Ideas, please!!

Discussion in 'Fibromyalgia Main Forum' started by HeavenlyRN, Jun 8, 2010.

  1. HeavenlyRN

    HeavenlyRN New Member

    Since Misfit had such good luck getting a diagnosis from her doc after receiving help from so many posters here, I thought I might mention some of my symptoms and see if anyone has any ideas. Maybe “all” I have is FM. If that’s the case, I guess I should be thankful, based on what some others are dealing with. And no, I’m not asking for a diagnosis, just some ideas.

    I was diagnosed with FM in 2000, 8 months after surgery to remove my gallbladder. It seems like I just never recovered from that. Sure, I have my good days and my bad days, but mostly I have felt yucky!

    Anyway, here are my “issues.”
    - generalized pain
    - severe pain in lower back, hips and both feet
    - exhaustion, exhaustion, exhaustion
    - heart palpitations (I have premature ventricular contractions but this is different. When I’m laying in bed on my side, I can feel my heart pounding on the mattress)
    - constantly thirsty (no, I don’t have diabetes)
    - restless leg syndrome
    - IBS
    - Kidney stones, as well as a cyst on my kidney that I just had removed – labs have been within normal limits, for the most part)
    - New pain (3-4 weeks) on the left side of my neck
    - Some edema in both feet which does not seem much better after a full night’s sleep
    - Brain fog - trouble word-finding, difficulty learning new things
    - Degenerative arthritis in neck, spine, hips and hands
    - Recent abnormal liver function tests (I’m embarrassed to say that I don’t remember the results but will be seeing my rheumy again on 2 weeks and will be asking for copies of my bloodwork and more of an explanation)
    - Xrays from 4 years ago supposedly showed Ankylosing Spondylitis
    - Light sensitivity
    - Depression
    - Occasional dizziness, lightheadedness

    OK, I’m sure I’ve missed something but I don’t want to bore anyone.

    Thanks in advance.
  2. victoria

    victoria New Member

    IMHO we should all be screened for at least some of the most commonly found stealth pathogens like C. Pneumonia, Mycoplasma, and yes, Lyme. (You of course remember that syphilis was called the great imitator? Lyme is also a spirochete, and it's genome is 2X as complicated. And these other pathogens have a 'laundry list' of symptoms as well.)

    If you were found to have any of these and treated, it would take away many at the very least of your symptoms.

    XMRV testing will be interesting, ultimately. Many doctors well known in the CF/FM/ME community are thinking that it will be the key to treating whatever all we have hanging on in us-- that it will be at the basis of why some who, even tho they know they have a certain pathogen and are treated for it, cannot get better.



  3. HeavenlyRN

    HeavenlyRN New Member

    ....of those of you "in the know." I had C-diff in February, presumably caused by the antibiotics I received when I was hospitalized for a severe kidney infection.

    I started having the diarrhea on day 3 (of 4) of the hospitalization, more than 24 hours after the antibx. had been stopped.

    Any ideas about the c-diff? One MD told us that the test results were questionable. And, indeed, the diarrhea only lasted about 36 hours and it never came back. I was on Flagyl for about 10 days.
  4. Nanie46

    Nanie46 Moderator

    Hi,

    I agree with Victoria that you must consider Lyme(a complex bacterial infection..Borrelia burgdorferi) and some other common infections. With Lyme you must also consider Bartonella, Babesia and Ehrlichia to name a few.

    Here is some info to read:

    first, a very easy to read booklet answering all the basic questions. Also has a great symptom list...

    http://www.lymepa.org/Basics2007v1.2Rev.pdf



    This is an excellent paper written by a lyme expert. Symptom list p 9-11 and coinfection info p 22-27...

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    The organization that Lyme literate MD's belong to. Explains the basics of lyme and has alot of other great info too...

    http://www.ilads.org/lyme_disease/about_lyme.html


  5. Misfit101

    Misfit101 New Member

    I was going to suggest the same thing. Do all ppl with fm/cfs have lyme? Certainly not. But id just suggest you read read read. Theres a ton of info. Wow. I had to stop for a minute...dh had a tick on him. It bit him. Now hes freaking out. Guess whos going to be bomblasting the yard this wknd? Jan...i wish i had an answer for you. All i know is that there a lot of nuances to lyme. I hope you find the answers you seek!
  6. Janalynn

    Janalynn New Member

    Hi Jan!

    I certainly wouldn't pretend to say for sure, but it sounds like Fibro to me. I have most of the same symptoms.
    Some of the things you're dealing with are probably unrelated and you just have some different things going on.

    Many people do have heart palpitations. I had them so bad years ago that I wore a Halter (Holter?) Monitor that of course showed nothing. I felt like my heart was stopping, then at other times would beat twice as fast.

    Are you on any meds that might cause that?

    Thirst - by the way, you wouldn't believe how thirsty I get. So much so that if my husband is by the fridge I'm almost begging "Quick, I need a drink". I get 'gaggy' if I don't drink right away.
    Then I chug. I drink several glasses of water or iced tea throughout the day. Several.

    I also retain fluid terribly. I have to watch everything I eat. Carbs are a biggie for me. Obviously sodium.

    IBS goes with Fibro in many people. I have the oh so lovely condition as well!

    Janalynn
  7. amomwithsickkids

    amomwithsickkids New Member

    I think it's a good idea to explore any of the infections mentioned by others. A lot of your symptoms could be from tickborne disease, but it is always good to get tested for other things too. Since you have a rheumy, I am assuming you had tests for anti ds-dna, and complement levels among others.

    The dizziness could be POTS. Do you have low BP?

    As an RN, I am sure you know you should get an echocardiogram for the chest pain.

    Be very careful about C Diff. It can be deadly (I'm sure you know this already!) I read that oil of oregano and olive leaf oil can be helpful, but the best thing to do is try to avoid antibiotics if possible. You should look into C. Boulardi probiotics, and other probiotics as well to make sure you keep your gut healthy. It is very important to take probiotics while on antibiotics, and even more so if you've had C Diff.

    Hope this helps a bit, and hope you find answers. Good luck!
  8. HeavenlyRN

    HeavenlyRN New Member

    Geez Louise......sounds like me! Of course, I try not to jump to conclusions about illnesses 'cause then I'll think I have everything!

    However, this is certainly worth discussing with my MD. I'll do a little research of my own before I see him.

    Thanks for passing that on.

    And thanks to everyone else for your responses. All food for thought.

    Jan
  9. HeavenlyRN

    HeavenlyRN New Member

    Geez Louise......sounds like me! Of course, I try not to jump to conclusions about illnesses 'cause then I'll think I have everything!

    However, this is certainly worth discussing with my MD. I'll do a little research of my own before I see him.

    Thanks for passing that on. And if you're right.....I'll send you a dozen roses!!

    Jan

    And thanks to everyone else for your responses. All food for thought.

    Jan