banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Kickas Links
·HOME
·Forums Main Index
·Register!
MEDICAL CENTRE
·Medicine Contract
·AS Patient Guidebook
·Pain Map
·Disease Modification
·Ask your doctor
·AS and RA Papers
·AS Acronyms
DIET CENTRE
·London AS Diet
·Molecular Mimicry
·AS Dietary Primer
·AS Food Guide
SUPPORT CENTRE
·In Memorium
·KickAS Stories
·KickAS Banners
·Donations
Forum Stats
13,547 Registered Members
28 Forums
43,722 Topics
518,350 Posts

Most users ever online: 1,568 @ 06/29/16 02:25 PM
Newest Members
Lisajharvey, Pulsar, MelissainManila, Stevereeno, SeanMulligan
13547 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
- Tim (Dotyisle)
- Chelsea (Kiwi)
- Megan (Megan)
- Wendy (WendyR)
- John (Cheerful)
- Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
Page 2 of 8 < 1 2 3 4 5 6 7 8 >
Topic Options
#409251 - 08/22/10 03:11 PM Re: i feel like i'm going crazy.......but i'm not! [Re: ]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
thanks kevin,

i do think you are right, somehow the pain is affecting my CNS. i just wish i knew how to make it stop.

the only thing i know to do right now is to try to get rid of the pain, so that's what i am doing, though easier during the day then when i lay down to sleep, that is the real challenge, as so many here know.
_________________________

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)

Top
#409252 - 08/22/10 03:14 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
seems i am not alone in these sensations, though only the second to the last post really offers any ideas:

http://www.doctorslounge.com/psychiatry/forums/backup/topic-3554.html

this is a little more of what i am talking about:

https://health.google.com/health/ref/Stress+gastritis

http://www.medbc.com/annals/review/vol_13/num_2/text/vol13n2p81.htm
_________________________

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)

Top
#409269 - 08/22/10 05:05 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
inkyfingers Offline
Gold_AS_Kicker

Registered: 04/08/09
Posts: 1595
Loc: Melbourne, Australia
It could be a disturbance of the sympathetic chain in your upper thoracic spine - you can get all sorts of weird and often seemingly dissociated visceral sensations when the sympathetic NS is disturbed - and the symp chain runs lateral to the thoracic spine under the rhomboids...
_________________________
Louise

Happy to be a physio by day, not happy to be a Spondy 24/7! wink3

Top
#409271 - 08/22/10 05:24 PM Re: i feel like i'm going crazy.......but i'm not! [Re: inkyfingers]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
thanks louise, that makes sense to me.

i guess the next question is, is there anyway to stop this neural pathway? maybe a neurologist would be able to do some sort of nerve block or something?

as i've said, i've had worse pain, but that pain like the SI joint is "just pain", but this even when its fairly low level really is messing with the rest of my body.

i'll go do some googling with these new terms.

but was wondering if you (or anyone else) know what kind of doctor would be able to deal with this sort of thing?

last year two physiatrists (including one in a pain center), a rheumatologist, a GP, an endocrinologist, a PT, a chiro, and an acupuncturist were all stumped as to what to do for me. though at least when i talked about it being like what happens to burn patient (the gastritis part at least) (good thing i knew about that) at least they understood and took it as the real physical problem that it was. and at least one of the physiatrists did acknowledge that pain can cause the physical sensations of panic attacks even if that's not what is happening, acknowledged the gastritis and heart pounding sensations, but no suggestions other than "give it time, it takes time for things to heal."
_________________________

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)

Top
#409272 - 08/22/10 05:34 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
manatee Offline
Imperial_AS_Kicker

Registered: 01/29/06
Posts: 3014
Loc: Pennsylvania
Hi Sue, Have you tried any muscle relaxer's like Soma? I do get similar symptoms and not as much anymore since starting Soma and Trazadone every night. Just a thought
I do hope you find answers soon
Cindy
_________________________
" That which does not kill me only makes me stronger"

Top
#409273 - 08/22/10 05:37 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
Donette Offline
Gold_AS_Kicker

Registered: 04/03/09
Posts: 1576
Loc: Idaho, USA
I recently learned "tapping" too. It helps with pain and all sorts of other stuff. I don't know why but it does. It feels cleansing, like pathways are opened up and the bad comes out. Weird, I know. But effective, nonetheless.

I'm 5 pages into my trigger point workbook. (thank you) If I come across anything I think could help, I'll yell. You've probably already exhausted all of these avenues though.

Good luck Sue. Praying you don't have another bad Fall.

-Donette

Top
#409279 - 08/22/10 06:05 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Donette]
joannesford Offline
Black_Belt_AS_Kicker

Registered: 08/06/10
Posts: 446
Hi Donnette

It was when my hubby had his brain heamorhage that i found out about it. He cannot take pain killers and because his nervous system is all messed up, any pai at all triggers his system. It is a terrible thing to see he shakes and screams, and even cries. It can be terrifying for me.

