We need to change the whole door. And they need to organise it. And I need to endure it.
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Please help me find medical explanation for noise sensitivity which will convince my parents
- Thread starter Wolfiness
- Start date
We need to change the whole door. And they need to organise it. And I need to endure it.
Yeah, I know what you mean. ME is just so alien to anyone not experiencing it. Including to me during remissions. It must be unfathomable to almost everyone else. But I get really upset that I have to teach my parents 1001 extremely similar individual things because they don't get the general precept while strangers do.
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Unfortunately the reason strangers get the general precept while our parents don't is because strangers start out seeing you as an adult with full agency whose wishes need to be respected. Parents often have difficulty with this when we're dependent on them as adults.
The battleground shouldn't be "my needs are legitimate NEEDS not just preferences", it should be "I'm an adult who deserves respect, these things/preferences/requests are important to me, I need you to either accommodate these things or own up to the fact that you either can't, or simply don't want to." In the latter case, it tends to be because their convenience holds higher priority than respecting your communicated needs.
Parents seem especially prone to this because they tend to do it to their kids throughout childhood, and then sometimes simply continue on through adulthood. For the record, treating an adult like a child, or neglecting to accommodate the medical needs of a vulnerable adult (that's us!) who needs a caregiver, is ABUSE and there are resources available regarding that.
Sorry to pull this thread off topic. I just feel so strongly about this. I've seen it so many times regarding PWCs. People who respect you as a person are able to follow through on this stuff. Or, if they can't they'll let you know upfront. Your parents' behavior towards you isn't okay, and is rooted in something far deeper than simply not understanding this illness. I have SO many friends and acquaintances and play partners who don't understand my illness at all and yet somehow find they have no problem accommodating my stated needs.
Lolinda
J'aime nager dans le froid style Wim Hof.. 🏊♀️🙃
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@Wolfiness I found the term "sensory gating" the most helpful when searching for stuff on noise sensitivity. The PR search function tells me it has not yet been mentioned on this thread. If research on sensory gating helps your parents to understand I obviously dont know. But this concept imo well explains how it can be that the same stimulus of irrelevant input can lead to a magnitude of a difference in the impact on a person.
But most of all, I wish you could resolve the problem. I had it and I know how it feels What helped me for better sensory gating regarding noise but also other issues: vitamin D and fish oil. research. Surprising, however, was the time frame: I needed years (!!) to prop up my DHA and EPA test results on the red blood cell fatty acid assays. And I was first taking pills to little effect and poor tolerance. then eating 200g (!) of mackerel and/or sardines every second day...The effect of less noise sensitivity came in the same very slow rhythm as my labs improved. Today I sleep even if people are talking in the other room, making phone calls or running around in the flat and I hear the steps... and the ocassional traffic in the street doesnt bother me either, even if balcony door is open... I forgot once to close my own door and fell asleep happily. Wish you the same!!
(Though, I still marvel at people being able to sleep in a crowded train... I cant do that... how can that work?? would be so so handy... need to travel now in a few hours to the other end of the country for a hopefully wonderful gastro to check if I have any mast cell abnormality in the gut...)
below you find my EPA and DHA values today (the green bars)
But most of all, I wish you could resolve the problem. I had it and I know how it feels
What helped me for better sensory gating regarding noise but also other issues: vitamin D and fish oil. research. Surprising, however, was the time frame: I needed years (!!) to prop up my DHA and EPA test results on the red blood cell fatty acid assays. And I was first taking pills to little effect and poor tolerance. then eating 200g (!) of mackerel and/or sardines every second day...The effect of less noise sensitivity came in the same very slow rhythm as my labs improved. Today I sleep even if people are talking in the other room, making phone calls or running around in the flat and I hear the steps... and the ocassional traffic in the street doesnt bother me either, even if balcony door is open... I forgot once to close my own door and fell asleep happily. Wish you the same!!(Though, I still marvel at people being able to sleep in a crowded train... I cant do that... how can that work?? would be so so handy... need to travel now in a few hours to the other end of the country for a hopefully wonderful gastro to check if I have any mast cell abnormality in the gut...)
below you find my EPA and DHA values today (the green bars)
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i have never heard of this test, is it available from a regular doc?
