joint pain/shrivering and feels like fever spikes-at times

Posted by kris1130 @kris1130, 3 days ago

My daughter was diagnosed at 16 with Dysautonomia, she is now 26 yrs old. We have been on a roller coaster of symptoms, medications, treatment centers, specialist. Within the last year she has these "episodes" we call them. Out of no where she feels immediate joint pain and "feels" feverish and then shaking starts and she usually has to immediately lay down with cool packs on her. It can last anywhere from an 45 mins-2hrs. It then lingers with a bad headache and feeling completely wiped out, joints hurting. After the "episode" , the painful joints, exhaustion continues for 1-2 days.
Her primary & endocrinologist don't have any answers for her. Curious if anyone has experienced anything like this? Could this by a Dysautonomia symptom that is triggered by something else in the autonomic system? And why would this all of sudden pop up within the last year?
Thank you in advance for any suggestions or research info I can look into .

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Becky, Volunteer Mentor | @becsbuddy | 3 days ago

@kris1130 your description sounds just awful. How do you handle it away from home? Have you ever gone to a comprehensive medical center or a university medical center? The doctors are usually ‘a cut above’, do research and continue their education. When the local doctors couldn’t figure out what I had, my husband took me to a university hospital in Denver. The drive is long especially during rush hour! Comprehensive med centers are usually nearer to big cities and also have excellent doctors.
Find out what’s near and give them a call! And do let me know if you are able to find out anything!

seniormed | @seniormed | 3 days ago

Sounds like the flu like symptoms of cytokine release.
May need blood count and inflammatory markers drawn at time of symptoms
to make a diagnosis. Could require a pediatric rheumatologist or immunologist. Has infection been investigated.
Did she have a strep infection or scarlet fever as a toddler showing autonomic symptoms?

covidstinks2023 | @covidstinks2023 | 3 days ago

Has she been checked for Lyme's Disease? Blessings & Prayers to you both....

kris1130 | @kris1130 | 2 days ago

In reply to @becsbuddy "@kris1130 your description sounds just awful. How do you handle it away from home? Have you..." + (show)

@becsbuddy
Thank you for that information, we have not looked into either of those but I will do some research around us and nearby cities.

kris1130 | @kris1130 | 2 days ago

In reply to @covidstinks2023 "Has she been checked for Lyme's Disease? Blessings & Prayers to you both...." + (show)

@covidstinks2023 I THINK she has but not sure how long ago, since she has been dealing with this for so many years. Different symptoms pop up and Dr want to say it's long covid related. She had issues started in 2010 way before covid and a Dysautonomia Center finally diagnosed some of her symptoms after the Tilt test. Just heartbreaking to see a young child have unexplained symptoms that now effect her adult years and with worsening symptoms. She has missed so much work but her awesome manager told to file for FMLA and they finally approved that not long ago.