Hi all!
I'm brand new and so glad I found this site! I just found out totally by accident that I have AS! No one told me but they were treating me for it!

Due to a really horrible new rheum., I'm off my meds and in a ton of pain. I went to an urgent-care clinic and they were asking when I last had lower back and hip MRIs. I knew it had been a couple of years at least, so I looked through my med. records when I got home. And it was then that I discovered radiology reports stating that I have sacroiliitis due to spondyloarthropathy and enthesopathy of the hip. I looked up those words, the symptoms, treatments and here I am.

So since the new rheumy decided to take me off my meds to see what happens, grrrr, I'm in a huge amount of pain in my ribs and all along my spine. The scary thing is that I'm having trouble holding up my head because my neck hurts so much and I feel weak. I haven't been able to move my neck very well lately but this is new.

Have any of you had this happen and, if so, what did you do about it? I will be calling the rheum's office in the morning but he's 100 miles away and I can't drive that distance like this.

Thanks for any help!
Julie

Welcome Julie. Sad and happy you found us It's a big family here and very helpfull. On that note: I just finished a very bad flare involving my neck and pretty much my hole right side. My neck acts up all the time to the point that im paralized. when this happens I just try my best to relax and ice and hot presses.
You need to get back on meds. GO to a clinic if you cant see rheumy and see if the doctor would be willing to prescribes nsaids. even bring your test results to prove you are not just looking for pills. I really hope you find relief soon Ive always said Id rather have anyother part sore other than my neck definately the worse I think.
Take care
Nat

Hi Julie,

I can relate to the feeling of "Not being able to hold your head up." Some days I am good and other days it is so much hard work and exhausting just to hold my head up. The pain in my neck just doesn't let up. And also no my arms are both so sore, that it is impossible for me to lay down and read a book. As the muscles in my arms scream at me after about 10 mins.

It makes life so difficult when even the most simple things we take for granted, become so hard to manage.

Cheers Carol

Thanks, Nat and Carol! I don't like to take narcotics and I avoid it as much as possible but I have been taking Norco this weekend to try to keep the pain at a minimum.

Tomorrow is going to be hellish. I'll be having 3 MRIs done so I'll have to lie still on that table for about an hour and a half.

i have pretty significant bone spurs in the facet joints along the left side of my neck, so when i go into a flare and i have increased inflammation there, its pretty awful: neck and upper back and occipital muscle spasms.

ice and heat, alternating is best for me. ultrasound - used to be through a PT's office, now i have my own machine and my husband does it for me.

manual traction. that one is ultra important for me. used to have a manual PT to do it. but couldn't find a comparable PT up here when i moved, but a year and a half ago i found a chiro that does the same for me. manual traction, very gently helps "pull" those discs apart and helps release all that pressure on those nerves.

i had cortisone injections into the area this past christmas break. very helpful for about a month, but too temporary, so for now, not getting a second set of shots.

finally couldn't battle this flare i'm going through now and so today i started a 6 day pred taper. and my neck feels a lot better. so pred can help short term. that wasn't my worst problem this time, but i can turn my head with a lot less pain than normal.

once the flare of the neck is over and the muscle spasms have settled, its so important for me to do neck strengthening exercises to build it back up again. that helps it not flare too often unless i'm in a bad overall flare. used to be that swimming was a great exercise for my neck, turning it side to side, lifting it out of the water. but only once it was out of the critical stage. now that i can't swim (due to my SI), i'll lay on my bed with my head over the edge and lift my head up, one side, then the other, up, and down as well. that set of exercises, simply lifting my head against gravity works much better than the isometrics i was shown in PT. but that's more of a getting back to normal and maintenance exercise, definitely not when things are critical, as they are for you now.

if i were you, i'd do the ice and/or heat. and ask for a manual physical therapist. the PT should know what is right for you, be it gentle massage, gentle manual traction, etc. get someone to drive you while you are in this critical state. ask for some anti-inflammatory, be it nsaids if you can take them (aleve works awesome for me but it causes gastritis and edema and so i can't take it for more than a day or two) or a quick 6 day pred taper, just something fast. longer term, i'd ask about the dmards and/or biologics if i were you.

i've also had trigger point injections in my upper back muscles, occipital muscle to quell the muscle spasms to help with the overall area. not everyone has triggerpoints, but if you do, the TP injections have been a really big help to me. i'm supposed to go get some more next week in my upper trap that runs from my neck to my shoulder (that should help my neck some) and in another spot behind the armpit where a number of muscles blend in together.

