Time to write about the embarrassing stuff

M

Mando

Peer Supporter
I’m going to post this in the public forum as hiding and lying about it is totally not working. As embarrassing as this stuff is, I have to be honest about who am I as keeping it a secret eats away at me. So I've decided I'm going to write about it here, if for no other reason, that to stop the habits of a lifetime that have let to constant pain and sickness.

In my late teens and early 20's I had the most intense back pain and fibromyalgia for several years and went to every doctor and alternate health practitioner to get help. Eventually an allergy doctor recommended going on a gluten free diet and this was life changing. The majority of my pain vanished within a week. It was fantastic. As good as this part of my life was, it lead to deeper problems as I now was aware of how to make myself feel better by avoiding things. I'm pretty determined so went on the look out for anything that could be affecting my health. Pretty soon I found more things to add to my list, and not just foods!

I started noticing that strong solvent smells would give me headaches. It started with smells like perfume and chemicals and then quickly it got to the point it was ridiculous, where I felt that some shoes and item of clothing started to make me feel sick (fibromyalgia, insomnia, burning pains in my body, headaches, stomach upsets). I began disposing of them to make myself feel better as when they were out of my immediate vicinity I started to feel better.

Needless to say, this habit has made me distrustful of my sanity and extremely embarrassed by it. I've been finding ways to not tell anyone about this, even in my family and I know they wonder what is going on at times. Logically, it’s all so ridiculous that I have these issues, and it takes such a toll on my life. I wish I could say I’m gaining traction on them but I’m finding them so fucking stubborn to move.

Can anyone else relate to this?
 
I think it is very brave of you to post this and to be open to addressing it. While I can't relate to your specific avoidance of certain smells etc, I believe what you are discussing is a specific manifestation of TMS that reflects the broader phenomenon. This is assuming one's body issues are a manifestation of something physical rather than psychological. We have all been down that road in one way or another. The remedy is to explore your psychological issues with the same amount of courage and bravery. I wish you well on your road to recovery.
 
@Mando Helmut from The Mindful Gardener has several videos on YouTube specifically addressing chemical sensitivities, as follows:
  • “MCS (multiple chemical Sensitivity) exposure tips”
    In this video, below, Helmut shares practical advice for dealing with exposures to chemicals when you have MCS (Multiple Chemical Sensitivity). He discusses strategies for managing reactions and emphasizes the mind-body connection in recovery. (With the other videos I've listed below that I haven't put a link to, you should be able to find them easily if you search his The Mindful Gardner channel.)
  • “how I recovered from multiple Chemical Sensitivity”
    Here, Helmut details his personal journey of recovery from MCS. He explains the symptoms he experienced, the challenges he faced, and the mind-body techniques that helped him heal.

  • “Mind-Body Success Story with Helmut” (interview on The Pain PT channel)
    Helmut discusses his experience with chemical sensitivity, histamine intolerance, and related symptoms. He describes how mind-body approaches led to significant improvements and eventual recovery.

  • “I had severe food sensitivities. I could only eat 2 foods!”
    Although primarily about food sensitivities, this video also covers Helmut’s experience with multiple chemical sensitivities and how they were intertwined with gut and immune issues. He describes how calming his nervous system and addressing the mind-body connection led to recovery.
These videos feature both practical tips and in-depth personal stories about overcoming chemical sensitivities.
 
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If you're on FB, Helmut is also a huge contributor in the TMS - The Mindbody Syndrome group, if you find you like his channel.
 
@Mando
Good for you for getting that out in the open. But you’re not a bad person or even a weird or sick person. You are normal for someone with a hypersensitive nervous system. Smelling “danger” is baked into our survival. You just have your danger signals stuck on high. When you heal your nerves, this will go away.

Have you ever read Hope and Help for your Nerves, by Claire Weekes? When you read it, apply it to yourself, even though she doesn’t mention the smelling situation, much, or at all in this book. It’s still an anxiety symptom. Follow her recommendations for healing. You can conquer this, and more!
 
Ellen said:
The remedy is to explore your psychological issues with the same amount of courage and bravery. I wish you well on your road to recovery.
Click to expand...

Thanks Ellen. I agree about the emotional work. I have just started on EMDR.

Many years ago I was seeing a psychologist, and during one session accessed a deep well of emotion and released it. At the time, I literally felt all the pain shift and wash out of me. It was quite something . I always wanted to access stored emotion again but never knew how.

I feel there is a lot to verbally sharing painful memories even though I'm so ashamed to share them most of the time.
 
Mando said:
I’m going to post this in the public forum as hiding and lying about it is totally not working. As embarrassing as this stuff is, I have to be honest about who am I as keeping it a secret eats away at me. So I've decided I'm going to write about it here, if for no other reason, that to stop the habits of a lifetime that have let to constant pain and sickness.

