Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; My progress report (started 19 / 3 / 2012 )

I thought it best to put up my progress with the diet. If enough people do this, I suppose there will be a good data base of cases for people to analyse.

I am a 46 year old male. I basically have had neck and other joint pains since about 2001. The neck pains could be quite severe, with muscle spasms. Then around 2007 or so, psoriatic patches appeared. I hardly have had back pain, Maybe , severe back pain for three days per year. However, for the last 3 weeks , i have constant inflammatory back pain ( wakes me up at night, improves with exercise, associated with other large joint pain, and fatigue)

I know things have taken a worse turn.

Throughout the last ten years, my ESR and CRP were essentially normal, even when symptoms were strong) (CRP was only once raised to 20). I do not have recent sacrolialc joint X Rays. My HLA B27 is negative.

Like most people, I have been to many rheumatologists (4), all saying that they can't work out what is going on. My working diagnosis is psoriatic spondylitis.

Medicines wise, I hardly take anything. Either the pains are very tolerable, so I need nothing, or they are too severe for NSAIDS to make a difference. Also, I suppose in the back ground, I have fear how toxic long term NSAIDS could be...

I also have diarrhoea predominant irritable bowel disease.

Its been little over a week with the no starch diet. I keep records in an abbreviated way in my phone. Here is sampling of what I have been eating.
19/3/2012
scrambled egg mushrooms black coffee
salad with ham and little mayonaise
scrambled egg with herb de Provence

20/3/2012
egg bacon fried onions
pear
apple
kebab and salad
grapes,
Saucisson (like salami)
sundried tomato and saccison
21/3/2012
bacon egg
pears,grape,mango
saucisson and sun dried tomato
22/3/2012
scrambled eggs
prawn rocket sallad
chicken tomato spinach
23/3/2012
bacon scrambled eggs coffee with whitener
chicken tomato spinach
salad loads of grapes sundried tomatoes
24,3,2012
egg bacon
grilled chicken.sun dried tomatoes.lots of grape.
walnuts
salad starchfree mayo mango olives
prawn spinach chilli paste
26/3/2012
scrambled egg bacon
tuna mayo salad tomato
cauliflower spinach jerk spice walnuts grapes

Unfortunalty since starting the diet ( 1 week), I really have had no improvement. My neck pain remains the same and my back pain also continues. I don't see any difference with fatigue either.

first of all i suggest that you drop all semi-prepared or prepared foods.
buy raw and cook it yourself.

on the other hand, the first improvement i saw when starting this diet was not the lack of pain, but the quicker recovery from it. as you know most of the pain builds at night, and mornings are the worst for us. well, for me there was no big difference at that time since there were layers and layers of pain. fist signs for me were the easier recovery from the night pains - i was able to do more, to move more and to rest less during the day. it took weeks though to feel this.

another thing that kept me going was the improvement of my bowel problems - i suffer from IBD, a far worse condition than IBS, but some manifestations are alike. no more gas, no more bloating, less gut pain.

1 week and you haven't seen the light at the end of the tunnel yet ?!?!?

Have patience, Young Grasshopper..........

When I started the NSD, I did NOT notice *ANYTHING* changing for at least 1 month and probably longer. Even then there was no change in my daytime level of pain, but I started to notice that my night sleeping end point s-l-o-w-l-y got later.

For many years I have been unable to stay in bed past 3:00 - 3:30 am due to dreadful pain and stiffness. I would have to get up, walk around, lie on the floor and slowly do rhythmic movements to loosen up then stretches...... then after 1/2 an hour or more I would go back to bed and eventually fall back asleep.

Gradually I noticed over probably 4-6 months that I was not waking in unbearable pain till 4:00, then 4:30, 5:00 etc until I got to the point when I got up when my alarm went off at 7. I was still not sleeping soundly, waking several times most nights due to pain, but not UNBEARABLE pain.

