I don't know what to do

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New Member

Date Joined Mar 2010
Total Posts : 1
   Posted 3/21/2010 3:02 AM (GMT -6)   
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.

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 3/21/2010 7:44 AM (GMT -6)   


Hang in there, and welcome to "our' reality. Please take comfort in the fact that so many of us could write the same "Book of MY Life" as you are. Been there, done that. Please print off the letter you just posted to hand to your dr. asap. Make a time line of every seizure, every symptom. Keep it simple, like on a spreadsheet. Drs. hate to read running narratives. Copy everything and ask for documentation for every dr's visit, every appt., every specialist you will be seeing, demand and obtain a copy of every lab test or scan you have done. Make a notebook, two copies of everything. One to give to a rheumatologist or immunologist who specializes in pts. with autoimmune diseases. One to keep updated. Ask for referrals, check with the switchboard operator of any medical university or teaching hospital within reasonable driving distance of your house. Ask which dr. on staff takes care of pts. with lupus, or fibro or immune disease. Trust me, they know each other. Look in the yellow pages, connect with someone at the Lupus Foundation of America, they are an awesome resource. Start a journal. I called mine my "Misery Log"yeah I use a calender planner and keep it at my bedside. Now that I am applying for permanent disability, I am ever so glad I did. My blessings were that my ANA, antiphospholipid antibody, thyroid antibodies, strep antibody titres were documented when they were elevated. I am a nurse, and I worked with my doctors, so they knew me. My frequent infections, prednisone use, and antibiotic use read like a train wreck of misery in my family drs. office records. Check with your pharmacy and ask for a printout of your prescription history. I think it's really important that pts. use one pharmacist, they can be a wonderful resource for good, accurate health information. Drs. are very lab value focused... HELLO DRS. are you out there????? Is anybody listening????  We are, so keep us posted, tongue hugs,




God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

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