alternate pain relief options

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alternate pain relief options

Postby vframe » Tue Jul 03, 2012 11:19 pm

has anyone tried accupuncture for you pain r/t a syrinx? i haven't asked my NS yet, but my husband is wanting me to try this before moving on to anything else. i had another mri friday and had my f/u visit with my NS today and he is wanting to refer me to a specialty group/hospital in Dallas. it was a pretty big argument between us.
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Re: alternate pain relief options

Postby gunflint » Wed Jul 04, 2012 7:38 am

There should be no reason for an argument. Does your husband understand what a syrinx is and how it causes pain? You have a neurological disorder that causes damage to the nerves inside your spinal cord. If acupuncture worked most people here would be on it. I wouldn't discourage anyone from trying anything but don't cancel any other appointments because of it. Acupuncture does work for a lot of different things but I've never heard it being successful in managing pain associated with CM/SM.
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Re: alternate pain relief options

Postby phyrehawke » Thu Jul 05, 2012 1:59 pm

I agree with gunflint.
I'm into alternative medicine, and so are many of my non-SM friends. So I've tried a lot of the alternatives. I've also tried the narcotics for pain and ended up having major problems caused by them, and along the way I puzzled out some new pain solutions. I have found few things that actually WORK, and I can say from watching the boards for years it's definitely a "your milage may vary" kind of deal. Everybody's syrinx is a little different, but in general we often have similarities. I have had horrible experience with TENS units, but some have good luck with them. I will not have accupuncture done for similar reasons (had expert agree with me on that), and massage can rarely be done on my neck because it triggers problems, but cranial/sacral therapy seems to be okay. Reflexology can be helpful. Always feel free to ask/tell somebody to stop if something feels like it's not going right. After all, you get to live with the results, not them.
I do what works, and have been taking fewer meds lately, but I do take some meds and will probably always have to.

Personally, I think it's helped that I've done some yoga for years. That and meditation were my original pain controls for years after the initial injury that caused my SM. I kind of suspect the yoga might be why I have acquired SM and it's been fairly stable? That type often isn't. My ability (or inability) to do some morning yoga things tells me whether I'm okay to go do life as usual for me, or if I should be more cautious than usual, or cancel my plans because they will just make an already bad situation worse. Certain positions can bring muscle spasms to a stop much more quickly than muscle relaxers, and that's nearly instant pain relief if you just know what position affects which muscles. You don't have to memorize the names of the positions or the muscles...just what positions work for your problems. It can be as simple as whether you are sitting with your hands facing up or down. Yoga can help you retain/regain function in problem areas sometimes too. But a normal yoga class is not for us. The average yoga instructor pushes students past their limits (it's their job) and we need to push our limits *very gently* or we can pay for it. It can be too stressful on the neck/spine at first to do floorwork for very long. Custom tailored short lessons are better, with an instructor who has a knowledge of physical therapy or medical massage or something similar.

Certain supplements and diet changes have made a *huge* difference for me pain-wise.
Acetyl-l Carnetine & Alpha-lipolic Acid
Omega oils 3-6-9 & an extra dose of omega 3's (anti-inflammatory)
Vitamin D (a lot of us seem to get very low on it. I did too)
Zinc (can act to block a pain neurotransmitter but don't take large doses...it can build up in your system)

A protein diet...high in the amino acids glycine, serine, and threonine in particular...can also dramatically lower spine pain and nerve pain levels. That would be primarily all kinds of meats (whole meats, not the low fat kind) and eggs. Sunflower seeds, tofu, and spirulina also contain those amino acids but in lower quantities so you have to consume a lot of calories worth of those items to get very much of the right amino acids.
I can explain a lot more on this subject if you want, but decided I should probably keep it simple for now.
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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Re: alternate pain relief options

Postby vframe » Mon Jul 16, 2012 8:27 pm

gunflint wrote:There should be no reason for an argument. Does your husband understand what a syrinx is and how it causes pain? You have a neurological disorder that causes damage to the nerves inside your spinal cord. If acupuncture worked most people here would be on it. I wouldn't discourage anyone from trying anything but don't cancel any other appointments because of it. Acupuncture does work for a lot of different things but I've never heard it being successful in managing pain associated with CM/SM.



