Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The fatigue ... the soul-crushing fatigue

Thanks dmx. I sincerely appreciate your concern and advice. I have several reasons why I've declined Remicade treatments at this time, but they're very personal reasons which I would not be comfortable discussing here.

My most recent MRI was clean (no fusion) - even in the SI joints. Of course, this was almost 1 year ago and I know I'm sitting on a ticking time bomb. I'm just hoping it has a long timer.

Perhaps down the road my situation will change and I'll take the anti-TNF route, but for now, I'm just going to have to keep fighting the good fight!

+1

That is a good description.

Hello there RBarnes,

If not interested in looking at No Starch or Low Starch, I would still encourage you to eat healthy if you are not.

Lots of fruits, veggies, lean meats, whole grains (if want starch), foods with probiotics (organic yogurt, sauerkraut etc...).

Toss processed foods, junk foods, soda etc...

We have to help ourselves with battling this disease.

Hope you can find some answers to the fatigue and pain.

Best to you.

Tim

That's very good when were you first diagnosed?

Did you know that starting anti-TNF early on can quickly put you in remission and in a small percent of people when the drugs are stopped their AS doesn't come back?

Essentially that is a cure and it's worth the risk although in most people the disease is lifelong.

How is your fatigue and pain today?

I myself don't have fusion in the SI joints too plenty of pain in the upper back.

Recently it started going up my neck so this area feels very stiff in the morning.



I am 31. I don't know how I am gonna live with this some days I am really struggling with my own body.

Thanks, Dotyisle. I've been reading quite a bit about the low-starch and no-starch diets. It's certainly something that I'm interesting in trying, but I have no doubt it's a challenge especially given my love for all things food-related.

dmx, I started having pain in my SI joints (usually while driving) in 2009. I just passed it off as me getting a bit older. Then it started bothering me when I slept. The clincher was when, while on vacation at Disney World in mid-2013, my entire right leg went completely numb. That, coupled with the increasing pain, is what sent me to the dr. My primary care physician took some blood tests, x-rays, etc. My inflammation markers were, of course, quite high. He sent me to a rheumy who, after a thorough physical exam and more blood tests (one for BLA-H27), x-rays and an MRI, diagnosed me with AS. This was in September 2013.

I've read a lot of information about TNF inhibitors and, if I am being 100% honest with myself, I know that's the next logical step in the treatment of this stupid disease. I also know that the longer I wait, the more risk I have of permanent damage. Still, for now my choice is to "stay the course."

My pain today isn't too bad - though our baseline for "bad" is slightly different than that of a healthy person. The fatigue's pretty awful already, so I know I'm in for a looooong day/week.

I'm very sorry to hear about the pain in your upper back and neck, especially since you're only 31. I guess in a lot of ways I'm lucky as I didn't become symptomatic until I was near 40. Hard to feel lucky sometimes, though.

Wishing all of you as pain-free a week as is possible!

RBarnes,
Hi.
My experience is that as The N/L starch diets begin to clean out my system, I get very, very, tired. The loss of sugar also affects my emotional need for energy to deal with the exhaustion.
My family is strong and short but we all over eat to compensate for lack of energy. A vicious cycle.

You can improve your life and find value in things that many take for granted. I am glad that you are here, and that you have found the love that even our brothers have for each other.

Most of my pain is right in the middle of the spine, yes.

I hope you decide to try a bilogic and save yourself from permanent damage which you will have to live with for the rest of your life.

Are your eyes affected?

I have dry eyes and use artifical tears daily.

Probably not very helpful but at least you guys can complain about fatigue. My fiancé has narcolepsy;not the fall asleep where you stand level but the chronic excessive fatigue and cataplexy kind. Not even 60mg of Adderall touches hers.

So yeah, I can't even complain at home about mine lol. Fatigue really is brutal. Mine usually leaves me feeling really depressed too.

of course the choice to start a TNF inhibitor is a personal one, but I will add my 2 cents.

i wish I had been allowed to try them 15 years before I did. I had 12 years of out of control inflammatory flares that were really bad before I could find a doctor to dx and treat me.

Back when it all first started, my neck was "bad" but not bad the way it is now. All those years of uncontrolled inflammation and now my neck has progressed such that I have bone spurs bad enough that they press on the nerves causing the following problems:

1. I stopped being able to sleep laying down dec 2013. Before that I could, on a good bed, with a thin feather pillow. but not now. Now I sleep in my recliner. thankfully I have a good recliner.

2. i get cortisone injections into the facet joints of my neck. Currently I had those done for the last 3 christmases in a row. They help.

3. I can only sit in / on low hard flat chairs. I can only drive my old 1995 saturn with 250,000 miles. don't know what I'll do when that car finally dies; all new car seats seem to be evil to my neck.

and this is how my SI has progressed:

started in oct 2000. initially it only hurt / was inflamed / caused muscle spasms during flares and then for the weeks / months following a flare.

around 2010, my SI joint damage was chronic enough that I can no longer go swimming, it often is achy, I can't climb stairs or hills without flaring it.

If I had been able to start a biologic back in the late 1990s when the symptoms first started, maybe my neck and SI wouldn't have the damage they have, wouldn't be so chronic now.

My rheumy's predictions were correct. He said that humira would be most helpful for the body parts that didn't have damage, like my feet and wrists, but for the spine (neck and SI), since I have bone spurs (caused by the inflammation) and arthritic damage in my SI (caused by the inflammation), that damage isn't going to go away.

Prior to the humira, the combination of damage and inflammation impinged the nerves more. At least the humira reduces the inflammation so the nerves aren't so impinged. but boy, imagine if the damage (bone spurs, etc) weren't there!

but yes, your personal choice. I just wish for myself, my spondyloarthropathy was recognized back in the 1990s. I started with the severe GI inflammation and symptoms in 1993 and severe joint symptoms in 1998. But it took til 2010 to get diagnosed and treated. and finally 2013 to get the humira (as we tried other things first: nsaids for a few months, then methylpred for flares).

Wow, I really appreciate the time you took to write your post. I'm supposed to talk to my rheumatologist on Wednesday regarding what to do next. I finally found a specialist that I trust with my life and I'm finally ready to accept that I have a serious illness that demands big time medicine.

Anyway, you helped to ease my anxiety a little bit tonight so, danke!