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» LymeNet Flash » Questions and Discussion » Medical Questions » Borealis burgdorferi or Myofascial Pain Syndrome (Trigger Points)

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Author Topic: Borealis burgdorferi or Myofascial Pain Syndrome (Trigger Points)
applewine
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Hi,

I'd like to know if anyone here is aware of a condition called Myofascial Pain Syndrome (trigger points). This condition seems to have almost all of the same symptoms of Lyme and they both have no reliable tests commercially available. The situation I'm in is that I have had a diagnosis of both of these conditions from different doctors. I'm surprised that I don't see any mention of myofascial pain trigger points mentioned on lyme disease websites because of the symptoms being almost a complete overlap. Trigger points don't cause fevers though, which I don't have. I got a positive test for lyme from Igenx today btw. If I had any of these symptoms I would want to know if I had lyme or myofascial pain syndrome, because the treatments are totally different.

My symptoms are:
-Ringing in the ears (tinitus)
-Shaking vision when reading up close (nystagmus)
-pain the neck, jaw, scalp, face, shoulders, back, hips, chest
-Muscle twitches ( recently, I think this didn't start until I took magnesium for a while)
-Vertigo, dizziness, unusual balance sensation
-Numbness in face under the eyes
-Electric shocks around the face/ears

It started back in 2005 with a stiff neck, developed into dull ache in the chest in 2007 and then into dizziness, tinnitus and tmj disfunction in 2008.

I've emailed the lab to ask if they can do a microscope test for Borealis burgdorferi since it seems that would be the only way to confirm Borealis burgdorferi. For myofascial trigger points, you can feel for them by a trained professional or image them with an elastography MRI or an ultrasound, but nobody is trained to do this clinically.

Thanks, pease provide thoughts on these two conditions! Why aren't people wondering which of the two they have?

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Loonie1980
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I don't get it. I thought Lyme caused Myofascial Pain Syndrome. I have both. (I think)
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applewine
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If you read about myofascial pain syndrome, it does not say anywhere that it is caused by lyme disease. There is no proof of the cause of myofascial pain syndrome. Some theories are related to certain neurotransmittors such as adrenaline and acytecholine. These ischemic trigger points develop. They are micro muscle fibor contractions. One can have muscle pain caused by lyme disease, but there are many causes of muscle pain. Myofascial pain sundrome is caused by trigger points. What causes the trigger points is not proven.
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TerryK
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Lyme (and possibly bartonella) can cause myofascial pain syndrome and/or fibromyalgia. Myofascial pain synrome and fibromyalgia often occur together. Many people seem to be diagnosed with one or the other when they actually have both.

I have been diagnosed with all 3 of them. The fibromyalgia and myofascial pain syndrome got much much better with lyme treatment.

There is no known cause for myofascial pain syndrome or fibromyalgia. I personally think they are caused by infection and/or toxins.

There are several discussions in the archives on trigger points. You might want to do a search in the archives using the term trigger points.

Terry

[ 06-03-2010, 12:43 AM: Message edited by: TerryK ]

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cactus
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I too was diagnosed with MPS before learning I had Lyme. Treating the Lyme took care of the MPS.

If you have a positive test for Lyme - why would you not treat it?

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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applewine
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cactus, I'm not convinced yet that I have lyme even with a positive igenx test. This is so complex that I'm not sure. Also I'm not sure if lyme causes trigger points, but it might. However, this is not something talked about in practices or books for myofascial trigger points. I looked up other posts and read about them in this forum. I just don't trust any lyme test at this point. I would only be conviced if I saw a spirochaete with my own eyes. I'm curiuos what the physio therepist doctor will say about lyme. I'm scheduled to see a doctor who is an expert on myofascial trigger points.
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cactus
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Did you have Lyme-specific bands on your WB?

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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applewine
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No, my bands were not lyme specific. But this more advanced test is positive according to the phone call I got today.
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Ahodge01
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Trying abx is not going to hurt you... If you wanted to see if it was caused by an infection.

I know how you feel though.... I still have no reactive bands I wonder everyday if its lyme. Im beginning to think its not.

