I am a 41 year old single mom of three amazing sons and a chronic illness warrior. I have been diagnosed with Small Fiber Neuropathy (SFN), Rheumatoid Arthritis(RA), Chronic Fatigue Syndrome, Irritable Bowel Syndrome (IBS), Reynard’s Disease, Hashimoto’s, Exocrine pancreatic insufficiency(EPI), chronic pain, migraines, and daily chronic headaches and anxiety. I have an upcoming appointment at the end of August to see a cardiologist as I have had two abnormal EKGs. #MightyTogether #HashimotosThyroiditis #SFN #RheumatoidArthritis #ChronicFatigue #ChronicDailyHeadache #ExocrinePancreaticInsufficiency #IrritableBowelSyndromeIBS #ChronicIllness #ChronicPain #Migraine #Anxiety
I’m not new here, but this is my first time expressing myself. I was first Dx w/ Fibromyalgia in 2013, I didn’t let it define me! I was hit hard in 2018 with #Gastroparesis . A few months later, Hypermobile Ehlers Danlos Syndrome (although I knew I had #hypermobileehlers-DanlosSyndrome(hEDS), I just didn’t know it was a disease… I was a gymnast childhood - early HS). Then came one diagnosis after another. Whammo!!! #POTS , #MCAS , Small Fiber Neuropathy, etc,. So from 2018-Present. I have 15 confirmed diagnosed chronic diseases. I have not driven in a little over 2 yrs b/c of POTS & fainting, & it really sucks!!
All of my local friends have gone. My college roommates (7) & I have a daily group chat going. Nobody (1 roommate does) ever checks in with me to see how I am. Everyday I’m completely #Fatigued . I have #ChronicPain everywhere!!! I’m #nauseous . I have #chronicdiarrhea & #chronicconstipation . I have #ChronicMigraines It hurts to walk. The rapid electric zaps from the #SFN is excruciatingly painful. My #RheumatoidArthritis & my #Osteoarthritis & now #Facetarthritis in my cervical spine has become so debilitating.
I don’t want to be a downer, but I would friends/family just to text & say "Hi, I was just thinking about you, I hope today is better than yesterday… remember I always love you!" This way they don’t have to ask how I am doing, thereby don’t get an answer full of negativity, but at least I know that I’m still in their thoughts!
I’m angry. I’m depressed. I’m sad. I’m lonely. I’m #housebound . I’m bored.
SIGN THE PETITION! Demand that United Healthcare pay for Jenn’s life-saving treatment PLEASE SHARE!
UnitedHealthcare Bragged about $8.1 B in profit in 3 mos. made from people who pay them for health coverage. Their money model relies on denying people care–like Rights & Democracy NH member Jenn, who needs the care to manage serious illness.
SIGN THE PETITION Demand that United Healthcare pay for Jenn’s life-saving treatment ! PLEASE SHARE!
Intravenous immunoglobulin therapy for small fiber neuropathy: study protocol for a randomized controlled trial (de Greef et al.,2016)
Small fiber neuropathy is the most common cause of neuropathic pain in peripheral neuropathies, with a minimum prevalence of 53/100,000. Patients experience excruciating pain, and currently available anti-neuropathic and other pain drugs do not relieve the pain substantially. Several open-label studies have suggested an immunological basis in small fiber neuropathy and have reported efficacy of treatment with intravenous immunoglobulin. Therefore, immunological mechanisms conceivably may play a role in small fiber neuropathy. To date, no randomized controlled study with intravenous immunoglobulin in patients with small fiber neuropathy has been performed.