In my late teens and early 20's I had the most intense back pain and fibromyalgia for several years and went to every doctor and alternate health practitioner to get help. Eventually an allergy doctor recommended going on a gluten free diet and this was life changing. The majority of my pain vanished within a week. It was fantastic. As good as this part of my life was, it lead to deeper problems as I now was aware of how to make myself feel better by avoiding things. I'm pretty determined so went on the look out for anything that could be affecting my health. Pretty soon I found more things to add to my list, and not just foods!

I started noticing that strong solvent smells would give me headaches. It started with smells like perfume and chemicals and then quickly it got to the point it was ridiculous, where I felt that some shoes and item of clothing started to make me feel sick (fibromyalgia, insomnia, burning pains in my body, headaches, stomach upsets). I began disposing of them to make myself feel better as when they were out of my immediate vicinity I started to feel better.

Needless to say, this habit has made me distrustful of my sanity and extremely embarrassed by it. I've been finding ways to not tell anyone about this, even in my family and I know they wonder what is going on at times. Logically, it’s all so ridiculous that I have these issues, and it takes such a toll on my life. I wish I could say I’m gaining traction on them but I’m finding them so fucking stubborn to move.

Can anyone else relate to this?
Click to expand...
Absolutely! I do wonder if the cutting gluten was in fact a physiological issue or a TMS placebo in terms of your symptoms improving. I have colitis and a few years ago I went on an ultra restrictive diet. In retrospect it didn't help with the inflammation (it got worse) but I began being OCD about the foods I eat. I went from a happy person who would eat out and enjoy my foods to someone who lived an ultra restricted life in terms of what I can and couldn't eat. It wasn't just foods, it extended to the water I drank. I noticed (just my observation) the more restrictive my life was the more miserable I became and the more TMS symptoms I would get. I recall getting itchy welts on my chest that would last a couple of hours ... haven't had that for a year or so and now I'm thinking TMS (?). I'm now trying to expand my foods list while telling my mind that food is food and it's not going to kill me. I don't focus much on thoughts relating to foods now. I want my life back. I'm also trying to heal colitis by TMS principles and using EMDR. I do wonder whether hypnosis could work with feeding suggestions to the brain that the triggers are not dangerous. Don't be embarrassed, you are human! Look, I spent months on Reddit finding solutions for my symptoms. There are a significant majority on those forums who have had extensive medical testing but are experiencing all sorts of unexplained symptoms which are impacting their lives. They are obsessed with finding a cure from MTHFR gene, Lymes, mold, Pylori etc ... they spend years and years ... I bet a significant proportion of those are suffering from TMS and have no clue and they are looking for a physiological answer to their problems which they will never find! At least you are switched on and can see a possible correlation! You are the smart one. Nothing to be embarrassed about. Your just human with an overly sensitised nervous system that's trying to protect you. If you were living as a cave man you'd probably survive whilst others will perish. Survival of the fittest and that's you.
 
mikeinlondon said:
Absolutely! I do wonder if the cutting gluten was in fact a physiological issue or a TMS placebo in terms of your symptoms improving.
Click to expand...

I can absolutely relate to those who follow every article and podcast relating to gene issues, latest nutrient findings, experimental off label medicines etc etc. I've spent decades going down this path, primarily because I had so much success with avoidance of allergy triggers. Later I had great success with cleanses and certain medicines. I understand where you're coming from with restrictive diets as this is heavily popularised by those online promoting all the benefits one can get. It's so addictive to think the problem is able to be fixed by what's under our 'control'.

Recently, I've become sick and tired (literally) of that hamster wheel. What I think about more and more these days is why the sensitivity in the first place. The answer as I believe it now, is emotional. I think about some pivotal times when I was younger, being emotionally distraught and eating lunches consisting of sandwiches. I wasn't the happiest teenager and for a few years ate many lunches while feeling upset and lonely. I can't help thinking that this allergy is pain created through my body's association with bread (gluten) and emotional pain. It may be the case I've created my own allergy!

Regarding your comment about EMDR, I've recently found a practitioner to see for this also. I've only had one appointment and am hoping emotional release work will steer things in the right direction. I really believe TMS / emotional work is the answer as the more I work on it, the worse I feel emotionally at the moment, lol. There hasn't been any 1 week full recovery success story here, just more pain at the moment. Lucky me!

For me, there's a huge correlation with heat and pain in the body. I can relate to your colitis condition, as I get so much pain and burning in my stomach and intestines. It's not pleasant at all.
Is the heat emotional pain desperately wanting our attention???
 
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