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#412197 09/13/10 12:50 AM
Joined: Feb 2002
Posts: 1,342
gd7405 Offline OP
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Hey all. Just wondering if there's anyone else out there who've had such severe lower back pain they can barely stand or walk for no more than just a couple minutes at a time? I'm pretty sure its not going to the si, because its centralized in the small of my back. I haven't collapsed yet but its coming VERY soon. I saw the Neurologist Thursday, but he prescribed Lyrica. I took 1 capsule and knew I'd had enough. It turned me into a zombie that I'm just now getting the effects worn off. Not to mention that I have Bi-polar disorder so it really made that fly off the charts too. He wants me to get PT and see pain management specialists. I'm just wondering if anyone else has experienced anything else and what was the outcome?
He did mention that if I failed to respond to treatment that they may resort to surgery, but to do what? I'm not even sure what's wrong.

Anyway, thanks for any feedback in advance.
Glenn


"If God were small enough for your minds, He wouldn't be big enough for your needs."
gd7405 #412209 09/13/10 02:10 AM
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Hi Glenn

I am not yet diagnosed with AS but I do get severe backache like you describe, where I cannot stand up or walk.I cannot really advise you regarding medication because I do not know enough about any of them, but I do know that on these days if I sleep on a quilt on the floor, this sometimes can help

So can lying on the quilt with my hands and fingers stretched out, placed underneath each side of my hips. Basically so I am lay on the top of my hands with my fingers spread. Then with my knees lifted off the floor I gently rock my legs together from side to side.

I know this may all sound a bit corny, and you probaly even know all this anyway, but I thought I would tell you just incase you had not tried it, because you never know it could help

Love Joanne


Last edited by joannesford; 09/13/10 04:59 AM.

My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated
gd7405 #412212 09/13/10 02:14 AM
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Yeah, surgery for WHAT is a great question. Have they done any kind of MRI on you??

I have been doing PT since May and I must say that my progress has been nothing short of a miracle. I went there because it was my Doc's idea, and I seriously doubted any positive results. I couldn't have been more wrong. Manual PT along with certain exercises they gave me have been amazing. I also bought the Trigger Point Therapy workbook to continue to progress at home as well and the stuff really works.

So in my un-medically trained opinion, I would recomment PT, but I think the PT might need to know what they are dealing with (x-ray wise) before they can safely touch you.

Good luck. I haven't had the low back thing (yet) but I have had to suddenly lay on the ground on my stomach because of sciatica and I was 6 months pregnant at the time. OUCH on so many levels.

Take Care,
Donette

gd7405 #412242 09/13/10 04:52 AM
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Very_Addicted_to_AS_Kickin
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its hard to say what the problem is,

like for example, my upper back problem that kept me out of work for months last year and 4 doctors (GP, rheumy, 2 physiatrists (doctors of physical / rehabilitative medicine), a PT, and chiro couldn't address,

turned out to be a rib out of place that a different chiro fixed within seconds by pressing a rib that was stuck under the shoulder blade to get it out of there. who knew!

certainly not the docs and therapists last year! last year they did ultrasound, triggerpoint injections, lyrica (did nothing for me but give me a nasty migraine). one of the physiatrists ordered an MRI of the c-spine and t-spine, and though i have some spondylosis (and some other fancy terms for degenerative changes) and one of my thoracic discs is slightly protruding, neither really explained my pain. one thing that did help the pain was using an IF stim machine until the symptoms subsided (a tens machine for me is way too wimpy, but the IF stim machine is much more powerful, drives the signal down into the tissue where it can actually do some good).

what kind of pain is it? does it feel like muscle spasms? ice or heat usually help those as do muscle relaxants (though they always seem to exist for some underlying other reason ( for me in response to joint inflammation)).

does it feel like its sharp pain in the spine? could be a disc problem, but if they suspect that, then i'd think they'd be ordering xrays and/or an MRI if they suspect that its a disc problem.

i do think getting xrays or an MRI would be a first step to see iff there is anything to operate on. followed by PT and/or pain management (that's where one of my physiatrists is). also a chiro, not one to jerk the spine around (heavens no!) but one that does other sorts of things (the one i see now does something called active release technique and it is helping my back so much). i've also talked to one who could realign things using an activator. i don't know if i want that done, especially to my neck, but i will say every time he found a spot and said it was misaligned, it was tender to the touch, so maybe there is something to that. and i saw another chiro in the past who did ultrasound similar to what PTs do for me, but its easier to go to a chiro, less insurance hoops to jump through.

also may i ask where in the small of your back? my SI joint pain can be in a variety of locations. sometimes i think its more where the L5-S1 come together causing my problems, othertimes its definitely further down in the SI.

so sorry to hear about your pain, hope you find relief soon!



