I said that I would wait until the New Year to decide whether I needed to see a rheumatologist sooner than the appointment offered by the NHS. I did wait. I think I was partly procrastinating because I didn’t want to be told that there wasn’t a quick answer and that it isn’t clear what is wrong with me. However, if that was the case then I was going to get that answer eventually and delaying it was just putting off the process of accepting and learning to deal with my situation.
I saw a rheumatologist at a private hospital in York on Saturday. I’m still getting my head round the outcome but I think I’m glad I went. My expectation was that he would want to do further tests before reaching any conclusions. That wasn’t really the case. He did do a thorough examination and ask a lot of questions, but other than a quick urine test (which was normal), no further investigations were needed.
Apparently it isn’t uncommon in rheumatology to see a patient with an autoimmune ‘background’ and the symptoms I’m experiencing. I have some lupus symptoms. I don’t quite meet the full criteria for that diagnosis. I have some ME symptoms but we can’t make that diagnosis because it requires that you first rule out any other possible causes of fatigue. I have antinuclear antibodies. They are causing this although the mechanism isn’t clear.
The conclusion is that my symptoms are those of fibromyalgia but that they are caused by autoimmune activity. I hadn’t expected that. The only reason I hadn’t expected it is because I don’t regard pain to be my primary issue and everything I’ve read suggests that pain is the predominant symptom of fibromyalgia. Even the name, which literally means ‘pain in fibrous tissues and muscles’, suggests this.
I do have pretty much every other symptom of fibromyalgia and I perhaps need to widen my definition of ‘pain’, which the rheumatologist believes can be misleading. The following is the NHS definition of fibromyalgia and its symptoms:
A long-term condition that causes pain all over the body.
As well as widespread pain, people with fibromyalgia may also have:
– increased sensitivity to pain
– extreme tiredness (fatigue)
– muscle stiffness
– difficulty sleeping
– problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
– headaches
– Irritable bowel syndrome
https://www.nhs.uk/conditions/fibromyalgia/
I tick most of those boxes. I have noticed an increased sensitivity to pain although I attributed it to other things. My hands are extremely sensitive but I thought that was linked to my Raynaud’s Disease. The cold literally hurts my body and rain feels like I’m being hit with needles. I thought that was part and parcel of the reduced metabolic rate that goes with my thyroid issues. When I’m especially tired, every touch is painful just like when you have the ‘flu or another virus. I thought that was just part of being exhausted.
I definitely have fatigue. That is expected with an underactive thyroid albeit I’m now treated. However, my last two results have gone backwards and I’m back in borderline levels and have only managed one blood test in the last year that was roughly where it should be. I’m now on twice the dose of levothyroxine it was predicted I would need.
I’m not too sure about muscle stiffness. Isn’t that normal for runners? I don’t know anymore. I wouldn’t say it’s causing me a huge problem. On a bad day I ache all over but it’s at a low level and less problematic than my other symptoms. I’ve had back trouble on and off for a few years but it hasn’t stopped me doing things. I thought it could be explained by poor posture when running uphill, wearing a heavy pack during races with a large kit list, slumping when doing computer work and any number of other everyday factors.
Sleep is an interesting one. I have been prone to bouts of insomnia since childhood. This was always attributed to an inability to ‘switch off’ – my mind is always busy. I had a particularly extreme period of sleeplessness in 2014/15 which ultimately resulted in me struggling at work, becoming depressed and eventually leaving my job at the end of 2016. I have been prescribed Melatonin since 2016 and it seems to be a little more helpful for me than any sleeping pills I have tried.
Since the onset of my thyroid issues I have tended to over rather than under-sleep. Feeling exhausted after a full night’s sleep is normal with an underactive thyroid. I’m having the same experience again now and the rheumatologist explained that people with fibromyalgia have ‘non-restorative sleep’. They don’t spend much (or sometimes any) time in the deep sleep phase that the body needs to rest and repair. They wake up tired despite believing they have slept well.
Apparently those diagnosed with fibromyalgia also tend to have a prior history of sleep problems and this may be a factor in triggering their symptoms. The way nerve signals are sent to the brain and the way the brain processes them and sends messages back to the body fundamentally changes in someone with fibromyalgia and sleep deprivation may be implicated here.