This - to me - was AMAZING PROGRESS!!!!!

It was only after this 4-6 month time period that I started getting less overall back, buttock and leg pain, then I noticed after 8 months that I could turn my head more easily (and further) when changing lanes driving and backing my car out of the driveway.

I have had this dreaded curse for way longer than you when I discovered the NSD approach so maybe I had to make a lot more progress to REALLY see change, but having read the journeys of so many here over the past 3 years, I would have to say that it is the lucky few who are feeling anything more than *slightly* better after only 1 week.

I have to agree - I have been on the diet now for 8 months. I was also getting up in the middle of the night, pacing the room, using the furniture in my bedroom to pull myself out of bed in the morning. My pain most certainly hasn't gone, but I do sleep most nights. Sub-conciously I moan a few times during the night when I try to change positions but feel this is a major difference to pacing the room in complete agony every night. I think sometimes we have short memories. I certainly expected miracles and had to remind myself that just by sleeping through the night, that is the miracle!!! I am grateful for not falling asleep every evening at 6.00pm after finishing work, worn out by 10pm but I most certainly struggled to keep my eyes open before.

My husband often says 'whats the point of not eating nice things, you are not pain free'. I remind him of all of the above. A definate improvement, which I am not prepared to go back on for the sake of chips, bread and cakes!!!! Coming from someone who loves chips, I can honestly say that I no longer crave any of those things anymore. Unfortunately, I am unable to say the same about chocolate - my downfall - and something I am sure I need to give up but can't just yet!!

I've been NSD for a year and I agree with the others it is slow progress, as someone on here has quoted it takes you a long time to get sick so it will take you a long time to get better.

I was lucky in that when I started I felt results really quickly however I was coming from a less severe starting point.
I also found that after the first few weeks of feeling the best ever, one slip and the niggles crept in which I am still trying to get on top of.

You do find that suddenly you will realise that you are doing something that you couldn't do for a while. Like Louise (Inkyfingers) I realised just the other week that I could turn my head when in the car without it hurting and futher than I could before. You need to celebrate the tiny achievements as they take you by suprise. It is definately small steps forward and unfortunately some big steps backward. Three weeks in for me a couple of slips and my iritis flared up again. That was soul destroying but I picked myself up and carried on.

Food wise I am no expert but I think you need to add more safe veggies to your diet than you are doing it looks too meat/fruit biased. When I started I stuck to the safe foods on Ebringers list and the fringe foods right hand side of the food guide table. Also as you probably will have read eggs can be a problem for some.

Stick at it needs tweaking as you go as the trigger foods vary for everyone other than obvious starchy foods and good luck

at one week and a half:

Unfortunately, my symptoms are not really better. My flare is as bad as before. To add to my woes, my irritable bowel symptoms have worsened ( bit of diarhea). This is strange because this diet was originally made for IBS ! I think the worsening of IBS is because of the increased fruits.

I think from now on , i will be following the low starch diet rather than a zero starch diet. I may add a few fringe vegetables such as a bit of carrots. I may add a little of milk products as well, such as a bit of cheese.But I will try to continue this diet experiment. I have also realised the importance of keeping a pain diary ..... since it is surprisingly easy to forget how good / bad things were even yesterday.

PSpondylitis,

Your sample menu is filled with questionable items. Apples, pears, tomatoes, meats (the sausage-like stuff) that could possibly contain starchy fillers, coffee whitener (creamer? I assume), chilli paste, jerk seasoning (all spices are starchy).

You MUST test everything with iodine for starch if you are truly planning to purse NSD. Should you just pursue LSD, which I think your most recent post indicates, you can relax things a little, but I would still watch out for the high starch items and items to which you find yourself sensitive. There is a LSD sampling of safe foods on this site.

Should you want to kill that flare quickly you may want to research individuals experiences with fasting.

Good luck.

Thank you Jay.
I will use the kickas list, including the fringe foods in small quantities.