Posted 3/21/2010 1:02 AM (GMT -7)
I've spent a while on the site here, looking at posts, and thank you all for being open and honest about your own struggles. I hope someone can...i'm not sure. Give me advice, maybe?
To be as brief as possible, i'm 31. I've been ill since late 2002. Got a Fibromyalgia diagnosis in early 2003, even though i didn't really fit the symptoms well. My mother has lupus. I thought i might have it as well when i had a seizure last November. Everything came back normal - no sign of epilepsy - or anything else for that matter.
So, blood tests. Negative ANA. Last batch, nearly everything came back negative. (B12 was too low) In the past i've had a high ESR (few times), high white blood cell count, and a rheumatoid factor. I went to a specialist who has done a lot of work w/ scleroderma, and she's high profile in the field. When i saw her, i didn't have my old blood work, and i wasn't granted a further appointment until September. I sent along the old blood work w/ the interesting stuff, and to boot i just had another seizure. It's linked to fainting - i've been a fainter since i was a child - and i am seeing a neurologist again the first week of April. Basically, i faint a couple times a year, some years not at all. It's only when my blood sugar is really low, then i cut myself, or roll my ankle, or some sort of sudden minor injury. The last faint caused a seizure, which the neurologist said would not happen again - sure, it could happen once, but it's a fluke. So, the first time i faint since that fateful November, and i seized again - shorter (40 seconds), less violent, but definitely another tonic-clonic seizure. Perplexing.
The rheumy told me to phone if i got worse. I told the receptionist about the seizure when i faxed the bloodwork. No response. The official word from the appointment was that i had fibromyalgia and 'something else'. She asked me a lot of questions about bruising easily (yes) and if my mom had miscarriages (yes).
My big symptoms are pain - 18 of 18 trigger points were active - but i feel if you gave me a good poke anywhere, i'd react the same way.
Swelling in the fingers, hip, wrists, and elbows.
low grade fever about 6 times a month, sometimes more frequent.
FATIGUE. Right now, it's making it harder to function than the pain is.
Sharp pains in my chest that gets worse when i breathe in, along with, ah 'regular' chest pain - tightness, ache, seem to get out of breath randomly. I've had a bad cough for two years, but my chest sounds clear.
I appear to have the Raynaud's phenomenon.
I get cankers that last weeks.
Headaches all the time, luckily, only three migraines ever. I don't know how some of you do it - migraines are so tough.
IBS has been suggested, but the drugs didn't work - i do not have Crohn's - after three abscesses, i had a colonoscopy. Food intolerances come and go, for a year i couldn't eat bread. There are periods where i'm just not into eating b/c i have diarrhea, nausea, cramps, and junk like that every time i eat.
In the past i had UTIs that were not actually UTIs - resolved, but they were mostly never infections. There's been blood in my urine a lot, protein a couple of times.
I've had major depression that vanished, without any relapse.
A semi-regular b12 deficiency - 3 different instances the last 2 years. I'm not entirely vegetarian, and i don't eat all THAT badly. I'm slightly overweight, but since September i've lost about 15 pounds.
My blood pressure was rock solid, even after i got sick, but in the last three years it's been climbing. I used to be 80/60, all the time (normal for me). Now i'm 120/80
No rashes, no sun sensitivities, no hair falling out. i've gotten hives a couple of times, i think, but i wouldn't want to swear to it.
What do i do? I'm further frustrated because i don't have a family doctor. I'm not on anything for anything, other than birth control. I don't know if i should keep harassing this rheumatologist and her receptionist. My stamina seems to have declined even since my appointment in February. But i don't know if i'm 'worse' enough to go warrant me going to see her before September.
What do i DO? I'm hoping the appointment with the neurologist would shake something loose, but it seems like a long way off, September seems longer, and i feel like i am painfully disintegrating. I've never felt this bad, and after 7 years and a bit of change, i feel like i can say that w/ some authority.
It's just harder than i thought to get things going - i had really thought that i had lupus, and in February i'd start on the business of managing it. My expectations were crushed. I know it takes a long time to even get a diagnosis. I just refuse to believe that with all the junk in my blood, the swelling, the seizures, that at the end of the day, i have Fibromyalgia Syndrome.
If someone has anything i can use, any advice, please, please pass it along. If there anything i can tell you that will help you give me advice, just ask.
Thank you. I know a lot of you have tremendous and terrible things going on in your own lives. You've already given a lot by just recounting your experiences, but really, any advice. I'm all ears.