Doctor suspects Fibro/cfs but i suspect there is more going on. Anyone had a similar experience?

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HI all, 

I would like to share my story in hopes someone here may be able to give me some guidance, or have had a similar experience. 

Chronic constipation starting in October 2013 (bowel movements have not been the same since)

Root canal in November

Pregnancy in December( Started to feel spaced out, sort of like a drunk feeling/sensitivity to artificial lighting)

Miscarried after only 2 weeks, and felt ok for 3 weeks, and then randomly one day the spaced out/drunk feeling/artificial lighting sensitivity came back and has been constant since January (8 months)

I saw a gastro in February who found yeast overgrowth in my stool. He gave me nystatin, and my symptoms never changed. Started researching yeast, and was certain it was causing my issues. I went on a strict diet, and found a doctor who put me on nystatin/diflucan for a month, and i had no relief in symptoms.

Things i have tested for:

Thyroid-Fine

Diabetes-Negative (Although blood sugar slightly out of range)

General blood testing- Ok (neutrophils that fight bacteria 2 points out of range at last blood test), overall white blood count within range

CT head scan-Normal

Food allergy testing shows no allergies

Doctor has tried (Metronidazole)Makes symptoms 10x worse

Nystatin and diflucan make symptoms feel 10x worse

GP a while ago said i had a sinus infection. I had some post nasal drip and my nose runs a bit), so she gave me ceftin- This also made my symptoms feel 10x worse.

Western Blot for lyme-Negative

Symptoms

Constant drunk/high feeling

Lack of focus/ Poor memory

Loss of libido

Bouts of fatigue

Light sensitivity (Not so bad outside in natural light, much worse with indoor lighting) It feels like when you first wake up and turn a lamp on, but my eyes never adjust to the light, and it is constant.

Sound sensitivity

Head pressure around temples and eyes pressure sometimes

Stabbing sensations sometimes at temples

Undigested food in stools

Hard pellet stools/ mucus in stools

Carbs/Sugar/Caffeine make drunk feeling worse

Random itching over skin but with no rash

Heavy feeling eyes/Sometimes feel very sleepy after food

Feel at best first thing in the morning

Sneezing/runny nose

Post nasal drip (constant feeling of build up in throat)

Sore tip of tongue, sometimes middle/back area of tongue slightly white coated

Itchy anus/itching inside ears/nose

Chronic vaginal yeast infections/vaginal itching

Acid Reflux

Heartburn

Cold hands and feet sometimes

Tingling in hands and feet

Stabbing sensations over body

Recently chronic sore throat- Hurts to swallow/Swollen lymph nodes in neck

Recently doctor told me i have a heart murmur

Had a food sensitivity test that showed no food sensitivities, but a high IgE

Random body twitching all over. (in eyes, stomach, back, legs, and feet)

Urgency/frequency of urination- Saw urologist who saw no infection present, and did a cystoscopy which showed no issues with the bladder. Urologist suspects possible chronic cystitis

Stiff feeling hands

Back pain middle/lower area- stabbing sensations sometimes

Nausea sometimes

Tummy pain/bloating sometimes

Chest pain sometimes

Extremely achy neck most of the time

Motion sickness I never had before this started

Random vertigo, especially when tilting head

Positive test for Epstein Barr Virus

I want to have hope, but I am losing it rapidly. They did an ultrasound of my abdomen and found I have gallstones. The doctor called me and also said I have enlarged liver which really scared me, because I know enlarged liver can cause some threatening complications. I am only 25, and I feel helpless.

These past few weeks i have also had this weird sensation in my legs which is hard to explain. It is in the calf muscles. Stabbing sensations, pain, tingling, and sometimes it even feels like my legs are heavy and shaky to walk on. 

I saw my Dr who told me: ANA and RA tests were negative, my cd57 (measuring immune health was 64), she said this is pretty low seems most healthy immune systems are 180+, and my ATP(energy to cells was 19).

My doctor also did a neuropathy test due to the tingling etc and said that my numbers are in the 80's, but should be in the 100's, so i have neuropathy, but we don't really know why yet. She gave me ATP fuel which has helped significantly with the weird sensations, but i still get some tingling/weird vibrations in my feet. I am a bit upset that she has not done more tests as it seems my immune health is very poor. She suspects fibro/cfs but i believe there is more to this. I know this is a lot to take in, but has anyone else had a similar experience?

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9 Replies

  • Posted

    A lot to address here....I'll zero in on a few of my comments.

    Constipation could certainly be helped with magnesium dosing, I take 1000-1500mg per day split in 3 doses per day. Keeps me nice and regular and helps with a lot of other body issues....Many are magnesium deficient.

