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New here #lookingforanswers

Hi I am new here. You can call me Bird for short. I have multiple chronic illnesses and am a childhood trauma survivor. It’s all too much to list in an introductory post but they include #heart , #Neurological , #gastrointestinal , #vision disorders and more. I have been through 2 longish term relationships, one was an engagement, but I don’t know how to have/ find a healthy one because men have to get past/ not take advantage of my illnesses ( I am a 40ish f that just appears a little younger but I feel like I’ve missed out on everything I should have done by this time because I’ve been sick at home most of the last 10+ years) how do I find someone who understands? Even friends? When I can’t drive… If anyone can relate and has figured this out please let me know. #lookingforfriends #lookingfornormal

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Bilateral swelling of ligaments and tendons

Hey bendy friends. I am at the end of my tether with the doctors and so called specialists. I have swelling in my tendons and ligaments that are identical on both sides but apparently there is nothing wrong ? Any way because it’s both sides and because it’s not just one side I have been fobbed off yet again. Please tell me it’s part of being bendy ? I did suspect rheumatoid arthritis but my bloods are not showing this according to the go ( I know you can still have RA without the factor in your blood but the doctor isn’t having any of it).
Picture of our new rescue dog because he is cute ❤️

Please tell me I am not going mad ?

#bendybunch #EDS #Inflamation #Tendons #ligaments #medicalgaslighting #Feelinglost #lookingforanswers


A day of progress. #Undiagnosed

Progress was made today in the search for a diagnosis. I had my first appointment at the pain clinic and felt truly heard. The doctor is concerned about my hyper-reflexivity and there doesn’t seem to be an obvious cause. The doctor will be running a lot more bloodwork to test for rarer diseases and syndromes. She is doing research before placing the lab orders and I may have another set of MRIs also. She also is looking through my pediatric MRIs and medical records to see if anything of significance appears there. #Undiagnosed #lookingforanswers #ChronicPain


Just needed to vent a little.

Today I had an EMG and Nerve Conduction Study on my arms, hands, and wrists. After having the appointment rescheduled 3 times due to the oh so fun weather we’ve been having in SW Michigan, the the rests came back 100% negative. No evidence of carpal tunnel or pinched nerves. Which is great, except for the severe pain I’ve been having in my arms, hands, wrists, and fingers since November. So far there has been blood work for rheumatoid markers, inflammatory markers, thyroid, comprehensive chem panels - all normal. Next step is a referral to a orthopedist and pain specialist.

Oh and I’ve had a sinus infection since the middle of January. Life is great. I’m not normally so whiny... I just needed to vent a bit.
#ChronicPain #Undiagnosed #lookingforanswers