Lolinda
J'aime nager dans le froid style Wim Hof.. 🏊♀️🙃
- Messages
- 420
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- Geneva, Switzerland
Continuing my post above about vitamin D and DHA:
It seems that something is using up most of my DHA and my vitamin D. I am unable to find out what this is. It is also interesting that my EPA is meanwhile highly elevated, but the DHA just arrived to normal. So it seems to consume DHA. Regarding vit. D, the situation is similar: I need constant supplementation of 1000 IU to maintain, 1500 IU to increase blood levels. I did an experiment: I stopped supplementation beginning of last summer. Had every day half an hour of sunshine while eating lunch on the balcony. Result: deficit in autumn. Add to this the vitamin D from fish... something uses up my vitamin D.
Here where I live they can. But they dont know about it.
I usually change the order: instead of approaching a doc to get me help by lab tests, I approach labs to tell me about test availability, so I can help the doc . It costs less time this way, even if I have to check 10 labs...
It seems that something is using up most of my DHA and my vitamin D. I am unable to find out what this is. It is also interesting that my EPA is meanwhile highly elevated, but the DHA just arrived to normal. So it seems to consume DHA. Regarding vit. D, the situation is similar: I need constant supplementation of 1000 IU to maintain, 1500 IU to increase blood levels. I did an experiment: I stopped supplementation beginning of last summer. Had every day half an hour of sunshine while eating lunch on the balcony. Result: deficit in autumn. Add to this the vitamin D from fish... something uses up my vitamin D.
Here where I live they can. But they dont know about it.
I usually change the order: instead of approaching a doc to get me help by lab tests, I approach labs to tell me about test availability, so I can help the doc
. It costs less time this way, even if I have to check 10 labs...
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I cannot afford to get it done privately, its either ordered by doc or no dice for me.Here where I live they can. But they dont know about it.
I usually change the order: instead of approaching a doc to get me help by lab tests, I approach labs to tell me about test availability, so I can help the doc
I also have much experience dealing with doctors, and have had more then my lifetime share of useless ones, but i have limited resources and can either work with what is available to me or go without.
ME CFS has an effect on peripheral nerves of various types , the nerve supply to skin and muscles can create peculiar sensation ; "pins and needle" or a "creepy crawly sensation". it is thought to be a low grade peripheral neuritis, the same peripheral neuritis can occur in the end organs of the ears and the rods and cones in the eyes, causing pain and discomfort due to noise and bright light. This peripheral neuritis is contained in the complex term Melvin Ramsey described in 1955, Myalgic Encephalomyelitis.
Derek Enlander MD
ME CFS Clinic
New York
I'm not sure on that one, had some patches of it but its a rare symptom in my case, I get flare ups of light sens fairly often but it rarely gets to uncomfortable levels, are you severe then wolfi ?
In general I don't like much noise when I'm at a low point of the cycle and I tend to get stressed more easily, but typically I am able to listen to loud music
sometimes I wish that I am living in a basement of a castle that is like in some inaccessible place where its cold and dark and silent
In general I don't like much noise when I'm at a low point of the cycle and I tend to get stressed more easily, but typically I am able to listen to loud music
sometimes I wish that I am living in a basement of a castle that is like in some inaccessible place where its cold and dark and silent
Rlman
Senior Member
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- Toronto, Canada
have you tried ear plugs?
Wayne
Senior Member
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I've been reading a book recently entitled, "Dysautonomia Project" (which is quite an eye opener). It outlines quite concisely that the dysfunction of the Autonomic Nervous System (ANS) is responsible for many (to most) of the symptoms pwME/CFS experience. It lists many of these symptoms on p. 72,, including hypersensitivity to light, sound, motion and touch.
Yeah, that is such bs
I just looked at your blog. It's snowing there, that's so cool