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Fibromyalgia Community
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1464004 tn?1384139333

New dx

Hi. I usually post in the arrhythmia forum because I have several fun arrhythmias. I have recently been diagnosed with Fibro and I'm trying to learn as much as I can about the syndrome. This is a big step for me.  Being in health care for more than three decades, most of them in  neurology,I was one of those who didn't believe in fibromyalgia. I do now. I also have a long list of associated problems including  IBS, rheumatoid arthritis, sleep disorders and on and on.
I wanted some feedback on how to handle the weather change, it's really kicking my butt.  Constant pain, fatigue the whole ball of wax. I'm limited in the types of meds I can take because of the laundry list of stuff I'm on now.
oh and I'm also post thyroid ca with a total thyroidectomy, which is probably why it took so long for the myriad of docs I see you come up with Fibro. Any advice would be appreciated and sorry I was so long winded.
10 Responses
Avatar universal
    I am so sorry that you have Fibro.  It certainly isn't any fun.  
    I personally discovered that Essiac capsules keep my Fibro in check.  I have some bad days, but for the most part I am not in horrible pain.   I just get a little uncomfortable when the weather changes.   My shoulders ache and I wish I could pop my neck - but other than that for the most part I feel okay.
     I also take a lot of other supplements that help with the Fibromyalgia inflammation.  I can't take NSAIDs any more as they tear up my stomach.  I take Milk Thistle, Zinc, MSM and coconut oil.  Each of these help in their own way and together are a powerful pain/inflammation reliever.

     Hope this information is helpful to you.  Wishing you the best
1530171 tn?1448133193
Hi Elli126 and welcome to the Fibromyalgia Community.

Unfortunately conventional medicine cannot address fibromyalgia
satisfactorily. And having no known cause-the new hype about
excess palm sensory innervation being the cause of fibro, to my humble opinion,is just a sales pitch for SNRI drugs, according to a recent study (sponsored and paid by the 2 largest SNRI drug manufacturers)- this leaves the patients with very few viable options for treatment.

There are a few important connections in the body that must not be ignored!
Our body functions in synergy with all its systems and organs interacting
in an amazing co-ordinated fashion, so when we isolate a specific part of the body for diagnosis and treatment purposes, without paying attention to its interconnection to the rest of the body, we are doing a huge disservice to ourselves!

Doctors will not take the time to examine all this, as it is not established procedure. It takes too long as doctors schedules are very tight, it crosses various medical specialties so it requires many medical specialists to converge (rheumatology, neurology, psychology, gastroenterology,
endocrinology), something that simply does not happen in the real world!

When the weather changes for example, the barometric pressure changes
and our production of cortisol is lower, affecting many people who have presence of  myofascial trigger points, where there's blood flow constriction.
many fibro sufferers have raynaud's disease and when exposed to colder temperature suffer from  painful extremities.
Lower cortisol and adrenal imbalance is common with people who experience chronic stress-often hidden stress.
Adrenal imbalance leads to hypothyroid function and multiple other symptoms, hypothyroid function affects the energy of the cells in organs and systems, so the cardiovascular system, the heart, the digestive/GI system, the brain, the nervous system, all are vulnerable to such imbalances.
Past traumatic experiences, our less than desirable processing of many life's events and situations, blocked emotions, contribute to chronic stress
with potentially dangerous consequences.

If interested, post more details regarding your medical history, including
your thyroidectomy-when/type/meds-, past traumas, medications currently on, diet and food habits, fitness and physical activity, and anything else
that you deem important.

Have you ever had an "Adrenal Stress Profile"?
How often are you tested for thyroid function?
Have you ever been tested for Candida/Leaky Gut Syndrome?
Have you ever had a Neurotransmitter Assessment?
Have you ever had a blood volume test?
Have you ever had a had a 24 or 48 hour Holter monitor ECG test?
Have nutritional/mineral deficiencies (including tissue mineral deficiencies)
been ruled out?
Have you ever been tested for mycoplasma/lymes or co-infections?
If yes, by what type of doctor and which lab was used?
Have you ever had a heavy metals detoxification?
Any gum or teeth issues, silver(mercury) fillings, any root canals or extractions?

Sorry for all the questions, but if you answer them, I might be able to
help you better.

