed with fibromyalgia, I thought I had a fairly good understanding of nutrition having done a module on it during my fitness instructor training and read a great deal. Reading the food diary she asked me to keep though, the dietician was able to identify where my blood sugar levels may have been a bit all over the place, with peaks and troughs. And those troughs may have been contributing to my fatigue.
Diet is a controversial one in relation to medical conditions, and while I eat low histamine as I have MCAS, I don’t subscribe to being keto, paleo or anything else. My dietician didn’t either and wanted me to eat a balanced diet with protein and carbohydrates at each meal, and have a small snack in between. She was great for making lots of suggestions, and I still remember her mantra of a piece of fruit and a handful of nuts or seeds being the perfect snack!
Having a professional review of what I was eating was also very helpful for identifying some suspected vitamin deficiencies. After some blood tests to check, it turned out that I was deficient in vitamin D, so I now use the BetterYou vitamin D spray, as well as iron so I use the Solgar gentle iron as it doesn't upset my stomach like regular iron tablets do. My levels have been normal for a long time now!
I had no idea what an occupational therapist did until I saw one, so I was a little apprehensive. I didn't need to be at all, and the great thing about seeing this health professional for fibromyalgia is that it is tailored to your specific needs. I loved my OT, she was brilliant. That perfect mix of being super friendly, but also telling you off when you were trying to get away with something!
Occupational therapists aim to improve your ability to do everyday tasks if you're having difficulties (NHS). After a detailed conversation about my needs we knew that I didn’t require any help with mobility aids such as a walker, and while perhaps a perch stool would be ideal for cooking at times when my dysautonomia symptoms flare, my kitchen is small and I knew it wouldn’t be practical.
The one thing that was super helpful was talking about pacing. Yes, the dreaded ‘p’ word . . . As one of my friends on my Instagram said, the thing we know we should do, but always mess up at. Well, I try my best at pacing, but it was clear from my activity diary that I was attempting to do way too much and then collapsing in a huge flare-up after a few days. Then having to rest a lot, until I repeated that cycle again. Not ideal!
We worked on making my activity levels a bit more even, and identifying tasks that were important and those that could wait until a more appropriate time. I really try to keep in mind when I book appointments, social events or other activities that I don’t try and cram everything into the same few days but spread it out over the week. It was really helpful to talk through pacing with a professional and the tweaks I could make that would help with fatigue.
Cognitive Behavioural Therapist
CBT is a talking therapy that can help you manage your problems by changing the way you think and behave (NHS). It works on how our thoughts, feeling and physical sensations are interconnected, and that negative thoughts and feelings can trap you in a vicious spiral (NHS). Patients are shown how to identify negative patterns to help improve how they feel.
As I was referred to CBT for a health condition, my sessions focused on how my thoughts and feelings were related to my symptoms and health conditions. Most of all, we discussed anticipatory anxiety and how this arose when I started to have increased symptoms, or when I had to have medical treatments or procedures.
We discussed various ways to approach this and the most useful for me personally was to practice thought challenging, essentially a way to re-consider anxious thoughts (in my case), and re-frame them by looking at other forms of evidence. It was definitely identified that I am way too good at catastrophising (ruminating about worse-case scenarios) and have issues feeling out of control (which is definitely a problem with the ups and downs of chronic illness).
Undertaking CBT is a commitment, will give you lots to think about and you have to commit to both the sessions themselves and the 'homework' they often ask you to complete. It can be really useful for those with a chronic condition such as fibromyalgia though, so it's definitely worth considering as part of your treatment plan.
I hope that this post is useful - do let me know if any other health professionals have been helpful for you.
I want to emphasise that these forms of therapy were helpful for me, for my particular circumstances. I also want to emphasise that I am not advocating for GET (which has been shown to be very harmful for many people) nor suggesting that fibromyalgia is a 'psychological' condition. Far from it. I have fibromyalgia, know that it is very real and disabling. It is not 'all in my head' or anybody else's head. What I am saying is that CBT helped me navigate living with the condition and provide tools to help me do so. It was not, under any stretch of the imagination, related to a perception that talk therapy would 'cure' me of the condition.
My new book Living well with Fibromyalgia is out now if you would like to check it out!
Don't forget to pin the post!
Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.