I am having debilitating fatigue all the time. It's like a wooziness that makes me feel like a a big noodle. Can't drive. Can barely work, and I have an easy sit down job. Just started remicade which I felt the best all year for a few days but then it just wore right off.
I know I won't get disability, not that I don't just wanna feel good and kick *** all the time, but I'm on the cusp of a financial downward spiral that's gonna really stink.
Anyone else feel like this? Nothing is helping.
Call your doc. Remicade has about a 6 week half life and shouldn't wear off that fast. BUT, you can develop anti-biodies to these drugs and they can stop working...fast. Like you took nothing. You may need to be switched to another drug.
I have Ra and not AS but I got worse on Enbrel, had an immediate allergic reaction to Humira but started on Orencia with great trepidation. I've been on it for 3 years and it has been GREAT!
So call your doc and let them know it just stopped working. It may not be you but the AS and your body working against the Remicade.
PS...RA makes you have that fatigue too...like a wet dish rag.....and you know the drugs are working when you have some energy again!
The Following User Says Thank You to jennybyc For This Useful Post:
I was searching for "brain fog" and found your posts. You had written that another poster's symptoms sounded like yours, which were like mine. Now I see that after a few months you post about AS. Is this what they finally found out? If so, how was it diagnosed? I have many symptoms you share plus back pain/burning. I would love to hear back from you.
Hey thanks Jenny and Brenden. Yes AS is what they diagnosed me with. I am also being treated for a C-diff infection right now too. I am also doing physical therapy for my neck and back too. Yes Brenden I would be more than glad to talk to you. Do you want to call? Let me know. I'd dig that.
Wow Man you've been around the block! Sorry to hear that. Well, in 2002 I was diagnosed with ulcerative colitis and had to have my colon removed. That takes 3 surgeries over the course of a year. While i was hospitalized the first time in 02 I got a fuzzy feeling that came over me and has never gone away. The docs all said i was fine so I figured I;d just keep going til i fell down.
Well on jun 18th of 11, I fell down. I didn't pass out, but it was like someone just pulled the plug on me. I slowly got more dizzy til my legs just went out and i sat on the floor. The emt checked my pulse/pressure, o2 level, sugar, temp etc. and said he couldn't find a problem but since i still didn't feel well i should go to the hospital.
I've seen a cardiologist, ENT, and neurologist. One sent me to a physical therapist who said, without examining me, that I had a bulging disc in my neck and began an exercise program right away. I quit that after a week and a half cuz i couldn't duw to the increased pain and dizziness.
so i hit up my GI for giggles and it turns out i have a c-diff infection which i was treated for. I was telling hi9m about my neck pain so he said to see the reumy. My hla-b27 marer was positive so they did x-rays and saw that my back is starting to fuse and that i'm positive for AS due to my autoimmune digestive problems.
They started me on Remicade I just had my 3rd treatment but it doesnt seem to do too much. I still wasn't feeling too hot digestively so i checked with my GI again and after 2 negative tests for cdiff, the 3rd came back positive. So i'm currently being treated with a new med for that.
The pain I can handle but its the wozziness and fatigue that are killin me. I know it could be worse for sure. Im not whining, i just would like to be able to fix this ya know? Hit me up again anytime guys
Thanks for the story. Well, it seems you have your share of problems! That must be difficult. How old are you? I have been reading wher Colitis and AS seem to go hand in hand. I have also read where brain fog sometimes follows a major surgery for some reason, and can remain for a long time. I have no insurance and have been mainly responsible for bankrupting my family due to all of my medical bills. Since I work with my back (I am a painting contractor) it makes work (when there) nearly intolerable. I would love to get to the bottom of all of this so I can get my mental energy (very limited as it is) back on things that are more important, like earning a living with my mind instead of my body (now 46). ;-)
I'm 36 now. But thinking back I had some terrible leg / hip pain when I was in my early twenties. I actually started feeling fuzzy before my surgeries actually. I have a good friend who is the same age as you who has the same occupation too! He's had AS since he was 4. His went undiagnosed til he was 29.
His neck and lower spine are fused. He said that you just have to take things a day at a time. He works for 4 or 5 hours a day then goes home to rest. He doesn't have a social life to speak of. He told me that the only thing that helps him is a nice hot shower and some tylenol. Thats it.
I understand the money thing. I've been selling off my things to get by along with borrowing money too. I know it could be way worse and I keep that in mind. I have a friend who fell thru a skylight 40 feet in the air. He's in a wheelchair now and has many health problems too. However, he has a great outlook on life and a great family around him.
Well, I'll be talkin at ya later! Take care!