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TS96
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I had several trigger points in my back and neck when I was diagnosed with "fibro" Turned out to be lyme and all my trigger points are gone with treatment, but still have bone spur pain in my cervicals and TMJ.

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

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TerryK
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apple,
Lyme is a controversial diagnosis and most doctors are not well educated and many buy into the IDSA political view of chronic lyme which is that it does not exist.

If you have a postive IgeneX test, you need to treat. That said, some of the sickest people don't test positive for lyme for many reasons. The spirochete is tested for directly because they are fastidious which means they are hard to culture in the lab.

CORRECTION: Sorry, I meant to say that the spirochete is NOT tested for directly. Ones immune system response (antibodies) is what is tested and that can be poor if a person is really sick and sometimes even if they aren't.

Once you start treatment you will either herx or improve without herxing and if neither of those things happen after an adequate amount of time, you will know that you need to look elsewhere for answers.

Please don't wait too long. I waited several years after a postive IgeneX test because I believed several of my doctors when they said I didn't have lyme because I didn't have a CDC positive result. It took me a few years to fully understand the politics and all the issues and I took my time with the research. Wayyy longer than I should have.

I was so sick by the time that I started treatment that the first few years were pure he!! It took quite a long time before I improved but I have improved a great deal despite the fact that my doctors told me I did not have lyme. Those same doctors are all for me going on IV now to further my improvement.

Good luck,
Terry

[ 06-01-2010, 08:59 PM: Message edited by: TerryK ]

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CD57
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MPS was my first diagnosis, followed by Fibromyalgia. I have had all the symptoms you describe. I have Lyme and bartonella.
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erikjh1972
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i dont wonder, i know my left side facial pain was caused by lyme.

--------------------
3 months Doxy
8 months of Tetra
7 months of Biaxin/Plaq.
4 months Doxy/Biaxin/Plaq.
5 months Biaxin/Plaq.
Back on Doxy/Biax/Plaq
On the road to recovery.
Trying to make people Lyme Aware.......

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massman
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There are some major connections. The Myofascial Pain and Dysfunction books (absolutely BRILLIANT illustrations + descriptions) were primarily by Janet Travell MD. Two volumes. Part 1 out about 1985.

She was President Eisenhower's personal physician.

If I remember correctly FM was accepted as a diagnosis when a patient had 11 or 12 out of 18 specific trigger points. Patients were happy - they finally had a name for it. Docs were happy - they finally could bill for it.

CFS did not always have the TPs - sometimes yes, sometimes no.

FM has been very well connected to many cases of lyme now. We know that lyme + coinfections can certainly aggravate muscles. I do wonder a bit why it picks specific areas of specific muscles.

Probably high stress areas.

Some LOL - the second volume of the book did not quickly follow. It covered the lower trunk + lower extremities while the first volume covered head, neck, upper extremities and most of the upper trunk.

Travell was in her 90's and some massage therapists literally prayed that she finish volume 2 before she died. She did.

So we are allowed to have intermixing of all these diagnoses + more as I feel they are all really related. Everything in our bodies is related.

And as so many here have found, it is not easy.
[woohoo]

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NanaB
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My daughter was also diagnosed with myofascial pain syndrome about a year ago. She just saw an infectious diseases doctor who said it is not that but most likely Lyme, or it could possibly be caused by the XMRV virus. She could have both. He's testing her for the Lyme first, though.

--------------------
Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help.

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applewine
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I went to a neurologist and he gave me the basic lyme test and it was negative so he said it was myofascial pain syndrome. The parts of my body that hurt are always the same and it doesn't shift around. There are specific points. Also, I would think one could have MPS without lyme, have both, or only have lyme.
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quote:
Originally posted by applewine:
like to know if anyone here is aware of a condition called Myofascial Pain Syndrome (trigger points). This condition seems to have almost all of the same symptoms of Lyme and they both have no reliable tests commercially available. The situation I'm in is that I have had a diagnosis of both of these conditions from different doctors.
[snip]
I got a positive test for lyme from Igenx today btw. If I had any of these symptoms I would want to know if I had lyme or myofascial pain syndrome, because the treatments are totally different.

