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.

The Difference Between Abuse And Care

Photo by Sydney Sims on Unsplash

I had a very interesting discovery the other day.

I had a friend make a joke on one of my posts that suggested I might have a diagnosis other than fibromyalgia. She’s suggested this particular diagnosis ad nauseam in the past. I didn’t take it well. I was upset and antsy and, after some prompting from another friend, I politely set a boundary of can we please not with this topic, and how it makes me feel.

And she apologised. She apologised, explained she had been trying to make a joke about how she could empathise with my experiences because she has the other diagnosis, and the injury I had experienced is one she could imagine herself doing. Then she apologised for missing the mark with the joke. And none of it was ‘I’m sorry you feel that way’ or anything like that, it was a true and genuine apology, taking responsibility for what she said and how that made me feel.

It was freeing in a way I cannot put into words. Suddenly I wasn’t offended by the joke, and I could feel her care and consideration for me. It increased my love and respect for her a thousandfold.

This is totally different to the friend I lost. During my diagnosis process for both fibromyalgia and trigeminal neuralgia, when the doctor and I were both pretty sure what I had but were doing the formalities, she would send me messages with all sorts of different things I could have. Constantly. I rarely mentioned any of my symptoms past ‘ow’. She never once asked about them. And she was saying ‘oh what about this? and this? you could have this!’ I repeatedly told her we were pretty confident it was fibromyalgia (or trigeminal neuralgia) and it felt like she was dismissing my knowledge and my doctor’s knowledge of the situation.

She never apologised. She would only say ‘I just don’t want you to have x because it’s chronic and it’s awful’. That is not a place of care. That is a place of control. Which pretty much summed up our whole relationship.

Because of my long history of being abused (right from infancy through to this latest ‘friend’), I have difficulty with identifying when people come from a place of care and love. It’s often only once I begin to establish a boundary, and they accept it and apologise for stepping on it that I can tell the difference.

It has started healing a little part of me that was very raw.

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.

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!

Upgraded!

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I have officially gone Official with the full migration of this blog over to www.thewalktowellness.com!  From here on in, I’ll be updating on the Official Site (YAY).

There will be a few small adverts to help pay for the domain name and hosting (and maybe a coffee?), but nothing else is going to change.  I’m not going to monetise my blog entries.  I’m not going to do affiliated links.  This remains a blog about my journey through various chronic illnesses, in the hopes that some people realise they’re not alone, and it’s shitty but it’s also okay.

I look forward to seeing you on the newfangled site which hopefully doesn’t have too many hiccups.