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#518053 - 01/12/18 03:23 AM Re: Fibromyalgia [Re: jay_bharat]
Robin_H Online   content
Second_Degree_AS_Kicker

Registered: 09/13/15
Posts: 215
Loc: Hubei, China
Hello Jane:

I have tried oregano oil. I have much stock. I am not clear as to how it effected me but I use it on occasion. It is a broad band anti-microbial: > 80% carvacrol.

I am on a strict NSD now but it isn't helping me to improve however I know that it establishes some stability. The six days of amoxicillin did harm. I do sense more microbial activity in the gut and lots of gas without having changed the diet I have had for a few years. Also neuropathy in the hands (stemming from the spine) and neuropathy in the feet and legs (from I am not certain what) has gotten worse.

Perhaps going back to an array of broad-spectrum antimicrobials will reduce symptoms of inflammation in time.

I feel the need for probiotics now that I have hit my gut flora with amoxicillin and gotten unwanted symptoms. But I feel that doing a few weeks of probiotics followed by a week of anti-microbials is too long of a gap between the two since I probably have increased unwanted microbes yet need some good reinforcements. I am considering spacing the two by hours now instead off weeks.

Interestingly, the naturopath named Eric Bakker makes a set of pills called CanXida: one has antimicrobials, a second pill is packaged with enzymes and probiotics, and a third pill that is full of vitamins and minerals. He suggests taking his antimicrobials with the probiotics!!! If he says that in his many years of working with patients that this combination works then who am I to question that with my theories!!

I am tempted to use NSAIDs to reduce inflammation and the associated damage. Being too pendantic about banning anti-inflammatories and soldiring the excessive inflammation seems to have accelerated disease progression. But then it was using them for too long, or at all, that got me in this mess so late in life. Damned if I do and damned if I don't!

The composition of oregano oil varies between brands. My pharmacist friend emphasizes that most brands try to sell their product based on maximizing what is considered the active ingredient: carvacrol. He says that we should strive to find a brand that has a better balance of carvacrol and some other compound in the oregano oil because evidence shows that there is a synergistic effect between the compounds; just like there are synergistic effects between "innocuous" microbes. But I digress.

Cheers!
Kevin
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#518054 - 01/12/18 03:44 AM Re: Fibromyalgia [Re: jay_bharat]
Robin_H Online   content
Second_Degree_AS_Kicker

Registered: 09/13/15
Posts: 215
Loc: Hubei, China
I want to add one more pet theory.

I was strong and healthy until a year after a flood in 1992 that established about 950 squre feet of mouldy basement walls. I breathed that for eleven years. During that time I had mycotoxin symptoms but did not know about the effects of mould then. Within a few years after the flood I was finally labelled with fibromyalgia after my doctor ruled out arthritis and anything else he could think of.

I feel that fibromyalga is a label that doctors use to define a syndrome of symptoms when they do not know what the cause is -- and many causes have overlapping effects. However, in some lucky cases some patients may be correctly diagnosed with a different, well understood illness and properly treated before getting that label.

I also developed cyclic spinal inflammation between the shoulder blades and sometimes it felt like a hot knife was being pressed into my spine. I postulate that it was breathing the mycotoxins and chronically activating the immune system that surrounds the lungs that caused my back pain by the lymph draining into lymph vessels in that area.

The generally innocuous mould likely colonized my gut, sinuses and lungs over those eleven years. Then ten years later, due to a number of factors (NSAID use, job stress and no sleep for a year, earlier jobs having heavy metal and toxic chemical exposure), the fungus took the opportunity to gain ground and maintain gut damage. This damage opened the door for other microbes to get closer to my immune system and even into the body to increase systemic immune disturbances. In the long term of that battle my body has gotten worn down and disease has increased. Doctors like to call this "just getting old before one's time."

I think doctors have to look at ageing differently. I think that doctors trivialize the existence of candida or other fungi and potentially pathogenic organisms in our gut and the effects that they have long-term. I might as will just drink if they have that attitude about "commensal" mirco-organisms. Similar attitudes existed around HPV until it was discovered to cause cancer.