My symptoms are:
-Ringing in the ears (tinitus)
-Shaking vision when reading up close (nystagmus)
-pain the neck, jaw, scalp, face, shoulders, back, hips, chest
-Muscle twitches (recently, I think this didn't start until I took magnesium for a while)
-Vertigo, dizziness, unusual balance sensation
-Numbness in face under the eyes
-Electric shocks around the face/ears

It started back in 2005 with a stiff neck, developed into dull ache in the chest in 2007 and then into dizziness, tinnitus and tmj disfunction in 2008.

I've emailed the lab to ask if they can do a microscope test for Borealis burgdorferi since it seems that would be the only way to confirm Borealis burgdorferi.

Good morning, dear Applewine.
Welcome to LymeNet and this great community for support with your Lyme disease (LD).

i'm not a healthcare professional, but i'll share some of what i've gleaned so you may not become completely disabled by your Late Disseminated Chronic Lyme Disease (given the info you've shared above).

Be sure that numerous LLMDs (Lyme-literate medical doctors trained by the International Lyme and Associated Diseases Society, aka ILADS) and hundreds of their patients understand severe myofascial pain and the trigger points associated with fibromyalgia. They are serious symptoms of chronic Lyme disease that often get misdiagnosed for decades.

The illustrious LL Dr. S. of Va says fibromyalgia is caused by the sleep deficit brought on by long-term untreated Lyme disease.

There ARE reliable tests available for fibromyalgia AND for the causal agent of Lyme disease, the "stealth" spirochete Borrelia burgdorferi (note this spelling).

The CD-57 test can be used as a simple, inexpensive screening test for chronic Lyme Bb.

Yet all diagnoses of tick-borne infections are clinical, not serologic.

Please see the 16th Edition (Oct. 2008) of "Advanced Topics in Lyme Disease" by the famous LLMD Burrascano. His 37-pg monograph will become indespensible to you as you seek remission of your chronic LD. Print it for free off www.ILADS.org (I put mine in a 3-hole binder and added dividers for easier reference.)

If you had no blood work done at all, your symptoms alone (including the TMJ) scream, "Treat her Late-stage Chronic Lyme ASAP!"

Since you've received a positive LD test result from IGenx, have NO DOUBT you've got Lyme. Their tests are very reliable and widely respected in the scientific community on both sides of the unfortunate "Lyme controversy" (which you'll learn exists solely due to greed and dirty politics).

So very sorry you have LD. [Frown]
(We'd love to have NO ONE else EVER join this club. If only...)

The treatments aren't "totally different" for fibromyalgia and LD. Good sleep habits and a Candida-control diet are an essential part of the treatment protocols for both. But LLMD's will put you on the path to remission.

Sticking with non-Lyme-literate rheumatologists, the IDSA guidelines, and info from the CDC will get you [puke] and [toilet]
Found my first chance to use the pukey guys in a sentence! [lol] )

How do you decide who to listen to?
i suggest a few steps:
- See the 2009 multi award-winning documentary "Under Our Skin" ASAP.
- Read "Cure Unknown" by P. Weintraub (2008) ASAP.
- Go to www.ILADS.org and explore that whole site thoroughly, ASAP.
- Go to www.lymediseaseassociation.org and explore that site and links, ASAP.
- Look on LymeNet for "Newbie Links" to get oriented quickly.

Meanwhile, every moment you spend without being under the care of, and conscientiously following the directions of, a LLMD you're setting yourself up for more years of hardship and pain. Lyme kills; fibro and even severe myofascial pain (like mine) doesn't.

imho, you have LD. Two NIH trials found the quality of life for chronic LD is worse than for patients with a recent heart attack or those who have Type 2 diabetes.

Actually sounds like you may have already progressed to Lyme Neuroborreliosis, but that's for a LLMD to diagnose and treat, ASAP!

Lyme disease can attack virtually any system in your body. Given the symptoms and testing you've described, i'll bet many LLMD's and LL scientists actively researching the Lyme Disease Complex (Lyme Bb and common co-infections, like Bartonella henselae , etc.) know that Lyme Bb spirochetes could be extracted from your brain and your irises tomorrow. But we'd all prefer to keep you alive!

Dear Applewine, you have NO time to waste. Hurry and post under the "Seeking Doc" section today.

