Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group muscle spasms? trigger points? what to do?

hi all, thanks for all the ideas, a quick thanks and a few details:

will ask the PT about getting or borrowing a tens when i go next week, may break down and buy the one that also has electrical stimulation? my physiatrist recommended that's expensive and not covered by my insurance but she says is the best for retraining muscles.

i'm taking as much magnesium as i can before it, ummm, messes with the gastro system, if you know what i mean (milk of magnesia doesn't contain magnesium for no reason) unfortunately for me, that's very little.

do soak with epsom salts from time to time, will have hubby go pick me up some.

deep massage? unfortunately even light massage just makes my muscles spasm more.

trigger point therapy where you press the trigger points out only makes my trigger points a lot worse.

acupuncture? i've thought about that. and at this point, i'm motivated to seek it out. don't know if it will be better or worse or just different than the trigger point injections (needle breaks up the trigger points) but certainly worth trying as its something i haven't tried yet. just not sure how to find a reputable acupucturist?

do appreciate the thoughts and suggestions. at this point i'll take any and all suggestions.

thanks again all,

hi jewelz,

only the muscle relaxant.

actually broke down and took aleve yesterday and i think that did help, so some of what is going on (in the trigger points where i have the original injury) must be partly inflammatory. maybe that's why the ice works at healing them up, just not fast enough. but today i could feel the edema in my legs and feet during my walk. the edema is making my hamstring tendon where it connects right below the knee worse and worse. in PT to address that now. that's the main part of my knee pain mystery. we started ultrasounding it before the back thing started and were making some progress. so can't take NSAIDs, though they help so much in the immediate.

rheumatologist on tuesday. i so hope he's ready to give me something that addresses the inflammation that i can actually take.

thanks,

hi wendy,

don't know why, but massaging a spasming muscle only makes it spasm more for me, not sure why? maybe that's telling?

thanks,

thanks maryjo,

will ask hubby to pick up epsom salts tomorrow,

haven't tried it yet. but now i am motivated!

wondering how similar or different to trigger point injections where the needle breaks up the trigger point.

how do i find someone to do this?

the heat does help the spasms but only as long as the heat is applied. take the heat off and it goes right back.

ice is longer lived, think its "healing" the trigger points. LOL, i think i just figured out how to strap an ice pack onto my upper back. it seems to be working, though maybe the straps are a bit too tight. good contact of the back with the ice though. necessity is the mother of invention, or something like that.

i know there is a lot of controversy to trigger points, but i think they are "inflamed" when they become irritated, as things like nsaids, ice, ultrasound help, but just not quickly enough. and pressure on them makes them so much more irritated, probably why the trigger point therapy where they are pressed out doesn't work for me. i know when my certain tendons are inflamed, any pressure on them makes them hurt oh so bad.

maybe valium would be a better, stronger muscle relaxant than my zanaflex, maybe short term, while dealing with this not sleeping thing, maybe a doctor would prescribe. i will ask the rheumy on tuesday and if he says no, put a call into my physatrist, then my GP. someone's gotta want to help me if i can't sleep or work, right?

thanks jay,

i did remember people mentioning magnesium and as soon as the neck started last weekend, immediately took a pill. unfortunately it works really well on my gastrointestinal system, so can't take too much. am taking it though. not sure how much its helping but it certainly can't hurt.

how much would you suggest taking? if i can?

thanks cc,

all good ideas. i know i'm being a little repetitive by now but to address all you've asked:

the flector patches seemed to be doing some good when it was minor. but you know, i think i will put one on tonight over the worst trigger points right before bed. as the aleve last night seemed to help. but edema even from that one pill, so can't take that anymore. but maybe a patch again.

massage, even a light one: increases muscle spasms, yes, odd.

trigger point therapy: makes the trigger points worse. even when they aren't active, a good press and they become active. if they are active, watch out.

i'd love a shot, or should i say, several. the physiatrist gave me two on tuesday when she did the SI cortisone injections (which by the way have been nothing short of miraculous, short term at least, one less thing to worry about). the one to my occipital muscle: at least i don't have the occipital headaches now like i was in the days before that shot. and one to the terres, so at least that area is better. but i have a few in the trap and rhomboids that need injecting. but can't get that done for a month at least, though i think i'm going to put in a begging phone call ASAP.

tens: will ask PT on tuesday.

hot tub: oh how i'd love one right about now. and no, unfortunately, Dow's is several hundred miles away, NY state is a big state.

oh, the drink sounds divine, wish i could, that with a hot tub and i'd probably be living there.

