Mrs Jooste

Hi, I only found out in the last week that what I have been dredding my entire life is called Tactile Defensiveness. I am a 32 year old and I can still not touch fleecy materials (polar fleece) Waiverly or hairy blankets, wet wool, cotton wool or any similar materials.

I have been mocked and ridiculed my entire life by my family who have made it a joke, and on many occasions have forced me to handle these items. Along with the total fear i now have for any fleecy materials and cotton wool I am also extremely sensitive when it comes to brushing my hair, i can not stand somebody else working with my hair as it always feels like they are pulling it, you can imagine getting a hairdresser is not an easy task. I am also sensitive to noise and light and suffer from regular migraines due to this.

I have been diagnosed with Fibromyalgia last year and wish to find out if there is any correlation between the two.

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Mar 12, 2010
Fibromyalgia and sensitivity
by: Kelley

Hi Mrs. Jooste,

I was diagnosed with fibromyalgia about seven years ago, and have been on the Marshall Protocol successfully for five. Heightened or changed sensitivity of various kinds is definitely a part of it, with sensitivity to lights and noise being the most common. It's a nervous system disorder, so it causes all kinds of sensory, regulatory (for example, IBS), and emotional symptoms even if your doctor tells you they're unrelated. Light sensitivity is actually part of the disease, since light entering the eye affects production of certain neurotransmitters. (In fact, Marshall Protocol patients have to wear dark glasses at all times and seal their homes against sunlight.) Migraines are connected, too, and in fact are a part of the same underlying disease process.

Sorry your family has been so unsupported. It's all too common, for both laypersons and doctors, to try to "psychobabble" and blame patients for these conditions rather than make the effort to understand and treat them. Don't let yourself be intimidated, stand up for what you need and for what you know is the truth. Good luck.

Oct 08, 2011
Fibromyalgia/asd/sensory sensitivities
by: Anonymous

Hi Mrs Jooste,
I am in my mid forties and have fibromyalgia/hypermobilty issues. I have fallen metatarsal bones and feel that I have to push myself to achieve what others find easy.

I have aspbergers and also have many sensory sensitivities. I try gentle exercise such as swimming, yoga, tai chi and walking. Sometimes I feel energized but there are many times that I come away feeling drained, resentful and angry that instructors know so little. I have given up on doctors and physios. I have injured myself trying to 'self help' and remain positive.

Strangely, I have lived with this all of my life and never questioned why I struggled so much.

Regular massage helps me to center myself and helps greatly with the tactile defensive challenges I face. The best thing for me is to feel as though I have tried, tried, tried and never given up. I wish you well.

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