Central Sensitization Syndrome

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Migraines, Insanity, and Manifest Destiny

A migraine has hit in the night. Yesterday, to lower the pain, I took a hot bath. I stayed in too long, and my body doth now protest. Wind-up I call it, or migraines, for lack of an actual diagnosis. Migraine is hardly a diagnosis. Waves of sensation washing through me- hot, cold, needles, tingles, numbness, shivers, spasms, and the good old crispy pain.

The definition of insanity is acting the same way and expecting different results. As I contemplate scheduling an appointment with my doctor, I wonder what my expectations should be, since I am waitlisted for EDS diagnosis.

I feel entirely rational believing that I will be suggested pharmaceuticals too readily, while my doctor hesitates to diagnose my complex health issues. So I spend time waiting for appointments with specialist who are unwilling to diagnose pain outside of their specialty. Everything becomes a maybe leading to another specialist.

I feel entirely rational trying to explain to my doctor that medication without proper diagnosis has made the situation worse. The pathology of my conditions changes while I wait for appointments.

I feel entirely rational getting angry at my doctor for dismissing my concerns about the quality of treatment and suggesting that I do not want to get better.

I feel rational knowing that seeking treament has itself made my healh worsen in the past, and I know that the possibility of it happening again is higher than obtaining the care that is needed.

I feel rational thinking that there is a difference in the importance that my doctor and I attribute to our meetings, and I am at a lost pretending that my doctor is not apathetic (or experiencing "empathy fatigue") in order to possibily get the care I need.

The drive to the clinic or the hospital and the waiting in public rooms is painful, and I get little out of it but more migraines. At our last meeting, my doctor complained that I was late and the office charged me for a missed telephone call during the pandemic. I have no money for treatment. Regardless of whether I was late or not, I feel rational thinking our priorities do not coincide. I feel rational saying my health is not a part of my doctor's priorities, based on past services.

So, the unfortunate conclusion seems to be to try and handle the pain and disability alone, for fear of running the very real risk of deterioration.

I am not hopeless, but the determination is a grim one, since I have to find contentment in things other than pleasure. There is a lot I want to life for- more than most, I would say- but pain is a responsibility, and responsibility is repulsive, and no one wants more of it in their lives. I understand what I am asking of others, but I would not be asking if it wasn't aleady promised.

In the end, my behavior is seen as insane to some, while I think the same of them- the difference being I'm suffering, while they profit from the lie.

All the while, I'm supposed to "shut down" these rational thoughts and keep asking fo help from the same people? That, I feel, is true insanity.

#Migraine #ChronicPain #Allodynia #Hyperalgesia #CentralSensitizationSyndrome #EhlersDanlosSyndrome

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I’m new here!

Hi, my name is Brunette_Rhyme. I've been diagnosed with and am a long term sufferer, I have other conditions but they are not on this radar however that does not surprise me. I feel out of 32 neurological and a mess of a muscularskelatal, my body is heading for another change. How long before we know what’s going to happen is anyones guess. My biggest obstacle right now is I seem to be my carer’s carer. I have a new set of carer’s coming on board. My new NDIS package has come through and finally I had and awesome LAC who knew what she was talking about. We have fought so hard and finally I received a package where I now might received the care I need instead of laying on the floor in a pool of blood in the morning whether I have an Apple Watch on or not. It is all dependant on the impact of the fall and mine are usually low by the time I hit hard. I have been on dexemethasone for nearly 3 months this time and it’s taking it’s toll and my doc does not get back from holidays for another month. I have to hang on as 2 hospitals have nearly killed me and I refuse to go down that road. I have an induction on Monday and really need these carers up to speed. I have one carer who is about to take leave and is on holidays to Italy. I hope she has and amazing time and sadly another one I have just lost as she had a fight with another carer to whom where previously friends. She put me in a very awkward position of choosing. I refused to and split them apart. It was not good enough so she resigned. I am very sad for this and I see her hurting right now but as the say with Pride come a fall. She knows I am very fair and kind however she needs to ask me. I guess I am reaching out for some moral support as I am truly exhausted and know I need to hang in there. I hope every is doing the best they can? If you are having reasonably good day, share and extra smile for the rest of us and we will do the same in return. J

#MightyTogether #Anxiety #Migraine #Fibromyalgia #ADHD #PTSD #RheumatoidArthritis #MultipleSclerosis #ChronicIllness #CentralPainSyndrome #MyofascialPainSyndrome #ChronicInflammatoryResponseSyndrome #UrticarialVasculitis #CentralSleepApnea #CentralSensitizationSyndrome #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems #MultipleSystemAtrophyWithOrthostaticHypotension #HipDysplasia #DegenerativeDiscDisease #DentatorubralAtrophy #MyotonicMuscularDystrophy

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I’m new here!

Hi, my name is wpl94. I'm here because I’m trying to get a diagnosis and help my partner, friends, and family to walk with me through the pain.

#MightyTogether #Anxiety #Depression #EatingDisorder #Grief #ehlers-DanlosSyndrome #CentralSensitizationSyndrome

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