Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello again. :)

Hello everyone on KA!

Thanks to everyone who so kindly welcomed me on my first post back in... Feburary?

Everyone's advice was really helpful. Based on it all, I approached my great-uncle to ask him about AS. I let him know about my symptoms (SI joint pain radiating out to the hips, fatigue and joint pain (feels like having the flu in a way), unintended weight loss, etc.). He said I sound pretty much like he did when he was my age, too, with minor attacks here and there for a couple years followed by a big one. He repeated what many of you said: "Get thee to a rheumatologist!" I did discover that I was mistaken in my earlier post, though; apparently, he is HLA-B27 negative, as is my mom. I can only assume his dad and uncle, who also had AS, would not have tested positive for that gene variant, either. So, I'm not sure how that will play itself out.

In the meantime, the pain is ever-present (68 days now), sometimes worse, sometimes better... sometimes much worse. Last weekend, unexpectedly, I was at an 8 or 9 out of 10 on my personal pain scale. I wound up getting an IM steroid injection from my general practitioner, and the pain subsided back into the 1-2 range a couple hours thereafter. I saw the physical therapist again a couple days after that, and he and I mutually agreed to end our meetings; he reported back to the orthopedic surgeon on my improved flexibility but total lack of pain relief, and I got to see said surgeon today, and he said he wants to refer me to... a rheumatologist. I politely informed him I'd already made arrangements to do so -- alas, there are like 3 rheumies within a few hours of here, and they are all booked solid. I'm still waiting to see mine by June at the latest. The surgeon noted that he was opposed to surgery in my case, citing that my pain seems to be in manageable levels after a steroid shot, and asked if I would want a corticosteroid epidural for longer-term pain relief; this is actually something my uncle had suggested, as well, stating that if the pain were to disappear entirely afterward, then I may well have AS (can anyone confirm this?). So, I'll be having that done next week Thursday. Maybe with it I can continue to work and go to classes and not feel like such [*bleep*] when things calm down after a hectic day in the pharmacy.

Again, thanks everyone for your helpful advice, particularly everyone who referred to the diet section; that is very useful information!

I don't know if I have AS yet; and while I hope I don't, I hope more for a diagnosis so proper treatment can begin.

--DWK

Hi, DWK:



68 days is too long! Much damage is piling up from the inflammation. Can You fast for seven days to take down the flare, or do a fruit monodiet--cherries to start with, since they are closest in season and apples are out here in Northern hemisphere (assumption You are above equator).

The NSD might take too long to eliminate Your flare condition, so it is time to take more drastic measures...if I were You. You can perhaps determine for Yourself whether You have AS by looking at the Pre-AS criteria in the Medical Centre section--AS and RA Papers: Ankylosing Spondylitis, HLS B27 and Klebsiella - An Overview: Proposal for early diagnosis and Treatment see the section on "Importance for Early Diagnosis..."

If Your uncle has AS, but is B27 negative, You will also be B27 negative. If You are positive, this would only serve to illustrate the serious number of false negatives the old serological testing provided.

There seems to be no doubt about Your status, since Your uncle has confirmed some related symptoms and is AS+B27-.

Yeah, and I have a story about oral steroids (topical too but that will be for another time). When I was in rehab after my last surgery, I briefly shared a room with a young man who had SLE (lupus) and had taken too much prednisone too often and ended up with a hip replacement. Well, that hip stole about a year from him, since the first one got infected and he needed more socket work after that.

Although steroids scare me, I have really needed epidural injections at times, but this is for crushed and broken vertebrae; not for inflammation. These drugs can get You out of inflammation quickly, but they will steal your health, eventually, as can NSAIDs. It isn't worth it, from my own sad experiences.

I also hope that You will be given proper treatments, but more so that You will take an active role in Your health management,

John

Glad you are seeing the rheumatologist. Sorry about all the pain. Clearly, you think for yourself and work through these issues.

I would think that physical therapy would not decrease inflammation - it's purpose, as far as I have read, is to do just what it did do for you - help with flexibility and posture.

Epidural steroids may help anyone who has any kind of inflammatory condition of the spine, I do not think a good result is diagnostic of AS. Hope you get one

John - do you have any tips for making fasting easier? I've struggled with fasting in the past - get very light headed and faint easily. I fasted for two days last September but felt very bad and had to cut the second day short.

