Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group unbearable back pain

I've been dealing with low back, buttock and siatic nerve pain since about a wk before Christmas. I ended up in the er and then with 4 wks of Pt. My Rhuemy said there was not much they could do for me that they would do further testing if I was still having problems in April when I see them.

So I've been just trying to do my pt stuff at home and deal with it. Since Wednesday my pain has been increasing to the point I'm crying. Nothing touches my back pain. I can bearly lift either of my legs, my hubby has to help me get dress. I've tried my pt stuff, tens unit, cyclobenszapine, vicodin and mobic along with ice. Ice seems to be the only thing that gives me any relief.

I wanted to go to the ER this morning since I know I could never make the two hr drive to my Rhuemy in this shape and I could not get in to see my family dr today. But hubby refused to take me, told me to take myself. So I said forget it. I did get an appointment with my family dr for tomorrow morning (Which I will have to take myself to anyway.) Ugh. Hubby said he's sick of taking me he doesn't get anything out of it.

The only time my pain is managable is if I'm laying on my back. This only last for about an hour. Anyone have any idea what I might have done? This is just insane. My husband said it's just part of getting older. I'm 33.

Is there anything I should have my family dr check out? She is new I've only seen her 1 time. Any special test?

Thanks,
Kim

is your PT a manual PT? does she/he do massage, joint mobilization, soft tissue work, ultrasound, adjustments, etc, or "just exercises"? i'd suggest maybe finding another PT. also physiatrists are amazing sometimes if you find a good one. they deal with just this type of stuff. or a pain management center if you haven't been. its hard for me to say, but if its inflammation, would think an antiinflammatory would help. honestly it sounds like when my SI is misaligned. i learned from PTs and physiatrists how to do the isometrics to reposition it; as long as its misaligned, its total misery for me, as you describe. not to say that is what you are experiencing, but it does sound familiar.

and no, this is not what it is like to get old. especially at the age of 33 or 48 or.......... no, not normal. please press to get help. and don't think the ER is the right place to get help. rather as i suggested would be more helpful.

currently its a chiro that helps me in the same way that the manual PTs and physiatrists were. he does soft tissue work.

and for me, wearing a flector patch over my SI joint 24/7, changing it every 12 hours is essential. my SI had gotten so that it hurt most of the time. but the flector patch works wonders. the lidocaine patch there did nada.

thoughts and prayers coming your way

Kim,

I'm so sorry your going thru this, your husband is being a jerk! Do you have another family member that can take you?

If you have felt this bad this long you need to know, I dont know but it could be what I had some years ago inflammed SI'S and that is dangerous it cut my bladder off where I couldn't urinate I was in the hospital for almost 2 weeks on high doses of IV steroids.

If you can go ask for a sed rate if it is up at all see if they will do a bone scan that will probly find the problem.

Hugs,

Lisa

Kim,
I would suggest that your hubby, get on line and chat with one of us guys who have had this crap for years. we understand your pain. It is debilitating and life threatening. You will get a lot of good advice.
Stay the course, keep the faith, stay in touch.

some years back I broke my hand playing basketball in the men's league. I ctoninued ot play for another 15 minutes, with 3 broken fingures, and several in my hand. It did not hurt as bad as some of the back pain I get..

another thought, if its inflammation in the SI joint, then cortisone injections could give you relief for several months. this would also tell you whether or not its inflammation in the SI joints. that's what i did before i discovered the flector patches. without the shots i was a mess, but with them, like night and day, the difference.

no one should be in that much pain for that long without doctors doing all they can to give you relief. so keep pushing forward to find someone who can help you out of this.

Hey there Kim, sounds like your hubby needs an attitude adjustment. He needs to become a part of your "world" whether he likes it or not. You need support and that's what a spouse does, for better or worse. As I told another here this week, communication is key to good marriage when a spouse has AS or any chronic illness for that matter. It sounds like he is in denial. As for you, immediate care for your is most important. Be your own advocate and get an appointment with your Rheumy ASAP and maybe a pain management doc if possible. While you are flared, your PT should avoid too much deep tissue work, but ultrasound, estim, and gentle stretches would help. Tell your doc that your pain levels are unacceptable. Don't sit back and wait until April. You pay your docs to take care of you. I am so blessed that I have such wonderful docs who take good care of me. I pray the same for everyone here.
Cindy

Kim, I'm so sorry you're going through this. I feel for you mightily. Man that SI pain is awful awful awful. And I agree with the others. Hubby is being a jerk!!

Don't push the area right now. Do what you can to ease the pain and get in to see your GP as soon as you can. Extremely gentle soft tissue work/mobilization from your PT might help, but it should be extremely gentle.

As for what Hubby gets out of it ... how about the peace of mind of knowing that his wife is getting the help she needs. The sooner you feel better, the better it will be for both of you. I wonder if making him walk around with a clothes peg attached to his pinkie finger for a day, with no relief, might give him an idea of what it's like to be you.

Warm hugs,

I don't even know how or were to begin to thank you all for your support. I could not get through this without all the incouragement from you all. I just don't know what is up with my hubby, he's normally not like this. He's broken two legs in the past two yrs and I have been right besides him to all but two of his appointments (missed two pt appointments because I had surgery). I don't know why he is acting this way. I wish I could get him to come on this site and read or speak with others, but he wont. Thanks for letting me vent.

I saw my family dr today and she didn't know what to do to help me. She agreed I'm to flared up to try to make a 2 hr trip one way to see my rhuemy. She is having me see a specialist. She wants me to get established with physical medicine and rehab dr. she said this dr is who she sends people to with back problems. I guess this dr is also able to do injections if I need them. So they took exrays of my lower back and I am schedualed to see the specialist tomorrow at 2 pm.

I have to admit I'm exhausted. After my appointment I went to file for energy assistance help and had to sit there for over 3 hours. I known I'm hurting my shoulder, knee and achillies tendon trying to move. I'm grabbing the walls, tables etc what ever I can find to help me get up. I also a little nervous about seeing a new dr. I don't know what to expect from them. Has anyone else seen a physical medicine and rehab dr? She has on my form that I'm being refered for physiatry pm&r what ever that is.

Please keep me in your prayers.

Thanks, Kim

yes, as i said above, physiatrist. that's doctor of physical medicine, rehabilitative medicine. these are the doctors that have given me my life back at times. hope yours is as good as mine. if you read my response above, i talk a bit about what they have done for me.

goodness! i am so sorry that you're in such excruciating pain. i'm glad you saw a doctor today.

i recommend those SI injections. they have given me several months of relief until my joints act up again.

besides taking 800 mg ibuprofen 3 times a day, i have remicade infusions every 6 weeks to control the pain.

re: your husband. it took my husband over 10+ years to realize i was not making the pain up. it took marriage counseling because i was so angry at him. all that time he thought i was trying to get his attention by acting sick. it may take seeing a marriage therapist to get your husband to realize that you are suffering real pain all the time and he needs to change his attitude.