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Central Sensitivity Syndrome Home (CSS)
My Case of Central Sensitivity Syndrome (CSS) As far as I have seen and my doctors have seen my case is a bit unique when compared to those with FMS/CFS and even CSS. What I am doing here is listing my symptoms and what helped or continues to maintain my symptoms. While you may not have all of these symptoms you may have quite a few and these methods may help you as well. Definition of My CSS: Hypersensitivity of the five senses, including Sight, Smell, Touch, Taste and Hearing. Also including hypersensitivity of all tissue and joints etc. Touch: From a soft caress to a hard fall all forms of touch are painful to me and leave marks on my body. Even the slightest itch or scratch leaves a redness for over a half and hour and the redness appears in under ten seconds. More of this is covered under Skin. My muscular pain is similar to FMS pain and it is dull, sharp, stabbing and enough to make me cry and even scream at times. The pain is 24/7 and never stops. Nervous pain is similar to the pain felt when and IV is going in or if you could try to imagine injecting a diluted ground hot pepper into the nerves that would give you a general idea. I feel every nerve in by body and almost every muscle all of the time. TO live without this pain would be as foreign to me as to remove all physical sensation from a normal person. I relate to my world not by touch, but by pain. A tap on the shoulder is like a very hard punch, caressing can lead to a burning sensation, a hard poke or bump leaves a bruise for two weeks and over working a muscle one day means not using the muscle again for at least a week. There is no touch with out pain though some lighter touches only cause pain after they are continued for a short amount of time. Meaning caressing is only painful after that area is caressed for over a minute. To grab my arm to draw my attention is to cause me mild to severe bodily harm. Sight: The light is always to bright inside or out in fact outside light can be blinding. This hypersensitivity leads to severe tension headaches that are very debilitating. That’s which is just light in color such as a white wall does not appear white, but rather as a light. To look at a white wall and look away is the same as looking at a light bulb and looking away, the image remains. Vision is blurry be cause of this light distortion and also other visual distortions I mention more under Eyes. Hearing: A honk of a car horn can send a pain shooting up my spine enough to render me unable to move, respond or breathe. Any prolonged quite sound begins to create headaches and mild to louder sounds trigger the headaches into full blown debilitation in no time. This is explained more in depth under Headaches. I can hear the quietest sounds and some of the highest pitched sounds most humans can not. While I can not make out what a person is saying 20 feet from me, I can hear the bass or higher pitches of their voice. Smell: My strongest sensitivities are cigarette smoke and gasoline, but even someone’s perfume or cologne can cause nausea, dizziness, shortness of breath, lightheadedness and in severe cases vomiting and loss of consciousness (passing out). Taste: My only form of pure pleasure. With hypersensitive taste, good food and especially sweets are all the more wonderful, but many foods can trigger nausea if they are not quite a favorite food. Certain spicy foods can cause oral skin to be irritated in the mouth similar to burning skin on hot food if the food is to salty, spicy etc such as pepper and sunflower seeds. More about this under Skin.
*All of these stages apply to any trigger of a hypersensitive sense whether it is hearing, sight, smell or touch. Taste to this day has not triggered an attack by itself, but it does enhance other symptoms such as nausea.* Similar to morning sickness for pregnant woman, hypersensitivity to smell leaves me always one strong smell away from full blown symptoms. Every day I carry a mask just in case I encounter a smell I can not handle. Keep in mind this is not Asthma which is an allergic reaction, this is hypersensitivity and there is a difference such as there are no treatment options like inhalers or pills. Passing a person on the sidewalk with a cigarette, the car fumes while crossing the street and so on are pure poison to my body. I can withstand a few minor smells throughout the day and not have a breathing attack, but if one strong smell does come along all smaller smells that follow that day will re-induce an attack instantly. Stage 1 – Shortness of Breath Stage 2 – Dizziness & Anxiety Stage 2 - Nausea Stage 3 - Carbon Dioxide Stage 4 – Muscular Pain Stage 5 – Not Quite a Seizure Stage 6 – Too Late for Coping *I have had several Stage 4 attacks already in 2007. I have not had a Stage 5-6 attack in 4 years. I have learned how to prevent 5 and 6 through breathing and getting immediately home to my controlled environment of no triggers. Four years ago I had Stage 5-6 attacks weekly and monthly for two years and had many throughout my childhood. These attacks were mainly triggered by a sudden increase in pain triggers, foods I now know my body can not digest leading symptoms similar to food poisoning and suddenly increased severe fatigue in which left me without the ability to cope and manage my pain allowing me to spiral into an attack.*
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