The Possibility of Mast Cell Activation Syndrome as a Component of Fibromyalgia

My flatmate has chronic sinusitis and congested nose. He has had this for years. He’s also had insomnia and really bad quality sleep for years. He’s had all of this medically explored, he’s tried a lot of drugs, and nothing has really helped.

Until he found some mention of mast cells and decided to experiment with reducing his histamine levels. His nose cleared up and all of a sudden his sleep quality improved. His supplements arrived and his chronic sinusitis began to clear up, too. So he kept googling.

He found an article mentioning mast cell activation as a potential cause of central sensitisation – i.e. everything hurts and all sensory input is bad – which is one of the main components of fibromyalgia. So he passed the information off to me and, thinking this could be interesting, I started researching.

Mast cells are the harbingers of inflammation in our body. They release up to 200 different inflammatory mediators, known as cytokines, which do everything from increasing blood vessel permeability to depolarising nerve endings. Mast cells are everywhere in your body, all through your connective tissue, and they don’t care about the blood-brain barrier, either. When they activate, they can either fully degranulate (that is, release all of the granules they hold in their cytoplasm at once) or they can selectively degranulate. A full degranulation can result in anaphylaxis, while a selective degranulation can result in … any combination of symptoms, really. They respond to anything and everything, from an allergen in the environment (hello hay fever, yes, it’s mast cells that are causing that allergic reaction) to an infection (bacterial, viral, parasite, etc.), all the way through to emotional stress and temperature changes.

Inappropriate mast cell activation has been, as I mentioned earlier, linked with central sensitisation, one of the particularly nasty components of fibromyalgia. Mast cells have been linked with bloating and abdominal cramps associated with non-coeliacs gluten/wheat intolerance, neuropathic pain and fatigue … you think it and it’s probably on the list. It’s not incredibly well understood, as many things relating to the immune system are, and it seems like it may be a contributing factor (or the causative factor, in some cases) in conditions like fibromyalgia or chronic fatigue syndrome.

Fibromyalgia and chronic fatigue syndrome are a description of symptoms, rather than a description of the underlying disease process, which is what makes these conditions so varied, and therefore so difficult to manage and treat, because each person requires individualised treatment. In many cases, and especially in mine, the diagnosis of fibromyalgia is reached and that’s it. There’s no looking into any underlying causative agents, it just is.

But during my google-fu, I’ve realised that a lot of my symptoms, including my overreaction to vaccinations, suddenly make sense through the lens of an inappropriate mast cell activation component. All I need to do is too much one day, and the next day I have a sore throat and a bad post nasal drip on top of extra body pain.

While the diagnosis for mast cell activation disorder is a pain in the backside (and not always particularly accurate), the treatment is something I’m able to do myself … or at least a trial of a few things to see if there’s any improvement. So I have quercetin supplements on their way, which may help to stabilise mast cells, along with a combo supplement with chinese skullcap extract. These are the two supplements I have come across that seem to be the initial ‘go to’ for treatment, so I’ll give those a whirl and see what happens.

Excitingly, despite ordering them only last week, they should be here today! I’ll let you all know how it goes over the next couple of weeks.

I’m Not Okay

Photo by K. Mitch Hodge on Unsplash

I’m not okay today.

I did too much. Way too much, and now I’m paying for it with full body aches.

When I’m this fatigued – and it is a bone deep dragging fatigue that pulls every bit of energy from your muscles and leaves you in agony – my good mood inevitably slides away to a numbness I associate with my depression.

I will shortly haul myself off the couch and put on my fluffy cosy socks. Then I’ll turn the heatpump on and cuddle up on the couch and read terrible fanfiction until the claws of fatigue retract from my muscles. It is important to coddle yourself on bad days.

I’m not okay, but I know that I will be.

Another Dog … Another Failure

Photo by Isabela Kronemberger on Unsplash

A couple of months ago I got a dog to train up to be my mobility helper.

He was terrified of men. So he was rehomed, and now lives the life of luxury, sleeping on beds and being spoiled. I had to seek outside confirmation that I couldn’t have made it work with him, because he was such a sweet dog, and he was the first one I had tried. But, ultimately, I cannot work with a dog who is terrified of men.

Last week I got another dog, also to train up to be my mobility helper. This time I took it slow. I went out and met him, I took my friend with me to assess his temperament, and then went home and had a long talk about him. I picked him up, and he was anxious, but he never put a foot wrong. He didn’t put a foot wrong the entire week I had him. He was sweet, lovely, willing, and just adapted to every situation thrown at him.

