Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group chest stiffness, malaise, not feeling good

i dont have an AS diagnosis yet...and as i have posted here earlier...two or three docs have told me AS, while 5 or 6 have said no AS...and their response has ranged from..."at least there is no sign as of now"...to..."you wont get it in this life time". but for the past over one year i have bad shoulder blade, shoulder and chest stiffness...it makes me dizzy sometimes and a feeling of being off balance. it hurts and makes me feel sick...like i am not well...i dont enjoy that free feeling of having no issues with your body...i feel sick. especially if i if i pull my shoulders up towards the neck i feel that stiff pain in the shoulder blades and shoulders and chest. if i breath in deep i feel the pain the shoulder blades at the back and outer edges. and i feel unwell. like i am not ok. fluish. dizzy. fatigued. my heart thumps if i climb up the stairs when i am having this stiffness. else i dont get that heart thumping, tired feeling. i am hla b 27 positive. nothing on scans, mris. esr 9 as of now. blood work normal. mri shows blateral nerve compression.

this is my cervical mri report:
MR scan reveals straightening of spine. the vertebral bodies are normal in height and marrow signal intensity. margnal anterior osteophytes are seen from c4 to c6. posterior osteophytes are seen at c5-6 and c6-7 there is loss of t2 hyperintense signal involving c3-4, c4-5 and c5-6 suggestive of disc dessication. chronic disc bulges are seen at c5-6 with posterior osteophytes causing mild thecal sac indentation more to left side. no intramedullary cord signal changes are seen. there is uncinate process hypertrophy seen causing mild b/l neural compromise at c5-6 the posterior elements including facet joints and ligamentum flavum are unremarkable visualized spinal cord is normal in bulk and signal intensity spinal canal diameter 15.8 mm at c2-3, 13.9 mm at c3-4, 13.2 mm at c4-5, 10.9 mm at c5-6 and 11.2 mm at c6-7 no abnormal pre or para vertebral soft tissue is seen. impression: cervical spondylosis with early disco-osteophytic changes at c5-6 causing mild thecal sac indentation more to left side with b/l neural foramina compromise. no intra medullary cord signal changes seen.


i hurt badly and feel stiff and tight in the upper chest and back and shoulder and shoulder blades, feel unwell. no diagnosis. i dont know what is wrong. and dont know what to do.

see...i am still sitting in office...been about three hours since i posted here...now the stiffness is gone on its own...feeling ok....earlier i was feeling like i need to get to a doc soon...what the hell is this? is this how it happens? comes and goes in this spasmodic manner?

Hi Disc and welcome to KA>

I'm glad to see the episode you were experiencing eased. From the damage in your MRI report (I am not a doctor and no expert), with all the osteophytes, it's possible that the changes to your neck vertebrae are causing muscle tension in the shoulder and chest area. It's also possible that there is more damage occurring. You might find that icing helps. Or heat on the muscles.

Have you seen your doctor since this report? What did he/she say?

Hugs,

for me it doesn't happen that quickly. i mean it comes on quickly but then stays and stays until it gets treated. days, weeks, months. of the feelings you describe.

in the beginning before i found someone to treat the symptoms i'd be like that for months at a time. it was horrible.

i did go from doctor to doctor to find out what was wrong.

but the best thing that ever happened to me, 10 years or more before a dx, was a neurologist sending me to a PT, a manual PT, she was wonderful. while we didn't determine what was causing my problems, she could help my symptoms. a lot of ultrasound. ice and heat. soft tissue work. manual traction. then she sent me to a physiatrist. have worked with one ever since. i needed trigger point injections (for an injury that never healed properly, but rather lots of adhesions instead - so not everyone needs these) and a muscle relaxant (zanaflex) and a cortisone injection into my right SI joint. these two women gave me my life back. i can not even begin to describe what a difference they made. they helped me with my upper back / neck problems and my SI joint problems and my plantar fasciitis and my torn rotator cuff and..........

then i moved and for three years could manage things with the heat and ice when i flared and nightly zanaflex (more often when i flared).

then i flared badly and needed not only PT and physiatry, but also a dx, so that's when i tried very hard for the dx.

i finally got the dx about 4 years and 4 rheumies later.

but in the meantime, i always worked with my physiatrist and PT and when needed orthopedists, my podiatrist, hand surgeon, etc.

i think it is a two pronged approach: rheumatology for dx and meds, other doctors and PT for managing the symptoms. even if they can't decide on a dx, they can treat and thus partially manage the symptoms.

but the last part hasn't been enough for me, hence why i think you also need to continue to pursue the dx.

2 years ago, my upper back got infinitely worse. didn't know what was going on. neither did the PT, physiatrists, rheumatologist, GP. for three months i was basically useless. but after 6 months, it slowly resolved itself. then last year it happened again. i knew going back to the same people would be useless like the year before; found a chiro, he's been a lifesaver. though last week it happened again and so far he hasn't been able to fix it, but has at least given me a little relief. plus i've had my husband doing ultrasound on me every morning and every night. that plus not sitting, not laying on it to sleep, and lots of ice are getting me through.

so, as kat said: ice and heat. i really love the gel ice packs like the PTs use (i get mine from colpac). and i have a heating pad that i use in the recliner a lot and a heated mattress pad. the heat helps me from having problems more often. the ice is when i'm in acute pain from this.

i also have a home ultrasound machine. worth every penny.

i used to go to PT. now i go to a chiro that basically does much of the same sorts of things.

i use a muscle relaxant every night and as needed.

i only sit on a swopper chair to work.

i only sit in my old 95 saturn to go anywhere by car.

i'm never in the car for more than an hour or so.

i take zanaflex and pillows with me to: the dentist, for scans, when i fly.

i'm very particular about how i sleep (for me that's usually flat on my back with pillows under knees and a flat feather pillow for my head so my neck is completely neutral). used to sleep on my side, but SI joints prevent that in me. but when my ribs are out, laying on my back is out, so been trying to sleep sideways in the recliner: neck killing me. but this too shall pass.

used to be, if i did all these things and more, i could manage pretty well. though lately this yearly "ribs moving around thing" has me pretty terrified. and exhausted.

and i only have undiff spondy.

and some damage in my spine, and SI joints, but not a huge amount either.

in conclusion: a PT and / or physiatrist may be able to make you more comfortable. even if that only manages things, that's better than nothing. or pain management, some here go there as well. one of my physiatrists was in the pain clinic.