Confused is it FM or just Vit D deficiency?

Discussion in 'Fibromyalgia Main Forum' started by cristi-p, Dec 7, 2007.

  1. cristi-p

    cristi-p New Member

    Hello - I've never posted on a board before but have been reading a lot of posts here. To try and make a long story short because I don't have the energy to get into all of it - I'm looking for opinions here. I'm 38 y.o. suffering from intermittent pain mostly hands and arms, neck and shoulders and continual extreme fatigue and fuzzy head for years and years along with a ton of other complaints. Have been seeing dr.'s for years for all the various complaints. even recently had an MRI because I swore I might have MS. Dr. didn't think so but had me take the test just to rule it out. Test was negative. Follow up appt. brought up FM - dr. said "I think you do have this" but it's been awhile since we've done your labs - I had a dystal gastric bypass in 1996 so frequent labs are the norm - all the labwork came back good until the Vit D. Level is only 10 - it had been low before too but the dr. tested the wrong vit d on follow up so we thought the level had gone up a lot so I stopped taking it - big mistake!

    Now Dr. is saying via e-mail that she doesn't want to confirm FM until I've taken 50,000 iu once a week of vit D for 6 months! I was so relieved to have a dx after about 10 years of swearing I'm a hypochondriac now I'm frustrated and ready to scream and cry again at the thought of it being back to being all in my head.

    Sorry for the huge post - kind of got on a role - my question to anyone is this: Could it still be FM with the addition of Vit D deficiency or is it possible most is in my head and some symptoms are vit d deficiency?

    I know forming total opinion is hard without knowing all my symptoms but any thoughts are appreciated.

  2. cristi-p

    cristi-p New Member

    Thanks Banya - I guess i didn't speak quite right - I would be ecstatic if it turns out all my ailments are just vit d deficiency. I did take 50,000 iu 1xweek for over 3 months awhile ago and didn't feel any better. I don't know what my levels were as that's when the dr. ordered the wrong vit d test so we thought it was up but if the vit d was working I would think i would have started to feel a little better in that time. That's where my frustration comes in - I guess I'm just impatient for an "official" dx or definitely ruling it out. I'm a terrible wait and see person.

    thanks for the encouragement - i appreciate it.
  3. marti_zavala

    marti_zavala Member

    There is so much confusion. Here are my thoughts that I am now copying into one of these messages.

    He is a researcher in this field and he has had some good posts on this topic.

    ME/CFIDS/FMS is a syndrome when the body has triggered into a dysfunctional mode - regardless of the trigger.

    The trigger could be Lyme, EBV, CMV, ciguatera isotope, mycoplasma, chalmydia pneu, mold.

    If you catch it early, BEFORE you have triggered over, then you could take antivirals or antibiotics, etc and get PAST the infection. Then you are cured of that infection. If this happens, then it never was ME/CFIDS/FMS, it was CMV or Lyme or whatever the infection was. This happens everyday to lots of people.

    If you have triggered over and you are not well even though you have taken all the medication that is prescribed for the infection, then the condition is called ME/CFS/FMS with active co-infections (whether the co-infections were primary or secondary).

    Once you have triggered over, you immune system is not functioning, so you catch everything under the sun. Where it was first just Viral, now you could have myco, chalmydia pneu., etc. as secondary co-infections. It really doesn't matter whether they are primary or secondary, they are huge issues as is the now dysfunctional immune system, thyroid, adreanal, detoxification system, Kreb's cycle, etc. This doesn't mean that you don't keep looking for all the possible co-infections. And it doesn't mean that if you don't have Lyme today, you may not have it next year depending on your exposures to large groups of people. We have to be very active advocates for our health.

    Basically, if supplementing with Vit D helps you (like all of your symptoms are gone) then you didn't have FMS. You have Vit D deficiency (it does take a long time to correct deficiencies).

    But, Fibro is not a Vit D deficiency nor is it caused by Vit D deficiency. Fibro can CAUSE the Vit D deficiency and all the other things too, like magnesium, potassium, glutathione. The triggered over problem is that it causes havoc in ALL of these vitamins, minerals and neurotransmitters. That is normal for ME/CFIDS/FMS.

    Hope this helps.
  4. victoria

    victoria New Member

    you wrote:

    And it doesn't mean that if you don't have Lyme today, you may not have it next year depending on your exposures to large groups of people.

    Lyme is caught from ticks, tho it's theorized it can be transmitted via mosquitoes, and also possibly transmitted via saliva or 'bodily fluids'........... so not sure why you wrote that?