I wish you all the best,
and esp the blessing of a LLMD somewhat convenient to your home with appointments available for you SOON. (Many LD sufferers travel hundreds of miles and spend $30,000+ per year out-of-pocket to get some relief in hopes of remission from chronic LD.)

Sincerely,
Smile

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NanaB
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question - how do we find the documentary "Under Our Skin"? Is it in a book store? I know they don't have that one at my local library.

--------------------
Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help.

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Hi, NanaB! [hi]

Great question! You're a wise, frugal person to check your library first.

Many will want this info:

http://www.underourskin.com/

The documentary can be purchased from the "Store" on their web page. If you are financially able, maybe you could buy a copy to view & share with your friends, then donate it to your community library system.

The web page also includes a calendar of screenings around the USA (never enough, tho.)

People have told me you can order this documentary on Netflix, too.

Keep posting on LymeNet so others can share their helpful tips with you, too.

Wishing you all the best of health & happiness,
Smile

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canefan17
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Foam Roller!!!!

http://www.amazon.com/Foam-Roller-6-x-36/dp/B000Y4W9VA/ref=sr_1_4?ie=UTF8&s=sporting-goods&qid=1275497865&sr=8-4

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Intriguing, canefan17.
Do you think it best that one begin using a foam roller only after getting the OK from their LLMD? I understand it's often painful to use at the start.

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canefan17
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You don't need to be ok'ed.

The foam roller is like a deep tissue massage.

Just do it on days where you can relax and drink lots of water. So maybe 3-4 times/week.

It can be very painful (especially the IT band and groin area)


But foam rollers are GREAT!

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greengirl
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Here's my take, after years of exploring myofacial pain. I think there are a number of things that can cause myofascial pain, enough to consider it a "syndrome." But I consider myofascial pain a symptom of something else, not a condition of in and of itself. Any "treatments" of just the pain aren't going to bring long-term benefits.

There do appear to be many things that can cause myofascial pain, some treatable, some not. Why not focus on the treatable things and see if you find some relief?

In my case, I have determined that my myofascial pain is caused by Lyme. At first it was migratory, but it is now always in my hips and neck, but migrates between my shoulders. I have seen improvement in some of my pain in the six weeks I've been on treatment and expect more.

Some of the things I have done to manage the pain in the past are massage, foam roller, acupuncture, jet baths, saunas, reiki, CST, and trigger point therapy. These all provide some relief, but do not "cure" the pain and the relief is not for very long. My pain has only spread and gotten worse.

I wish I had pursued the cause of my myofascial pain long ago rather than putting so much focus on things to manage the pain.

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applewine
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I have positive bands 31 and 41 and sent away for the PCR test. As far as the cause of the trigger points, I think they could be caused by medications or stress and bad posture, or anything that will imbalance the nuerotransmitters in your system. I also have muscle twiches all over, which I don't think I had before, but started after I took magnesium. Could be coincidence. I know lyme can cause muscle pain, but could it cause the small muscle knots called trigger points? I think that the IDSA is wrong, but that doesn't mean that ILADS is right.

What we need is a test that does not give false positives. I'm not sure that the IDSA doctors consider IgenX to be reliable, but if I saw one I could ask them. I do not want to take anti-biotics if I don't need them. I can't aford to get very sick if I don't need to either way. Right now I'm seeing a doctor who specializes in Lyme and other chornic conditions somewhat, but not just Lyme. I could try doing the trigger point therepy this month and then I'll have the PCR test result back and I'll tell my neurologist about the physical therepy result and the WB and PCR result and see what he thinks.

I scheduled a visit with a LLMD twice, but canceled because I got a negative on the first test. Also the LLMD had a recording on his phone talking about the murcery in vacinations being a problem, but I heard they have no more than a tuna sandwhich and if he believes in that stuff too, then I have some doubt if they might be over-diagnosing lyme, just because we don't have a reliable way to test for it.

Can anyone provide me with some information stating that PCR is accepted as reliable by those who are skeptical? Why hasn't the FDA approved PCR if it is so reliable? Don't tell me there are politics with the PCR test. I can understand the treatment protocol, but a test like that should be more clear if it works or not.

