I am a 28 year old female who has been struggling to find a source most of my symptoms. I've only recently had access to health insurance that would allow me to really dive into testing, but everything so far has some up negative.
I currently suffer from extreme exhaustion, lower abdominal pain after eating, daily joint pain and arthritis, migraines and sever headaches, flu-like symptoms after strenuous activity (working out to hard or long days in the sun) and frequent ear pain and ringing.
I know that I have Pseudoachondroplasia. It runs in my family, and I've been seeing a rehumatologist to try to help with the inflammation, but since it's not a wide spread disorder all we've been able to do is mitigate the inflammation with antiinflamatories and stretches. Pieces of my cartilage near my joints frequently break and get stuck in my joints, particularly my ankles, knees and elbows. She has tried some testing to try and pinpoint the source of my fatigue as well. All thyroid test come back as normal, but my b12 is always low. My first test was around 200 and I have a hard time keeping it about 600.
I started seeing a GI doctor because of the lower abdominal pain and for heartburn. We did an endoscopy and a colonoscopy. The test showed no signs of chrones or celiac, but my stomach and intestines are heavly inflamed and my esophagus shows acid damage, so I'm now on two anti-acid pills to help combat my anti-inflammatory medication.
I've completed a sleep study that showed no unusual sleeping disorders, though when I described my complaints they thought it might me mild narcolepsy. I generally get 6-7 hours of sleep and sleep mostly through the night, but I can't make it through a day without nodding off or loosing concentration. They put me on nuvigil (low dose) to see if that helped, and it did for about a day. By day 2 I stopped sleeping completely and they said that it was the lowest dose they could give me. So I stopped and never looked back.
I've seen a neurologist for my migraines/headaches and was put on three different medications which only made my headaches worse or gave me side effects that were just as bad. I currently take BUTALBITAL-ACETAMINOPHEN-CAFFE only to help treat an active migraine. I won't go back to a neurologist unless I can find someone I trust. My experience was that unpleasant and I'll leave it at that. From my journals and study on my own, I have classic migraines, sleep migraines and sever sinus headaches.
I've tried gluten-free diets (before insurance we thought it would be worth a try) and low sugar diets, but nothing has made much of an impact. I've done food journals to identify patterns with stomach and headaches, but the patters switch. The only consistency is heavy dairy is always bad. I'm going to try an anti-inflammatory diet next.
I've been to an acupuncturist who tried everything they could. They could clear my sinuses, but I got no other relief.
I tried a chiropractor and my neck, wrists and back are in more pain than they were before.
I'm at the point where the chronic daily pain is getting to be too much. I'm so tired that I don't have any energy to learn. When I have free time, all I want to do is rest. Its really difficult to focus and most of my interests aren't enough to push me any more. I'm not afraid to try and test things, but I was so sure that chrones was going to be the answer. (the colonoscopy was the most recent test I've had done). I honestly don't care if I find out that what I have can't be fixed, but if I know what it is, I can at least make choices to make the best of what I'm going through.
I would love any suggestions for people who are struggling with the same issues. Thank you!!!!!