Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fibromyalgia

[quote=jay_bharat.

I still have no answer, why anti TNF gave relief in 2007.

[/quote]

I think it was about 2007 or therabout that I first started on Anti-TNF(Enbrel). The relief it gave me was immediate and complete. So why on Earth did it's positive effects were off gradually but completely by 2016?

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Hi Frederick,

I got confused from your post, since I also started enbrel in 2007.

So you started with enbrel in 2007 and the effect went off in 2016?. Did you try another biological afterwards. Sometimes another one will work. Enbrel did not give relief after 3 months for me in 2007 and I started remicade in 2008, which gave considerable relief and not effective from mid 2016.

Jay

My intention was to get the rheumatologist to prescribe me a different Anti-TNF to replace the Enbrel. I was admitted to the rheumatology ward for assessment and tests along with intensive physiotherapy and hydrotherapy.

However as I had an infected abscess close to my anus it was decided to deal with that first. So I was referred to another doctor who would usually deal with such things. He however persuaded me that surgery of that sort was unnecessary at this time. He does however want a biopsy done of the abses and I expect this to be done any day soon now the Christmas holiday is coming to an end.

It so happens that my condition has rather improved and I am doing much better than I expected without the Enbrel. So I now await a routine rheumatology outpatient appointment probably within the next month or so. I will see how i am by then and talk about it with the rheumatologist.

I rather think I may benefit from bing on less medication even if only as a trial. With the usual A.S. medications such as NSAIDs. and strong pain killers plus other drugs to treat my nerve pain (neuropathy) it is a lot of medication for anyone to be on long term.

Is that mean enbrel is working?. Or what made a sudden slump?.

Jay

Hi Jay, I too have fibromyalgia as part of my diagnosis. I found that the NSD was not the whole story for me, though it helped. I get a lot of muscular pain accompanied by fatigue and exhaustion, and severe insomnia. NSD is effective in starving bacteria in the bowel, but more than this might be required if SIBO or candida is a factor, which I believe is often the case with fibromyalgia. I've eventually realised I have to cut out sugar and yeast as well, resulting in an extremely restrictive but most rewarding diet. I also had a blood test to detect food sensitivities, and this provided another piece of the puzzle in resolving my pain problems. I supplement with mega-doses of probiotics and take antimicrobials. I still have occasional dips but have made phenomenal progress. Hope this helps and good luck Jay - Jane

Hello Jane:

I was also "labeled" with firbromyaliga about 25 years ago. I hardly think that it is a "diagnosis" but it is real and not a psychological illness.

I strongly feel that most chronic illness are caused by persistent stealth infections and can be halted and even reversed depending on how much damage has occurred if only the offending invaders can be removed. NDS essentially just lowers microbial activity.

Are you aware of and what do you think of Garth L. Nicolson's insistence that chronic illness syndromes, and many other disease, are caused by multi-species microbial infections? He's no quack! https://en.wikipedia.org/wiki/Garth_L._Nicolson

I strongly feel that the insomnia is cause by hormonal disruption due to the infections; not just neurotransmitters as doctors simply think and tend to only treat. Same for the pain (infections in all soft tissues: nerves, muscle, collagen, etc), fatigue due to us using so much energy to combat and repair the damage the microbes cause.

Dr Nicolson says that the mitochondria have excessive oxidative damage from mycoplama bacteria in FM and CFS patients and that consuming healthy fats help repair mitochondria and our cells. This is part of the same treatment approach that doctors that treat mould illness use. Also, long ago researchers in fibromyalgia and other chronic illness syndromes concluded that the mitochondria are not functioning correctly.

May I know what antimicrobials you use?

Hi Janclebro,

Thank you for the details.

I did strict NSD for a year without any results. I did DNA food intolerance test also. I did blood culture test which was normal. I have not done test for SIBO. Presently I underwent ayurvedic massage and also taking LYRICA. Observing the results.

Jay

"they" tried to stick me with that label, but no, I don't have it...thankfully.

I did consider it seriously, but was able to rule it out, because I really didn't have any of the symptoms beyond chronic pain and tenderness at the joints, which for me is enthesitis.

on the other hand:

I have GI inflammation, joint inflammation, mild psoriasis, dry eyes, erythema nodosum (during bad flares in the past) and I flare...all consistent with a spondyloarthropathy, but not with fibro.

And since methylpred, Aleve, and Humira work, that pretty much confirms an inflammatory arthritis.

But Humira isn't perfect, sometimes it lasts about 1.5 weeks, sometimes 1 week, sometimes only a day or two (that is rare)...I have it prescribed for every 7 days and typically average about every 10 days, but sometimes I do take it on day 7 or 8. Yes, the biologic works for me, but it isn't perfect, but a lot better than without it.

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.

Hi Sue,

In my case also, though pain doctor mentioned it is not fibro, he has given medicine for fibro. All the parameters are normal and MRI is not showing any sacroilitis. Hence probably, he may be suspecting fibro. I have to review after 10 days.

Jay