banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums29
Topics43,790
Posts518,785
Members13,829
Most Online1,568
Jun 29th, 2016
Newest Members
Marydoll, Rogeroyer, Michal, GreenCloud, TL_Dietz
13,829 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Page 1 of 5 1 2 3 4 5
Joined: May 2014
Posts: 26
R
RBarnes Offline OP
Member
OP Offline
Member
R
Joined: May 2014
Posts: 26
AS friggin' sucks. Fact is, though, that the pain isn't always the worst part. Don't get me wrong - some days it hurts bad enough to bring tears to my eyes and I've always had a pretty high tolerance to pain. But the incessant, unfathomable fatigue is killing me. It's like a thirst that can't be quenched, no matter how much water you drink.

When you talk to friends, co-workers, SOs, etc. about fatigue, it's impossible to convey the depth and breadth of AS fatigue. It's not "tired". It's unlike anything I've ever experienced in my life - you sleep because you're fatigued, you sleep poorly because of the AS pain, you wake up more fatigued than when you went to sleep. Repeat and repeat and repeat. Worse and worse and worse. Day after day after day.

I had 3 FMLA days last week because of extreme pain and fatigue. Somehow, I've managed to make it through the workweek - 11 hours Monday, 9 hours Tuesday, 8 hours Wednesday. Each evening, I've fallen asleep between 7 and 9 pm and "slept" until 6:30 in the morning. Each morning, I wake up more fatigued than the night before - until, suddenly, I've hit the wall. HARD. The fatigue has basically taken over. I want to go home, but I'm not even sure I could make the 10-minute drive to my home right now. I stare at my computer screen for minutes at a time - not awake, but not asleep either - just ... nowhere. My phone rings and it takes all the willpower I can muster to just answer.

Writing this post itself has been exhausting, but I want to know if others are experiencing fatigue at this level due to AS or if there's something else wrong here. AS friggin' sucks.


Dx 2013 RF- HLA-B27+
Meloxicam 15mg Norco 7.5/325 Celexa 20mg
Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
Offline
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865
Totally agree with you that the fatigue and sickness is worse than the pain. I'm sorry yore feeling it so severely. hugss


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Mar 2002
Posts: 9,522
Likes: 2
Offline
Joined: Mar 2002
Posts: 9,522
Likes: 2
Hello there,

AS does suck... feels good typing it though.

Fatigue is something I have battled rarely...but when I have I do agree with you that is kills me as well. It is difficult for my wife to understand the fatigue factor of AS.

Fortunately I do not experience it much anymore.

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Joined: Jan 2008
Posts: 21,346
Likes: 1
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
Likes: 1
For me, when I flare, the fatigue is like the fatigue I get when I get the flu...all I want to do is sleep...for like 12 hours straight.

but if the pain is bad enough, then we can't sleep, and so we stay fatigued.

At least with the flu, my body wants to sleep and sleep it does.

With spondy, my body wants to sleep, but it can't.

Yes, this fatigue of which you speak is fairly "normal" for spondy. In my experience at least.

Only on methylpred and now Humira did the fatigue lift.

I was so fatigued for so long I didn't even realize the extent of it, til I finally found something that lifted it.

and if it had been caused by something else, the methylpred and humira wouldn't have had an effect on it.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jan 2013
Posts: 144
P
Journeyman_AS_Kicker
Offline
Journeyman_AS_Kicker
P
Joined: Jan 2013
Posts: 144
Fatigue is what got me to a rheumy in the first place. Like so many others i went misdiagnosed for many years. First i was put on humeria, that helped with fatigue but it was still a big problem. Next was a change in my diet, no starch diet helped some more. I started taking LDN about 6 months ago and that helped too. I still have fatigue but its very much improved. The better I manage AS the less I suffer from fatigue. Mike


Dost thou love life? Then do not squander time for that's the stuff life is made of Benjamin Franklin
Joined: Oct 2008
Posts: 895
Master_AS_Kicker
Offline
Master_AS_Kicker
Joined: Oct 2008
Posts: 895
The need to sleep and the inability due to pain was my regular life before Enbrel, and then after I had to quit it and before I started NSD. I was always in a bad mood, so my poor wife suffered also. Before Enbrel, my only comfort was food, thus my weight ballooned up by 50 pounds (which I've lost since then). Yes, AS sucks big time.