When this happens, signals from the body that should be dampened down get magnified. A pressure feels painful. Something that would normally cause mild pain triggers amplified pain messages. Sometimes the body sends pain messages to the brain when there is nothing physical to cause it. The pain is real but it’s generated within the body and not externally. The bladder may tell the brain it needs to empty too frequently. The connections between the brain and digestive system get messed up. Sensations are altered – pins and needles, numbness, tingling, muscle twitches and shooting ‘nerve’ pains are all common.
Finally some of my symptoms are making sense. I hadn’t understood how my thyroid could be causing my hands and feet to keep going numb (peripheral neuropathy) or why I was getting muscle twitches and strange sensations. This is what I meant by widening my definition of pain. I might not be suffering debilitating aches but my sensory processing is wonky. I get all sorts of unusual physical sensations, I’m sensitive to bright lights and cold temperatures, I get dizzy and sometimes I need to be in a quiet space with as little sensory input as possible. Apparently it’s not just that I’m antisocial!
Back to the symptom list and it’s the ‘fibro-fog’ that really confirms to me that the diagnosis fits. I know I have mentioned brain fog in previous blog posts. Concentration is a battle. I frequently forget what I was about to do or lose my train of thought. My thoughts get tired. My attention drifts. My brain is cotton wool. I have used my psychology skills to manage this quite well on the surface. I have diaries, calendars, lists: I’m organised but things take me longer than I feel they ‘should’.
To some extent I think this has always been the case. I achieved highly academically and I think people often assumed that because I was bright it came easily. It didn’t. I was seen as a perfectionist or ‘over-working’. My difficulty getting things done on time didn’t fit with my organisation and dedication.
Even when I was successful I always felt on the edge of failure – I was hanging onto the top of a cliff by a fingernail, dreading the moment I would fall. It did all fall down around me a few times. That was seen as a mental health issue. I’m not saying it wasn’t, but the mind and body aren’t separate. The less able I was to meet the demands of my life, the more I struggled with my mood and self-esteem and coped in unhelpful ways. As my emotional well-being declined, I became even less able to meet demands – a vicious cycle I have repeated many times. I concluded that it was something about me or something I was doing wrong. I rarely asked for help.
I’m looking back and wondering if I’ve had antinuclear antibodies and a level of fibromyalgia for a long time and it’s now flared up. It’s possible I’m overthinking. I’ll probably never know the answer. There’s no doubt that I am managing my current health situation reasonably well because I have reduced the other demands placed on me. What I now have to continue to do is be ok with that. To accept that it is better to be managing well in a less demanding job and a simpler life than to fly high until the next time I crash. I have to accept that mediocrity is ok.
The remaining symptoms on the NHS list are headaches and IBS. I’ve alluded to the IBS above and this is something I was diagnosed with around 10 years ago and have suffered with for longer than that – another reason for wondering whether I may have had fibromyalgia for a while. As I get abdominal cramping as part of this I guess I’m experiencing pain, but the pain doesn’t bother me as much as the bowel symptoms and bloating.
Headaches are something I have struggled with intermittently for most of my life. I was diagnosed with Chronic Daily Headache Syndrome at the age of eleven. They did improve after a few years but I remember them flaring up again in my early 20s. They settled down eventually but I remained a headache-prone person. However, I wouldn’t say they were affecting my life again until relatively recently. I seem to have been getting quite a few lately as well as the odd migraine. As I often get a headache when I’m tired it didn’t seem surprising that they were accompanying my fatigue. But I suppose this is a kind of chronic pain. Does this mean I’ve had fibromyalgia since I was eleven? Answers on a postcard…
The NHS website is a bit like the online equivalent of a GP. It has to know a bit about an awful lot of conditions but it doesn’t specialise in anything. I explored the FMA UK and UK Fibromyalgia websites for a more detailed overview of fibromyalgia symptoms. I found lots more boxes that I seem to tick. Whether this is because I’m looking for a way to explain why I’m struggling or whether I do completely fit in the box I’m not entirely sure.