But he had some health quirks that could have been indicative of serious problems, and he smeared saliva everywhere. My amazing human isn’t able to cope with dog saliva, so we agreed he would not be joining us permanently.

I know it’s a process, I know the right dog is one-in-a-million, but I am feeling disheartened by this. It’s hard work to meet the dog, check them over, take them on for a bit, and then figure out how to explain to the old owner why their beautiful, lovely, fantastic, and genuinely amazing dog failed, because that’s what it feels like to them. The last owner didn’t understand, and was very upset by it, and I think that, more than anything, has led to me feeling so bad this time around.

I haven’t given up finding the right dog. Or rather, I have flights of fancy that I don’t need the extra help, that I’ll be able to figure out a way around all of this so I don’t need a dog, and life will continue on as it always has. But they are brief, and generally beaten over the head with a mallet with my leg doesn’t want to hold my weight, or when I have a dizzy spell.

But for now I am going to sit back and relax and rest up. The stress of the last few weeks is finally catching up with me.

Sometimes You Just Have To Sleep (The Day Away)

Photo by Jon Butterworth on Unsplash

One delightful part of fibromyalgia is having unrestful sleep. For me, that means having vivid nightmarish dreams. Last night involved floating cows, deer crates, and then people infected with rage virus trying to kill each other (including me). It wasn’t a particularly fun night, and as a result, I woke up feeling a little bit like death warmed up.

Had breakfast and coffee, sat around for a bit … still death warmed up. Had second breakfast of cinnamon french toast, courtesy of my Amazing Human, and more coffee, but the excessive fatigue persisted.

Giving in, I curled myself up on the couch and lay down. I was out like a light.

I say ‘sleep’ rather than ‘nap’ because I’m typically out for about 4 hours, and I usually wake up feeling more rested than I do after a ‘good night’s sleep’. Today was no different.

Despite needing to do more cleaning, I slept solidly from midday until 4pm and I woke up feeling so much better. I wouldn’t have achieved a single thing by remaining conscious, but after that nap, I managed to finish off the bathroom and toilet and the cat pooping room / laundry.

With fibromyalgia, or with any other chronic illness, if you’re knackered … you need to sleep. Even if it means sleeping half the day away!

Chronic Illness and Cleaning

Photo by JESHOOTS.COM on Unsplash

I hate cleaning. I hate it with a burning passion, because it takes time and energy and effort and then you have to do it all over again next week. I like things to be done once and then stay done. Which, sadly, isn’t the case for the dishes, or the dust, or the cat litter trays, or the bathroom, or the toilet, or the carpet, or the cat hair …

I live with two lads who firmly believe that cleaning is a thing you do once every six months when it’s a flat inspection and that’s about it. If anything was cleaned, it was me who did it. Including most of the dishes. A few years ago we decided on a compromise: we’d all pay a bit extra, and each week we would have someone come over and clean the communal areas for an hour, these being the floors of every door that’s open (so my flatmate can leave his office door open if he wants and it’ll get vacuumed), the bathroom, and the toilet. It worked out fantastically for everyone involved – I suddenly had more spoons to spend elsewhere, and we all got a nice clean house.

Unfortunately COVID is a thing and my amazing cleaner is half way up the country at home. I’ve been managing to vaguely keep on top of at least the cat and dog hair, and the bathroom, but the toilet’s gone to the lads. Even more unfortunately we have a flat inspection in three days.

So I get to do all the cleaning.

Now I’m the kind of person who likes to get up, do everything in one hit, and then sit back down again. This sometimes works, and sometimes doesn’t. I’d read somewhere about doing things in bits, and taking rests in between – a concept that fills me with deep unease and no small amount of misdirected anger. Since I have only a few days to get the house to rights, and then a full week ahead of me (with a full day of driving immediately after that), I figured I should probably do the sensible thing and pace myself.

I got up, I cleaned a few more spots of cat puke off the carpet, liberally applied toilet duck (although at this point I’m convinced the toilet requires an exorcism), and sprayed the cleaning product all over the shower stall. Then I lay down for 40 minutes.

It was a bloody challenge to haul myself off the couch again and continue cleaning, but get up I did, and thus I cleaned. I did the shower stall and the sink, and lay back down. Then I got up and went out to the paddock for the first time in days.

And you know what? I think this whole ‘doing a bit at a time and then resting’ has a lot more going for it than my usual ‘DO ALL THE THINGS AT ONE TIME’. And I didn’t combust with misplaced rage while doing it, either. I’ll have to experiment with it more!