Central Sensitization Syndrome

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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

    Post

    I’m new here!

    Hi, my name is ErinMomof4. I'm looking for suggestions and ways to support my health.

    #MightyTogether #ChronicIllness #ChronicDailyHeadache #CentralSensitizationSyndrome

    Post

    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

    Post

    I’m new here!

    Hi, my name is fairymary. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #ADHD #Anxiety #CentralSensitizationSyndrome

    Post

    I’m new here!

    Hi, my name is shan_marie9. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #Fibromyalgia #Migraine #CentralSensitizationSyndrome

    Post

    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

    Post

    New Treatment Plan

    I found a friend of a family member who lives in Norway, but helps people who have fibro by looking at their DNA 🧬 and bloodwork to determine what neutracuticals (fancy vitamins) can help them. I’m sending her data from a 23andMe test, a bunch of blood work, and data from a GeneSight test (that shows how I metabolize things). I’m so excited for this! I’ve been very suicidal lately in and out of the mental hospital since December with 4 hospitalizations from suicide ideation. I also have other injuries from abuse and #CentralSensitizationSyndrome so we’ll see how much it helps, but I’m trying to be so hopeful and hang onto this piece of light and possibility. If anyone wants the lady’s info message me and I’ll give you her email.
    #Fibromyalgia

    Post

    chronic Radiating Upper Leg Pain Since Fusions #Fibromyalgia #NervePains #leg pain#CentralSensitizationSyndrome

    Help! Please! For over 18 months, I have had debilitating sciatic nerve pain radiating from my L5 on down to my butt, side of thighs and usually stopping at the knees. I have fibromyalgia, central sensitization syndrome, RA, OA, degenerative disc disease, and have had four spine surgeries including L2-4 fusion. Since about 10 months after my 2018 addition of L2-3 to the L3-4 fusion, I started experiencing severe pain above and below the fusion. Then it shifted into the leg patterns. Since a March RF lesioning, on the left side, the pain pattern there turned to various forms of parasthesia, from tingling to numbness to on fire, to stabbing, to freezing….but now it wraps to halfway around the front of the leg instead of the back. Sometimes, I get groin pain on either side. At its worst, the pain has gone down to my toes, but not always to the same toes! You get it….there is NO pattern!

    Worst…I’ve had continued pain treatments, have to take T4 with Tramadol too just to sleep, and have had every test in the book, including CT, two MRIs, and even an EMG. The best guess my surgeon or anyone else has is my fibromyalgia, my RA, my degenerative disc disease and facet arthropy…in other words, no one knows. I recovered well from my fusion, but tripped over a circular saw in our basement, tearing all ligaments in my right toes, to start this cycle.

    Anyone have a similar set of symptoms? I believe the Fibromyalgia is part of it, since I have to use pillows to support my arms when I sleep on my sides, and can’t even stand most sheets touching it. So far, my only help have been the two ketamine infusions I had this month. All help appreciated! At least no Dr has suggested its “all in my head”!

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    I am so sick off toddler parenting life. I hate it. I cry every day and I can’t wait til she’s more independent.

    Venting and looking for validation here not solutions. *Also would prefer if people kept their advice to themselves, and please don’t gaslight me in anyway.*

    *Trigger warning: suicide ideation, sexual, physical, and emotional abuse.*

    She invades my physical boundaries, which triggers memories of sexual and physical abuse. I work so hard to be a positive parent and to break the generational trauma of emotional and physical abuse from my family. I always feel like I’m falling short, but my therapist and PCP have both reassured me that I’m the best mom for my daughter and that she was meant to be parented by me, and of course I love her dearly. I just hope, pray, and meditate on that in these younger years of hers goes faster cus right now I have a hard time seeing out of this forest of turmoil, frustration, discomfort, and anger.

    I also am medically complicated and severe chronic pain flares up during times of stress and with the added stress of toddler parenting, my cycling and pain has gotten so worse and more frequently. I rapid cycle every couple weeks to a month, and lately it’s been dysphoric mania for a couple/few days. I miss euphoric mania and hypo mania. I have cptsd on top of my bipolar, so I frequently have disrupted thoughts and flashbacks.

    All of this is so exhausting and I know I’m not alone, and I’m gonna keep fighting the fight, but that doesn’t take away from the suckyness of my current state. I have suicidal ideation that group therapy, individual therapy, meds, diet changes, exercise, even medical marijuana hasn’t been able to shake. I am stressed to the max every second of the day unless I have time away from her while I’m at an appointment or something, but even then there’s a dark shadow around me because I know what I’m gonna have to go back to.

    #BipolarDepression #Bipolar1Disorder #CPTSD #FibromyalgiaDiagnosis #CentralSensitizationSyndrome #Neuropathy #OvarianCyst #adhesions #brokentailbone #Recovery #Anxiety #Depression #SexualAbuse #RapeSurvivors #CarpalTunnelSyndrome #Tendonitis #Trauma