--Greg


AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Getting good results with no-starch diet since 2011.
Joined: Sep 2001
Posts: 8,397
L
Lon Offline
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
L
Joined: Sep 2001
Posts: 8,397
R Barnes-
How are you feeling today.
Strangely enough, the only things that gives me energy is sugar of course, and then the crash; and exercise if I can stand it.

C-Pap helped me sleep. I actually enjoy not having to fight to get a breath.


I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
Joined: Sep 2001
Posts: 6,150
Likes: 1
AS Czar
Offline
AS Czar
Joined: Sep 2001
Posts: 6,150
Likes: 1
Hello, RBarnes:

I remember that fatigue, when I had active AS. So much important time lost to AS! Will never again let this disease back controlling my life to that extent.

Although there is a nutritional component to the fatigue, solving it really requires getting out of nutrient-wasting inflammation first; we need a lot more of everything than average people.

Fix the AS and the energy will come back. Regret both of these things take time and considerable patience.

HEALTH,
John

Joined: May 2014
Posts: 26
R
RBarnes Offline OP
Member
OP Offline
Member
R
Joined: May 2014
Posts: 26
Thanks, all, for the kind replies. It's a comfort to hear from others who are experiencing some of the same things I'm going through. I've made a personal decision (for better or worse I may never now) to avoid the anti-TNF medications. As such, for me, it's NSAIDs and Norco. Oh, and fresh ginger root. Seriously. A few slices a day does more for my inflammation than my Meloxicam. Anyway ...

I ended up leaving work at 12:30 yesterday. My body really left me no choice. Somehow, I managed to make it home awake and then proceeded to sleep for 6 hours on the sofa (seems to be the place where the pain is least).

This sounds odd, I know, but when I woke up, a phrase kept running through my mind: Give up or get up. I don't know where it cam from but the message was clear and I'm not ready to give up. Not even close. This disease is a bully, but I've stood up to plenty of bullies in my life. Haven't lost yet and I don't intend to lose now.

I know there will be many days AS will win, but there will also be days I will win. As I told my wonderful, understanding wife last night: I may go down, but I'm going to go down swinging.

Today, I'm back at work. My SI joints, knees, ankles, hips, back, neck, and ribs hurt like h-e-double hockey sticks. Truthfully, I feel like maybe I lost a barfight last night, but I'm here. I'm going to go home tonight, do some yard work and enjoy the beautiful spring day God has blessed us with.

Thanks again to each and every one of you who took the time to send a few words of comfort my way. Means a lot.

Have a great weekend, everyone.


Dx 2013 RF- HLA-B27+
Meloxicam 15mg Norco 7.5/325 Celexa 20mg
Joined: Dec 2014
Posts: 202
Second_Degree_AS_Kicker
Offline
Second_Degree_AS_Kicker
Joined: Dec 2014
Posts: 202
Hello RBarnes,

Hope you are feeling better.

It's the biggest mistake of your life "avoiding" anti-TNF. May I ask why?

Inflamation and fatigue go hand in hand, a tnf inhibitor will definately help with tiredness and significantly reduce pain in your peripheral joints too, not just spine.

AS destroys cartilage in joints which cannot easily regenerate so you I hope you reconsider your decision.

Page 1 of 5 1 2 3 4 5

Link Copied to Clipboard
Who's Online Now
1 members (1 invisible), 39 guests, and 61 robots.
Key: Admin, Global Mod, Mod
Recent Posts
New recipe website from Janneke
by DragonSlayer - 05/10/22 05:03 PM
Chiropractic care
by jwmson - 04/18/22 01:19 PM
Looking for help dealing with Heartburn
by Magician - 03/11/22 11:15 PM
Uveitis again and I miss you guys!
by Magician - 01/20/22 05:14 AM
Electromyography (EMG) test
by Magician - 10/01/21 04:03 AM
Where did all the AS kickers go? :)
by Didier - 05/17/19 01:06 PM
A silver bullet for an unwanted guest ? A.S
by Duncan - 04/26/18 08:18 AM
Popular Topics(Views)
3,170,914 hmmm
1,234,779 OMG!!!!
640,638 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.026s Queries: 35 (0.008s) Memory: 3.2770 MB (Peak: 3.4820 MB) Data Comp: Zlib Server Time: 2022-05-21 02:36:02 UTC
Valid HTML 5 and Valid CSS