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massman
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Hey ! Here in the US when pain is gone we think we are healthy ! That is what most drug ads tell + sell us. Government allows it so it must be true.

Has anybody on this thread actually read Dr. Travells' books on this ?

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applewine
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No, I haven't, those books are expensive. The way I was thinking of it is that if you have a healph condition you may develope trigger knots. That original health condition may end, but the knots can perpetuate due to their nature of feedback. So, I was thinking treating the trigger knots themselves does not mean you are ignoring the cause, because the original cause, stress, hormone/nuorotransmitter imbalance, was an event that passed.
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canefan17
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Using the foam roller also acts as support to an exercise program.

It absolutely helps.


I just assumed you were going after the cause (Lyme)

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cactus
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I've read Travells' books. They are excellent.

I also tested positive by PCR - not through Igenex, either. Despite a negative (more than one) WB.

A positive PCR is significant.

However - the test is not perfect, in fact it is less so than the WB, because it tends to yield false negatives as well, with less information gained (specific bands, etc).

The chances of extracting a bit of blood which actually contains spirochetal DNA is slim.

Not that it's not done... It is. I'm proof. But I was lucky.

Someone explained it to me this way: throw a bucket of ping pong balls into a pool. Use a net to scoop up some water at random. Did your net contain ping pong balls? Yes? Then there are ping pong balls in the pool. No ping pong balls in your net? Hmmmm... there are still ping pong balls in the pool, just not in your sample.

Ultimately - after dealing for quite some time with my own MPS diagnosis - being told I had a "syndrome" wasn't enough. A syndrome is a name for a set of symptoms.

I wanted a cure, I wanted more than pain management and symptom relief.

It took me spiraling down even further though, into an MS diagnosis before I really got serious about finding the root of the many "syndromes" with which I'd been diagnosed.

I hope you find the root cause of your problems, applewine, whether they are caused by Lyme or something else.

Don't stop looking until you have the answer.

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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cantgiveupyet
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Massman- an online friend of mine forwarded me )I believe it was part of the book that she was able to download from the University library she worked at. I did read the part she sent.. if memory serves me correct it listed some factors that could cause trigger points? Is this the same book, or am I thinking of someonelse?

I have trigger points- mostly in my pelvic area... hipflexors being the worst affected...and lately the Psoas is super tight now too. It has varied so much the past year since I have gone to PT (one experienced in myofacial release.) Right now the muscles in the front are tighter than those in the back (gluttes, hamstrings etc)

which makes walking even more painful..


I have had improvement in some areas, but others have gotten worse.

My pelvic trigger points even affect my bladder pain.

The key is getting everything in balance..so one muscle group isnt being over worked because another group is too weak. Trigger points complicate this even further.

Apple- I go back and forth almost daily about whether I have something active or this is the aftermath of whatever inflicted me. Is the fact my pain migrates... because of Lyme...or because of something relating to the balance of the muscles.

Even my PT is at a loss, they just know that I dont react like the average patient does to her treatment and my muscles are way tighter than anyone they have treated. My Post PT pain is horrific.. which leads me to believe something else is going on with me.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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pugs
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Interesting discussion. Did read Devin Starlanyl's book on FMS where she discusses Travel's book. I too had undergone a lot of PT and got no help from it. Why? Because all this time I had an untreated infection, that's why.

Devin starlanyl own FMS and MPS was triggered by being rear ended at a stoplight. I now think that anything such as infection, trauma, etc. can trigger our immune systems to go haywire.. and part of the cascade is MPS.

