what if bloodwork comes back ok....suggestions?

hi all,
i am awaiting a call from my pcp today. presently he has me on flexoril 10 mg, and hydrocodone 5/500 x2 per day. my symptoms are many, mostly pain/swelling in my hands and feet, joint pain, fatigue, swollen nodes, headaches, sensitivity to sun and light and loud noises...today i woke with a horrible neck pain and allover pelvic/hip socket pain its something new every other day. so my question is.....if he calls and tells me my bloodwork looks ok, what can i ask him to do for me? he will ask me what i want to do...he is definitely open to suggestions. can i ask him to continue meds and add prednisone and refer me to a rheumatologist? i am afraid he will just leave me in the lurch so to speak. in fact...if i had my way i would need more painkillers until some of the inflammatory sx are taken care of, as the stuff i'm on dulls the pain a bit.....but not enough to actually sleep, even though i am dead tired!!!! any suggestions?
thanks for reading
krista

Post Edited (blushladybug) : 10/3/2008 9:46:23 AM (GMT-6)

HI Krista,

 

Okay, I have some answers for you.  Even before I read your second posting, Fibromyalgia was what came to my mind.  I have lupus and Fibromyalgia.  If you are in a Fibromyalgia flare up, all of your blood tests will be normal.  If it's a lupus flare up, your labs won't be normal.  this is a good thing for you to know!  From now on, when you get your blood tested, if the results look like you're a perfectly normal and healthy individual, then it's the Fibro flaring up.

 

My Fibro is a massive monster right now.  I'm depressed too. And anxious.  I hurt everywhere, and nothing takes the pain away. Do you feel like you're going to lose your mind?  Yes, Fibromyalgia will make us depressed.  For sure.  Lyrica is something you can try, same with Cymbalta.  I can't use anti depressants in high enough doses to work "for depression".  I have adverse reactions to the drugs.  But on really low doses (20-30mg), I take Amitriptyline (Elavil) to help me sleep and take the edge off the pain. It's not a cure by any means, but it does help a little.  Depression can definitely cause your pain to be worse. So can stress.  They're all linked.

 

I hope this has helped to shed some light on your normal blood work.  I had blood work done last week and I look like a person with no health issues.  So my lupus is dead quiet, but my fibro is so bad I can hardly keep myself together.  I think I have more trouble dealing with the fibro flares, than I do the lupus ones.....  Fibro is one of the most disgusting disorders a person can be afflicted with.  I know your pain..... Maybe talking to the folks in the fibro forum will help you too. 

 

Gentle hugs,

Ginny

Krista--
I have some suggestions for you as a "fibro" case that actually is pretty ill from a variety of problems and now called a "lupus like/sjogrens like autoimmune condition". First off, get copies of your labs from the lab facility or whereever you had them done and keep them. Look for yourself. I worked in a doctor's office and even with my experience as a patient, when they do a whole bunch of labs, they scan them in front of you and don't carefully look. I have had this happen at just about every docs office I've been to and they have missed a lot of stuff from all kinds of tests, from heart damage to spinal damage to liver problems to endocrine. Another problem is that sometimes they just do one test, or two tests and don't really test you for much. I think that women have a real problem with significant health problems being dismissed as depression and fibro and stress, etc. Besides, its good you have copies of your labs in case you see another doc and he needs them. All my docs tell me never to trust inter office mail between doctors offices, unless it's something really bad and the other doc calls.

Anyway, I have found that sometimes reducing my pain meds actually helps because you don't often get good sleep on hydrocodone. I take mine earlier in the day.

You should also check with the pharmacist that some meds you are on might be making things worse. It's an easy thing to do. Or get a "pill book" or search online and check the side effects.

Be skeptical of MRIs. If you feel you really have damage, get a second opinion from a doctor who can read MRIs, like an orthopedic.

I got sick of my health rapidly declining to the point of using a walker, real physical damage to joints and spine and the degeneration is so rapid and my spine is curling up. I have nerve problems as well and endo problems and liver problems and gi and all. So I went to Mayo, and they tested me for a whole bunch of stuff and tested all my likely antibodies--a bunch. I had developed antibodies for lupus, sjogrens, anti-LKM and P-ANCA, but only the P-ANCA was high enough to register as a positive. My anti DS-DNA was just a few points below a positive reading. Most labs would have simply reported negative for these tests, but Mayo looked at the levels regardless. My rheumatologist told me that the fact I have developed these abnormal autoantibodies is significant, even though they are not high enough to be considered a positive by the test guidelines, there were significant presence on their hypersensitive tests. He said I may be developing these autoimmune diseases, or they may go up and down as my immune system flares. Mayo also noted that since my sed rate and CRP and comps were good, my autoimmune disease was well controlled right now. Anyway, negative does not always mean that you don't have the antibodies, which is why they retest you even if your labs are "ok".

I felt lousy at the time of testing. My CRP and the rest went up later.

If you really feel like the labs aren't right, I would get copies and possibly seek a second opinion somewhere where they have more sensitive testing, like at a big medical center like Mayo or college. A single consult may help and your other doc doesn't have to know. My rheumie was really grateful to have Mayo helping and even offered to help me read through the report. He was happy for the more sensitive labs, which we didn't have around our area, even through a Universal Labs or whatever. I am much closer than I have ever been to getting a handle on my declining health and knowing what is down the road.

Well, I hope this helps some. I know it is really hard to feel awful and be told you have fibro and even that you need to exercise, when you have horrible fatigue and pain. Just listen to your gut feeling and follow your heart. Only you know how bad your really feel. Take care and I hope you can get some relief.