Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Pain Management

I'll be glad when medical technology invents something that
works as good as oral steroids without the side effects..I have
great pain relief with high doses,as a matter of fact better
than the narcotic pain meds I take..

Actually I should say "Affordable" alternative to steroids..After
losing my insurance coverage,$1000 to $1500 per month for meds is
not anything I can afford..

Later!!
David R

Chelle, you've already had some good input on this, but I wanted to underscore the idea that pain management specialists don't just prescribe stronger drugs. In many cases, they can help you learn techniques to lessen the pain (relaxation, meditation), or help you finish tasks that need doing despite the pain.

For instance, if you have a day when your knees are really bad, but you must go up a flight of stairs for some reason, you can distract your brain from the pain briefly to make it easier. Like, you could count backwards from 100 by threes, or name every country you can think of that starts with the letter 'e', or focus on the leg that's in the air instead of the one hitting the stair.

I don't know if they would teach you that exact technique, but it is a useful one for shortterm pain management.

Also, look into the Arthritis Foundation's Arthritis Self-Management Program. Yes, I'm biased as I'm a Group Leader for it, but I cannot tell you the results that we see from week one to week six. One woman told me last week that just learning about the Pain Cycle helped her to realize that there's more to treating her pain than popping a pill. That there are other factors that exacerbate our pain that, if you can perhaps get them under control (or some modicum of control anyway), the pain is easier to manage. The workshop is free, with the exception of the cost of your textbook. At least, that's how it works in Canada and I would imagine it's the same in the States.

Anyway, just my opinion. Hope it helps.

Many Hugs,

Awesome info, Kat (and Penguin). The prospect of a little mental control over this crazy beast definitely makes it worth looking into. I'll try to get an appointment this week before I go back to the rheumy on the 22nd.

I have been developing bath and body oils, lotions, and potions, and other notions based in aromatherapy and herbal medicine for a few years now. Took a break from it when I move back from California due to personal chaos. I've been getting back into it the past few weeks in an attempt to remind myself that there are alternates to chemical meds.

Hopefully PM will have more info for me in that aspect, as I'm tired of being doped up, and am more than a little scared of having needles in my spine.

Thanks so much

hey Kat, aloha

my old primary care doctor noted that the tylenol#4 i was taking was a mild pain reliever...
at the time i was talking to him about doing my days' chores and errands, getting home making my supper,
eating, watching some tv and just getting overwhelmed by leg and back pain...the taking a tylenol.

he asked if i had this sort of experience every day and i responded saying that things just tightened up
by about 3/4pm and then got worse as the night went on...he suggested taking the tylenol at 3/4pm
and giving it a chance to work before things got bad...ended up being good advice, went from chewing up
three/four pills a day to only taking two most days.

use it before you're desperate, works better.

best to you
pu liki
aloha Ben

Hi
I found seeing th epain speialists excellent for me. If your expecting narcotics, don't hold your breath. That has prooven over and over to not be very effective. I take Amit, then we added Neurontin and then effexor. I have very good pain relief. I am greatful that from my nursing back ground I didn't want narcotics becasue I know in 90 % of patients they stop working once your brain gets use to them. I was impressed when this route was suggested. I will admit that I felt tired, groggy etc for some time, but it is so wonderful to have pain relief. I thought A/S pain is rough ,but when I developed Neuropathic pain I truly wanted to die. Narcotics do nothing for this type of pain . I hope you go inot it with an open mind and wish you all the best.

Sincerely,
Janet

Ahhh,

I am in kind of the same boat!

We have insurance, but a $2500.00 deductible.

Right now I am in the middle of a flare, including my eyes, headache which I can't see straight, joints, back.

Right now I am doing 20mg of prednisone a day, probly 8 to 10 tylenols, 2 hydrocodone & at least 1 oxycodone..all of that in a 24 hour period....oops forgot about the pred forte drops in the eyes.

I HATE taking all of that, but if I don't I CAN NOT even get out of bed.

Hopefully the flare will subside, but there always seems to be another one right behind it.

I am surprised I still have a stomach left, and surprisingly no stomach problems.

Lisa

I love that you're into aromatherapy and herbal medicine. Have you noticed anything that helps? Which scents? I find that amber resin sinks right through me and relaxes me almost immediately.

Hugs,

Rose?? is that the secret additive? Remember, only one.

I adore the mix of oils so much I'll apply directly from bottle. Katia is busy collecting the lavendar before it flowers and it looks like a banner harvest this year.

The mind is our most powerful tool. In college we'd play with the biofeed back machine until we "got" it. And later my mother turned me onto Lamaze birthing technique which served me well as a self hypnosis trick for years. With a short term injury or even continuous pain using the deep breathing, remembering to blow out more than you're taking in to prevent hyperventilation, you can get through a mirade of horribles. Breath Teddi. The essence is to direct your concentration on an outside object like staring a dot off the wall while focusing on your breathing technique. When we take our attention off of the immediate pain center and focus outside of ourselves, we somehow relax enough to break the pain cycle if only shortly.

good luck in your search
Klem

I do have a couple of bath & body oils that I've put together. I'd tell you what's in them, but I'm torturing Kat (Klem)

Actually there are a few combinations that work really well, depending on whether I'm needing mental clarity, or whether I'm needing mental and physical relaxaton. I love to work with rose absolute, amber, lavender, rosemary, all sorts of essentials. Also LOVE pure shea butter in my lotions...fixed the eczema I used to get from the hothothot showers.

Still wishing I could go that other herbal route...

I'm slowly remembering the concentration stuff. Don't know how I forgot for so long.

No not Rose

Try the oil on your next bug bite...works wonders