Hi to all!
I am lucky to have found this forum, as it really does seem like a supportive and warm place to be. I'm sure that all of you are very aware of just how isolating and lonely this illness can feel! I try my best to remember that I am NOT alone, and not the only person suffering from this condition. While there are many things that I cannot control, I always try to be mindful of the way that I resond to stress and my pain. Anxiety and depression are a problem for me, but I refuse to fall into the trap of feeling sorry for myself.
So, my background (being as brief as possible) goes something like this:
I had a normal pregnancy (with healthy blood work- ie hiv-, CBC, gestational diabetes) and birth in 99/00. During the pregnancy I did suffer from multiple urinary track (UTI's) infections. about three months into post partum I started suffering from severe post partum depression and OCD (scary thoughts). I lost my appetite due to the emotional stress and in turn lost a lot of weight. I struggled with PPD for what seemed and seems like longer than I should have, as I was still having symptoms well into the my child's toddler years. I was given various SSI's and Xanax for panic/anxiety.
Around 03 I started getting sinus infections that wouldn't go away. I also started having intense facial pain that would increase during thunder storms or rainy days. Upon waking up in the morning, my feet would feel like rubber when they touched the carpet. They would have a subjective feeling of swelling and sometimes pins/needles. Also, my legs would cramp at night and ache much like they did when I was a child. My mother used to call the pain that I had "growing pains".
As my health seemed to get worse and worse, my OCD would kick in. I thought I had cancer or hiv. I'd go to the doctor on what most would consider a constant basis... It seemd to be one complaint after another. I had several CBC's (and other blood tests) and was always told that I was just "anxious". I felt tired and "not quite myself" for year after year". By 2005, I started gaining weight. I had more blood work done. "Normal". In that period of time I lost and gained weight in a yo-yo fashion. I always seemed to have a cold. Also, I'd have subjective pains, IBS symptoms, headaches, TMJ (a dentist suggeted), nasal sores/ congestion, strange skin sensations, rashes, hair loss, and a feeling that I was hung over (without drinking, of course) upon waking. I thought for sure that I had Lupus, but was again told that I was "anxious".
In late 05 I had a yeast infection unlike any that I had previously had. I started having the urge to urinate up to 40 times a day. The skin surrounded my urethra was inflamed. Sex was another nearly impossible task. The pain would continue long after intercourse, sometimes bringing me to tears. I was put under another battery of testing. The diagnosis was "IC". The IC nearly drove me crazy, for the lack of a better word. I am still battling it, but it doesn't seem to be as intense as it used to be. Maybe I am just used to it by now?
By 07 I had lost so much weight (underweight for height) that my doctor sent me to the Gastro. I was told that I had IBS and GERD. My weight loss was attributed to "stress" (ugh!) and a possible side effect of Effexor. By that time I was just sick and tired of being sick and tired. My tail bone started to hurt. The pain was so intense that I found sitting impossible. Also, my pelvic region hurt. I ended up taking a trip to the ER after experiencing lower quad pain that was so intense it took my breath away. I was told that I had an ovarian cyst rupture. Great, right? They sent me home with a bottle of Naproxen and a, "have a good life".
My tail bone pain was finally given a techinical term: Coccydynia. After months of crying to the doc, they put me on Percocet. Needless to say, it knocked me through a loop. The pain was managed, but the side effects added to the problems I was already experiencing (fatigued, nauseas, dry mouth and so forth). It was like a catch 22. The doctors didn't want me to stay on such a heavy narcotic, so they sent me to a pain clinic. The particular clinic I sent to did not use narcotics. There, I was assessed by Anesthesiologist that, for reasons I cannot remember now (darn this fibo fog! ;)), suspected Fibromyalgia. It was like a blessing and a curse, hearing an actual collective name for what seemed like too many seperate disorders.
I was given a few treatments at the clinic, but (sadly) they didn't help the pain at all. So, back to the primary doc.. I ended changing doctors twice. In the end, I found a doctor that has been trying to work with me (very important, yes). The only problem now is that she and I both are frustrated. She doesn't think that Fibromyalgia is a progressive illness, but it seems like it for me. My symptoms are piling on (joint pain, Costo-sternum pain, increase in pain severity) and she's probably tired of seeing me every month. I am being treated wiht pain medications, but this isn't something that she is very fond of. Even though she is a very sweet doctor, she does tend to make me feel like I should man it up, so to speak, and do without pain medication. OTC's seem to do little to touch my pain, and the arthritis meds make my IBS roar.
Oh, I should also note that I have allergies and asthma. The asthma was dianosed over the summer. I've had ear pain and fullness since last spring. I've recently ran a course of antibiotics, and noticed some relief during, but now the pain is back- and I have a burning sensation in my mouth (being treated). Oh! I'm seeing a rheumatologist soon. My Dr. thinks it might be time for a second opinion, and I agree. It seems like all of my treatment steps have been out of order to begin with. It's a little scary, but I'd rather have a concrete dianosis than go untreated (be it RA, MS or Fibro).
I could go on forever, but my fingers are burning and I'm not in the mood for writing a novel! ;)
Anyway, thanks for welcoming me to this forum. I'll probably mostly lurk, but again, it's nice to know that I'm not alone.
xo