Just to start off, reading everyones posts really helps me with all of the CRAZY symptoms I am having. I am a 26 year old female and feel like I have this huge weight on my shoulders, constantly. As of right now I have a diagnosis of UCTD, which even with my Rheumy saying that, he also throws out Inflammatory Bowel Disease with associated Arthritis. I just need to vent and learn some coping skills so that I don't fall into a deeper depression of what use to be and what I now am left with.
My mom has lupus and a ton of autoimmune diseases run in my family (Chrons, Arthritis, Ulcerative Colitis, Gout, Psoriasis, Muscular Distrophy, Miotonic Distrophy, Thyroid Issues.)
I won't even try to make this breif hahaha because I KNOW there has to be someone out there who has had these symptoms and this isn't an anomaly. As y'all know, these diseases really do have thousands of symptoms and take us all down so many paths and just make us feel crazy! :)
Since my teens, I have always had problems with my back (herniated discs), achy hips, twitches, acid reflux (never diagnosed), which became normal for me but, once I looked around at my friends, I realized this wasn't normal for my age. Feb 2010, I had an acute inflammation of 3/4 of my colon, causing severe bleeding and inflammation. I was in the Hospital for 4 days, not able to eat, and on IV steroids. Once the inflammation was down, they performed a colonoscopy, which came back inconclusive and I was sent on my way. (On my way to feeling like I was hit by a MAC truck for the next week!) From that point on, I had small bouts of intestinal "discomfort" :) and inflammation.
In Aug, I moved across the country to persue a better education. From Mid August it was ON! A slow onset of fatigue, intestinal inflammation, achyness, brain fog, stuttering, twitches, involuntary muscle movement, vibration in my right thigh.
In October I went to the doc for this onset and she ran a ton of tests and the only one that came back positive was my ANA. (1:160;smooth speckled pattern) A few weeks later, I had an accute flair up, which consisted of the following: Fatigue, fever but felt as though I was freezing, red feet, red legs, swollen hands, I felt as though I was burning up and felt like an infected pus wound, finger tips were off and on blueish purple. (That evening I went to Urgent care and the doc gave me 60mg of prednisone to tapor, and a referral to the Rheumy. By morning I coud barely move and was in the most excruciating pain I have ever been in. I felt as though my entire body was crushed from the torso down. Went to the ER (to wait for 3 hours, balling my eyes out) for them to give me morphine and send me on my way. Went to the Rheumy, ran the blood tests, WBC high, positive ANA and that was it. Put on Prednisone from Oct to Jan (WORST emotional ride EVER), tried Cimbalta for pain (didnt work), plaquenil, Sulfasalazine, hydrocodone, oxycodone and some others I cant remember. He thought it was Inflammatory Bowel disease with Arthritis (because of my ONE bout in the hospital) Nothing was working and I was just as sick, daily. Moved back to California to see an AMAZING Rheumy, who has me on Sulfasalazine, which we are waiting to see if it helps. (Trial and error I guess) I have a low thyroid, Low Compliments, Positive ANA...
Now just waiting for a medication to stick. Don't care about the diagnosis anymore, just want to feel better. Currently applying for temporary disability. (Talk about a blow)
Any advice, words of wisdom, tips, stories of similar symptoms are So very appreciated. I'm so fortunate to have such wonderful support but, I keep falling in and out of depression and don't know if it is the illness, medication, or just me. I get so hopeless at times and it is almost painful.
Semi dx: UCTD Currently taking: Plaquenil, Sulfasalazine, Tramadol, hydrocodone, Vit D, Prednisone (20mg tapor)
Have taken: Prednisone, cymbalta, and some others : )
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I have lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."