Life is an STD!
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#518059 - 01/13/18 02:21 AM Re: Fibromyalgia [Re: Sue22]
Robin_H Online   content
Second_Degree_AS_Kicker

Registered: 09/13/15
Posts: 215
Loc: Hubei, China
Hello Sue:

It sounds like the inflammation has caused compression and damage to the nerves in your cervical spine.

Originally Posted By Sue22

...
Also, where the damage is done like my neck, that's always a problem...Humira just makes it a bit better, but my face is always somewhat numb, and I must sleep in a recliner, and haven't been able to find a new car, all due to nerves being compressed, in my neck, due to the damage, due to the spondyloarthropathy.



Have you considered chiropractic to release pressure on the nerve roots? It is amazing how many symptoms can be created by pressure on the nerve roots in the spine: angina, numb hands, visual sensitivity to light, false trigeminal neuralgia, sinus pain and mucous production,...

1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881998/
2. https://www.ncbi.nlm.nih.gov/m/pubmed/20359155/
3. http://gallatinvalleychiropractic.com/blog/CervicalSpineNerves.html

I am surprised that I am endorsing chiropractors because for the longest time I considered them to be gullible, pseudo-scientific quacks or just money grubbers -- I had to pay out of my own pocket since I had no gov or private insurance to cover them. However, I am open to their efforts with care. It is difficult to find a good one. Over the course of seventeen years I have tried four: the first one was horrible. The second one did no harm or good. The fourth and last one I saw many times had no positive effect. The one before him was the most effective: 50:50 hit or miss.

I have had occasional pains in the extremities for over twenty years. A rheumatologist would rarely consider that the greater suboccipital nerve in the neck was connected to the knee bursa. I am making that up to emphasize my point but it is true (metaphorically) and in a literal sense.

Chiropractic has worked on the irritation between my shoulder blades 50% of the time. I rarely used it. It was a localized pain. But when it worked I could relax much more for months afterward since the pressure on the spinal cord was finally released. Pressure on the spinal cord will stimulate the sympathetic nervous system and cause insomnia, hormone imbalance, phantom pains, inflammation,... I no longer think that this is pseudoscience and can imagine how it can be explained physiologically.

The first chiropractor I ever saw when I was about 25 was aggressive and gave me whiplash that now is a major problem in my neck. It's been point of obvious rapid deterioration for the past two years likely accelerated by an infection. So I am wary of chiropractors but have recently considered their value to me to get rid of the pain in my face, eye orbitals, temples,...

My internal medicine doctor is confused regarding my combination of symptoms and considered the origin of my face, sinus and skull pain to be from the trigeminal nerve. But that did not explain other pains nor are my pain patterns typical of trigeminal neuralgia. Since I often have chronic sinus complaints that seem to extend out of the sinuses we had considered that a chronic sinus infection that effected the trigeminal nerve could be the cause. Or maybe both and they feedback on each other.

Almost a year after getting sea water in my left inner ear during a scuba incident I developed inflammation at the base of the scull around C0, C1 and C2,... perhaps further down too (by Jan 2017 I finally had chronic burning and inflammation in the sacrum, but that isn't my point.) That, without the details, cascaded into full axial inflammation. Remission was obtained but the seeds for future flares had been planted. Those future flares eventually finished off the job in the cervical vertebra and symptoms of trigeminal neuralgia began.

But I'll just add, once something does damage to the vertebra that house the nerves that effect gut function then the disrupted gut function will effect our immune system and hence feed back right to the vertebra in our back. So the cycle needs to be broken at as many places as possible -- remove pressure from the nerves, heal the gut, lower inflammation, etc.

In all that I said you already seem to know that your face pain is from your neck.