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applewine
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Some other things I didn't mention is that in 2005/2006 around when the neck pain started is around the same time I started to get injections for spring allergies. They basically find out what you are allergic to and then inject you with it. About 3 months in maybe I got a really bad sickness and stopped taking the shots because they said it was not safe to take them if you are sick. I was really sick and couldn't get out of bed hardly for a long time. Then I got sick a few months later and my face got puffy that time. A year later I suddenly was hungry all the time for like 6 months and no matter how much I ate I could not quench my hunger, and felt like adrenaline was always pumping in my body and I couldn't calm down. I started gaining weight. Then one day all the energy, adrenaline and personality changes stopped and I was calm. I also noticed I couldn't stand to play video games anymore, when I had always loved them. I guess I grew out of them, but my interests and perception of things was different too. After that the strong dull ache of pain in my chest started which lasted all day every day for 6 months until I took a NSAI med for a month, which the doctor said meant it was not a problem with my stomach like reflux, but rather a muscular skeletal pain, but he said he didn't know what kind of doctor I should go to for that. I used to have tons of energy from around 2004 to 2006 for about three years. I felt like I had so much energy I was always going to the gym and I was on a super high calorie diet with lots of carbohydrates. My neck started to hurt a little but I was like superman. Then around 2006 the energy went away and just about since then I feel really lacking energy all the time. I can't go out at night also normally, I don't really get excited about things any more. If I get 8.5 hours sleep I will be tired after work and almost ready to sleep again, sometimes only.

Prior to getting all this energy the first time I had quit taking ADD meds. After stopping that I went through a period of extreme depression for about a year, then I went through a period of lots of energy and euphoria for about 2 years after that. I think my brain was over shooting to compensate for the loss of dopamine. I didn't taper off the meds like I should have (I didn't know you should) and went from 5 years straight to none in one day. I can see how this may have played with the balance of my system, or maybe I got bitten by a tick, or the allergy shots did it. I don't know. Either way, I feel more tired than a regular person would. I'm not superman anymore, but I'm not even normal energy anymore either.

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sutherngrl
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I had the trigger points, especially around the collar bone area. Very tender. Also could not raise my arms at all. I could barely dress myself. After treating for LD for a year they started to go away. After 2 years of treatment, they are completely gone.

I had the diagnosis of Fibromyalgia before getting the diagnosis of Lyme Disease. FM is a stupid diagnosis, because there is no known cause. Its easy money for the doctors and they can load you up with pain meds and antidepressants for the rest of your life.

FM is about the same thing as the syndrome you are talking about. No known cause or cure! Thats ridiculous in my opinion. There is a cause...... most doctors just aren't willing to explore the cause.

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applewine
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There is supposed to be a cure for myofascial trigger points. Its called myofascial release and dry needling. janet travell wrote two books about this. Its just that there are very few people trained to perform the cure. Also, I have an appointment with somebody who is trained, I will ind out if it works or not soon enough.
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applewine
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quote:
Originally posted by sutherngrl:
I had the trigger points, especially around the collar bone area. Very tender. Also could not raise my arms at all. I could barely dress myself. After treating for LD for a year they started to go away. After 2 years of treatment, they are completely gone.

I had the diagnosis of Fibromyalgia before getting the diagnosis of Lyme Disease. FM is a stupid diagnosis, because there is no known cause. Its easy money for the doctors and they can load you up with pain meds and antidepressants for the rest of your life.

FM is about the same thing as the syndrome you are talking about. No known cause or cure! Thats ridiculous in my opinion. There is a cause...... most doctors just aren't willing to explore the cause.

So you took an anti-biotic for two years? Did you stop then? Did you have to do a pill or an IV? Is all your muscle pain gone? How long did you have the pain before you started treating for lyme?
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applewine
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Also, did the treatment make you sick at all? Were you able to work? Please tell me more about the treatment.

[ 06-05-2010, 02:48 PM: Message edited by: applewine ]

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cantgiveupyet
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applewine- I have had this done for a year now... prior to that I had it done for 6 months. It helps some, but the trigger points return within a week if not sooner.

Hopefully, you will have better luck.

quote:
Originally posted by applewine:
There is supposed to be a cure for myofascial trigger points. Its called myofascial release and dry needling. janet travell wrote two books about this. Its just that there are very few people trained to perform the cure. Also, I have an appointment with somebody who is trained, I will ind out if it works or not soon enough.



--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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massman
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I had some work done on me that worked better than the MFR.

It is called Pfrimmer (sp ?) technique. It is a low force technique that does not use a lot of pressure or force on the affected area.

cantgiveupyet - the practitioner did not show you how to work on some of the trigger points to keep things going well ?

I always had weekly lectures / presentions when I showed patients how to work on trigger points with tennis balls. IME this was a very important thing to do to keep them doing well.

