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Joined: Jan 2008
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Sue22 Offline OP
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ok, this is really hard to describe and if you've never experienced it, you'll have no idea what i am talking about because i didn't until last fall and now again.

last fall i reinjured my rhomboid area of my upper back really badly. and again this week, not quite as bad yet this time but fighting that really hard.

here's the thing. i've had worse pain in other areas like the SI joint, pain that has made me scream. this pain doesn't make me scream, but it gives me "physical panic attacks" for lack of a better word. very hard to explain. my head is fine, my mind is fine. almost like my head and my body are disconnected and i'm a third person observer. but when this upper back pain hits, even just a little, my heart starts beating really hard, not fast, just hard, and my stomach starts doing flip flops, all the kinds of physical sensations that one would get if one were very nervous like in a panic attack, but with none of the mental parts of it. and if i can get the pain to subside, then the sensations go away. the worst part is these symptoms are what are waking me up from sleeping. and i'm developing gastritis while i sleep, though last year taking mylanta right before bed did help prevent it from getting as bad as it could be, though it did cause very bad GI issues, wasn't digesting my food, dropped almost 10 lbs in less than a month. but really its the "panic" sensation that makes me feel like running away, makes me feel like i just can't take it, makes me feel like i'm going crazy.

ok, if these sensations sound familiar to you, can you explain what is happening? and more importantly, i need to know what can stop these feelings, because even if i'm not going crazy right now, a repeat of last year just might send me off the deep end.

have a nice day. rainbow



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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I would think its your central nervous system reacting to pain. Its like when you get bad joint pain your muscles all tense up to try and protect the area of pain.If the pain is in your upper spine area then your head will react to the pain. I get very dizzy and my muscles all tighten in my skull and neck area and even my vision goes blurred.Your stomach will be affected because of your sense of balance almost like vertigo.

Kevin

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Hi Sue

"The Rhomboid muscles are often overlooked, but they are frequently a location of Trigger Points. The Rhomboids are very thin muscles which have the tremendous responsibility for much of the movement and support of the shoulder blades. Due to the enormous amount the shoulder blades are used daily, the Rhomboids are often overworked and over tired, leading to chronic Trigger Points".

I get pain often, on the upper right side of shoulder down my spine and only occasionally on my left side.

It is very painful, and seems to take my breath away. When I have upper back pain, sometimes I associate this pain to be part pleurisy. Other times the pain goes further down my shoulder down my spine, to the center of the back. I have much GERDs, and GI issues, which causes breathing issues.

I don't know if these 3 things are related. As these pains are familiar now, I seem to role with the punches.

Just a thought, GERDs related (upper GI - leaky gut problems) - try cutting out all sugar, see if that helps. I also have put the head of my bed up about 4 inches. Also I stuff pillows behind my back, in front of my stomach, and between my legs. These help stop the constant moving. I am finding it helps with the cough, associated with GERDs. Still have pain in center upper back though, think this is AS related.

Any panic attack I may have from this, is what I believe to be the result of oxygen depreviation.

Hugs
Gerri

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Don't think I have any solutions, but wanted to tell you that I hope you get better and don't have one of those spells like last fall.


DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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To help me with anxiety IBS and other stuff I use tapping

http://www.youtube.com/watch?v=6i33V2EcVlY

In fact i do this daily, and usually when i am feeling calmer. This has reduced my nervousness when i have flares and it has helped me cope with flares a lot better too

Love joanne


My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated
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Have you seen your doctor? If not, see one!
Donna


Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
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Sue22 Offline OP
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hi donna,

yes, that's usually my response to anyone as well. last fall i saw all my doctors, went to PT twice a week for ultrasound, went to my physiatrists for trigger point injections even past the point of there being any to inject, begged my GP to help me, got an emergency appointment with my rhuematologist, tried acupuncture and the only three things that helped were the ultrasound, staying out of the dam car, and the IF stim machine that insurance rejected as "experimental", so after 3 months of nobody helping me, i bought a home ultrasound unit and stayed out of the [*bleep*] car. but i had to be out of work for 6 months and i really don't want to repeat that. this is not an easy problem to solve, with that, i'm still going to try again, this time go to the new GP and see if an orthopedic surgeon will treat this like (s)he would a torn rotator cuff, or something; need a new approach because none of the doctors last year could do a [*bleep*] thing for me.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jan 2008
Posts: 21,346
Likes: 2
Sue22 Offline OP
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hi joanne,

this is most definitely not anxiety. it is pain and the pain is causing the other symptoms, like when burn victims end up with gastritis and die from bleeding ulcers, its like that, only not quite to that degree. trying to understand why severe pain does this and then if anything can be done other than treating the pain, so i am trying best i can to treat the pain, but if there is some other drug that turns off this physical response that would be great too.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jan 2008
Posts: 21,346
Likes: 2
Sue22 Offline OP
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Likes: 2
thanks rumble! thanks for thinking of me. heart



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jan 2008
Posts: 21,346
Likes: 2
Sue22 Offline OP
Very_Addicted_to_AS_Kickin
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hi gerri, you are right about those trigger points, back in the late 90s, early 2000s, i had a lot of triggerpoint treatment, so last fall i thought that's all i needed, but the physiatrists told me there were really no triggerpoints to inject, still we injected a few places anyway, but no, i think i tore something back in 98, it partially healed with all those triggerpoints but this time i tore it again, that's what it feels like. i so wish the triggerpoint injections could be the solution this time, as the first time they were nothing short of miraculous! still the ultrasound helps some, regardless of the cause.

as for the GERD, i don't have that, but do have chronic gastritis that is usually under control, until the pain levels get too high, then the pain causes the gastritis. i just wish i knew how to block this other than taking mylanta before bed, maybe i just need to start doing that again?



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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