I'm new here!
Hi, my name is sprysalamander639. I'm here because I was diagnosed with Chiari Type 1 Malformation and Syringomyelia over a decade ago. I feel very isolated not knowing anyone else with the same conditions and issues
Hi, my name is Mwoodard. I'm here because
#MightyTogether #Anxiety #Depression #Migraine #AutismSpectrumDisorder #ADHD #PTSD #Grief #EhlersDanlosSyndrome #ChiariMalformation #TraumaticBrainInjury #Syringomyelia #PosturalOrthostaticTachycardiaSyndrome #HidradenitisSuppurativa #Meningitis #ADHD
I am newly diagnosed, although my symptoms have been around for a while. Some of what I have experienced I thought was just horrible long lastingFibromyalgia flares. For instance, right now it’s my left leg and my left hip and my left upper arm and shoulder. It seems that jazz a week or so ago It was all across my shoulders and my upper back and my right arm and shoulder.
And headaches for months but now- no. But a lot of lower back pain.
Hi, my name is Ozkmtnhoney. I'm here because I just got diagnosed with Sm- T3-T-11. Seems to be progressing quickly, still searching for experienced Dr, takes my insurance, reasonable distance…ETC!! Thanks to some of the conversation threads here I am understanding more about what I’m experiencing. <3 #Syringomyelia 3>
Hi, my name is Amanda_42. I'm here because I have just recently been diagnosed with Chiari 1 Malformation/Syringomelia.
I am trying to learn a little about the conditions without going down a vicious rabbit hole. I have been struggling with focus and concentration for quite some time now and it's really affecting my job! I have not been able to be productive, both at work and at home. I am just curious, for others with these conditions, do you struggle with focus and concentration?
Thank you so much; I'm really happy to have found this group!
Much love and support,
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.