I noticed in the thread on pain meds recently there was some discussion about myofascial pain syndrome and trigger points.

After having been diagnosed with Lyme almost three years ago, and undergone "standard" treatment... everyone assumed I was cured. Yet I still had these horrible tight painful muscles, finally diagnosed (by myself first) as myofascial pain syndrome.

I've been treated for it in many different ways (chiropractic, myofascial release, botox, currently trigger point injections.) Success has been limited. It's been so frustrating.. I know other people get treated for MPS and immediately feel "cured" but I feel only limited relief, and then the trigger points start twitching again!

Only recently have I begun to consider that perhaps the lyme disease may not be gone and may be having something to do with my inability to find a "cure" for this condition! (DNA and co-infection tests ongoing...)

(I have recently started taking magnesium also after reading all of Marnie's threads on it.)

Aniek, I noticed in particular your mention of your problems with MPS... I would love it if you posted more about it or emailed me ([email protected]).

Would like to hear others expeiences as well with these particular kinds of symptoms --- this is the ONLY symptom I have!!! Anyone else like me? I feel like a bit of an oddball because otherwise I feel fine!

Thanks in advance,
Karyn
 

Since you have already been diagnosed with lyme I would check with an LLMD just to be sure. It's very possible your MPS is related to lyme. Especailly since you were only given "standard" treatment.

I had TMJ at one point in my life, but I had other symptoms along with it.
I wish I could be more helpful. If you would like to find a LLMD, you can post in the seeking a doctor section of LymeNet and someone will help you.

Good luck to you.

Beverly
 

I started treatment for the myofascial symptoms before my Lyme diagnosis.

I began seeing a pain specialist because of severe hand, wrist and back pain. He prescribed physical therapy with one of his therapists.

For a few months the therapist used dry needling. This process uses acupuncture needles to go into the trigger point and release the muscle.

We realized this wasn't the right method for me. My muscles would swell up signficantly following the procedure, and I would be tighter for a few days. My therapist really had never seen anybody react as badly to that, and he believes it was a result of the Lyme, or another infection. This was also the worst pain I ever felt.

We switched to hands on work. Basically myofascial release with the hands. I still had some soreness afterwards, but it seemed to help for a few days at a time. The process still hurt, but not as much as the needling.

For me, the big "breakthrough" was Flexeril. I started at 5mg a night, and now am at 30mg. I saw a significant difference each time I increased. When I got to 30mg, I was a new person.

The Flexeril basically allowed the myofascial release to work. I've been strengthening now, with very easy exercises. My gut feeling is if I stopped the Flexeril, I'd be a mess again.

One of the things I discovered during this process was that I lost certain muscle memory. I had to learn how to relax my shoulder blades. I would actually tense them when I tried to relax them, or move them up when I tried to move them down.

Another change I made was in my diet. About 2 months ago I started eating meat again (was a fish eating vegetarian for 14 years) and cut out sugars and most carbs to follow a yeast prevention diet while on antibiotics.

I don't know if it's the increased protein, the meat protein, the lack of sugars or a combination (I'm guessing it's the combo), but I feel much stronger now. I also take magnesium, and have just moved up to about 1000 mg at the suggestion of my LLMD.

Let me know if you have any questions.

You've obviously seen my posts about Trigger Point injections. Just wanted to restate that they aren't a long-term 'cure', but do provide some temporary relief to those of us suffering 24/7 head and jaw pain.

Docdave - before I was dx'd with Lyme, I saw a dentist who 'specialized in TMJ treatment'. He wanted to charge me $4800 to create a bite plate that would correct 'the misalignment in my jaw'.... Sorry, but I ain't buying that. I had braces 25 years ago, and this is the first time I've ever had any of these issues. And the OTC bite plates were a total waste of money.

Karyn, you may very well still need treatment, and if you see a dentist, I would take everything they say with a grain of salt. I hope during your three years of treatment, you were treated for co-infections.....

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Julie G.
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lymeinhell
 

DocDave -- I already have a bite plate. I do have TMJ but it hasn't been my biggest problem. I got the bite plate due to some loose teeth that may indicate I grind.

Beverly -- I am following up with all the diagnostic tests for lyme etc. Just got my first borrelia PCR back yesterday - negative! Had more blood taken today - we're testing me once a week for several weeks to see if anything shows up.

Still trying to locate an LLMD in SE PA who is well regarded and is taking on new patients!

Aniek -- I know how you feel about the trigger point injections. I have them once a week, and for a few days afterwards I feel so stiff! I think this may be normal -- I don't think anything's been swelling up in the way you experienced. My doc is noticing some improvement -- my trapezius are actually relaxing and my infraspinatus don't twitch as much anymore! Still... even though the muscles are releasing somewhat, I still have pain just sitting in front of this computer typing... so I feel like something systemic may still be going on. (either that or I'm just being too darned impatient and improvement takes longer than I want it to!)

I'm on the magnesium as well, though not as much as you... the Mag Tab SR pills give me a bit of digestive upset, so I'm not taking too much right now.

The Flexeril sounds promising, I will look into it, thanks!!

Karyn
 

For clarification, I never got trigger point injections. Nothing was injected into the muscle. The process I had was called dry needling, and it uses acupuncture needles to release the tension.

It is supposed to help longer term by actually relaxing the muscles. Didn't work for me though.

I also really believe in a combined approach. The way I look at the Flexeril, is that it allowed me to do the physical therapy to relax and then strengthen the muscles.

Also, on the Flexeril, start low and work your way up. I've heard of people who start right at 30mg and then say they can't handle it. Other people I know of take 10mg and say it doesn't do anything.

I started at 5, and took about 2 months to get to 30. There was a significant change in the pain I felt and my muscle tension when I jumped from 20 to 30. Also, it took time with each increase for my body to adapt to it. I was exhausted for a week each time I increased. And I still have a heck of a time waking up.
 

Man, working the ilio-costalis muscle down along the spine hurts like nothing else I've ever had!

Anyhoo... yes, my experience with muscle relaxants is that they are way too potent. I may well have tried Flexeril about 8 years ago, but gave it up because it doped me up too badly. Now I just take klonipin, an anti-anxiety drug, 0.5 mg at bedtime. Seems to calm things down a bit.

thanks for the input,
Karyn
 

Good luck with all of this. I know how awful that constant muscle pain is.

I fall asleep if I take 2 Tylenol, so the fact that my body adapted to the Flexeril says a lot. My energy is still somewhat less than it was, and my body wants to sleep 10 hours a night...but that's better than the pain.