but the ice, slowly, maybe some progress.

just hope tonight is a 4+ hour sleeping night and not a 1-2 hour sleeping night. that's one reason i'm trying to ice the #$%& out of it now.

thanks karen,

will ask about the tens at PT.

yes, you are right, no matter how much we think we've learned in managing our symptoms, sometimes they win. "sometimes you're the windshield, sometimes you're the bug".

as for the ever elusive dx? unfortunately, i think the upper back is myofacial pain from an old injury and it clouds the issue. it was only once slowly one by one just about all the joints and various tendons joined in the party, that doctors stopped just saying myofacial pain.

so when i go for the dx, have to not spend too long talking about the upper back. but i do wonder if its all part of the disease?

my trigger points definitely act like they are inflammation sites: pressure hurts them just like any of my inflamed tendons, ice and nsaids help them. ultrasound helps them the same way that it helps my tendons.

anyway, i just wish the pressure of the bed weren't so problematic, then life would be a lot easier.

Hi Sue,

Sorry to hear about these latest developments. I was reluctant to respond, because I was leery about being typecast as that guy who always gives his acupuncture shpeel. As we overcome our various obstacles, we develop our pet modalities that we're very eager to wax poetic about whenever we have the opportunity. Mine happens to be acupuncture. Apologies in advance if this is too much detail than you care for.

One of the things that I tried to reconcile, is why do some people have ho-hum results with acupuncture, but yet I received such amazing results? As your question alludes to, one of the largest criteria is finding someone who is reputable. Depending on the true nature of your condition, I speculate that only about 5% of the acupuncturists out there will be worth your time and money. I think most can help with pain management, but it may not be sustained, especially if the source of your pain/discomfort is systemic.

What to look for in an acupuncturist?
1. You want to find someone who has practiced a long time. I like to refer to Malcolm Gladwell's 10,000 hour rule from his Outliers book - You want someone who has had so much clinical experience and has "seen it all". Someone who has seen so many cases, that they've developed an uncanny sense of intuition in what they practice and how it can help their patients.
2. This may not be politically correct, but I prefer to work with someone who received their training in a country where acupuncture is a mainstream part of the healthcare system. Though I've relied on a lot of alternative medicine, I'm leery about most alternative medicine practices. There isn't as much regulation in alternative medicine, so there may be less risk if you find someone who is committed enough to their practice that they had to get re-certified when they started a practice in the US.
3. Most places worth their salt will let you schedule an appointment to get a consultation. Basically, ask if you can go in and talk to them about your condition, have them evaluate you (they'll take your pulse and look at your tongue), ask them to explain their assessment of you within their framework, and then ask them how they plan to treat you. I have a rule of thumb to never make a decision about my health in a doctor's office, so sleep on it and decide if you want to pursue it.
4. Referrals. If they're good, they'll either have testimonials, or depending on where you live, maybe the neighborhood Yelp pages will have user reviews on their feedback. I put less stock in this criteria because good reviews can be cherry-picked and your situation is likely to be unique.

I have a shamefully long post on my experience with acupuncture in the alternative forum. Certain characteristics about your current state are eerily similar to what I went through earlier in the year. My SI joint pain was so bad, I couldn't sleep on my side. I couldn't sleep on my front because of neck, so I had to sleep on my back. The only problem is that my back would spasm easily for lying on my back, and I would invariably wake up after 3-4 hours of sleep. The "creepy crawly" description also brought back frightening memories. These were all dispersed within three to four weeks of treatment.

IMO, I think one of the most appealing aspects about considering acupuncture for your situation is that you don't have a formal diagnosis from a Western doctor. You'll be able to get an independent diagnosis from a completely different framework that, most importantly, is tailored to your unique condition.

Lastly, I don't think there's a single silver bullet for serious diseases/conditions. As much as I support a good acupuncturist, it will, like other modalities, have its limits. However, if you do find someone good, as long as the source of your pain is not structural in nature, you will hopefully receive treatment that will make your situation much easier to manage.

I've tried a lot of the other modalities that were mentioned: TENS, ultrasound, pain gels, deep tissue massage, myofascial release, etc. They were all very helpful to me when the disease was under control, however, when I'm in a major flare, they didn't put a dent into my situation.

Sorry for the absurdly long post. I hope some of it is helpful. I'll gladly answer any additional questions you have about acupuncture. They'll obviously be biased to my personal experiences, but I will try to be as objective as possible.

Best of luck in finding something that helps! Hang in there!

Freddie