Hi, First off, I'm so very sorry to hear that you are in so much pain. Beleive me, I know how very frustrating and painful this disease is. My Dr. Tried me on Enbrel and Humira and I didn't get enough releif from those two medications. I have been on Remicade now for almost 2 years and it has really helped alot. I also take a medication called Avinza which is a 24hr Morphine pill with wonderful results. It for me is non-drowsy and not mood altering either. Just takes away alot of pain. Unfortunately, I still have enough pain and have alot of your symptoms as well. I had to go on Social Security Disability after being a Pediatric Nurse for 29 years. I'm 52 now. I've been on disability for 2 yrs. Now. For me, the biggest reason to stop work was the extreme fatigue/weakness and the fact that I didn't want to medicate children while taking Morphine myself. I did just start a MILD yoga class and I am amazed but, I can actually do it and it does make me feel better. As far as the TNF making me sick, I haven't noticed much change. The only thing I have to watch is if I get a cut..it always seems to get infected! Hangnails,paper cuts etc..
     If you don't have a pain management Dr. , I would highly recommend one. Also, massage helps me alot. I hope you feel better soon and get some releif...Sincerely with Hugs...XXXOOOElaine on Long Island

I've been on one TNF-blocker or another for the last 11 years. The difference for me is huge. Currently I take monthly Simponi injections.

The TNF blockers have all reduced the stiffness and joint pain to the point where I don't notice such things nearly as much, and can do the normal activities of daily living - maybe a little slow, but at least I can do them!

The only side effect I have suffered from was one bout of shingles about 7 years ago. Yes TNF-blockers work by shutting down a part of your immune system, so that your body stops fighting itself. A couple of months of pain with shingles was minor, but otherwise the productive years have been HUGE for my life.

Sorry to hear of your pain, sending thoughts & healing prayers.
For me, I've gotten good at ignoring pain. It helps me to work. It also helps to stay active. For me, light weights, spin class and yoga. With that said, tons of pain in hips, back, chest, shoulders and neck. But, 28 years after diagnosed, pain is managable without meds. I hear 'burning out of pain' is common. I no longer wake up super pain (except from leg nerve). Brother died of AIDS & i had agraniolsitosis from meds, so i refuse any meds that reduce immune system. Exception of being able to ignore pain is nerve pain in one leg, that's acute and demands attention. It's crudy, but I think you need to find your path. I recommend assembling a team: Rhumy, nutritionist, chiro, therapist/clergy. I never got them all in the same room, but I did let them know they were on my team. Your not alone, if that helps?

I have pain in my lower back, shoulders, hands, feet, ankles, knees, hips, chest/ribs...pretty much everywhere.  My neck/back and knees are the worst.  I take norco for pain, muschle relaxers, and weekly enbrel injections.  So far the enbrel hasn't made any difference for my pain/stiffness.  I have been having some neurological symptoms (prior to enbrel) that seem to be getting worse with the enbrel but haven't gotten sick from it yet.  Waiting for a call back from the rheumy to see if I can continue enbrel with the neurological stuff getting worse.  Other than that I have had some site reactions..redness, bruising, itching.  I don't work but I do have a toddler at home and babysit another toddler full time.  I don't think I could handle a regular job right now.  The days that I am very active I do feel better than the days that I am home more but I think that is mostly because I tend to be home more when I don't feel well enough to chase toddlers around all over town. Hoping the enbrel does something soon because I've only got one more year before I go back to work.  If things don't get better I have no idea how I will keep a job.  My husband is pushing me to go on disability but I am nowhere near that point yet.  If I were you I would at least try enbrel, humira, remicade, etc.  If you are in that much pain and tired/weak it's worth a shot.

I have pain everywhere...bilateral all joints. Neck and feet are the worst. I work 40+ hours a week. I find I am less tired and less pain when I am working. I think staying busy and not focusing on the fatigue and pain are a great way to manage my pain. I was on vacation a couple weeks ago and couldn't make it through the day without a nap. I have been on humira for a couple months and have had minimal relief although major relief of GI issues. I am a nurse and exposed to all kinds of stuff and have been lucky enough to have been sick yet.  Mind over matter and if you spend your day focusing on the pain and fatigue you will have no joy in life!  Good luck and keep your head high!

How often do you take enbrel? Did it make any difference? Do you take other medicines. I have pain on and off throughout the day in my hip/ heel/neck/si but not horrible. For me the TNf took away the unbearable morning pain. If you just started enbrel it takes awhile to kick in.

Yes there are times where you hurt everywhere. Inflammation in the spine can lead to all kinds of nerve pain that show up as pain in other parts of the body. Depending on how far along your disease has progressed will affect your work time and if your disease is fully blown, you likely won't work anymore. The meds can allow for increased infections etc but overall we with AS are better off with them.

Yes I have pain all over and am on pain 24/7 as well the meds help some the TNF injections help and the other procedure I am getting done help as well. The severity of pain varies, I know there is no cure so I do anything ican to manage the symptoms as much as I can. It hard some days aren't as bad and other days are bad. There are lots of things that affect the symptoms and flare ups. Have you tried nerve blocks, or nerve burns. It might be something that can help you. And yea TNF does lower the immune system, there are things you can do to help keep from getting infections. Like probiotics, which I use and seem to work for me. There are many other options out there as well. I hope this helps.