A sub-point is that I could have a chronic fungus infection in the gut that aids other microbes to cause IBS which drives the immune system triggering inflammation effecting the spine which effects the gut function which aids gut microbes to cause IBS which drives the immune system triggering inflammation effecting the spine which effects the gut ...

In July I started to get a mild tingling in the left corner of my mouth. Now the left side of my jaw is almost always burning, I get burning behind my ears, an almost chronic occiptial headache with burning, sinus pain, a burning upper left eye lid, and more in my neck face and skull. I've always thought that my problem was infections; one source being my sinuses. Perhaps is was at one time but now is the result of nerve irritation.

However, before all the problems in he neck and face I did have a sinus problem and it could be a constant source of mould re-infection in the gut. I can try healing my gut all I want but it will get re-infected until I get rid of the sinus infection.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920250/

Since Sept/Oct I started to get twitching in my calf muscles, burning in my right shin, constant but ache and burning,... this is likely pressure on another set of spinal nerves.
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

Top
#518060 - 01/13/18 11:42 AM Re: Fibromyalgia [Re: Robin_H]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21326
Loc: Upstate NY
Originally Posted By Robin_H
Hello Sue:

It sounds like the inflammation has caused compression and damage to the nerves in your cervical spine.

Originally Posted By Sue22

...
Also, where the damage is done like my neck, that's always a problem...Humira just makes it a bit better, but my face is always somewhat numb, and I must sleep in a recliner, and haven't been able to find a new car, all due to nerves being compressed, in my neck, due to the damage, due to the spondyloarthropathy.



Have you considered chiropractic to release pressure on the nerve roots? It is amazing how many symptoms can be created by pressure on the nerve roots in the spine: angina, numb hands, visual sensitivity to light, false trigeminal neuralgia, sinus pain and mucous production,...




Thanks for that.

Actually, I see my chiropractor nearly weekly...for about 5 years, I was seeing him twice a week, but finally on humira, it is down to about once a week, unless I'm sick or the weather / roads are bad.

A lot of people say be very careful with chiros, some here say never to go.

My experience has been to be careful...the old fashioned "crack the back" in a jerky motion would do me a lot of harm, I know that; a very good "old fashioned one" even told me that when a doctor sent me there.

My first wanted to be aggressive with me, but I wouldn't allow it, so all they did was ultrasound, which helps me a lot, but now I have a home unit. Then that good one who told me that he'd do more harm than good for me. He sent me to one who used an activator, but I needed more than just my spine gently adjusted with an activator; I needed someone who does soft tissue work in general.

I was almost on disability, and was desperate for help, when my ribs started to subluxate and I had ribs stuck under my shoulder blade...THAT was PAINFUL!

The year prior when it happened, 2 physiatrists (doctor of physical / rehab medicine) and several PTs didn't know what was wrong and none of them could help me...it took 3 months to partially resolve and 6 months to fully resolve and then same time next year, same thing happened, and if not for my current chiro, OMG, don't know what I'd have done!

So yeh, he helps my neck, my spine, my SI joint, my ribs, my upper back...gently...he'll do manual traction on my neck when I ask him to...basically its all about gently getting things to move that get stuck, and he's very good at that....

and he also helps with other body parts when I need him to...this past week, my left ankle was stuck, and my right knee hurt when I bent down and turned to the side, so he worked on those along with my neck and SI joint. For a few months, he helped me with shin splints that had flared up, and a "hip" problem that stemmed from my last SI joint flare....took about 3 months of weekly work to settle those two problems down.

He's been a life saver, a career saver, a sanity saver.

But from my experience, not all are created equal. He's a "sports-certified" chiro. Also certified in ART. I think having a lot of tools in his toolbox is the secret for me...and knowing how gentle or aggressive he can be / needs to be with people.

Last time he worked on my neck, he used a towel instead of his hands for the manual traction, it was awesome!

Like you said, just relieving the pressure off those nerves.

That's also why I'm being more vigilant with my yoga.

