Sept. 4, '02
Well the biopsys are back, and turned out to be fine. Just a benign inflamation. My appt. with the naturo path never happened. My referal didn't go through, and my innsurance won't let me pick a naturo path as my primary care giver. Imagine that. So I am in kind of a temperary holding patern. I can't get any pain meds, treatment, or therapy, and my doctor wants me to keep coming in on a regular basis apparently just so I can remind him why I keep coming in to see him.
The only med that my doctor wants to write me a perscription for is viox. So like always, knowing that my doctor will never disscuss the risks associated with the drug, I research it my self. Keep in mind that I get my info from the FDA, and the manufacturers of the drug. Viox is a dangerous chemical that probley does help thousands of patients with out much risk to health of side affects. However when the doctor wants to give me a medication that has been known to frequently cause bad side effects, I have to raise an eyebrow.
August 15, '02
It's been quite while since I've felt like writing anything down about FM. I hate that word. I have been through a lot in the past several months, and feel like I'm stuck in a cycle that refuses to get my anywhere but back to the starting line. Never mind all the miles put in, that was just a warm up.
I've been running the referal/"what's your name again" doctor relay.
It's going to be in the nineties today, and my daughter is in the back yard. Her little swimming suit covered in grass stains, and her towel in a soggy clump next to her plastic pool. Maybe in two more years I can send my son out there too. I managed to do the dishes, give the kitchen a once over, tidy up the basement, pick up the bigger chunks of waffle pieces, and cereal, wash the clothes that have been washed three times over the last week, and dry them. My son took a less than desirable half hour nap. I'm wonderin how long till I can put him back in the crib. How long till I need to feed my daughter, and do I even have much to feed her? Thank God for string cheese, and kool-aid.
I'm wondering if I'll get around to folding that laundry today. Or make it to the grocery store, or cooking dinner today. I'm thinkin panninis. You know the sandwiches that you grill and melt together with goat cheese, portabello mushrooms, a variety of veggies, and more cheese topped with a vinegret. I usually prefer the veggie because it equals out all that cheese. It's an added bonus if the bread you use is focacia. Speaking of food, I think I'm starting to become lactose intolerant. I mean the diarrhea was different. It seems to hit about a half hour after I eat cheese or milk products. That's great I needed to find a different way to take my acidopholus.
Well to get back to the point. I have been to rheumatologists, GIs, gyneacologists, and a few others. So far we've learned that yes, I have blood. Yes, I am female, and 'yes, must be so frustrating for you, have you seen a shrink? By the way you think you may have FMS? I think you should see the rheumatologist before we refer you to any non-conventional medicine'. The last word almost sneered. Then I remind him that He referred me to a rheumatologist in Feb. when I found out that I had FMS on my own. The rheumy took a month to get in to, after which many test on blood urine, and x-rays., revealed no conclusive evidence. What a surprise. At least he was ran me through the gamut. I have been to several doctors, including my current one that don't order ultrasounds for ovarian cancer that is prominate in my family. And don't recheck my blood pressure after I was in last time with 80/60. He didn't check my shoulders that are bulking up, or the swelling on the left side of my collar bone up my throat. He didn't check my thyroid that feels twice the size of my massage therapists. He mentioned two weeks ago that he wanted to check my hormones and cortasol levels, and something about pituitary gland and the base of the brain, and something about adrenal glands shutting down. So go pee in this acid for 24 hours, and get your blood drawn yet again, and I'll let ya know in 10-14 business days. No don't call me, I'll call you. And if you call in the mean time for pain relief, and help, I will be sure to erase the messages that I promised on the voice mail to return as soon as I could. I will pretend to care when you cry in my office. I will pretend sympathy with you and your situation, and while you're gathering your things, I will attempt to recall what you need of me, while trying to figure out ways to over-bill your insurance co.
If you're reading this DR. M. Thank you for all of your time, and help. I might be back to where I started if you didn't try so hard. I know it must be difficult to glance at my chart before you see me. Even as you're walking in the door. Even though there are missing reports, and missing sensitive materials. But you know I have to find a new PCP again. That bothers me. Now I'm really at the beginning again. I'm seeing a naturopath this time. You know what they do after all the blood work and tests? They call you and discuss it with you. You can reach them after hours, and even if you caught them at home, they will remember important details that are in your chart back at the clinic. She will remember that I am allergic to anti-inflamatories, and have already been diagnosed by a rheumatologist. She will not keep mentioning that I try a research program an hour and a half away at the U. She will ask me how I'm coping, and won't hint that maybe what I really need is a shrink. She will understand my situation, with young children, and a husband that works odd hours, and that most my family lives 45 min. away.
