Symptoms and Tests

Discussion in 'Fibromyalgia Main Forum' started by SkeptikSharon, Sep 10, 2008.

  1. SkeptikSharon

    SkeptikSharon New Member

    Hi All,

    I'm on this whole testing adventure to try to find out what is going on with me. I have been diagnosed with Fibromyalgia, but I really don't think its enough to say, "You have fibro, deal with it" or "Here take some pain pills." So I'm forcing my docs to do actual testing and am seeing various docs. Here are my symptoms:

    *Pain in low back, shoulders, neck, back of head, hips, elbows, knees, and wrists (occasional back pain, usually around periods since accident in 1996, chronic pain since 2005)
    *Migraines/Tension headaches (migraines since teenager)
    *Orthostatic hypotension (upon standing - dizziness, lightheadedness, vision blacks out, heart palpitations, and have to sit on ground or at least lower my head before I do actually pass out - has happened since I was a teenager)
    *Brain fog (forgetful - sometimes forgetting to eat, can't focus or concentrate, difficulty choosing correct words and some stumbling over words when trying to speak)
    *GI issues (nausea, occasional vomiting - usually in morning before eating, constipation, abdominal pain - even eating or digesting HURTS but I don't think its an acid problem)
    *Difficulty urinating (hesitancy and trouble emptying bladder completely - think its probably Pelvic Floor Dysfunction)
    *Sleep issues (Alpha-EEG sleep disorder - difficulty falling and staying asleep)
    *Menstrual/hormonal issues (increased pain in back and hips, increased migraines, night sweats during period, irregular periods - think I might have skipped ovulation a couple months recently and had month-long periods)
    *Sinus issues (congestion especially in morning and always runny nose - never leave house w/o kleenex)
    *Throat issues (occasional sore throat, felt most often when trying to swallow certain foods especially bready foods, and excess mucus?)
    *Increased hair loss
    *Sensitivity to food tastes and smells (sometimes the wrong smell can't make me puke)
    *Sound and light sensitivity (not just during migraines, but all the time...makes me very irritable when in loud or crowded places)
    *Sex issues (no sex drive, pain during sex - probably PFD)
    *Muscle weakness (especially in legs)
    *Palpitations and feel like can't breath when climbing stairs or walking too far
    *Skin changes (collapsed capillaries on face and chest, increase in cherry angiomas - I know harmless, possible increase in moles)
    *Increased bruising and easy bruising (I leaned against a table with my legs and ended up with this nasty bruise going across my leg just from leaning lightly - and I'm NOT anemic!)
    *Balance issues (difficulty walking straight, bump into walls and doors a lot, usually have hand on wall so that I don't hit the wall too hard - possibly due to muscle weakness in my legs and knees)

    That's all I can think of right now as far as symptoms go. The normal CBC and whatever other "normal" blood tests they do are all normal. I'm not anemic.

    Last Friday, I convinced my pain doc to order viral tests:
    *EBV titer
    *Herpes 1 & 2 (requested all 8, but he only ordered 1 & 2)
    *Varicella Zoster
    *Coxsackie A & B

    There were others I requested, but he didn't know which were blood and which were not, and there were 3 that the lab couldn't figure out the tests for. I should get the results in the next week or so.

    I also saw an endocrinologist and he ordered some tests on thyroid and adrenal:
    *AM Cortisol
    *Anti TPO Antibody
    *Anti thyroglobulin Antibody
    *Vitamin D
    *DHEA Sulfate
    *Renal Panel
    *Free Testosterone
    *Vitamin B12

    Those were the ones he wanted to start with, but I know there are others that should probably be done.

    I've also had a transvaginal and transabdominal ultrasound, and should get the results from that today from my gynecologist. Probably normal though. I want her to actually check my hormonal levels though, as I feel there is probably something off there.

    I had an endoscopy done recently, and haven't gotten the full results from that yet. I understand it to be essentially normal, but some redness in upper small intestine. They took a biopsy so in a couple weeks I should find out about that.

    For my heart, I've had an EKG and the 24hour Holt Monitor. I do want to request a tilt-table test and any other tests needed to actually diagnose the orthostatic hypotension and figure out WHY (is it low blood volume needing a high sodium diet or is it neurological or something else?).