Additional symptoms described by FMA UK Fibromyalgia UK include:
– Clumsiness and dizziness ✅
– Sensitivity to changes in the weather, noise, bright lights, smoke and other factors ✅ – especially weather. I’ve flirted with hypothermia during a few races when no one else got that cold and it’s a big factor in my wariness of returning to racing.
– Painful menstrual periods – a big ✅ since the age of 12 but more recently I have been diagnosed with endometriosis. A quick google search suggests rates of endometriosis are higher amongst women with fibromyalgia than the general female population. So I guess that’s another chronic pain condition (that has thankfully been under control since I had a Mirena [IUD/coil] fitted).
– Irritable bladder ✅ – I was diagnosed with an ‘overactive bladder’ in 2005. No one ever got to the bottom of why. I have been on a medication that helps a bit since that point.
– Dry eyes and mouth ✅ – see my previous blog post.
It’s important to note that fibromyalgia is a syndrome rather than a disease. It’s a label for a collection of symptoms that seem to go together but not for a disease process. Therefore, the cause isn’t necessarily the same for everyone. The rheumatologist believes that anti-thyroid and anti-nuclear antibodies have triggered disordered sensory processing for me. Flare-ups of antibody activity seem to have been linked to viruses – a chest infection prior to my thyroid issues and a stomach virus prior to this latest setback.
We don’t know yet exactly how or why antibodies have this impact on sensory processing in some people. Sleep may be a contributing factor or a result of the immune system dysregulation. Not everyone with fibromyalgia has these antibodies, so there are other ways in which this syndrome can occur. However, it is more common in people with autoimmune conditions.
Perhaps this shouldn’t be surprising. My immune system thinks that my own cells are a bug of some kind. It is responding as though I have a virus. My thyroid tissue is dead and the anti-thyroid antibodies can’t now make my thyroid issues any worse, but they are still being produced. No one is exactly sure what anti-nuclear antibodies do but they don’t like certain proteins within cells. We all feel tired and depleted after battling a virus. My body thinks it is constantly under attack and is battling itself. Somewhere along the line that has disturbed the way my brain and body communicate and things just don’t feel as they usually would and my energy is being used to fight my own body.
If this sounds confusing it’s because it is confusing. My rheumatologist doesn’t claim to fully understand it and I most certainly don’t. I’m trying to – perhaps too hard. I like things to make sense and connect. I want answers. They aren’t there. The medics know this happens and that fibromyalgia exists. We are a long way from fully understanding it and even further from finding a cure or even an effective treatment. But either I have been unlucky enough to have IBS, an overactive bladder, endometriosis, chronic headaches, peripheral neuropathy, fatigue, autoimmune thyroid disease, ANA antibodies, dry eyes, sleep problems, a tendency to become hypothermic, a mood disorder and a host of other things or these conditions are all linked. It may be a bit of both of course – some may be linked and some may be coincidental.
In terms of treatment, I was offered a short course of steroids. These would suppress my immune system and prevent it from attacking me. The rheumatologist was willing but not overly keen to go down this route. I was even less keen. Steroids have a LOT of side-effects. For someone with an autoimmune condition that attacks a major organ they may be a necessity during a flare-up. For someone who has ceased to function the side-effects may be worth it. Even in these cases they aren’t generally used long-term because of the adverse effects and because suppressing the immune system also leaves you vulnerable to infection.
Steroids are an option if things get significantly worse. For now I don’t think the benefits would justify the side-effects. For all that I have harped on about symptoms here, I am functioning. Not as well as I want to but better than many who are managing more severe symptoms. On top of that, if viruses are what trigger autoimmune flare-ups for me then the last thing I want to do is suppress my immune system. I’m already taking enough pills to sink a ship. I don’t want more unless it’s absolutely necessary.
Another option I was given was a drug to dilate my blood vessels to reduce my Raynaud’s symptoms and help me tolerate the cold a bit better. Unfortunately, those drugs don’t just dilate the blood vessels in the extremities. They dilate all of them, including those in the brain, and can cause problems. I think I’ll stick with being cold.