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cantgiveupyet
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Massman... the answer to that is yes and No...

I purchased a Yamma ball (spelling?) to work on the trigger points in my piriformis muscles, however I found that it actually made things a lot worse.

stretching flares me too (makes the muscles tighter)

I have also read online that you shouldnt stretch until all the trigger points are resolved.

Im going to have to ask the PT if what we are dealing with in the Psoas is trigger points or just muscle tightness.

Some muscles have improved and others are now much worse.. sigh

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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massman
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Some do well with working on TPs - the ones that dont do well - then there is something perpetuating them. Could be one or more than one factor involved.

Dehydration ? Nutritional factor ? Bones need better alignment ? Feet, ankles, knees, pelvis, spine, shoulder, skull etc ? Other stressors ?

There has to be afactor or factors that do not let that muscle work correctly.

Practitioners job to find it.

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cantgiveupyet
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Massman- I had to laugh at your last line

"practitioners job to find it" I wish that were the case with me.

I have become my own PT in a sense.. she is at a loss because I dont have the same reaction as 'the average patient" she often takes the easy way out and blames it on the lyme.

Stretching usually wont cause a patient to have tighter muscles- with me it does.

walking now tightens all my muscles (before it was never ever this bad)

trying to do strengthening also will tighten some muscles. and these muslces will not relax/release until the next PT session where she has to get them out of the flare.

I know certain muscles have gotten worse in the last few months...seems maybe PT has really stirred something up. I drink 2L of water a day. for me I got lumped into the pelvic floor/SI dysfunction, interstitial cystitis group of patients.. but only I am not like any the practitioners that treat this have seen.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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massman
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Do you take any mineral supps ?
If yes is it major minerals ? Which ones ?
Trace minerals ? Source ?

What kind of water ? Well ? Distilled ? Tap ?
Source ?

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cantgiveupyet
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I dont take minerals

water - Evian- due to the higher PH..doesnt bother my bladder.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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NanaB
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I have been to so many people in my area claiming they know how to do myofascial release - but they don't know how to do it. Done correctly it does help me some.

I had it when I visited my mom in CA. I had it from a Chiro in Kansas City - that is all he will to for people with the pain syndromes of Fibromyalgia/CFS/Myofascial Pain. It helped but the drive home undid it all - too much stress.

There are very few who seem to know how to do this properly. Done correctly you stretch in the direction the muscles go - and our muscles don't go straight up and down our back. I just saw two massage therapists claiming to know and that's what they did. That doesn't help at all.

True Myofascial Release starts at the spine and goes in more of a slightly up and then out towards your side type of motion - just like the muscles in your lower back. Our muscles kind of "wrap around" us.

I relax so much when it's done correctly that my spine automatically adjusts without the thrusting movement of chiropractic. If it isn't done right, it has no benefit to me whatsoever.

--------------------
Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help.

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Wonko
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My chiro has effectively treated this in me, and it has greatly improved my quality of life.

Whether my myofascial condition was triggered/contributed to by Lyme or not I can't be sure, but it certainly required separate treatment. I could take abx forever and it wouldn't get my trigger points to release.

I agree that it is difficult to find a good practitioner.

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sparkle7
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I didn't read through everything here. I had a CFS diagnosis with no positive tests, I had a FMS diagnosis with no positive tests aside from about 7 minutes with a Rhumatologist, I had a Lyme diagnosis with no positive tests (well, not considered positive in NY State) & now I have a Babesia diagnosis with no positive tests. All from different doctors...

The tests are not accurate. The doctors do know know how to treat our illness for the most part. I don't know if the drugs help or not. It's all a gamble as far as what I could see. We may even have a retrovirus called XMRV... So, in that case, any abx treatment would not help.

I have tried myofascial release therapy & various other physical therapies & massage & they have not helped. Sometimes, they make things worse. I have also tried Guafenisin therapy which did not work for me.

Good luck in trying to sort all of this out. I have been trying to get well for 15 years. If you are waiting for the FDA or some gov't agency to come up with accurate screening or treatment - you will be waiting a long time.

I'm not intentionally trying to be cynical. I wish everyone good luck with this issue here. I know it's quite difficult.

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