    I also need to find out about testing for bacterial and fungal infections, as well as that mycoplasma thing. But the docs don't seem to be that well-informed, so I need to tell them SPECIFICALLY what tests I want done.

    I'm hoping that some of you have recommendations as to what tests should be done for what items, especially the bacterial and fungal infections, and any other viral infections that may play into this whole Fibro/CFS deal. I did have mononucleosis when I was 16, which I believe is the EBV virus, right?

    Oh, also, in regards to Lyme disease, I had come across this site talking about neurotoxins, and one of the questions it asks is about spider bites. Can spider bites cause Lyme or some other type of neurotoxic condition? In 2002, I was bit by what I thought or assumed was spiders. I had 4 or 5 spots on my leg that had that bulls-eye type look to it, about a quarter big at its largest. I was sick for about a week from that with headaches, fever, fatigue, etc. I went to my candy doc at the time and he just gave me antibiotics and a tetanus shot and a note off from work. But could that have anything to do with what I'm going through now? I've never been evaluated for Lyme or Lupus or anything.

    I'm 29 years old and feel like I'm 70! This is NOT okay! Alright, so this is really long, so that's it for now. Thanks in advance for any ideas you all may have! =)
  2. cshellz

    cshellz New Member

    Read your post and was amazed at how many of the same symptoms I have also. OMG I feel like just going and having some major scan head to toe and inviting all my dr's over to have a conference together. They all try hard and when they can't find a reason either offer my drugs (that don't agree with me) or shake their heads and send me to another specialist.
    Saw a couple of rheumy's and one a woman said that it was just menopause--and pretty much gave me the 'snap out of it' mentality. I left in tears and did not go back to her.

    Anyway, wish you well and will watch for updates on what you find. So please post again.
    I am seeing a neuro now--again. He found my lupus test (ana) was slightly reactive but he said not enough to be concerned--just might be inflammation.
    Sign me 50 going on...???
  3. SkeptikSharon

    SkeptikSharon New Member

    Well, I definitely would not have gone back to the doc that said it was just menopause! I'm pretty sure I'm not going into menopause, since I am only 29, although its kind of likely that I have some kind of hormonal imbalance (which is really hard to get them to test for when you're only 29 years old!).

    I really wish all the docs would actually COMMUNICATE with each other! I wonder what things they might find if they actually worked together to figure out what is going on.

    Oh! And to my list of symptoms/conditions, I forgot to add Mitral Valve Prolapse, sensitivity to heat and cold, cold hands and feet (my toes actually hurt!!!), and temperature regulation issues (I go from cold to hot with absolutely no reason for it, and often get chills or sweats). I can't even remember all of my symptoms!!!

    I will be sure to keep you all updated with whatever my test results find. I did find out that my endoscopy that I had done showed normal, although I haven't actually seen the report yet (just told over the phone, so not sure how accurate).
  4. Timaca

    Timaca New Member

    And you've ordered a ton of good tests to help you determine what your problems are.

    I would suggest also ordering HHV-6 (see for lots of info).

    Also chlamydia pnuemonia and mycoplasma pneumonia.

  5. vannafeelbettr

    vannafeelbettr New Member

    The test you need to take may lie in the onset cause. Mine was a car accident. I have nervous system dysfunction (cervical and lumbar radiculopathy) that came on in tests. I also have all the other symptoms you have (pretty much EVERY one), but unfortunately, they call Fibromyalgia the "invisible" disease because ther is no concrete test for it. it's found through process of elimination of other diseases you test negative for but have symptoms of.

    And also be aware, there are many docs out there that don't believe fibro is real, so they will have nothing to tell you except 'everything is fine, there is no problem'
  6. SkeptikSharon

    SkeptikSharon New Member

    Timaca - Thank you! I will request that those be ordered as well. Do you happen to know if those are straight blood tests, or if they require something else? I know some of the other viral tests I was going to have done require stool or swab, so I haven’t done those quite yet.