I want to try again because I'm interested in trying an elimination diet to see if I can improve my RA through diet. But I dread the way I feel so ill while fasting. I think it's the resulting low blood sugar because I also develop the shakes as well as the dizziness.

Thoughts?

Hey there DWK,

Is that an acronym for Driving While KickingAS?

I feel for you on the prolonged pain with no respite and I hope it does come to an end for you soon.

The local pain clinic told me they weren't going to give me any shots since the peripheral pains were so widespread, they'd have to give me thirty shots. Still, one in the spine likely would have been nice anyway.

My own experience with corticosteroids is limited to Prednisone which definitely helped me a lot. The problems associated with Pred use are rather severe so it isn't a long term solution but it does work. I always mention my crash off of Pred whenever it comes up because that is the night I base my 10 on. My doctors had me on a conservative taper which proved to be too much and my system rebounded and freaked out with maddening pain...it was torture, pain and simple. The answer was to take MORE Pred!...and then continue to taper off more slowly.

Hopefully this will have nothing to do with your situation but on the off chance that it does, I would never want someone to have to suffer like that when the solution is so simple and right at hand.

Chris

Hi, Wendy:

I have some trouble on occasion, but there is a definite "hump" while changing over and You have never gotten through this, as most people don't. It is a resolution or resignation, like when we get a flu or cold: "I'm going to be sick for a few days, but it will pass." Day4 is usually very good; the headache from end of day1 and part of day2 does not last. I have never fainted while fasting, but did a stupid thing once and ate some cookies before a workout (I had not planned on working out but several power guys talked me into it), thinking I could just use the energy. Wrong! I had "diet-induced hypoglycemia" and crashed--passed out then!

Fasting is water-only and I stick by that.

It is just resigning one's self to feeling sick for a few days--and then seeing what is on the other side of that--day4 and day5 energy comes back and by day6 or 7 no AS symptoms.

Problem with nausea day3-4 sometimes but that is fixed by doing water cleansings starting day2 and every other day for first week or so.

I fast, and recommend it to everyone with AS, but with the caveat that I am not a doctor and can only relate my own experiences--fasting may not be for every person, but every person (including myself) and every doctor will have tons of excuses for not fasting.

I sometimes just think that there are over a billion people who went without food this day, and many who go to bed hungry almost every night and I offer up my own minor inconvenience to "pay it forward," or something like that. And if I once worried that I might have too much money left over, so was able to send to Oxfam (at that time there was a terrible drought in Ethiopia).

We could begin a "Spring Cleaning" thread and perhaps donate our milk money to keep the site running, especially for when fasting really knocks out our AS!

HEALTH,
John
LOOOOOONG OVERDUE FOR A FAST!

Thanks, John, for the encouraging comments. I guess I shouldn't be expecting to "carry on as normal" while fasting. My father used to so I assumed I should be able to as well. However, his fasting was carried out for political/ideological reasons, not for health reasons, so maybe it was obligitary to make it look easy!!!!

Hi Wendy, here are some half decent guidelines to do with fasting. Thought you might be interested.

Alternative Medicine - Juice Fasting.

warm hugs,

John,

I think this is not a good recommendation. There are folks who definitely should not fast. I am one of them. I have hypoglycemia. If I don't eat something every 4 hours, I first go into shakes that seem like small convulsions, and eventually if I don't get some sugar into my system (usually orange juice or carrots since it is documented that they work the fastest) I will pass out and require immediate medical action to keep me alive. I discovered this during a religious fast I was doing with my church group. Of course I never finished the fast. I think you need to be aware that for a lot of us, it is not an excuse, but a real medical issue.

If you are going to fast, it should ONLY be done with a Doctor's supervision. If you have managed to fast without a Dr. supervision, good for you. You got lucky.

Anyway, John, thanks for all the good advice you give on other issues. Your voice is a needed counter point.

Thanks Kat and 30yrvet for your contributions. I think I do suffer from mild hypoglycemia which is why I get the shakes. However, I seem less likely to get them on a water fast than on a juice fast. It may be the "diet-induced" hypoglycemia that John refers to because of the lack of protein. The body digests the juice and absorbs the sugar so fast and then you get the rapid drop that induces the shakes.

I manage to fast if I'm having surgery but still generally feel light headed and, of course, that's less than 24 hours. Given the risks for some people, I wonder why hospitals don't ask more questions before requiring individuals to fast. I wonder whether severly hypoglycemic individuals can get surgery scheduled for first thing in the morning to minimize the time they are fasting.