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    I'm new here!

    Hi, my name is LUVMYNYX2. I'm here because I've been suffering from Fibromyalgia and Syringomyelia for over 10 years. My day starts with waking up feeling very stiff in my whole body. It feels like Rega Mortis is setting in. I force myself up feeling tired all the time. My right arm is the most painful, a burning, stinging, scrapping feeling. Very tender to the touch. It feels like the way Shingles is described, except without a rash. Then there is pain around my ribs and pressure in the middle of my spine. It feels like a dagger is in my back. Sore breast too. This pain is every day all day. I work and drive all day and every bump in the road intensify the pain. I take Lyrica 200mg three times a day along with over 1100mg of acetaminophen and Ibuprofen. I get very little relief with that. Doctors have no idea how much hell I'm going through with this horrid pain. When the pain is more intense it raises my blood pressure to stroke range and I don't have high blood pressure. My treatment has been consisted of dry needles on top of my shoulders, vitamin injections in my hands were the worst treatments and very painful. I've had physical therapy 4 times. I was taking also units of Vitamin D three time a week and 2500 of Vitamin B12 3 times a day for pain and protection of my liver and kidneys. Doctor's are only concerned with not giving opioids to protect their licenses while I suffer but yet there is treatment for substance abusers still being served Meth to avoid the issues they go through, I'm not drug addicted, don't want to be high or out of my mind. I just want somebody somewhere to treat my pain so that I can live my life. All I do is work and off to the bed. I have to work with prices getting higher and higher. I'm only 67 and feel bad when my grandchildren want me to do things with them. I also have asthma and stays out of breath here lately. Thanks for listening.

    #MightyTogether #Fibromyalgia

    17 reactions 7 comments

    I'm new here!

    Hi, my name is BeckyBooBoo. I'm here because im tired of fighting alone as nobody understands how I feel on a daily basis.

    #MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #Fibromyalgia #Syringomyelia #FattyLiverDisease

    12 reactions 8 comments

    Would anyone watch YouTube videos

    Hey everyone, I have been thinking about starting a YouTube channel, mainly to make videos about hacks and tips to living with a Chronic illnesses, but also thinking about doing some vlogging as well To show what it’s really like to be chronically I’ll , would anyone be interested in watching? Or have any video ideas? Would really like to start it but I am scared that no one will watch haha, any thoughts are welcome😊😊 #EhlersDanlosSyndrome #ArnoldChiariMalformation #Syringomyelia #Gastroparesis #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Anxiety #Spoonie #Vlog #spoonielife #PelvicOrganProlapse #ChronicPain #Hope

    4 reactions 8 comments

    I'm new here!

    Hi, my name is cshook72. I'm here because I have been diagnosed with syringomyelia. I am currently unaware of what symptoms I'm experiencing that may be related to the syrinx that I have. I'm also having some severe symptoms that my medical providers cannot resolve.

    #MightyTogether #Depression #Syringomyelia


    I'm new here!

    Hi, my name is Pregs. I'm here because

    #MightyTogether #Syringomyelia

    1 comment
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    Have you ever met anyone who lives with the same rare disease as you? What was it like?

    Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

    Would love to hear your experience! Feel free to share in the comments below.

    P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients:

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #morgellons #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    4 reactions 12 comments

    I’m new here!

    Hi, my name is itsbecca. I'm here because I just feel I need to be proactive about my general well-being and need a community and support group.

    #MightyTogether #Depression #Anxiety #PTSD #ChiariMalformation #Syringomyelia

    1 reaction 3 comments
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    Syringomyelia Awareness

    May is #Syringomyelia Awareness month. I’ve probably had it since I was 12 when I woke up and had lost feeling on my right side, but it wasn’t till I was 18 that someone finally agreed to give me an MRI. The doctor at the time was so perplexed he redid all my neurological scans as he couldn’t believe how well I was compared to how bad my spine was.

    Syringomyelia is a neurological condition where a fluid-filled cavity (syrinx) occurs in the spinal cord. They don’t quite know why but it’s very common in conditions like Chiari Malformation (which I have), Tethered Cord (I also have), trauma to the spinal cord and a few other things. These cysts expand and put pressure on the nerves running in our spine causing pain mainly in peripheral areas. It can lead to paralysis but chances of this are getting less with increased knowledge. Mine was so big C2-T10 and the width of my cord in most areas it stretched the cord and perforated it in areas. So I’m lucky to be walking and only part-time wheelchair user.

    I had the Chiari decompression surgery to help both my Chiari and Syringomyelia. However, it took another surgery for my Syrinx to diminish a lot and the nerve damage is permanent. Which includes a lot of pain which I needed a surgically implanted medical pump which sends medication like morphine to the area around my spinal cord. Sadly some doctors don’t recognise this can be a very painful condition so not everyone is as lucky as me. Interestingly animals can get this too - especially Cavalier King Charles Spaniels and no one doubts their pain. In fact some countries are banning them being bred because so many have it the risk is too high and it’s considered cruel to breed them knowing the pain and neurological problems that do occur.

    During May we wear blue to do with our awareness ribbon (blue ribbon with a little drop of CSF). It’s a rare condition with around per 100,000 people having it. So many people are not aware of this very invisible condition. So I am hoping sharing my story and a brief overview of the condition will help people learn it’s name.

    1 reaction 2 comments
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    How long did it take you to get diagnosed with your rare disease?

    Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

    How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    1 reaction 21 comments