PS as for the gut...I think all my problems started in the gut...I have had chronic constipation since before I stated school...had severe gastritis and wasn't digesting my food for a year when I was 30-31....now its usually constipation til I take humira, a few good days, starts going downhill, constipated again, take more humira, a few good days, etc....its all very cyclic with the humira...and when I'm on methylpred, my stomach and bowels are excellent...

I do my best to deal with my stomach and intestines through:

humira

diet (for me that's no cow dairy, limited goat and sheep dairy, limited eggs, limited S cerevisiae yeast)

probiotics each morning

Probiotic foods: sauerkraut and coconut milk yogurt

Prebiotic foods

ginger and mint (both seem anti-inflammatory for my stomach (and maybe my gut)

plan to try other things along the way

but yeh, for me, it all starts in the gut....

I had inflammation and "crohns-like" ulcers in my ileum when they checked with a colonoscopy. If they had checked during a flare, I'm gonna guess that it probably would have been even worse...I wasn't flaring at the time....who knows, maybe if they had checked back in 1993 when my gut was flared badly for a whole year, maybe I would have been dx'ed with Crohn's, I don't know?

For me, it's definitely all connected.


Edited by Sue22 (01/13/18 11:57 AM)
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#518067 - 01/13/18 11:15 PM Re: Fibromyalgia [Re: Janclebro]
jay_bharat Offline
Decorated_AS_Kicker

Registered: 12/08/08
Posts: 711
Loc: INDIA, Tamil Nadu
Hi Jane,

Doctor has not checked for tender points. He has given a questionnaire regarding pain related issues.

Quote:
Maybe you're giving the pathogens less to feed on at home?


What is your idea?.

Jay

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#518068 - 01/13/18 11:21 PM Re: Fibromyalgia [Re: Robin_H]
jay_bharat Offline
Decorated_AS_Kicker

Registered: 12/08/08
Posts: 711
Loc: INDIA, Tamil Nadu
Hi Robin,

Fibro is diagnosed when nothing could be established through test results and the existence of some symptoms. I strongly agree.

Jay

Top
#518104 - 01/22/18 08:23 AM Re: Fibromyalgia [Re: jay_bharat]
jay_bharat Offline
Decorated_AS_Kicker

Registered: 12/08/08
Posts: 711
Loc: INDIA, Tamil Nadu
Hi,

Anyone tried Lyrica. How effective it was and is there any side effect.

Jay

Top
#518106 - 01/23/18 05:26 AM Re: Fibromyalgia [Re: jay_bharat]
Frederick Offline
Second_Degree_AS_Kicker

Registered: 03/28/06
Posts: 241
Lyrica also known as Pregabalin is a medication used to treat epilepsy, neuropathic pain, fibromyalgia, and depression.

I was on it for the pain of nerve damage (neuropathy) caused by A.S. Such pain is notoriously difficult to treat successfully and some patients never have complete relief of their pain. In my case it was of little use and I was soon found some other similar medication that is also of very limited use.

As for the side effects of Lyrica there is a long line listed and you had better check it out on the Internet before you start on what is a very potent drug that must only be taken with great care.

Top
#518108 - 01/23/18 07:37 AM Re: Fibromyalgia [Re: Frederick]
Robin_H Online   content
Second_Degree_AS_Kicker

Registered: 09/13/15
Posts: 215
Loc: Hubei, China
Hello Frederick:

Is the nerve damage that AS does only from compression from bone or other inflammation on nerves, or does AS also directly attack the nerves?

I have started developing neurological tingling, stinging and itching in my legs, arms, face and neck; not all at once, they accumulated in the past five months.

May the Force be with you!
Kevin
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

Top
#518112 - 01/23/18 10:19 PM Re: Fibromyalgia [Re: Frederick]
jay_bharat Offline
Decorated_AS_Kicker

Registered: 12/08/08
Posts: 711
Loc: INDIA, Tamil Nadu
Thanks.

I did check in web. I wanted to have personal experience of others with this drug. It appears many people experienced side effects.

Jay

Top
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