Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group 25 yrs oldand can barely get out of bed in the am

First hello to all. This is my first post. I finally bit the bullet and registered after a night of wrenching pain and no where to turn for support.

I am at a loss.. I have constant, debilitating pain in my SI joints which from recent memory has not subsided in intensity for going on six months now. I am now standing at my desk typing this post getting weird looks from coworkers who have no idea the pain I am in. I don't understand how anyone can lead a normal life with this condition. I'm 25 years old in great shape otherwise, but when my AS flares I feel trapped inside my body; hobbled, debilitated.

My parents seems to think that it is a made up disease and that I just need rest or that I'm fishing for sympathy, but on morning's like this I wish I they could be in my shoes.

Even when I sought out a Rheumatologist and told her my symptoms she seem more intent on explaining the low odds of this condition, rather helping me to treat it, even after I tested positive for the HLA-B27 marker.

I recently switched jobs and my health insurance doesn't kick in for another month which seems like an eternity. I took my last 75mg Indomethacin SR a few days ago after paying $90 for a month supply off insurance. Even so I barely feel the benefits of indomethacin.

I've been on the no starch diet for 2 weeks, and it seems to have made my condition worse. Can that happen?

I'm just at a loss. I hope there is some light at the end of the tunnel, because at this point I am not looking forward to managing this for the rest of my life.

P.S. - I am extremely humbled by all those who manage their condition, and I realize my pain may seem like a bee-sting in comparison to what you experience, so I apologize if this post offends you. It is completely unintentional.

[jqtpyer]

I'm so sorry that you're going through this. I can related to everything you just posted, and I echo the thought "I'm humbled by all those who manage their condition... mine seems like a bee-sting in comparison to others..."

But it still hurts like the Dickens, doesn't it?!

AS is new to me, have dealt with flares for the past 6 months. I'm almost 4 weeks into the no-starch/lactose/sugar diet (I do feel a little better, whether due to flare tapering off/diet/meds) and I encourage you to stick with the diet, even though symptoms may seem worse right now.

Those who seem to have had the greastest success diet-wise have ridden the diet out for at least 3 months, while being extremely strict (think a year, to modify and adjust the diet to fit you specifically). The NSD is my only "life-line" right now, the AS drugs scare the bejeezus out of me, so I'm sticking with the diet, and 500mg Naproxen/day (down from 1000mg), and some muscle relaxers for good measure!

It sounds like the immediate thing of importance is to get the inflammation under control as much as possible (meds, ice, diet, supplements?) and then try to continue to keep the inflammation down (diet, supplements > hopefully remission).

Keep posting/asking questions on the Forum, and search & read older posts as well. Try to have your parents surf KickAS.org a bit, if possible. People close to you need to know what you deal with on a daily basis.

It's not exactly upbeat either when the docs just tell you the predicted outcome of being B27 positive when displaying a bunch of pre-AS symptoms... Inform yourself as much as you can, even though it's dreaded reading from time to time

/Kristine

Has your doc tried Sulfasalazine yet? If your not allergic to sulfa then the side effects aren't bad and it is cheap too. Maybe you need a different rheumy? I can relate with the pain and family acting like nothing is wrong. They can't accept that someone that young could have a arthritic problem. Just hold your chin up. Until I am now going to start remicade after trying humira and enbrel are they figuring out I may actually have a problem.

Hi and welcome to KA.

I'm so sorry you feel like this.

You may have to be aggressive is seeking a diagnosis. The SI pain, your age and HLA-B27+ do seem to add up to AS. Question, are you male or female? Wouldn't ask, except sometimes women have a hard time getting diagnosed with AS. Sometimes. It used to be much more frequent than it is now, but it does happen.

If you're male and still got the low odds opinion, even with only the information you've told us, then that rheumy needs a reality check.

Questions:

How do you feel upon first rising in the morning? Are you stiff? And if so, how long does it last?
How do you feel after extended periods of little to no activity?