    Vannafeelbettr – I hate this whole “invisible disease” thing. There’s no actual test for it, and yet, if you complain to doctors about your other symptoms, EVERYTHING gets blamed on fibro. I saw my gynecologist today and was asking her if she knows anything about Pelvic Floor Dysfunction, and explained those symptoms that I’m having, and she pretty much brushed it off as being part of fibro. But she doesn’t know anything about fibro!

    Speaking of the gynecologist, I had an ultrasound done a couple weeks ago and got the results back from that. Apparently I have cysts on each of my ovaries. She says they are small and shouldn’t be causing any pain, but I should have another ultrasound done in 2 months to make sure they’re not growing. I also have to go have an ultrasound on my boobs, because they are apparently so lumpy that she can’t even really do an actual exam on them. Fun, fun. I’ve never been good at doing the self-exams on a monthly basis, but I don’t think they used to be that lumpy. Of course, I have lost a ton of weight due to the digestive problems, so I’ve lost weight there too. I don’t know anymore how they are “supposed” to be, and because they are lumpy now, it’s pointless to do monthly exams because I can’t tell the difference! (Or even remember how they felt the month before!) I did convince her to do two hormone blood tests – Estradiol and FSH. I wanted her to do a full test on those hormones though.

    Oh, vannafeelbettr, sorry I missed the question about the onset cause. I’m not entirely sure. Here’s my “major” history:

    Mononucleosis – 1995
    Car Accident – 1996 (start of occasional back pain)
    Work/Stress Overload – 2005 (that’s when the pain became chronic)

    Between 1996 and 2005, I had a few kidney infections, a few throat infections (including strep), and quite a few episodes of what I thought was food poisoning or something along those lines. Plus, I’ve been living in an apartment with mold in the bathroom for the last 7 years, but I’m not sure what type of mold or if that has anything to do with it. As far as the radiculopathy goes, what tests did they do on that and what did it show? I know that I have “minor” spinal stenosis in the cervical area and the lumbar area, but no one has ever really been concerned about that, even though that’s been going on since 1996.
  7. EricaCFIDS

    EricaCFIDS New Member

    I'm sorry for all you are going through and hope you can get answers soon. I was diagnosed with CFIDS a year and a half ago and have been on a long journey since 1991. I've suffered along the way and seen every "expert" under the sun.

    Finally someone suggested I rule out lyme. When I was filling out the long questionaire to see a lyme literate doctor (llmd) it was like a huge light bulb went on when it asked if I had ever had a spider bite? YES!! And I got a strange rash where the outside was a red ring and after that all of my symptoms started.....that was 17 years ago!

    I have gone through many stages of misery and now I am on the road to recovery. Not everyone has lyme, but it's very likely you do from what you describe. I never saw a tick and I always thought it was a spider bite. Based on what you wrote below, I would say you should very seriously investigate this possibility.

    "Oh, also, in regards to Lyme disease, I had come across this site talking about neurotoxins, and one of the questions it asks is about spider bites. Can spider bites cause Lyme or some other type of neurotoxic condition? In 2002, I was bit by what I thought or assumed was spiders. I had 4 or 5 spots on my leg that had that bulls-eye type look to it, about a quarter big at its largest. I was sick for about a week from that with headaches, fever, fatigue, etc. I went to my candy doc at the time and he just gave me antibiotics and a tetanus shot and a note off from work. But could that have anything to do with what I'm going through now? I've never been evaluated for Lyme or Lupus or anything."

    People here will tell you it's a "fad diagnosis" and all other kinds of garbage, but it's very real. Trust me. It may not be everyone's answer, but you should certainly look into it as a possibility. It starts with the rash you describe and continues to invade your systems. It's not something you want to wait to treat.

    The best place to start is the lyme board here or go to lymenet. The person to evaluate you should be an LLMD (lyme literate doctor) who knows what tests to order and how to read the results, even if they are negative.

    Good luck!

