Undifferentiated Connective Tissue Disease

I’m here because I suffer from #Fibromyalgia and #UndifferentiatedConnectiveTissueDisease
Looking forward to meeting you!

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

#MightyTogether #Fibromyalgia #ADHD #Crohn 'sDisease and Undifferentiated Connective tissue disease

Hi, my name is Sally (38). I'm undiagnosed (as far as the primary/the root of everything) and have extensive medical trauma to the point I'm avoiding doctors altogether. Diagnosed with #chiarimalformation #syringomyelia #undifferentiatedconnectivetissuedisorder OR #eds (diagnosis was rescinded after covid for some unknown reason and replaced with UCTD) #positiveana and #Migraine . I have a son with #t1d a husband with #adhd #hashimotos another unknown number of sons (we have 5 boys) with #adhd #Anxiety . I care for my mother with #sle #ra #sjogrens #raynauds #heartfailure end stage #Anxiety #medicaltrauma #MedicalPtsd .

#MightyTogether #chronicmom #chronicdaughter

Hi, I’m SpoonieNurse85. I’m new here. Just wanted to say hello. Hoping to find a community of people who really understand what it’s like trying to survive day to day. #Depression #Dysautonomia #Anxiety #Migraine #PTSD #InappropriateSinusTachycardia #UndifferentiatedConnectiveTissueDisease

Hi, my name is Standingtall77. I'm here because I have been diagnosed with Undifferentiated Connective Tissue Disease, Fibomyalgia and a long list of food allergies … I was already living with Asthma, Hypertension, Migraine, Tinnitus and Nasal allergies and now have few more to live with.. I don’t know anyone around me who has or knows about the auto immune disease or fibromyalgia… everything I have to read online … here it will help me understand and deal with my conditions better knowing that I am not alone ..

#MightyTogether #Migraine #Fibromyalgia

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

Hi, my name is Hanolo14. I'm here because I want to hear how others like me have stopped their illnesses from controlling their lives

#MightyTogether #Anxiety #Depression #UndifferentiatedConnectiveTissueDisease

Hi, my name is Peacheschuhuahua2018. I'm here because I would like answers on how to live with uctd. I am 69 years old.

#MightyTogether