As for the diet it can take upwards of 6 to 8 weeks for your body to start responding to the input change. Have patience with it.

Keep asking questions here. I know at your age the tunnel seems far too long, but registering here was your first step toward reaching the end of it. Between us, I rather doubt that there's anything about the Spondy Monster that at least one of us hasn't experienced.

And please don't even try to compare your pain to everyone else's here. It's your pain. Full stop. That makes it horrible. It needs to be dealt with and you will need to be pro-active about getting a diagnosis and proper treatment. But we all understand living with pain here. You are not alone.

Hugs,

Hey there,

My heart goes out to you. I understand your pain and the frustration at other's lack of understanding. Hugs to you.

When I went off starch it was a little better but nothing spectacular.

I replaced my starchy foods with fresh orange juice, dried cherries, raisins and almonds. I lived on that stuff alone. The natural sugars I was eating made me hardly miss the starch.

Then a dietician told me to drop all sugars (even fruit) and see what happened. I did and in 24 hours my pain fell from a level 6, to a ONE! This is apparently because I also had an overgrowth of candida. Learn more about candida here: http://www.healingnaturallybybee.com/index.php

So not everyone has to avoid sugar, but play detective and see what you replaced your normal diet of starches with? Maybe something in there is not agreeing with you.

You can also post a list of everything you've been eating the last two weeks and we can all look at it and offer thoughts and suggestions that may help.

Good luck. This disease causes excruciating pain, and you are among a group of nearly 8000 people who know exactly how you feel.

Take Care,
Donette

Welcome to KickAS mate.

I'm 27 myself, and completely know where your coming from. There are days I struggle to walk. One day I feel relatively normal (bit stiff but pain ok)the next I feel like I've aged 40 years overnight. Which generally puts me in a bad mood for days.

I'm lucky I have a very understanding and loving wife, and my parents/family are pretty understanding too, so I can't comment on your difficulties there. However I do find my mates the hardest to convince of my problems. They don't see me at my worst or maybe they'd come around. I feel uncomfortable at times as they want to play golf, or go out all night or just do things normal 27yr old's do, but most of the time I have to say sorry I can't. To them I don't look ill, they just say "just go easy mate, you'll be all right then". But they don't get that I struggle to concentrate due to my fatigue, I only sleep for 4/5 hours a night. On a good night I'll sleep for 7/8 sure, but when I'm in a lot of pain regardless of how much I sleep I'm just constantly knackered.

Anyway I'm sorry I'm rambling now.

Hopefully I'll be starting Humira soon so I'm hopeful I can get back to playing golf. It worked for Phil Mickelson, so sure I'll help my handicap

Just remember your not alone

I am 26 and can feel your pain. I have not been able to go to school in over three weeks now. I am in so much pain. My Ulcerative Colitis with my arthritis has created this fear in me of not being able to get to the bathroom in time, which has contributed to my lack of going to school and shut in nature now.

I do not have much else to offer in the way of help. I am starting enbrel on thursday, so hopefully the insurance will go through.

i also have that feeling of aging fifty years in a short time. I went from 26 to 76 in three weeks. I am trying to not let it define me but its hard when i move as slow as my grandfather.

hi, welcome to KA!

sorry you are in so much pain!

it can take awhile to sort it all out, find medical practitioners that help, but they are out there

