This is very long and I apologize! If you do take the time to read this - thank you! I need all the help I can get. I never would have connected some of these issues until a few years ago (who knew gastro issues, back pain and dry eyes could be connected ;)?). I know this list is thorough - I just don't know what is related anymore. Most of these symptoms have been a pain (no pun intended), but now they have just stolen my youth!! I feel like a frail, elderly woman and I am only 34! UGH!
It has been a very long decade! With every year comes a new diagnosis of some disorder/disease/syndrome, new symptoms and no solid answers! The primary doc just wants to treat symptom by symptom and when I do see a specialist, they too are focused on few symptoms. I finally got to a Rheumatologist this year and he just offered me meds (to tell you the truth, I don't even know if he officially dx'd me with anything – maybe psoriatic arthritis). I feel awful and an impending sense of doom, like if I don't figure out what is wrong with me, it's going to kill me. I can't get on the floor and play with kids, I can't have sex with my husband and the pain is getting worse by the month! Please listen to my story of symptoms and point me to the right kind of doctor because I am at my wits end!
Who knows when it all started, but I usually let people know that I had a strange virus in college (mono-like in length). At age 24 I noticed a hormonal shift. I started to get BAD acne that just lasted for a couple of months. I began to sweat more and had to switch deoderants. At 25 I then developed full-blown panic attacks that lasted for 2.5 years. I have also had some concentration issues, horrible memory problems, brain fog, lack of motivation, etc. Around 26 I began to have horrible gastrointestinal attacks that had a vasovagal component. Those have evolved in an occasional couple of weeks of straight diarhea that seem to be during hormonally crazy times (like a few months after the birth of my kids - they have ruled out Crohn's, UC, IBD, Celiac and Lactose Intolerance - one gastro doc just threw me in the IBS category and another recently said after a colonoscopy and endoscopy that it could be due to my acid reflux, which I have due to a hiatal hernia - I highly doubt this).
So, then after I got married at 26 I gained a bunch of weight - I was a twig when we got married and now my metabolism seems to have come to a stand still. That first year of marriage my libido went out the window never to be seen again. I also started to get UTI's every other month for the first two years and have to take anti-biotics every time we have sex (so sexy)! Also had BV a couple of times that year for the first time. We started trying to conceive at 27 and that opened another plethora of syndromes/maladies/pain in the butt disorders. I had noticed that my periods were getting lighter and lighter, but they were still regular. I have low progesterone, Endometriosis (dx'd via lap) and Polycystic Ovary Syndrome. My first child was conceived in a petry dish ;)! During this time I also found out that I have some congenital abnormalities -horseshoe kidneys and a ribcage deformity.
Around the time while pregnant with my daughter I started to have frequent nighttime urination that has not subsided when I am not pregnant. I also had significant hip, knee and wrist joint pain and weakness, carpal tunnel and tenosynovitis while pregnant - more than any of my friends complained about. My knees were so bad with my first that I had to have physical therapy for weakness 3 months after she was born.
I have had neck, upper and middle back pain for many years, but it has been much worse for the last 4 or so. I went to a chiropractor after my daughter was born and his x-rays showed barely notable scoliosis and that my neck lacked curvature - was very straight up and down - and he noted some arthritis, which he said he had never seen in someone my age (31 at the time). I have since seen an ortho and rheumy and I don't think they had anything to say about that specifically (again, Rheumy didn't think I would be crippled any time soon, but offered me meds - I think he and the ortho were leaning toward Psoriatic Arthritis).
My Psoriasis was diagnosed at about age 28. I haven't been able to do a lot of treatment while pregnant and nursing and I am afraid to take the systemic stuff, though my joints and back would probably feel a lot better!
Lets see - in looking for a cause for my gastro issues they discovered a sludgy gallbladder and slightly elevated liver enzymes (both unexplained).
I have severe TMJ, to the point that my left disc is dislocated (MRI confirmed). I am lucky to not have much pain, but I get muscle spasms some and I am not supposed to sing, which is more pain than actual physical pain (I love to sing and am good at it).
We managed to get pregnant with our second child au naturale, but while I was having my c-section the doc discovered that my bladder was see through/very thin - even while empty. He did surgery to correct it (I don't know what scared me more - that he saw something he had never seen before or that my podunk OB did surgery on my bladder). Anyway, following up with a Urologist next month about that, the frequent night urination and the horseshoe kidneys.
I have had some mild depression through this all (who wouldn't ;))! Recently though, I have been experiencing severe and explosive mood swings! They are so bad and are affecting my husband and children. I even went to a counselor, but I know they are hormonally related. My current internist put me on progesterone supplements and that seemed to help, but because I didn't get my period when I stopped them and based on my history of endo and other symptoms, she is passing me on to the gyno - thinks I am in early menopause (that's the latest attempt to dx me).
Today I feel like I am going to fall apart. I have joint and muscle pain so bad! My legs ache. Both wrists hurt like ***l and I have even noticed a bit of thinning of the lower forearms (I have been gaining weight everywhere else, especially in the middle, and my wrists now look like they did when I was tiny - very scary to notice that). Compiled with the fact that I have been experiencing weakness in my hands lately, I am not sure what this could point to. I am still nursing my son and often sleep probably cutting off some circulation to that area, so I have wondered if it is related to that - but it is both arms (and I have so much other pain right now - I just don't know what to think or do).
I have an adult history of occular migraines. They have gotten worse as the years pass. Thankfully, I don't have a lot of pain with those either - just visual disturbances, floaters or missing patches of vision. I have had tunnel vision with them.
I have also developed Chronic Dry Eye. It started about 4 years ago with light sensitivity and visual disturbances and then progressed to watering and now just really DRY eyes. I had to stop wearing my contacts all together.
If you took the time to read that, God bless you ;)! I just need direction. My Rheumy and Gastro did tell me to find someone here (I just moved), but is a Rheumy who I need? I need someone who will sit down and listen to me, treat me as a whole person and not certain symptoms piece meal! I need someone to run the right tests, connect the dots and get me some relief and a future! Of course, I am scared that the answer may mean a dire and painful future, but I need to know. If nothing else, I need vindication for years of being treated like a hypochondriac by my mother (thanks to mom for never being forthcoming with medical history until it affected my sister - RA symptoms - we both are RF positive - or herself - some form of thyroid issue, which as it turns out my great aunt and grandmother both had as well – ugh – I had already been enduring years of gastro issues before she brought forth that she had a history of colon polyps – not that it’s related, but isn’t it relevant for a history?)!
Again, thanks for listening!