Best wishes.
Niko


1464004 tn?1384139333
Thanx so much for your input! To try to answer some of your questions, I'm about six years post thyroidectomy.I take .125m of Synthroid qd. I get my levels checked about 3 times per year. I have had complete cardiac work ups several times including 30 day monitor. I have PVCs/PACs,bigeminy, PSVT etc.  for that I take Metoprolol 25mg BID. I don't take many ( if any) pain control meds,NSAIDS  are out due to the various gastric issues. I have had Western Blot done for Lyme which was negative.  None of the other screenings you mentioned, that I can remember.  Some other info: I am am insomniac and have been most of my life.I average four hours a nite.I have recently( last 6 months) changed my dietto whole foods and cut out red meat, processed sugars, flours etc. unfortunately my physical activity leaves much to be desired, I am in pain just doing the day to day, so I wimp out on exercising. Hope this answers at least some of your questions, and please excuse the typos, I'm on my phone in the dark at 5am.
1530171 tn?1448133193
Hi Elli.

You probably have numerous deficiencies. I'm so surprised, no testing! with gastric issues you probably have significant absorption and assimilation impairment.
Western blot is not enough to rule out Lymes.
You need an LLMD and IGeneX Labs  for a  Lymes dx (complete
Borrelia & co-infections -including MMycoplasma- panel).

What testing for thyroid? TSH, T3,T4 serum levels?

The 30 day monitor, did they check for abnormal T wave patterns -more like inversions instead of peaks?

Have you ever done any allergy testing and or any elimination diet to verify offensive/reactive foods?
Stress and hormonal deficiencies are very likely.
I will send you a questionnaire in my next post. Your profile screams of certain unaddressed issues.

Got to get ready for work.
later! And don't worry about typos! lol! The least of your problems.

Niko
1464004 tn?1384139333
The event monitor was read thoroughly. I work for a cardiologist among other ologists at the moment.  My Endo also checks all thyroid levels and my rheumatologist keeps up with my sed
rate. I did have an upper and lower GI  series which is how they found the ulcers  IBS and diverticulitis. I look forward to your questionnaire.  Elli
1464004 tn?1384139333
In fact if I could ask a great favor,I would appreciate if you would email me the questionnaire, if you're comfortable with that. You seem to be very well informed and I'm grateful for the help.  I'm at witchelli@yahoo
1530171 tn?1448133193
Hi Elli.
1. The event monitor for T wave abnormalities:Most Cardiologists don't look for this (unless for specific reasons, so it may be easily missed) and has nothing to do with voltage and with normal voltage ranges they miss the abnormal pattern which would indicate that the blood in the left ventricle is not being pumped properly through the aorta for distribution around the body.
2. The 'established' thyroid tests in Endocrinology for thyroid function are
TSH, T3 and T4. This indicates only serum levels, nothing to do with
with cellular thyroid function where the thyroid is needed for energy production.( Prolonged Low cellular energy = onset of serious disease )
Free T3 , Free T4 and Reverse T3 are the levels to be checked in Thyroid conditions for accurately determining cellular thyroid function.
Please visit the Thyroid Community, should you need some more specific info on thyroid tests regarding Thyroidectomy patients. There are some very 'seasoned" members there.
3.  You may want to ask a cardiologist in your dept. for a blood volume test.
Average red cell mass to body weight is 30ml/Kg.
(normal range 25ml-35ml/Kg)
If the test shows over 10% less than the lower range it is indicative of an
underlying pathogenic infection.
I'm sure if your blood volume was down for example by 15% or more because let's say an injury from an accident, then this would be taken very seriously,right?
4. The questionnaire should be in your maibox in the next few minutes.
let me know your score.
5. Your Magnesium-not serum mg levels- may be deficient among other nutrients and minerals.
Look into Magnesium Oil transdermal delivery if that is the case (confirm with mineral analysis-hair analysis is good to indicate your tissue mineral levels )

Best wishes.
Niko


1464004 tn?1384139333
Thanx for your quick response I will talk this over with my cardiologist, Endo, rheumatologist and infectious disease doc.I do belong to the thyroid community along with the heart rhythm community. I had a total thyroidectomy so yes they may have additional advice.I will get back to you with the questionnaire results.  Thanx again.
1530171 tn?1448133193
Just sent you some suggestions.

One more thing. Most infectious disease specialists adhere tightly to IDSA
protocol. Good chance any mycolplasma/lymes and co-infections investigation might not be advantageous to you. Too many false negatives.
LLMDs and IGenex Labs are the golden standard to my opinion.

Best regards,
Niko
1464004 tn?1384139333
Thanx again!
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