Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group weird wicked pain

Thanks for the support. I love ginger tea and ice packs. I found this thing called a "Back Buddy" that's flexible and reaches from C1 to my tailbone. It's heavenly!

I was diagnosed in 2012, also fibromyalgia, dislocated coccyx, severe migraines. Also on meds for anxiety and antipsychotic/antidepressant. Did a fantastic pain management program in Oct 2012 - it has helped so much , learning about types of pain, how to pace myself, relax/meditation, stretching exercises, types of pain meds, use of TENS Unit (works for me), Tai Chi, hydrotherapy, psychology help etc. The course helped me have a little more sense of control of my conditions , still a learning curve re the AS and Fibro - the AS migrates a lot with me, the Fibro has settled now thank goodness! I was doing all I learnt at hospital but depression still hit me again - I was told by dr that sometimes depression can happen for no reason - it is in my history. I also use a polymer gel slab to sit on in the car - helps lower vibration into my SI joints , the only way for me to travel and cope with pain whilst driving. I feel I

have so much to deal with - but I have a wonderful husband and fantastic
relationship - that's what gets me thru each day. He is a joy and treasure.
My AS hasn't shown up in xrays yet but have classic AS symptoms - is anyone else like this? First dr said it's all Fibro, two since then have said AS with touch of Fibro. It was a very confusing time for me. Some days better than others , every day different.

You guys know, hot tea really does work, I drink a lot of fruit teas and it's so relaxing that emotionally it helps through the struggles.

I agree Becky. I am a true tea "addict". I have had hot English Breakfast tea today and also iced tea and there will be different ones before the day is over. :o)

Possi

Definitely the tea thing is fabulous. If nothing else it forces me to slow down and take a break to sip my tea while it cools. Today I'm giving myself a break from exercising and just resting. That weird pain cascade deal is gone for now. The MD didn't think it's anything new. She basically validated what everyone said here, that AS is just a weird random disease and sometimes the pain is just randomly weird. Making a quilt for my newest grandson tonight.

Glad the worst of it has subsided.


Tea therapy......

Tea meditation......

I like that.

Is the regulation of body temp a feature of AS? I've been burning up for two days with a severe flare (which I put down to a bad reaction to a steroid injection to the SI joint five days ago). I hadn't heard of it before, but if it were a feature it would explain a few things

I don't know if it's a common feature of AS but it is one for me.
I can be in a 70F room and have goose bumps. If I am hot or cold, I have to ask those around me if it is the temperature of "just me"

Erika, I was glad to hear that you gave yourself a break. We have to get to know when to back off with the exercise, even H2O workouts. When imflamation hits, the worst thing to do is increase the imflamation with repetative exercise. All the years of working in aquatics and PT opened my eyes. We have to find a happy medium by acepting this disease and it's stressors on our physical and emotional bodies. I realize you know all this but sometimes it takes an outsider to remind you. I'm glad things are calming down for you some. Start back slow and you will be back to your norm in no time. Oh by the way, I call your flare up "joint of the week"

Cindy

Jeff is so right, if you have a jetted tub , it is better then taking pain meds. Also, fruit and chamomile teas ( no caffeine ) along with focused deep breathing ( breath in eight seconds, hold for ten or so and exhale for eight seconds ) all help, I think mostly for the comfort aspect.
I hope you feel better soon, and hoping we all make it through this weather !
Becky J.