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#520205 - 07/14/20 12:54 PM So disheartened and at my wits end Why...
Alida1 Offline
First_Degree_AS_Kicker

Registered: 09/07/11
Posts: 166
I came to this forum about 11 years ago ( after a terrible fall), when I could not sit, stand or lay down for more than 15 minutes at a time due to extreme pain. I am HLA-B27 positive. Had extreme pain in my SI and neck. I followed Dr. Ebringer's plan and started a fasting protocol. It helped, and helps immensely as I still continue this way of eating.

I also ended up losing my sigmoid colon 2016, luckily I was able to be reconnected. I've had gut issues my entire life. Starting with dysentary at about 2.

I've been in another terrible flare since I took a tumble down a flight of stairs last September. I've seen the Rheumatologist and imagining shows zero inflammation or areas of concern. Why am I hurting...I'm so tired of this. I stretch, eat NS/LS and every day I unfurl myself from bed, if I sit at my desk, in the car, any where for to long, I'm hunched like a 90+ year old.

So, this is all in my head...thanks for letting me vent
_________________________
Where your mind goes your life follows

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#520206 - 07/14/20 09:56 PM Re: So disheartened and at my wits end Why... [Re: Alida1]
Dotyisle Offline


Registered: 03/07/02
Posts: 9513
Loc: Rosario, Argentina
Hello Alida,

Sorry to hear that you are hurting some much. Sometimes venting will help a bit in the short term.

From the fall they found no fractures that could be causing the pain?

Hopefully you can find some answers and start feeling better soon.

Take it one day at a time, that was my dad´s advice for me... he also had AS.

Best,

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#520208 - 07/15/20 01:17 AM Re: So disheartened and at my wits end Why... [Re: Alida1]
Inanna Offline
Very_Addicted_to_AS_Kickin

Registered: 11/15/01
Posts: 18084
Loc: UK
Hi Alida1,

I am sorry you are in such pain. How awful. My question is the same as Tim's? Are they sure nothing broke in the fall?

As for work/sitting, don't forget to stand up and move around a bit. Work standing, if you can, for a while, then sit down again.

You just vent. That's what this place is for.

Warm hugs,
_________________________
Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"


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#520215 - 07/16/20 09:34 PM Re: So disheartened and at my wits end Why... [Re: Alida1]
Alida1 Offline
First_Degree_AS_Kicker

Registered: 09/07/11
Posts: 166
Thanks Tim and Inanna.

All imaging has come back with zero inflammation (at the moment..yippy!) Nothing broken, xrays, MRI.

I’m lucky enough to have a desk that can be sitting or standing ..so, yes I change it up as much as I can.

It’s just been exhausting and frustrating.

I appreciate your reaching out.
_________________________
Where your mind goes your life follows

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#520225 - 07/18/20 09:21 AM Re: So disheartened and at my wits end Why... [Re: Alida1]
Dotyisle Offline


Registered: 03/07/02
Posts: 9513
Loc: Rosario, Argentina
Hello Alida,

I now work in localization (presently WFH) at a desk so involves sitting... but I drink a lot of water so going to refill often and also resulting bathroom stops. So that helps ensure I am not seated for long periods of time.

Stretching really helps me as well, try and do every day.

Best,

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#520353 - 12/19/20 03:17 PM Re: So disheartened and at my wits end Why... [Re: Alida1]
hawkman Offline
Commanding_AS_Kicker

Registered: 09/05/01
Posts: 697
Loc: New Union , Alabama
I can sympathize with you on the pain part ! I fell and broke my arm in Sept. and small leg bone also . One of the things that has helped my pain has been heat applied to pain area and time spent in a hot jacuzzi and magnesium oil applied to pain areas . I hope you get some relief soon .
_________________________
Bruce

Still kicking AS with the No Starch Diet !

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#520354 - 12/19/20 04:16 PM Re: So disheartened and at my wits end Why... [Re: hawkman]
Janclebro Offline
Active_Member

Registered: 09/26/16
Posts: 55
Loc: Cape Town, South Africa
Hi Alida, I'm sorry that you are having such a rough time. While following LSD can be life-changing, it's not always the full solution for everyone. It certainly changed my life, but I found I had to do so much more to get proper relief. I'm very sensitive to yeast for instance, so had to give up all sources of yeast and sugar. I was so stiff I could hardly walk some days, but seldom have that problem now.

Consider sugar as a possible problem, also consider yeast. Thirdly, you may have food intolerances that exacerbate your problem.

I highly recommend Rebecca Fett's book The Keystone Approach. She starts with the No/Low Starch Diet, then takes you through other factors that might be limiting your recovery. It's excellent. Good luck.
_________________________
Spondyloarthropathy with symptoms of AS, Sjögrens and fibro. Previously took Celebrex, Methotrexate, Trepiline, Prednisone which seemed to trigger a flare and my illness became much worse. Symptoms now kept mostly under control with NSD, as well as cutting sugar, dairy and yeast and food intolerances. Mostly pain free now and all symptoms massively improved.

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#520356 - 12/20/20 08:14 PM Re: So disheartened and at my wits end Why... [Re: Alida1]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 192
Loc: Canada
Hi Alida, I'm so sorry for what you're going through, it sounds awful. Your injury was just in September so I'm not surprised the damage isn't showing up yet. I had a similar experience: what led me to this site was finger joint pain that started a few months after I injured my hand. But although the pain grew debilitating over time (I couldn't use my hands at all first thing in the morning), one full year later nothing showed up on imaging or in blood tests. The rheumatologist even told me it was all in my head and suggested meditation, even though she could see how swollen my fingers were! (To be clear, they rely way too much on tools that aren't sensitive enough. It was never 'in my head')

That's when I started the diet and it worked for me really quickly. But since you're already there, I'm not sure what might help. If it were me though here are the steps I would try:

1. Try fasting to see if that helps
2. Go back to a strict elimination diet
3. Take powdered gelatin, 1TB 2x day (it's done wonders for healing my joints)
4. Do a 'weed and seed'- alternate 6-8 weeks probiotic with 10-14 days of herbal antibiotic (e.g.berberine, peppermint oil, oil of oregano, etc.)

#4 is something I still do a few times a year when I get too careless with my diet and pain creeps back. It resets everything, and really augments the effects of my diet.

All the best
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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