i started having these issues when i was 35, really came out of nowhere! and it took about a year and a half before i found a physical therapist that could help me with the symptoms. then another year and a half to find a physiatrist that could help me with more of the symptoms. during this time, i tried a few nsaids and cox2 inhibitors, they worked on the inflammation, but gave me side effects that i couldn't tolerate. went to a rheumatologist that i stumped: but i am a bit different than you, was in my late 30s and not only SI problems, but torn tendons and ligaments too, only people with really bad enthesitis do that according to my new rheumy so i think that made them not realize for the longerst time what i had. they did check my ESR which was ok back then and rheumatoid factor to rule out RA and other blood work to rule out lupus, but no one except for a really good PT suggested AS and my really good physiatrist was adamant that it was an inflammatory arthritis even if no one knew what kind at the time. but honestly, the PT and physiatrist were making such good progress that i just didn't worry too much about it at the time (the PT was using ultrasound and doing soft tissue work, the physiatrist was doing triggerpoint injections and gave me a cortisone injection into my SI and gave me the muscle relaxant zanaflex, all of that was getting me functional again) of course if i had found a rheumy at the time who could dx me and give me the proper medication, maybe i wouldn't have needed the PT and physiatrist....

anyway, i had to move in 2003 and for the next 3 years, i was managing on my own, using all the tools that the PT and physiatrist had taught me. but in the summer of 2006 i got a lot worse and started seeking out rheumies. took about 2 years and 3 rheumies to get any one who would keep me and work with me. i'm HLAB27 negative, my CRP and ESR run between 5-10 typically, so inflammation, but not enough to raise eyebrows of most. i've had xrays, CT scans, bone density scan, and MRIs over the years; they've shown some arthritic changes but no huge smoking guns, no evidence of fusion. the third rheumy in town tried me on a few nsaids, then stopped and threw up his hands, said he didn't know what else he could do for me, i suggested a few things, that's how i ended up on LDN (low dose naltrexone), if he had been willing to try other drugs, i may not have ended up there. over time SI joint got worse and worse, had another cortisone injection, both sides this time, deep into joint under fluoroscopy, that helped for about 6 months, then bad again - thats when i asked for the flector patch (a topical nsaid patch) - i were it 24/7 over my SI joint and change it every 12 hours, it works pretty well, still some issues, like today, slept too long, SI joint very tight, then when trying to sweep, something not too happy and now lower back and butt spasms, arrggh! anyway, got tired of not being treated aggressively enough, so this past september flew down to philadelphia to see dr brent - he has written some good papers on the spondyloarthropathies - he dx'ed me with undifferentiated spondyloarthropathy due to prominent enthesitis (his words) and the SI problems and spine problems and all the typical spondy stuff like some gut inflammation and ulcers in the illeum. but not AS due to no fusing and no iritis, thank goodness for some things. now he's trying me on my 4th nsaid through him (8th overall, plus the 3 cox2 inhibitors - or something like that, i might be off by 1 or 2), if we can't find an nsaid, then we will move on to the ssz, then if not that, maybe on to a biologic, time will tell. and last fall my back was so bad i couldn't work for a few months and then this fall the same thing happened. last year the PT, physiatrist, rheumy, even an acupuncturist couldn't help me out, so i knew it was something new. this year when it started again i knew i had to find someone different, found a chiro who has been helping me; i had been to other chiros in the past without much help, but this guy is different, he does a lot of soft tissue work that has been helping me very much - turns out my ribs had started shifting around and he is helping me with that.

i think its one of those cases where there is more than one way to treat a problem, and the multipronged approach helps. on the other hand, maybe the right drug would make all this hard work obsolete?

i write this to show what may or may not be helpful in your quest. but you are younger than i was, have the HLAB27 gene, so hoping you can find a rheumatologist who can dx and treat you

While you are waiting for your insurance to kick in, you can help the pain by taking an over-the-counter NSAID. Naproxin is a good one. You need to take the full dosage all around the clock so that it is always in your bloodstream. Heating pads, hot showers and ice packs can also help. Some of us even put a hot pack on one body part and an ice pack on another. You will have to experiment to find what works best for you.

One thing that will help your doctor give you the proper Dx is to keep a pain/stiffness journal. Note when you wake up and how much pain and stiffness you have. You need to list what part of your body hurts, how much and what makes it feel better(hot shower, heating pad, ice pack). If you wake up in the middle of the night, be sure to list that and the time. A journal is a good habit to get into as you can use it to track how well medications are helping you when you get on a treatment plan.