Central Sensitization Syndrome

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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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Advice on how to survive family dinner when you can't eat without pain.

Hi I'm new to the mighty and I am in need of some advice! I have diagnosed Hypermobile Ehlers-Danlos Syndrome, Central Sensitization Syndrome, Endometriosis and Symptomaticly diagnosed POTS (waiting for appointment with cardiologist) and I am going for a late holiday dinner with my grandma, aunt parents and my spouse. Now like alot of granny's she loves to makesure everyone eats enough. Except for me eating is extremely painful and makes me get monsterously bloated and my fatigue gets bad as POTS makes you feel all wonky after eating. But she always keeps insisting. Currently I have one small meal a day of chicken and potatoes as they cause the least pain. So does anyone have any advice of how to nicely, make her understand that I simply can't eat all the food the others eat? #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #IrritableBowelSyndromeIBS #stomachissues

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