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)
Sue22 #412247 09/13/10 05:12 AM
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Hi Sue & Glenn

I have just opened my emails and one of my friends from the Fibro group that I attend has sent me this

http://bl150w.blu150.mail.live.com/?rru=inbox

I have not really had much chance to study it but I do kow Dr Mercola does not usually recommend rubbish

I have heard of the Bowen technique before but I have never used it. I am just wonderig if there is anything on Youtube about it. I think I may take a look

By the looks of it it does look like it may be cheaper than a lot of other therapies and I am thinking rather than buy the DVD I might see if they have it in the Library

Love Joanne

Last edited by joannesford; 09/13/10 05:15 AM.

My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated
joannesford #412249 09/13/10 05:18 AM
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Donette

My physio has also been a tremendous help and she is one reason why I am persevering with the Rhumatologist I am with. They come as a package and it would be sad if I was to loose the Physio too soon, she has been very helpful and kind

I guess I forget about the good folk when I am off on one

Love Joanne

Last edited by joannesford; 09/13/10 05:19 AM.

My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated
gd7405 #412340 09/13/10 08:22 PM
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Can you describe the type of pain more? I know at times I have had really severe muscle spasms - pain that just grabs you and makes it impossible to move. I've tried all kinds of pain relievers and none touch it. The first time I got it really bad I ended up after several days of it making an emergency call to GP when I just couldn't get up off the floor having slept on a quilt on the hard floor to try and get some relief. She finally gave me some diazepam and that really did help. Once I had the spasm under control, then the NSAIDs could do their work to calm down inflammation.

Like other suggestions though, I would say you really do need imaging of some sort - if this is a protruding disc or other nerve impingement then you want to deal with it before it does long lasting damage. If it is a neurosurgery issue, then the sooner you get referred the better.

gd7405 #412342 09/13/10 08:25 PM
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My gruesome pain happened when I sat. I could stand or lie down, but no sitting! I'm really liking cymbalta & LDN for pain & mobility, but I don't know how either of those would affect bipolar... good luck to you! I hope you find some relief!


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

cemc #412692 09/16/10 01:21 AM
Joined: Feb 2002
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gd7405 Offline OP
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Thanks for everyone's input. I really appreciate it.

When I stand or walk for even short periods of time, I have a severe pain in the small of my back that makes it almost impossible to walk. Just going for a short stroll in the mall requires me to know where the next place to sit is going to be. In fact the last time I went to the mall with my son, I thought there would be NO WAY I'd make it to the car. The pain is ONLY in a very small spot right in my spine. There is NO pain down my legs, but they do get VERY weak and that's why I find it hard to walk.
I had an MRI done back in May but it did'nt really show anything, but the pain has increased since then exponentially. I saw a neurologist on Thursday who told me to get PT and see a pain management specialist. Oh, and by the way he gave me a script for Lyrica which after 1 pill I was DONE with. After searching the internet for a day or 2 (not trying to be my own dr.) the closest symptoms I could come was for a Fractured Lumbar Vertabrae. Not sure how I would have gotten it. The only trauma I suffered was my car accident in December, but I don't think it would've been that bad. I went to ER yesterday, but that dr. was a jerk and just sent me away with more pain meds and told me I should've mentioned it to the neurologist. He wasn't going to usurp his ideas. So after all that...............WHAT THE HECK SHOULD I DO?? Does anyone think I should try to get back into the neurologist and see if he'd order some x-rays or what. I just don't know what to do and I feel like I'm gonna collapse somewhere very soon!

Thanks for any feedback and listening to my diatribe!
Glenn


"If God were small enough for your minds, He wouldn't be big enough for your needs."
gd7405 #412700 09/16/10 01:46 AM
Joined: Jan 2008
Posts: 21,346
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Very_Addicted_to_AS_Kickin
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yes, i'd go back to the neurologist, but maybe also line up something with an orthopedist and/or physiatrist (doctor of physical / rehabilitative medicine, often found in pain centers, one of mine is in a pain center, the other is in a neuro department).

i know when my SI is bad, i've had pain lower, i've had it higher. last week it was just to the left of the tailbone. this week its exactly where you are describing yours. other than the SI, for me it seems that i have issues with the joint where the L-spine and S-spine meet.

right now my only solution for my SI that was working for 5 months straight with one slight bump in the road currently is to wear a topical nsaid flector patch over the area.

even if your problem is different, maybe getting a topical nsaid flector patch or using topical nsaid creme (voltaren gel wasn't strong enough for me, i use a triple nsaid KIP gel made at the compounding pharmacy). or going to PT and letting them do various things for it, ultrasound being one possibility. or a chiro, though not one that "cracks the back", maybe even just to see what they think the problem is. often i'm finding chiros and PTs can ID mechanical issues better than most of my doctors, except the physiatrists are really good at it as well.

just hope you get the help you need soon. when i have an issue that my current doctors and practitioners can't address, i go to different kinds of doctors and practitioners until i find someone who gives me relief.



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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