Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Totally Pain Free??

Dear all,

I want to ask for the level of “pain free” with NSD/LSD, what is the best level we could achieve? Is it possible to become “totally pain free” like other normal people who don’t have AS?

For me, the best achievement I could get with this diet is quite satisfactory, not reach the level as I mentioned above considering I still have some minor pain after work or some limited abilities.

Limited abilities would be like no more hiking to the mountain like I used to do in my college or stuff like bungee jumping , (never have any intention though) or some other dangerous sport. Now, I would think hundred times if I have my chance to go to Disneyland and took the dangerous ride, simply because I don’t think my body can cope with it.

Quite satisfactory for me is that I can perform normally like:

1. Walking pain free
2. Sleep pain free
3. Working from 7 to 6 or more
4. Housekeeping after work
5. Fatigue free

If at the end of the day, I have some minor pain on my back and have to lie down, I would consider it as a normal cause actually my back bone isn’t as straight as other normal people (I was born with this condition as far as I can recall), and I am happy and consider my diet has been successfully helping me going through all of those activities.

Therefore, I would like to know on what level you all have? Is it possible to reach beyond my achievement at the moment? Cause frankly speaking, I cheat all the times and perhaps I could achieve better if I am not? .

Sinta

Dear Sinta,

I would say I am pain free but suffer discomfort. I have stiffness because I am fused, so how could I avoid it! Particularly early morning discomfort when I wake, because my modified skeleton doesn't like being laid straight for long periods. How I could confuse a rheumy ...

But the justification for saying pain free is this. When I now have a small accident to my dodgy left hip, resulting say from stumbling into a hole walking across rough ground, or trying to lift something too heavy, I may have a temporary pain (trauma) but the following day I am fine, whereas before the diet I would have a flare and would be reaching for the NSAIDs. Magic.

It ain't what people don't know that hurts them it's what they know that ain't so - MT

Hi Sinta,

i agree with bilko. To count the value of the diet, you should outcount the discomfort due to mechanical issues.
Like the fact you describe your somewhat stooped spinal column, someone withous as and with a stooped column also suffers discomfort out of that.

But increased AS-activity can also magnify your mechanical issues so it's always vice versa ...

But i do have improved more when I reduced my carbs to < 100 g/day: the 100 g includes the sugars. So i eat NSD with low sugar as well.

Are you afraid that you need to be stricter? You don't HAVE TO, just try it out, observe the results, and decide if the incresed results (if any) are worth the extra trouble (if any)

I have found that increasing my FAT intake compensates (in satisfactory sense) my reduced carb intake, so to me only benefits, no extra trouble.

regards,

Arjan

Sinta
I think I know one person, Krishna, who has become totally pain free with diet alone.
He has been very strict, and gets no pain or morning stiffness for months, and only every now and then there is a flare. Another person is Dakotadan who hasnt had a flare in 3 years!!

I think if one achieves that level, then one is as normal as people without AS.

Krishna has had AS for many years, and Dakotadan for amost 20 years and they could achieve it...so I guess people like us with only a few months or years could surely get to that level.

Regards
Nishant

The only pain I get now is residual, left over damage from my old flares. I probably haven't flared for, gosh, I'm not sure... anywhere from 8 months to a year I guess. If I eat something bad I'll get a litle bit of a stomach ache, get cranky, or get real acidic, but I won't have an arthritic reaction.

My main issues now are tightening up the ligaments in my ribcage (I had some major flaring there, lots of stuff got messed up) and my low, low back, in the sacral region. This area has hurt constantly (only when I flex the lower back muscles, actually) since my first major flare when I was 19, so I'm pretty sure it's just a permanent reminder of what I've been through.

Funny you should ask this question. I have been contemplating this for a while and want to put up a survey with pain maps, diet and pain levels etc., for AS patients on NSD or LSD.

I have been on the NSD since October 2002, and experienced the typical "damn I shouldn't have eaten that!" But things are getting easier. When I started, my hips were in constant pain, lower back was even worse. Shoulders and neck were starting to bother me. My flexibility was very low. I would wake in the morning VERY stiff and sore, but it would never wake me up - that would take a Mac Truck anyway!

To give you an idea of my pain threashold, my experience is as follows.

On a scale of 1 to 10, 10 being the most painful, 1 being no pain:

Before the diet

Hips 5
Lower Back 8.5
Neck 2
Morning Stiffness 8
Fatigue level high

Activities I could tolerate: walking was difficult after 5 minutes, could not do anything else pain was too much in the lower back.


After the diet:

Hips 1.25
Lower Back 3
Neck 1.7
Morning Stiffness 2.5
Fatigue level medium-low

Activities I can tolerate now: I play hockey twice a week for 1 hour with some extra stiffness afterwards and the next morning. I can walk for approximately 5 hours before feeling pain.

My flexibiltiy is almost the same as when I had no problems at all - although I am 5 years older!

If I could get my low back pain down to 2, I would call this diet a complete success.

I personally think it is very important to document this type of information because you will have solid indication of performance - especially in terms of a food journal. Moreover, it will also help you find out where and when you are failing. Kind of like a smoker who is trying to quit - they need to know what situations to avoid.

My next task is to get my weight back up. I am male and 6' tall. Before the NSD I weighed in at 185 lbs. Now I am a flimsy 167 lbs! I think my weight is still dropping so something has to change soon. I feel like the wind will blow me away!

Hi,

I think, I remember your post about the pain maps some time ago.

I am not pay very much attention for a pain map, not because I don't care about it cause I believe it's important and you have a very nice idea of bring it up. It just that, I don't have too much problem with AS ever since I start my diet, and if I still have some pain because of mistaken food or some minor pain, usually I can eliminate it very quickly.

Plus, I am not sports person, my job is behind my desk and I don't have too much outdoor activity so with this several minor pain, I consider that I can run my life almost like other normal person.

I never good at maps, any kind of maps and sometimes during a day, I cheat several times and somehow I don't have a clue which one trigger the flare .

I will pay more attention though, I promise .

Using your number, at the moment my condition is:

1. Morning stiffness: 3 (on neck only, coming from the recent flare)
2. Back pain: 3 (after work)
3. Hip pain: 0
4. Fatigue: Low

Sport Activities: I can swim 30 or 40 laps, over and over, no problem

So, I guess, the result is okay

Thanks for your input and hope you can get your weight back up.

Sinta

Hi Sinta,

I definitely notice a difference between LSD and NSD. Like you.... I enjoy a little starch here and there I suspect my pain levels are similar to yours.... only in the hips and low back rather than the neck.

If I go straight NSD I have no issues with pain..... I also find the longer I go NSD, the longer it is before I notice issues with eating starch.

Take care,

Tim

"I had no shoes and complained, until I met a man who had no feet" - Indian Proverb

I'd consider myself somewhere in the 90-95% pain-free range. Probably just past damage that hurts now. However, I still can't do all the stuff I used to -- anything too strenuous lets me know that this disease is still here. But I can walk 2-3 miles every day, though, and do my strength and flexibility exercises every other day, and my energy level is high most days. I have a bad day, sometimes two, each week, but I think that's the marrow failure (very tired once in a while). But good enough for me!



Before I'd even heard of AS -- climbing in the Rockies. (Eww! I look fat in Tom's clothes!)