Overcoming sensory issues (my story)

DrWaku

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Oct 29, 2023
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Hi, I'm a computer science PhD and YouTuber, and I have to make a lot of adaptations for my fibromyalgia. I recently made a video about my five or six main symptoms, which are primarily oversensitive senses (hands legs smell voice sight sound?). The video talks about how I overcome these limitations, or limit my activities to avoid triggering flares. I hope it will inspire anyone who might also be struggling with sensory issues.

If you want to see the video, search "dr waku story of my fibromyalgia" on YouTube.

Questions & comments welcome! Hope you enjoy it.
 
I really appreciate your video and showing adaptations that work for you! It is very detailed and positive. Definitely from the perspective of surviving and thriving.
 
Hi DrWaku, thanks for the impulse in trying to explain all this!

Some of the things in part 1 you say might apply to my form of fibro, like it may possibly be an offshoot of my MCAS etc.. Impossible to prove tho, so usually primary and secondary fibro aren't distinguished by researchers. Most of us have lots of co-morbidities, but of course association isn't causation.

Other don't apply to my form of fibro at all. You've used the central sensitisation syndrome explanation, with allodynia, hyperalgesia, the nociplastic pain concept etc., which I think is very understandable for your form with your sensory oversensitivities. I and others don't have any of these tho, so I side with those researchers (not the majority) that say the CSS hypothesis is too much of a generalisation and jumping the gun. (Because of this I think there is some kind of injury which hasn't been found yet that is triggering the pain impulse. That's similar to when you say that as opposed to CSS there's "more often" an underlying condition in fibro.)

Interesting to hear the chromosomes as one of the reasons why some autoimmune diseases are much more common in females - hormones would be another, and I think quite a few more. Maybe something autoimmune is a part of fibro, but to say it's similar is I think again overstretching it as yet. Even if were similar that wouldn't prove it is similar with respect to why it seems to be more common in females. All the more because research using the newer criteria is coming more and more to the result that the ratio may be more like 2 to 1.

In part 2 you say you recommend to try all medications, because some of them help, some of them don't for each person. That's the short version I spose, but more exact is that it's unusual for medications to help a lot at all. In my case my other conditions bring on difficult side effects with many meds, so not worth it for me to try everything.

Your symptoms and experiences are brilliant to listen to.
Even before you mentioned that aging food increases histamine I was wondering if you might have MCAS as well?
Sjögren's you do mention, have you bothered with tests, or do you just manage it? I have 5 dry areas, like most of my skin. Have you tried other ideas to keep your throat moist? I recently came across salt water, which works quite well for my mouth, altho I'd've thought the opposite.
The way you describe how the pain sensation of your eyes has remained and increased despite your eye dryness decreasing very much supports your CSS interpretation of your symptoms. I've never had anything like that, very interesting.
Your glasses look like the new ones with green as well as blue filter, is that correct?
The amount of your workarounds strike lots of chords with mine...
Sound is one as a musician I never thought I'd have to deal with, but a month or two ago altho I'd been listening to quite a few hours of music per day the time before. It came together with finding it much more difficult to listen to and talk to people. I've got ideas what may have contributed, but no satisfactory ones. "Funnily" it started a week before I started with (V)LDN and only after I started did I read that taking it seems to decrease music enjoyment for some. Oh well, I hope it'll improve some time. Sometimes I find a track or two that I can actually enjoy, not just tolerate, but most new music I'd been collecting the last few years I can't.
So I can well imagine why you want to protect your hearing!

Yeah, re-imagining my life I've sometimes called re-inventing myself - not my "image", not my personality, but sort of everything else - completely different lifestyle (slow, careful & deliberate instead of fast and exciting) & hobbies (garden plants & bird song instead of dance, sports & music) have become necessary, work is fading into oblivion...

Really good fun getting an impression in another fibro life... - totally different and yet I can totally relate...
 
It sounds very interesting I shall watch and concentrate on it over the weekend. I can appreciate forum members who can collect their thoughts and speak of life with FM with clarity.
 
Hi @DrWaku
oversensitive senses (hands legs smell voice sight sound
What do you mean, are your eyes glare sensitive? With hands and legs, what do you mean, is it tight clothing, gloves, or sensitive to weight, or types of surfaces?
 
Hmm, hasn't been on here for a month, hasn't replied to anything... I spose all we can do is watch the video...
 
Hmm, hasn't been on here for a month, hasn't replied to anything... I spose all we can do is watch the video...
Hi @JayCS

It shows he was on here Jan 11th. I'm of the opinion he's just fishing for people to watch his video. The lack of any further comment does make me wonder if he is simply searching for info, and I wonder if he has fibro, or is just a play-wright. He lacks appearance of integrity for me, anyway.
 
Hi @JayCS

It shows he was on here Jan 11th. I'm of the opinion he's just fishing for people to watch his video. The lack of any further comment does make me wonder if he is simply searching for info, and I wonder if he has fibro, or is just a play-wright. He lacks appearance of integrity for me, anyway.
I agree with this assessment, and it is what I suspected from the start.
I suggest that we refrain from posting any further in this thread.
I won't close the thread in case the OP wishes to come back to it, but let's leave it at this.
 
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