Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Withdrawals???

Hi Angie,

Boy do I hear you about longing for starchy foods! I think I'm actually getting past the worst of that. It's been much easier for me to say "no" over the last week or so. It's so nice to be able to refuse something and not feel at all bad about it!

Your "pain to the point of shock" suggestion makes sense, except that I've experienced worse pain than this before. Although, now that I think about it, it's been awhile since I've endured that kind of pain, so maybe it was the sudden re-introduction of that level of pain that did it. Before, it took time to work up to that level of pain and it was pretty constant. That really does make sense the more I think about it!

I don't know what my blood pressure was doing. It wouldn't surprise me if it had shot up. It took all my mental and physical energy to concentrate on breathing deeply and trying to make the spell pass. I was sure I was going to drop. What a horrible experience!

I haven't tried muscle relaxers this time around... in the past they haven't done a bit of good for my pain, they just made me sleepy, then I would wake up in even worse pain in the middle of the night!

Thanks for sharing your experience with me,

Sharon

Ike,

Thanks, I looked at the link you provided... wouldn't the symptoms continue if they were a side-effect of the Clinoril? This was more like an attack. It eased after a bit. I am cutting back though, I only took it at night yesterday and seem to be doing okay, although I've had another toe swell up. That's four out of five on my left foot! I'm down to sandals only... good thing I'm in So. California!

Boy I sure don't miss the days of the intensely painful ribcage! I haven't suffered with that for a few months now. Last September I developed a cough that lasted until early January. That was horrible!!! It was probably good for me in a sense though. It kept me expanding my chest when I otherwise would NOT have. I was poking around at my ribs yesterday and discovered that I don't even have that "bruised" feeling anymore... no pain at all in my ribs! That was encouraging! It's very strange to me that I can improve, yet have a new toe swell up at the same time??? What a mystery this disease is!

Sharon

Hi Bruce,

This is the first one that I've experienced since going NSD... I think Angie's "shock" suggestion makes the most sense as to "why" it happened now.

Sharon

Hi Sharon, I don't know if a side-affect is always persistant or not. So many factors can contribute. I think this disease is the same waay as far as causing a host of diffferent reactions. The disease it self is probably a reaction, just as Rieter's Syndrome.

Sorry to here about you feet. I've never experienced any swelling problems. The tender foot thing is the only part of my AS experience that has been persistant through the AS diet. I always thought it was the golf. It is usually worse in the summer. This year is no exception. I do spend more time on the dogs in summer. I thought ageing was the cause. They have always seemed to be independant of flares for me as well.

Best Wishes,
ike

Hi Sharon!

What you describe sounds like a vasovagal episode. From the Merck site:

"Vasovagal (vasodepressor) syncope is typically precipitated by unpleasant physical or emotional stimuli (eg, pain, fright, sight of blood), usually occurs in the upright posture, and is often preceded by vagally mediated warning symptoms--nausea, weakness, yawning, apprehension, visual blurring, and sweating."

That you were sitting down and did deep breathing probably helped prevent you actually passing out.

There are many definitions of it but the main causes are as above, pain is a big cause, and the fright thing is that reaction some people get on hearing bad news. Sight of blood is common, also other procedures like that, but it can also happen with straining to pass uring or open bowels, I've seen a few patients get it after having enemas, alos sudden onset of acute diarrhoea can be a cause. The vagus nerve is over-stimulated from whatever event which results in blood being sent out to the limbs and bradycardia and as the brain receives less oxygen the near-faint or actual faint is your bodies natural reaction to promoting blood flow back to the brain, by getting you horizontal! The onset is often sudden and it usually resolves fairly quickly but as you say, it is a particuarly unpleasant experience.

Your pain and stiffness will increase on coming off NSAID's, and they can take a week or more to leave your system fully, so this will increase as it leaves your body. As you were anxious about stopping it and had had a bad day with pain and stiffness, your apprehension may have contributed to the episode. But I wouldn't let it stop you trying again, maybe next time you try omit the frequent walks and try gentle stretches and warm baths as a means to relieving pain.
Recently I stopped my NSAID's but it was because I got colitis again, and when my Naproxen was changed to Vioxx I got even worse on the Vioxx! I was sooo determined to not take anymore NSAID's and as I wanted to stop them anyway it seemed the ideal time. I took a Codeine-Paracetamol preparation and whilst it was no where near as effective as the Naproxen, it was heaps better than the Vioxx and although I spent a couple of hideous weeks feeling really crappy I'm so glad I stuck with it and now being on the LSD for three weeks (today!) I am hardly taking anything, the Co-Codamol is down to well, maybe one dose a day, but there are many days I haven't had anything which is AMAZING!