Nothing like this happened to him before he had his heamorage, he was such a calm and stable person

Anyway, I went from therapist to therapist trying to find something that would help him, and then one day a very kind old lady that had been working with children suffering from war related PTSD told me about the tapping

She suggested I try it out for myself and then pass it on to him. I was so desparate I would try anything, but i really did not think it would work, it looked stupid

Anyway, I did it over a few days, like i was learning it for an exam or something and to my amazement my own nervous system calmed down

I felt so much more relaxed. then a few days later I was told my dad had Parkinsons and my neice had diabetes and several other traumatic things occured. Normally all this stuff would have sent me over the edge and triggered a flare.

I did feel the initial rumbling, but some how I managed to stop the flare irrupting. that is when i realised that the tappig was working for me. It does not stop every flare, but i I do do it regular it certainly eases the intensity of them

Anyway, when i saw my dad he was tremblig too. His nervous system was shot with the parkinsons. I taught him the tapping and now he uses it for his parkinsons shakes. His doctor is very suprised that he is still on such a low dose of L-Dopa. He tells his doctor it is the diet and the tapping and a few other things i have shown him but as usual his doctor will not listen

My hubby still gets night terrors now and then but nowhere near as bad as he used to. He uses the tappig both to calm his nervous system and for pain. He uses ketosis for pain too

I have had to learn a lot of pain management techiques because none of us are any good with medication. I am the worst. I am terribly intolerant of pain killers and other medication too. my hubbyy is not as bad as me, but i do worry, because the medication they give to folk that have heamorhages can be very addictive. and i worry about my dad too. that L-Dopa normally only lasts five years and then they can end up in real trouble. thi is why i spend so much time caring for him. Indeed with us all being so very ill this is why i spend so much time researching.

But it is good. It is really heart warming when you find something natural like the tapping. Somethig anybody can do. recently I went to a seminar about it and a therapist said this could mean the end of a lot of medications, but I could tell he was not glad, he was sad, must have thought he might loose his ob or something

Anyway, only time will tell. It is very simple, and anybody can do it, even children, but some folk just won't stick with it. I guess things nowadays are always presented as sophisticated, perhaps it looks daft. but it has not been daft for me, it really has been a life saver. All three of us are on considerably less medication than we would have been without it

Love Joanne



Edited by joannesford (08/22/10 06:08 PM)
_________________________
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

Top
#409289 - 08/22/10 06:44 PM Re: i feel like i'm going crazy.......but i'm not! [Re: manatee]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
i do take my zanaflex at night before i go to bed and that does help, and sometimes i'll take another when i wake up 5 hours later, but right now thinking its probably better to just get up as the laying is hurting me. but yes, muscle relaxer does help, thanks!
_________________________

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)

Top
#409291 - 08/22/10 06:48 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Sue22]
EricaK Offline
Royal_AS_kicker

Registered: 06/23/10
Posts: 3854
Loc: Colorado, USA
Ooouuuch! heart hugss heart hugss heart
_________________________
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!


Top
#409292 - 08/22/10 06:49 PM Re: i feel like i'm going crazy.......but i'm not! [Re: Donette]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
thanks donette heart

i tried the tapping thing, you are right, it was surprisingly soothing. also deep breathing helps a lot. that's what i do when i wake up in pain. it may not help the pain, but it helps my stomach and the pounding in my heart.

i so wanted the problem to be triggerpoints last year. my one physiatrist gave me her lunch hour and injected any little thing that seemed like it might be a triggerpoint, but that's when we realized its more than just that. but some did get activated in my head from all the muscles in the area spasming as they went into protect mode and injecting my head helped a lot. it sounds like it would hurt, but it didn't, and it helped, go figure!
_________________________

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)

Top
Page 2 of 8 < 1 2 3 4 5 6 7 8 >

Who's Online
0 registered (), 53 Guests and 2 Spiders online.
Key: Admin, Global Mod, Mod
Recent Posts
Typical NSD day
by DragonSlayer
07/03/20 02:25 PM
High sugars and inflammation
by DonCA
06/30/20 05:29 AM
Last year bad year for Auto-immune diseases?
by DonCA
06/29/20 03:23 PM
New Member AS patient Youtube Channel
by kristenlittle
06/16/20 05:58 AM
Antigen Based Immunotherapy
by sBrian
06/15/20 09:56 AM
As Patient You Tube Channel- brand new. all welco
by kristenlittle
06/14/20 07:58 PM
I created an optimistic AS You Tube channel
by kristenlittle
06/14/20 07:54 PM
(Views)Popular Topics
"FITNESS" TEAM! - All Physical Activity & Sports 53,449,934
hmmm 2,517,053
Has anyone had Pedicle subtraction Osteotomy ? 2,119,506
What to do about healthcare? Can it be fixed? 1,438,749
User names revisited 1,132,783
A.S and beds, What do you find best? 1,099,881
Medicinal Marijuana 1,049,331
OMG!!!! 995,612
No/Low Starch Diet Success Stories 800,757
THE STARCH CONTENT OF FOODS - THE LIST 506,084