There is no long-term solution. No cure. This isn’t going to kill me but it isn’t going to go away either. The preferred option of my rheumatologist is that I learn to manage this and attend follow-up appointments so that other treatments can be considered if things get worse. I hadn’t yet cancelled my NHS appointment, so I plan to use that as my follow-up and take the report from Saturday’s consultation with me. That will also give me an opportunity to receive a second-opinion. I don’t doubt what I’ve been told, but two opinions is probably a good idea when you’ve been informed that you aren’t going to get better.
That’s not to say there won’t be any improvement. If I’m currently experiencing a flare-up triggered by a virus then things may get a bit better over time. If that’s the course this will follow then there will inevitably be future flare-ups. I will never be completely free of symptoms. There is still room for improvement on the thyroid side of things and I’m hoping my latest medication increase will have some benefit.
All that being said, my current activity levels are high by most people’s standards. They just aren’t what they were. I don’t know if I can run an ultra again but I seem to be coping better with a medium length run every day (and shorter if it’s a busy day or a bad day) than I did when I tried to get one long run in every week.
I no longer have the endurance I once did. My rheumatologist’s opinion is that I might be able to gradually get back to the long stuff again if it’s really important to me but that I would pay a higher price in terms of recovery. I am taking it a day at a time. I don’t want to say ‘never again’ just yet but that may happen. If the price of running an ultra is weeks or months of being wrecked then it’s not worth it.
I completely respect those who stick two fingers up at worse health issues than I’m dealing with by completing amazing races. My personal fight is to keep running every day. The runstreak comes before races. I’m not prepared to be out of action and I also don’t want to be miserable.
I was an ultra runner for a few years. I couldn’t have crammed many more races into that time and I had a blast. I made some life-long friends. I don’t want to ruin it by dragging myself round a race to prove to myself that I can. Running has been my way of dealing with stuff. It makes me feel better. If I can get to a point where I can enjoy a race again then I’ll go for it. If not then the runstreak is my way of fighting. If pushing myself too hard is going to end the streak then mabye I’m not an ultra runner anymore. I’m not going to lie – that is pretty shit.
The management side of fatigue and chronic health conditions is more psychological than medical. I know this stuff. That doesn’t mean it’s easy. I have to learn to pace myself and not overdo things on good days to then do nothing at all on bad ones. Physical exercise has been shown to be beneficial for both fibromyalgia and thyroid disease. There is obviously a limit and rest is also beneficial.
I need to not put pressure on myself to do what I think I ‘should’ be able to do. At the same time, I need to avoid becoming a recluse if I want to ensure that my mood remains stable. I have to learn what my body can and can’t cope with and recognise if things are getting better or worse. I’m lucky enough to work from home and have relatively few demands placed on me. That allows me to continue to run. If I have busy periods when other things are required of me then I may need to run shorter distances or streaksavers.
Running is still beneficial at the minute. I have given up trying to get any pace back. It takes too much out of me. I can still enjoy getting out in beautiful surroundings. What I haven’t had for a very long time is that feeling of effortlessness when you imagine you could just run forever. That is what drove me towards the long stuff. I’m trying to come to terms with the fact that I may never feel that again. I miss it. I need to stop trying to chase it and just enjoy what I can do for what it is. Yes, it frightens me that things could get worse and I may not be able to keep doing what I’m currently doing. Hopefully that won’t happen and I don’t want to dwell on it.
I haven’t written this because I want sympathy. I know that some of the people who will read it are battling chronic health conditions of their own and would give their eye-teeth to be able to run every single day. I’m not suggesting that I’m bed-bound or have no quality of life. What I am suggesting is that there has been a change compared to what I was previously able to do and that that feels hard sometimes. I needed to write this to help me process a diagnosis that will have some impact for the rest of my life. I hope that it may also make enough sense to give anyone interested an understanding of why I may struggle to do certain things at certain times.
I will cope. It won’t be perfect but I’ll learn to manage this. I’m grateful that I had built up enough fitness when feeling well to enable me to keep fairly active and enjoy the countryside around me even when I’m not firing on all cylinders. My dogs give me a focus and I’m not sure I’d be coping as well without them. There are lots of good things in my life. Feel free to remind me of this whenever I get despondent or feel frustrated.
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