So please give it another go Sharon, maybe try taking bromelain which is a natural anti-inflammatory from pineapples, and GLA's and/or EFA's for their anti-inflammatory properties too.

Take care,

Jan

Thanks so much, Jan, for your insight!! I always want to know WHY something happens. I'm glad you knew!

Thank you also for your encouragement regarding going off the NSAID. I've been taking it only at night for the last couple of days, then yesterday my PCP prescribed Darvocet (boy does it knock you out and make you IRRITABLE!!!). I took it at 7:30 pm and 1:30 am. I am very stiff and sore this morning! It's funny, though. So little of the pain is in my back now... just one vertebrae in my upper back/base of my neck and my left SI. Otherwise it's all peripheral (left hip, both knees, left foot). My collarbones and left shoulder aren't as sore as I would have thought either. Kind of strange! If I could just get my foot and my knees to calm down, I'd be in pretty good shape!

I am very glad that the LSD is having such positive results for you! I wish it would for me too... it's so hard for me to keep from getting discouraged with it. I'll keep trying, though. I've been taking bromelain and eating lots of fresh pineapple. What are EFA's and GLA's?

Well, I'm going to quit writing... I can tell that the more I write, the more down I feel... NOT going to go there!

Have a great day and thanks again for your help!

Sharon

Hi Sharon, congrats for stopping the NSAID's, hope the irritability effects of your new meds tail off soon!!! Hopefully you pain will soon start to improve too. Now that you've said it, I remember the pain went more widespread and my back didn't bother me as much as other areas. My left hip was a nightmare and my thighs ached and ached. Which reminds me, don't forget about heat pads/ hot water bottles or cool packs (or the good old stand by of frozen peas!)

EFA's = essential fatty acids, such as flax seed oil, hemp seed oil, cod liver oil. Found naturally in oily fish especially.

GLA's = gamma linoeic acids (?sp), such as evening primrose oil, star flower oil.

Both are anti-inflammatory and affect prostaglandins, therefore help relieve pain. Bummer is they can take a few weeks/months to work. I've been taking hemp seed oil as it has a mix of Omega 3, 6 and maybe some 9's, I can't remember off hand, but I know I chose it as it was supposed to have the most properties. If you did a search on one of the health food sites you should get some good info. People have been taking cod liver oil for years and they've only recently done research to confirm it works (not much profit to be had?!!)

Other herbal type remedies with anti-inflammatory properties are cats' claw, devil's claw, ginger.

Maybe now your off the NSAID's the NSD will start being more effective for you? It's scary stuff to realise they actually makes things worse, I was shocked when I first found that out. Read some research recently that says they also delay bone healing, and the COX 2's are the worst for it!!! Hopefully it will start a trend towards not prescribing them as frequently as they are now.

Hope your next post has some good news to share with us, Sharon. Take good care of yourself hun,

Jan

Dear Jan,

Thank you so much for your practical suggestions and your concern that is evidenced in your last post. Both mean so much to me! (It's fascinating to me how much "needier" we are when our pain level is higher—yesterday I was sitting in my living room crying because I was in pain, but moreso because I was in pain and I was ALONE. Sorry men, you probably can't relate... it's probably a "girl thing.")

I was just reading about fish oil on the internet yesterday... I'll have to give it a try once I begin working. With my hubby in school, our budget is just too stretched, but I begin a new job in a week. One of the other NSD ladies and I have been Pm-ing and she encouraged me to try fasting and enemas as well, so I'm encouraged. There is more that I can try. I won't throw in the towel yet... I was awfully close last night!

Well, today is day three without NSAID. It's been awfully rocky so far, but it's "just" pain, right? I can handle it. Our weekend at Disneyland won't be as much fun as I had hoped, but my hubby is understanding and is willing to make it just a weekend by the pool at the hotel if necessary, so that's okay.

Have a great day and thanks again for your kindness!

Sharon

Dear Sharon:

We are with you all along--and everyone here is not out of my own thoughts for any measurable length of time. I'm really glad that you are getting some great advice and I am certain that you will soon reap the benefits of all the effort and firm resolve.

I cannot send attachments via PM, but will send you the fasting chapter and some other information if you will email me directly: aureq@inreach.com.

Very Best Regards,
John

Thanks so much, John. I've e-mailed you...

Sharon