So any ways, I guess I'm grumpy. My rhuematologist dxed me a month after all the tests, and pretty much said yup, fibromyalgia. I ask if I have Myofaschial pain syndrome also, which I know I do, and he responds with the interesting opinion that FMS and MPS, are the same thing. Well Ya know I bet you that a great majority of people who have these disorders, know the difference, and that they are distinctly different conditions, that frequently coexist, and that you need to handle them much differently.
I more than likely have pcos, but they can't tell me that conclusively. I just had five biopsies on my cervix because of a pap that they couldn't say one way or another. After bathing my cervix in vinegar which is supposed to turn bad cells white, he changed his mind and what was to be two biopsies into five. Hooray.
I will be going in to see my new PCP, the naturopath on the 26th. Hope I won't have to switch again for a long time. I am thinkin that maybe I should see of she could talk to me over the phone before I change with my insurance co. I should find out about the biopsies in as little as ten days, but it could be up to a month even. I love the challenge of a good wait while planning on how to tell my four year old why my hair is falling out, or if they do find cancer, how bad will all the procedures hurt. Do they remove entire cervix? I'm not sure I've ever heard of a cervectomy. Is that like a hysterectomy?
Tune in next time to hear, "Amanda, Do you remember when you had your biopsies?, yes, this is dr. V. Yes, we have your results..."
I'm sure my story will sound familiar to a lot of you. I will update this page as I go, and journal my progress (or setbacks).
I am newly diagnosed with fibromyalgia, and myofascial pain syndrome (4/23/02), however, I believe that I have had these conditions most of my life.
It's been a long journey to get to where I am today. When I finally realized that there was a name for all the pain, and other symptoms that I'd been experiencing at varying degrees most my life, I felt relief. Yes, RELIEF!!!!!
After going to one doctor after another trying to get help and understanding, I was incredibly frustrated, and did not know where to turn.
I've been to physical therapists, massage therapists, counselors, psychiatrists, psychotherapists, chiropractors, Gastroentorologists, Allergists, dermatologists, orthodontists, and optimologist.
I had no idea what was wrong with me, but I knew that something wasn't right.
Over the years I have been poked and prodded, and have gone through many invasive, and uncomfortable procedures. The tests usually came back normal.
In the past I have been diagnosed with IBS, TMJD, depression, scoliosis, GERD, Sacroiliac joint disfunction, migraines, chronic muscle tension, chronic sinusitis, lazy eye, gallstones and anxiety. Is it any wonder about the last one? I never once had a doctor who suggested that there may be something to all these symptoms. Never had a doctor who took the time to wonder why the physical therapy made me worse instead of better.
My list of symptoms is a long one, and I won't include all of it here. But I will tell you how I finally came to be diagnosed. After being pregnant with my first child, I started experiencing what I call my attacks. We still don't know what causes them, other than FM. It could possibly be my diaphragm spasming. It is incredibly painful, and they can last from five minuets to an hour. There have been several times that I was ready to call 911, however after all the tests I'd been through, I knew that there was nothing they could really do for it. I had my gall bladder removed when my daughter had just turned two. It made the attacks worse. They then sent me through a flexible sigmoidiscopy, colonoscopy, upper GI endoscopy, manometry, 24-hour pH study, scads of blood tests, MRIs, ultrasounds and CT scans. There are probably a few more, but I'm drawing a blank right now. (fibro-fog hehe)
Skip ahead a few years, and my daughter is four, and I have a six month old son. I had a major flare just after I delivered my son, (just like my first delivery). I started the search again. Reading medical dictionaries, searching web sites, anything I could think of to figure out what in the heck was going on. The problem as it turns out was that I was treating all my symptoms separately. In Jan. of this year (02), I ran across the word fibromyalgia. WOW!!!!!!!! Need I say more?
My whole life made sense. I called my doctor and made an appointment. To make a very long story short I finally got a referral to a rheumetologist. And the rest as they say is history.