You may have a co-worker, friend, girlfriend, wife, niece, daughter or granddaughter who has this life-altering condition. It is incurable and an enigma that has befuddled MDs, and patients, for decades.
It’s a condition that has been for the most part of the latter end of the 20th century been considered ‘psycho-somatic’, something that is psychological and not in the least physical. However, in the past few decades, with better science and technology on hand, it’s revealing a few things:
1. Some people have more ‘sensitive’ brains/central nervous systems (these are Highly Sensitive People). This can lead to these individuals being more susceptible to:
-pain sensitivity and poor sleep under excessive stress, esp. In childhood
-explosive synchronization of brain networks
-central sensitivity syndrome
2. Mysterious conditions like these usually stem from early life stress (esp. If the patient has a CNS like the above)
When a child perceives themselves to be unseen/unheard/unloved, their developing brains and nervous systems see this as a ‘threat’ and amps up the stress response, which leads to a barrage of negative chemical processes that lead into adulthood. This then leads to these chronic stress induced conditions.
This can also happen when the child perceives lots of stress and an unempathetic parent/caregiver is not attuned/isn’t around/doesn’t respond to the child’s emotional needs during the stress, accurately.
On the other hand, controlling, anxious, overbearing parents who instill fear about everything-even trivial ‘dangers’-risk enhancing the young child’s fear response. If it’s done consistently, the child’s CNS will be on alert all the time.
However, the parents themselves often have experienced their own trauma and are projecting it in the present moment.
3. Brain inflammation, as well as inflammation in the nervous system, is playing a part in all aspects of CNS stuff like fibro, depression, etc.
That’s why those damned anti-depressants don’t work for some people, because
their poor noggin is ‘on fire’.
Neuroinflammation is from chronic stress, especially the emotional kind or, in some cases, from an infection, such as Lyme Disease or Covid. This neuroinflammation is what causes disrupted sleep, all over pain, bowel issues, mood issues, and endocrine/hormone issues.
It is also why all the mindfulness, meditation, psychotherapy, CBT, and all these psychology based therapies don’t work well. What’s more, if there’s an aspect of trauma, in any form, the person will not respond well to ‘thinking’ or ‘cognitive’ based therapies.
To release trauma, we need to work at the reptilian and limbic part of their brain, before we even get to the cortex, where the thinking brain is.
Cue embodiment work, such as somatic experiencing, yoga, or foam rolling which uses movement as therapy to release negative emotions and bodily sensations. With that said, there are some people who invest money/time into it, but don’t get much relief or they’re not satisfied enough that their investment was well spent.
What’s more, HSPs are very tuned in to their body sensations that these activities might actually backfire because they focus too much on the pain/fatigue experienced. If anything, they may prefer distraction or out of body activities.
it’s nigh impossible to see a ‘swollen’ brain, because it’s covered by the bone of the skull and the tissue that surrounds it.
Unlike a hammered thumb that’s black and blue, an open razor burn, or an eye infection-all of which is visible/is felt-the brain is the only organ that doesn’t have that ability. It’s morally unethical to cut a live brain open, so today all the studies are via machines (some are invasive with wires and injections and others not so much).
Many fibro patients complain that antidepressants, tranquilizers, and muscle relaxants don’t work because a) they’re highly sensitive and the medications don;t mix well with them or b) they can’t afford them.
So they end up trying a number of diets and natural herb/supplements to help alleviate the inflammation in their brain and body.
They may try to ‘clean up their gut’ too, with supplements, teas, and probiotics. This is another thing they are finding out, through better science and technology, that there is a gut and brain connection.
Not to mention, some people have a more ‘sensitive’ intestine wall than do others. This is commonly known as IBS and it usually pairs with fibromyalgia.
Having this elusive condition means a lot of hurdles. From the workplace, to the social scene, to the bedroom, patients who have FMS go through life in a blur.
They scroll enviously at social media feeds, work less hours and get less pay, have intimate problems, have low exercise tolerance, can’t go out as much, and travel on a whim? Fat chance of that.
Not to mention the supplements and pills to take and therapies to do in order to get by. Yes, some people may have almost no symptoms, but others may have many-too many that they feel suicidal.
People with fibro are ten times more likely to contemplate suicide because of the pain. They may also contemplate it because of feeling like a ‘burden’ on their spouses/family, not being able to function like everyone else, having their life turned upside down, etc. This is even with all the medication and relaxation in the world.
Here are ten things not to say to a woman with fibro:
- You look so healthy
- Just stop focussing on the pain
- Just be positive
- You should try (insert a med, a therapy, etc)
- You’ll get better
- Don’t worry about/insert whatever they’re stressing over
- I don’t think you should be doing (insert a certain food item, activity, etc)
- You should go out more/work more/exercise more
- You don’t seem tired because you (fill in the blank: did laundry, raked lawn, walked dog, drove to store, etc)
- You’re so lucky to get to laze around all day.
These all invalidate or minimize her experience of what is going on in her body. Invalidation and minimization will very likely make the experience a lot worse, because during times of discomfort we seek out people to help us get through it.
Appearing to wave them off just leads to a sense of hopelessness. Moreover, when people do this, there’s a sense of superiority, a distance between how ‘bad’ they are for having a chronic condition and how ‘good’ you are for not being stuck with said condition.
Try these phrases instead:
- I’m here if you need me
- If you need to cry/need a hug/need a foot rub/need to talk I’m here for you
- This will pass, even though it seems bad right now
- I’ve got the funniest joke/story/idea to share with you
- We’re in this together, no amount of pain or fatigue will stop me from loving you
- There’s nothing wrong with going slow (we can reschedule/re-arrange a social function so it’s closer or isn’t as long or we can make sure everything is fully refundable before we sign up)
- You can change your mind because of (insert symptoms of fatigue/pain/ brain fog) and no one will judge you.
- I love you and will always love you, even when you’re in pain or tired
- You’re so strong/brave to get through all this and insert whatever (parenting, working, being a good friend, being a good wife, etc).
- Would you like help with (insert some activity that is usually done alone)
***
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The post Ten Things Not To Say About Fibro for Guys appeared first on The Good Men Project.
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