    Many many out there walk around with Epstein Barr Virus. I was able to get my numbers down over many years but forget just how.

    Even though you say your thyroid is FINE, they told me that for 10 long miserable years....then finally my osteopath called in Armour on the phone, no labs nadda and in 4 days the 10 yrs of depression lifted..... Having cold hands/feet at times is a symptom of hypoT....

    Acid Reflux could be reduced or helped a lot with DGL which I take as a stomach protector for taking otc pain meds.

    Then, I can suggest Grape Seed Extract, I've been taking it 19 yrs...and it's been a salvation. My allergy/sinus issues are history, no vertigo ever....basically what it does is work on our total circulatory system....keeps blood clean and flowing.

    Now, I'm no doc and 3 times your age but this is what I can offer from my own life experiences with alternative medicines....

    You have a LONG LIST of issues but starting with a couple supplements could help for starters......again do your research...I've done mine for 25 yrs....

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    • Posted

      Thank you! What do you know for certain you have as a diagnosis? I think i may need to see a thyroid specialist to rule out any thyroid problems
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    • Posted

      I've never been certain on the FM as there is such a CLOSE connection with a sluggish thyroid and the FM dx. Chronic Fatigue is a whole other mess and very very difficult for most....

      If you can get to an integrative MD or Naturopath, they are best bets, the conventional MD's....leave me cold.

      I KNOW I deal with a bodywide arthritis mess and believe I deal with milder FM.....but the FM didn't hit me until 61....OA started in my body at 18 and I'm 76.

      So it's all a puzzle for so many with a lot of issues....what started it all....could it have been the root canal....I do not have answers.....

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  • Posted

    PS: Many of your issues could be thyroid related, there are 66 some symptoms of low thyroid and SO MANY docs don't get it.....but you are young and maybe not the case, but I've been on a couple thyroid support groups and many young people have thyroid issues.....so make absolutely CERTAIN on the thyroid dx.

    I cannot speak on pharma drugs as I don't use them but a couple. I avoid them and use all supplements.

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  • Posted

    They should really get to the bottom of this. It sounds dreadfull. I have slow transit consdtipation. I take Movicol for this otherwise I would get a blockage. i am also on the fodmap diet, which also helps. Just google fodmap.

    Have you been tested for diabetis?

    Alison

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  • Posted

    Hi , alot of your symptoms don't directly link to Fibro/CFS.  Looking at that list I'm a little surprised it's been diagnosed.  If you have it I would say you have something else as well.  Bits of food not digested properly I don't thing is a Fibro/CFS for example.

    You have alot going on and it really does need specialists to guide you.  Gallstones out will definately help i should think. Neurologist for the motion sickness/vertigo.  Good luck

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  • Posted

    Hi you certainly have a lot to contend with.

    The only thing I can throw into the mix is B12, I know when I am low it makes me feel drunk.

     

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  • Posted

    you need to go back to the beginning....when things started to go downhill...

    tell me more about your root canal....describe which teeth are problematic...your overall dental health....this will be a big clue into clarifying whats causing your many symptoms...they are all connected....forget about fibro/cfs...they are just names of syndromes of unknown origin invented by docs

    thanks

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  • Posted

    Hi I have cfs I've had it for 27 years ... Now I have fibro for about 7 years now... All my symptoms are what you described... At age 22 I had finally found a dr to help me.. I had to treat the over growth of yeast in my system... Need to take vitamins and had to follow a strict diet that was hard but well worth it... Vitamins to take most important d-ribos( this alone helped) need to take 2-5 caps ails 3x aday start off with 2in the am n 2more in afternoon it gives u energy so don't take late work ur way up to the full dose... Vitamin b12, q10 , evening prime roses oil ... Diet avoid all foods that contain yeast preservatives starch pickled foods fruit and dairy... I thought when dr told me this what the hell can I eat .. I ate eggs salads with only oil n lemon just n garlic ( no vinegarfalls under pickled foods) steamed veggies with oil n garlic no string beans or beans it falls under starchy food starch turns to sugar in body no breads ... When u start the diet at first u feel good then as all the toxins dye off in your body u will feel worse for awhile cause when the toxins dye off the toxins r stronger but you will feel so much better u can drink coffee green tea or water that's it ...

    Remember no yeast, no starchy foods, no sugar no dairy ( butter is allowed) no preservatives,no pickled foods like mustard vinegar no fruits because of the sugar... U can use any kind of herbs to season your foods.... It's hard to eat that way but u get use to it in a week to two weeks.... I hope this helps you it has helped me for years ...

    You can gradually add fruits n carrots in ur diet after a few months

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