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#517316 - 06/19/17 03:45 PM NSD not working due to hormonal changes?
chpritz Offline

Registered: 01/08/06
Posts: 111
Loc: Vienna, Austria
Hi all, it's been a long time since I've last posted - but I'm so glad the forum is still here and still full of people helping each other.

I've been having my first major flare since more than 15 years and I'm really struggling. 15 years ago I had a very bad flare and while I was waiting to finally get seen by a rheumatologist, I found and decided to try the NSD. It worked like a charm for me, almost within a week I was painfree.

Once I developed iritis a few years later on it got a little bit trickier and the iritis didn't respond as well to the diet. After a lot of trial and error I had good success with osteopathy and homeopathy. In between I fell pregnant and was one of those lucky women to be abolutely symptonfree during and about until 2 years after the pregnancy.

About 6 years ago I had a major iritis relapse but got that under control again. Suddenly, since 4 years, everything fine, could eat anything I wanted, as if I never had AS.

I'm now 45, last autum I started developing singns of pre-menopause. I had my hormone status checked, definitely pre-menopause. I all sorts of different issues just before or during my period (sorry to be so specific, but it is important). I get mainly heart palpitations, dizzy spells and panic-attacks.

About 6 weeks ago I started feeling pain in the neck. I was hoping it was must me spending too much time in front of the computer, but deep down I knew this felt like AS. To be on the safe side, I immediately started reducing starch again. Shortly after just around my period I developed a major migraine including feeling very sick. Due to the headaches I couldn't tell if the neck pain was still there and because I felt so sick, I ate some starchy foods.

Once the migraine was finally gone (after about 4 days) I realized I was in a really bad flare and also had an iritis flare up. Something I never had before, it was only ever one or the other, never back and eyes at the same time. And the diet is simply not working. I'm really strict, I've cut out most dairy, I'm careful with sugar, but I'm getting nowhere.

I tried fasting one day, just to get a feeling if food was the problem and I felt just as bad as the other days. I know one day is too short, but it kind underlines my suspicion all this is due to hormone inbalance and there is not much I can do with diet.

Which leaves me a bit desperate. I went back to my osteopath and homeopath but they are both just as surprised as me about the severity and weren't able to help just yet. Tomorrow I finally go to see a rheumatologist, in order to get a physical overview of what is going on.

The flare up is crazy! It wanders up and down my spine, travels to the front in my chest, I have severe issues breathing deeper, my neck hurts so bad, I feel like I have a sore throat on top. Sleep is hard to come by. Rigth now I've been managing with Ibuprofen 400g about 1 or 2 a day.

I don't want to start taking heavy meds, but I'm wondering if I even have a chance with the diet, if hormones are the trigger. Any ladies out there who had similar issues?

I had gestational diabetes, which is also caused by hormonal changes. I was superstrict with my diet but had very bad issues and had to take a lot of insulin in the end. So it seems my body reacts sensitively to hormonal changes.

I'd be most grateful for any form of advice - I'm a bit at my wits end right now.


#517319 - 06/20/17 05:34 AM Re: NSD not working due to hormonal changes? [Re: chpritz]
Frederick Offline

Registered: 03/28/06
Posts: 258
Originally Posted By chpritz

I'd be most grateful for any form of advice - I'm a bit at my wits end right now.

Yes it is a [*bleep*] of a thing this A.S. Personally I went in to state of virtually complete remission for over 20 years. No medication or treatment whatsoever. But it never lasted as the pain and all the other symptoms returned as bad as ever. Sorry I have no actual advise that would be of any help to you. In the end I suppose all we can do is just hold on in the hope that things will again improve for us.

#517320 - 06/20/17 11:19 AM Re: NSD not working due to hormonal changes? [Re: chpritz]
Robin_H Offline

Registered: 09/13/15
Posts: 253
Loc: Hubei, China
Hello chpritz:

Try a probiotic if you are not already. I'm considering seeing a neuroendocrinologist about helping me improve my sleep too.

I've had low level inflammation in my thorax spine for the past 22 years which I believe interferes with the sleep quality (especially for the past 14 years), and the impaired sleep quality creates more inflammation; a viscous cycle. My condition was stable in those years but I didn't feel like Superman all those years either, more like Zombieman! Went from an IQ of 150 to 135.

I'm not implying that that pain due to inflammation impaired sleep quality. I believe that the immune system activity can interfere with hormone balance and disrupt sleep, similar to how in Graves disease antibodies bind to receptors of the thyroid gland thus not allowing the correct hormone to bind to the receptor resulting in non-restorative sleep.

Two years ago I started an obvious flare which I believe was highly exacerbated by taking ibuprofen and so your use of ibuprofen makes me anxious. I avoid it like the plague now.

What I noticed really helps me is taking a high dose (50 billion CFUs) probiotic. It has lowered the intensity of the flare but it isn't getting me out of it. It is spreading to my knees and toes now but the intensity is not impairing me. I had it in my toes, and heels when I was in my early 20s and had no idea what it was. It went away in a week the couple times I had it.

Hormone changes probably are an issue but oddly AS is supposed to diminish with age. AS flare during x-o-pause is a new one for me. It will be interesting to hear what others report regarding passing through getting-older-pause.

I hope this helps.
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

#517322 - 06/20/17 04:09 PM Re: NSD not working due to hormonal changes? [Re: chpritz]
chpritz Offline

Registered: 01/08/06
Posts: 111
Loc: Vienna, Austria
Thank you both for replying. Man, this thing is a real m*****f****

20 years remission and then it starts again, blimey! I thought I was an exeption ...

I posted the same question in a Facebook Group and had quite a few women replying they all had a hard time around menopause. So I think my suspicion is right that there is a connection and that it triggered this massive flare and that that is the reason why the NSD is not as effective as before. As before there was no hormonal relation, the last time I had such a massive flare it was probably triggered by complete overwork plus stress release after that stressful period.

I've started taking a phytohormone supplement and this seems to ease the problems a little, together with the homeopathic treatment.

The Ibuprofen is indeed causing problems, my liver is not doing well. So I need to try and reduce intake.

I had a very good meeting at the rheumatology center I'm registered with today - I'll be checked top to bottom over the next weeks to get an understanding what is going on and how severe it is and how to proceed if all other, natural approaches fail. They are very open and let me try and work out what might help but they are ready to jump in with medication etc. when I want to.

For now I'll continue with NSD and the phytohormone supplement. I'll also be testing a special set of Yoga exercise that help stimulate female homrmones during menopause. If all fails, I'll go on a fasting retreat for a few days. And if really all and everything fails I might consider TNF blockers - but I hope I can still evade them. I'll keep you posted of my journey.


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