thanks gunflint, my husband understands what it is but he still thinks the first NS i saw who basically told me it was nothing, go home and take an aspirin. told me i was to young to get hooked on all those pain meds. i found a different 'Awesome" NS. my hubby it think still hopes it "nothing" like the first NS said.
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Re: alternate pain relief options

Postby wendi » Fri Aug 03, 2012 3:24 pm

I haven't been here in a while and I want to tell you about my DH. At first he wanted me to be a hypochondriac. WTF? right, this way, there would really be nothing wrong with me. More than once he has accused me of being a drug addict. I have finally taught him along with my NS at TCI that what I have is real. I also, stopped complaining so much about what is wrong with me. I came here in the early days and went to a local group to vent. I just keep many things to myself. He knows I'm on many meds, but I still run a business and sometimes sleep too much. I think once he understands, your DH, will get it. Or he won't, unfortunately, this stupid condition has broken up a few relationships. Try and understand where he is coming from. He's scared too. Keep coming here to ask quesions and to vent. That will help. You may want to see a counsler.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: alternate pain relief options

Postby Graybo » Sun Aug 05, 2012 2:06 pm

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Last edited by Graybo on Wed Jan 09, 2013 1:56 pm, edited 1 time in total.
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Re: alternate pain relief options

Postby vframe » Sun Aug 05, 2012 7:13 pm

thanks Graybo, but that all sounds awefully expensive. now that i am not working we are on a tight budget, and this sucks, worked really hard to get where i am only to have this bring my happy world to an abrupt halt. but, as soon as i get things worked out and get my budget a little better, i will look into it. thank you very much.
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Re: alternate pain relief options

Postby Graybo » Mon Aug 06, 2012 2:34 am

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Last edited by Graybo on Wed Jan 09, 2013 1:57 pm, edited 1 time in total.
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Re: alternate pain relief options

Postby vframe » Mon Aug 06, 2012 9:54 am

GP
thanks, and yep, i am well aware of how our health/prescription/pharmaceutical system works here. but, it is what it is, that is why i am looking into the MM and alternate pain control, currently i am on neurontin, elavil, and norco for pain/neuritis, the pain has become so bad that the only way to relieve it is by taking double the dose, then i run out before i can get it filled again. and still i can't do simple things around my home without paying for it tomorrow or tonight. this is not a very good life to live for anyone at any age.
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Re: alternate pain relief options

Postby StephMoore » Tue Aug 21, 2012 7:32 pm

by vframe ยป Mon Aug 06, 2012 9:54 am

GP
thanks, and yep, i am well aware of how our health/prescription/pharmaceutical system works here. but, it is what it is, that is why i am looking into the MM and alternate pain control, currently i am on neurontin, elavil, and norco for pain/neuritis, the pain has become so bad that the only way to relieve it is by taking double the dose, then i run out before i can get it filled again. and still i can't do simple things around my home without paying for it tomorrow or tonight. this is not a very good life to live for anyone at any age.


I was diagnosed with CM/SM when I was 28, had my surgery within two months and have been in constant pain since...I'm now 31. I've tried many meds, therapy, accupuncture, laser therapy, epidurals, TENS unit and FINALLY....Lyrica last week! Lyrica, so far, has made a difference. I take 75mg 2xday and use my TENS unit here and there throughout the day. The only thing that was 'helping' was Lortab and TENS unit combined; however, I do not tolerate pain meds well as I am small.
I tried Neurontin and didn't like it AT ALL! The Lyrica is similar, as it is for neuropathic pain; however, is 4x as potent.
The Lyrica did make me really sleepy the first day, but it's been fine since. I stil have pain, but it's much more tolerable!

Have you downloaded the patient handbook from this site? I've found it to be really informative and helpful! Many different options listed for pain management.

Best wishes!
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