    All the best,
  8. SkeptikSharon

    SkeptikSharon New Member

    EricaCFIDS – Thanks for the post! I will definitely try to find an LLMD to evaluate me. That rash you described was exactly what I had! I assumed, especially from how sick I was that week, that it was some kind of spider bite – maybe baby black widows or something, but my doc was not concerned (that was my candy doc who would give me whatever I asked for – useless!) That was in 2002 that I was bit. I ended up resigning from the job that I was working, because my migraines got so much worse and I couldn’t function. Then the job I had after that, I also ended up resigning from, because the migraines got bad again, couldn’t function anymore, couldn’t eat or sleep. I thought at the time that it had something to do with the antidepressant meds I was on and ended up going into the psych hospital for a med change (I don’t do well AT ALL with changing meds, because of withdrawal symptoms). In 1998, my candy doc had decided I must be depressed, because I was having difficulty eating, sleeping and functioning. I don’t think I was ever truly depressed, because the years of antidepressant meds (a variety of them) only made me worse mentally. Once I finally got off those meds (beginning of 2007), my mind felt much better for a while, but its all gone downhill now.

    When I had gotten those spider bites, it was after 4th of July and I had been up on the roof of my in-laws house to watch the fireworks. So that’s why I assumed spider bites. But it was weird, because there were four or five of those spots and they didn’t go away for a couple months. But I started feeling better at the time (other than the migraines of course) and forgot about them completely until I came across that neurotoxins site. That scared me!

    So I’ll try to find an LLMD as soon as possible for evaluation. Thanks again, Erica! =)
  9. SkeptikSharon

    SkeptikSharon New Member

    Jam338 –

    I’m sorry for you too! It stinks to feel like this all the time! I’m sorry to hear that you have been bedridden for a lot of the last 3 years. I feel for you! I haven’t been completely bedridden, but I have been unable to work since 2005. I tried going back to work in March of 2006, made it for 2 months, and couldn’t take it anymore. Tried again in July 2007, made it for 2 months, and couldn’t do it anymore. Then when my state disability ran out again, I tried to go back to work, made it for 6 hours, and I could tell I wouldn’t be able to do it. Already after 6 hours sitting at a desk, I hurt so much! Fortunately, I was able to go back on state disability again, but it won’t last long, since its based on only 2 months of work. So now I’m applying for SSDI, because I know until they figure out how to make me somewhat better, I just can’t do it.

    Wow, you only learned 3 weeks ago that you are Lyme positive? After 15 years??? I’m almost certain that I will test positive for the EBV titer, based on the fact that I did have mono in 1995. I’m not sure if just having mono would keep the infection in my body, but it wouldn’t surprise me. My health has never been that great. Lots of infections and illnesses when I was a kid. I’m wondering too if mold infections might have anything to do with it, because I remember one of the houses that I lived in when I was little had black mold all over the wall behind our couch (which was one of my favorite places to hide – yuck!) and we now have mold in our current apartment. Plus, my mom developed asthma, so I wonder too if she might have lingering issues. She’s never been that healthy either.

    Yeah, I have done some homework on viral testing, not enough but some. I found a website where a doc listed the major viruses that he tests his FM/CFS patients for, so I figured that was one place to start. How crazy that so many have tested positive for Lyme! I think the problem may be that most docs don’t know what other things it might be, and especially lately, with all the commercials about FM, I think the uneducated docs just assume that must be it.

    In my opinion, based on what I’ve read, it doesn’t seem that FM is an actual diagnosis, but more like a name for symptoms when pain is the main symptom. Docs are not educated on what to rule out, what other possible conditions may be, or even on possible causes. So that’s my next step – find an LLMD and get evaluated! =) Thanks again, Jam338! =)
  10. EricaCFIDS

    EricaCFIDS New Member

    You sound like a very obvious lyme person, by your bullseye bites and all of your symptoms and progression. I'm so sorry. I know what it's like. I am on the road to recovery though and want you to get there too. Have hope! You need to get to the right doctor and make sure it's a well referred LLMD. Testing is murky at best, but the problem is with false negatives not false positives (as many will claim).

    Like you, I remember the rash and how long it lasted and looking back all of my symptoms started after. I have the "neuro" symptoms, hypercoagulation, major hormonal imbalances, etc. etc. It's been a very long road.

    Good luck to you and I'm so glad you will be finding an LLMD! Post back and let us know. I'm the same name on lymenet too if you want to PM me there. I don't come here as often now that I'm in treatment. I'd love to help. That's why I come here now.

