Alternative strategies for pain relief?

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Alternative strategies for pain relief?

Postby MartinaS » Wed Jun 27, 2012 4:30 pm

Any advice about alternative (i.e., non-pharmaceutical) pain relief strategies? I am recently diagnosed and am not yet clear about contra-indicated activities, but have had some previous success with acupuncture and CST. Any supplements helpful? Or any other unusual tricks, like sleeping with a particular type of pillow? Most of my pain and other issues are concentrated in my head, neck, and upper back...
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Re: Alternative strategies for pain relief?

Postby karenb » Wed Jun 27, 2012 11:36 pm

Hi Martina,

Welcome to the club nobody wants to be part of.

In terms of dos and don'ts, see the posts "Living with SM/CM" (http://www.asap.org/forum/viewtopic.php?f=3&t=8060) and "Syringomyelia" (http://www.asap.org/forum/viewtopic.php?f=3&t=13131)

It will be helpful to know whether you have CM-only, CM with a syrinx, or SM-only. Also helpful are the length, width, and placement of your syrinx (for example, my syrinx is T6-T9, 3mm at its widest).

Based on what you have, folks on this board can help with suggestions and even physician recommendations. My biggest helps are my TENS unit (which is combined with a sequential stimulator, like they use at Physical Therapy offices), microwaveable buckwheat bags (since I've lost a lot of the sensation in my lower body), a microwaveable neckwrap (for when my neck and shoulders hurt), and a variety of pillows (various support & neck pillows, plus some with the little microbeads and various thicknesses of regular pillows - I use several throughout the night).

In terms of supplements, a lot of folks have found that they are deficient in vitamin D and/or vitamin B-12, among others, but you need to work some of that with your doctor.

I leave it to others on the board to provide more answers.

Karen

PS. I feel stupid asking, but what is CST?
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Re: Alternative strategies for pain relief?

Postby reedy » Thu Jul 05, 2012 1:49 pm

CST is cranial sacral therapy.

I had about a year of accupuncture (on the NHS, here in London) and I don't think it did much. Kept me busy though! Lots of appointments! Lots of discussions as to whether I did, or did not, feel better in a long term way and whether I did, or did not, feel warmer on the needle sites. I also went to a very well respected Chinese accupuncturist in Washington DC who told me there was nothing she could do for me - SM is a disease that needs neurosurgical treatment. I really respect her for saying that.

Personally I've become more and more sceptical about most forms of alternative medicine as the years go by. Search my past posts, especially when I talk about Ben Goldacre's book Bad Science or Simon Singh & Edvard Ernst's book Trick or Treatment. Both books are highly recommended reading. (Q: What do they call alternative medicine that has been shown to work? A: Medicine)

I do regularly have a massage though. I think moving, activity, definitely helps.

So now my 'therapy' is to try to get out and do more fun stuff. My mobility has decreased, but I still make it a point to get out to talks, plays, movies, events of all kinds as much as I can. Although I'm becoming a handicapped person, I'm actually I think happier than I was before, in an odd kind of way. I've got my limits (not always completely acknowledged), and I work within them.
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Re: Alternative strategies for pain relief?

Postby phyrehawke » Fri Jul 06, 2012 10:08 am

Hi Martina,
I just made a post on the ASAP Lounge side of the board under the title "Alternative Pain Relief Options" that addresses your question in some length from my personal perspective to answer somebody else's similar questions.

In regards to pillows, I am addicted to my tempur-pedic contoured pillow. My doc at the time instructed me to not just go buy one off the shelf, but go to a store where they would make sure I got the right size contour for the angle of my neck, which is very small for an adult. I have not regretted following his advice. The tempur pillow doesn't eliminate my neck problems but it minimizes them. I don't travel anywhere overnight without it. The right fit really is the key to whether they work for you or not, and not everybody likes memory foam.

I also make my own hot/cold heat packs but I fill mine with flaxseed, and you can buy them that way too. The oils in the flax seeds hold the heat or cold a lot longer than the rice or buckwheat kinds, which don't have any moisture in the seeds to maintain the temperature with. I thought the oils would eventually go rancid or dry out and stop working but I've had one I made many years ago and it still works great and it's fine.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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