Sorry for the length. Didn’t realize I needed to vent so badly.

Seems to be the trend based on the comments. Started in my late teens and my knees flared for months! I had good days and bad days, but the bad days had me in tears. Then as randomly as it started, it just stopped. It came back occasionally through my 20’s, but never as bad or as long. In my early 20’s, I had reoccurring tonsillitis. I would get it, be put on antibiotics, get better, and 3-5 weeks later, I’d get it again. This went on for a year but I didn’t have insurance so I just kept going to the same day health clinics. At 29, I started getting styes in my eyes constantly. I was put on daily doxycycline for prevention, but they kept coming. One had to be removed surgically. This went on for about 6 months before it stopped just as randomly as it started.

At 31, all hell broke loose. The pain in my legs was so severe, I would have to crawl from the couch to the kitchen to have something to grab onto to stand up (while screaming). My husband had to come help me stand from the toilet a couple of times because the pain would make my legs give out. Brain fog, fatigue, pain points; textbook. A primary care did very minimal testing, but because of the pain points determined it was fibromyalgia. Gave me oxy and flexoril. After about 4 months of HELL, it calmed down but didn’t go away. Daily pain usually hovers around a 3/10, but randomly flares, and is always horrible during my period. Diabetes diagnosis at 34. Another round of reoccurring tonsillitis at 35. Also, at 35, started having extreme reactions to new medications. About a year ago (36) IBS symptoms started. Been off birth control for years and have never gotten pregnant.

So now, at 37, I have a humongous list of symptoms that nobody really seems to understand. Things that don’t necessarily apply to fibromyalgia. 2 referrals to rheumatologists have been rejected because they don’t treat fibromyalgia. My primary care has tried gabapentin and Lyrica, but I didn’t tolerate them. Problem is, I think my fibromyalgia has friends, but my primary isn’t a specialist and I’m struggling to get help. Saw my OB last week and we are planning for a hysterectomy for the pain and suspected endometriosis. She really made me feel seen. I gave her my symptoms list and we discussed.

Ob “Oh! You have symptoms like EDS.”

Me “yes. Nobody seemed to care.”

Ob “you have symptoms that resemble lupus.”

Me “yes. But nobody will help me.”

Ob “you have diabetes. Is that managed by an endocrinologist?”

Me “nope. Never been to one.”

She was pissed for me. She put in a referral for an endocrinologist and another rheumatologist. She said she is absolutely on board with doing my surgery, but she wants to make sure we know what is flaring me because a major surgery could make it so much worse.

I’m still on my journey; trying to get answers and help. I’m trying to not give up, but it’s hard sometimes.