Thank you, Sue. Ultrasound helps me, too. I've been cycling in and out of physical therapy for a couple of years now. I wonder if insurance would foot the bill for an at-home ultrasound machine for me?

I can't tolerate ice. I have Raynaud's Syndrome and cold especially hurts my fingers and toes but I feel pain from ice acutely everywhere. Heat helps, though.

Yoga seems to help my back but it's impossible for me to do when it hurts to take a deep breath, as it does now.

I'm about to start another round of PT. I'll mention the traction to her and see what she says. LOL, I may need to switch physical therapists. This gal is very young and seems super-nervous about treating me because of all of my health problems. I may need one with more experience.

i don't know if insurance would pay for home ultrasound or not, but the way i figured it, i was paying $25 per PT visit, and was going twice a week when things were bad, so the ultrasound could pay for itself in almost no time, plus i could have it done every day. and i didn't have to get in the car and go to the PT; at that time when i bought it, getting in the car made me far worse, and staying out of the car helped me get better, another reason for me to get one.

this is the one i bought with their gel:

http://shop.mendmeshop.com/product_info.php?products_id=32&osCsid=ma7mnfajq5pso8ofnc5gjiltq6

i love it! it mimics the PTs US pretty well. have had it for about 2.5 years now. months go by when i don't need it. but for when i do, its been a godsend. having my husband use it on me every morning and every night for weeks on end when needed.

sometimes i use voltaren gel with it as well.

and if ice isn't an option for you, the heat will help the muscle spasms a lot, but i've found i have to be modest in how much i use as too much will increase my inflammation, but heat is great for muscle spasms, as it seems you have discovered.

i was really lucky that my first PT was so good. when she went on maternity leave, i found out just how good she was. her replacement couldn't help me the way the first PT did. i had to shop around and was lucky that i fairly quickly found another just as good, if not better. but since i've been up here (since 2003) i never did find an equal. but my chiro is very similar to those first manual PTs. he's not like the other chiro's in the past who i only let do ultrasound on me. he's so gentle with my neck, but its so effective. gentle manual traction, should be fine, i think, a number of people here have said they have good effect with it. i do think its important to find someone who seems to know just how much they can do with us. you are right, i've found PTs and chiros who either are afraid to touch me or who are too aggressive and don't listen to me when i warn them, but there are a few out there who seem to be good at getting to know us and our bodies pretty quickly, not afraid to try to help us, but cautiously starting out. i'm lucky i guess that gentle treatments do a lot for me. i always have them start out with the gentlest method until we find what works.

another thing that helps my neck: topical NSAID gel / creme. the voltaren gel by itself isn't strong enough for me, but the compounding pharmacist recommended that i get a script for KIP gel for him to whip up, and so i did. its 10% ketoprofen, 10% ibuprofen, 2% piroxicam.

sounds like you've been through this before and have a lot of good experience to go on. just sounds like either your PT needs to learn better how to work with you, or as you said, maybe a more experienced PT. the one i was going to up here before i bought my own US, if she had just felt me, just touched me, she may have been able to help me more; turns out i get ribs stuck under shoulder blades and someone has to gently get them moving again and "unstuck". within 3 months, the PT never knew. within 30 seconds my chiro not only figured it out, but fixed it.

only you can judge, but when i'm in a bad flare, i cancel everything that doesn't have to be done right that moment and that won't help me short term. don't know if you can just put it off til this flare dies down. can't imagine going for MRIs like that.

LOL, that's why I've stayed awake all night. Not that I could sleep well, anyway. The pain isn't quite as bad when I'm moving and I'm taking pain pills, so by the time I have the MRIs at 7 a.m., I'll be tired and woozy. I'll probably fall asleep in the machine, haha. That's the plan, anyway.

good luck with the MRIs!

LOL! i always fall asleep in the machine. i take zanaflex about 45 minutes before i go in. that combined with the white noise (earplugs only drown out so much of that) puts me out every time, til they talk and wake me up.