    All the best,
  11. SkeptikSharon

    SkeptikSharon New Member

    Erica -

    I came across a post in the Lyme forum, I think by you, that mentioned a Dr. H in California? Would you be able to send me his name and info, if you have it? I also requested names through some other sources.

    Thanks! =)
  12. gapsych

    gapsych New Member

    Welcome to the board.
  13. EricaCFIDS

    EricaCFIDS New Member

    Okay! I did. Let me know if you need more help! I'm so glad you came here to find answers.

    Good luck and keep us posted!

    All the best,
  14. SkeptikSharon

    SkeptikSharon New Member

    Jam338 – I am definitely open to all testing avenues. I just need to figure out what they all are! =) I know there are multiple pieces to my puzzle, which is why the things the docs have told me to do so far haven’t worked for me.

    You are so right about everyone having unique chemistries and exposures. I am concerned about adrenal fatigue and thyroid issues, but am concerned that my results will be within the “normal” range, although maybe not normal for me. But most doctors aren’t going to be willing to understand that or try to work with it. I wish more doctors would be willing to think outside the box, especially when it comes to patients who their “normal” therapies are not working for. It seems like its that way with a lot of the possible causes to FM and CFS.

    I did come across some of the postings on mold, which was very interesting and concerning to me. Another area to pursue. It becomes hard though, because there are so many areas to research and pursue and so little energy and money to pursue them with! =)

    It makes sense that our bodies would be weakened by something that originally went wrong, allowing other opportunistic infections and so forth to take hold. The reactivation thing scares me. If I had reactivated infections, would I necessarily have a fever, or if my body isn’t fighting it or seeing it, would it then not cause a fever? I’m still a little confused and overwhelmed by all this and there is so much more reading and research to do. Do reactivated infections always cause fevers? I don’t think I usually have a fever, in fact I can’t remember having an actual fever the last year or so, but I don’t think I would necessarily know, because my temperature is usually a bit low, around 97.0-97.2, so a fever for me may be normal for others. And I have issues with temp regulation, where I go quickly between hot and cold and either start sweating or get chills. I don’t know. It’s weird.

    So once I identify all of the virals affecting me, I would only test those identified ones every 6 months, right? Not all of the ones I am doing now? I don’t know what kind of titers they did, especially on the EBV, but I guess I’ll have to find out if they did the IgM and the IgG or just one of them. Do they automatically test both, or do you have to request both?

    I’m hoping, hoping, hoping that within 6 months, my SSDI will be decided, but I understand that’s not so likely. I think my state disability is going to run out at the beginning of November, which sucks because our insurance policy renews in December and payments start again. I guess it will be a tight however many months until SSDI is decided!

    Thank you again for your advice! This is all so overwhelming, and it’s nice to find people that have been there or are doing that. It concerns me that most doctors and so many patients are willing to accept FM or CFS as the ONLY diagnosis, when there can be multiple things going on. I think especially when the patient is not getting any better (for me its been 3 years so far, and just worse), it’s really important to start looking outside of the box and actually testing for other things that have similar symptoms. Doctors don’t know enough about these conditions to completely say that there’s nothing going on or that it even for sure is FM. It seems like many even think CFS and FM are different sides of the same coin, so I don’t think it’s unreasonable to think that other things could be going on.
  15. SkeptikSharon

    SkeptikSharon New Member

    Kathy622 – Thank you! I definitely plan to get tested for anything and everything I can convince my docs to test for! If they are not willing to test for certain things, then at some point, I may have to venture away from those covered by my insurance, but I’m really hoping not to have to do that. I’m already seeing so many docs and just the copays get expensive, along with meds when I have to take them. But I know that it can be hard to convince some docs to test for certain things.

    Gapsych – Thanks!

    EricaCFIDS – Thanks! I got it! I will be sure to let you all know how it goes! =)
  16. EricaCFIDS

    EricaCFIDS New Member

    I sent you one more. I think this is another good suggestion. I'm so glad you will be getting the help and testing you need.

    Let me know if I can help any more!

    Good luck!

    All the best,
  17. EricaCFIDS

    EricaCFIDS New Member