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Dr. Stoll,
I was diagnosed with Fibromyositis. It has been four months of chronic pain in lower back, right hip, knees and now it is the neck and shoulders. After numerous x-rays (negative), blood test for Rheumatoid ARthiritis (negative), did Osteopathic treatments..., basically there were no results except that the last diagnosis, my MD said that I have Fibromyositis. I am 39, two kids, used to work out 4 times a week (cardio and weights) and now can't hardly move.
My question to you is that people with this illness, the only cure is Relaxation Technique. You dind't mention anything about chiropractic or Homeopathy treatments. Do you know if it is worthwhile trying them. I hear a good Chiro may be able to loosen up the tension in the muscles. Or a good Homeo might find THE remedy for this illness. What do you think? I need directions. By the way, my MD put me on Flexeril and Zoloft for few weeks and I am not very interested in taking medications... Please give me directions. Thank you, Guilda
In Reply to: Fibromyositis posted by Guilda Chalhoub on March 13, 1999 at 09:12:46:
Guilda
I was diagnosed with FM two years ago. Bless your heart, you
are on a tough road, but there IS hope, and this is not
something you have to live with the rest of your life, as
doctors said to me. The BEST thing I have done is to have a
personal coaching session with Dr. Stoll, just invaluable.
He helped me see how my whole body is involved, not just the
noticeable outward signs.
As I look back, the things you mentioned -- chiropractic,
homeopathy, Zoloft, Flexeril, etc. -- those things HELPED at
the time, but they just bought me a little relief until I
could do the real work myself or rebuilding my body from the
inside out. Read and reread Dr. Stoll's book, because it
will introduce you to a mindset of holistic medicine that
the MD has no knowledge about. There is also "Mind As
Healer, Mind As Slayer" that can be bought from Amazon.com.
When you really marinate in these books you will understand
why skilled relaxation is an absolute requirement in today's
world if you are suffering the longterm damage of
stress-effect that fibros have.
SR was the last thing I was willing to do. I didn't believe
in it, and I didn't want to slow down. I can remember
sitting in my kitchen (the only chair in the house that
didn't make me hurt) and reading the books and just
stubbornly learning ABOUT SR but not PRACTICING SR. But when
I finally gave in because of desperation, it paid off.
Until you are to that point, yes, the other stuff "helps",
but they are short term helpers, not long term reversal.
Something else that has really enlightened me to the effect
diet has on my physical state is to do Robert McFerran's
elimination diet (look in Archives under Arthritis) and
subsequent food testing. It is less than a month-long
process, and my FM symptoms completely cleared during the
first few days. The only time they returned was right after
I ate a food to which I had an allergy, so I now know what
foods to avoid.
Feel free to email me at any time, and we hope to see you
hanging out at this website as you search for the path to
good healt
In Reply to: Fibromyositis posted by Guilda Chalhoub on March 13, 1999 at 09:12:46:
Guilda,
I'm going to make a bold statement here that I hope doesn't put you off. It would put me off if I had fibromyalgia and learned what you have learned from your allopathic physicians.
I have NEVER seen anyone that has not lost 80% of their fibromyalgia symptoms within 6 months and 95% of their symptoms within a year IF they follow a protocol of proper dietary manipulation and skilled relaxation.
At the same time I've never seen a homeopathic remedy or anything that a physician has prescribed that will fix fibromyalgia.
It sounds like you want your life back. If so let me know and we'll start your education about what is meant by proper dietary manipulation and skilled relaxation.
Bob
In Reply to: Fibromyositis posted by Guilda Chalhoub on March 13, 1999 at 09:12:46:
This is the beginning of Multiple Chemical Sensitivity symptoms, and likely caused by dental amalgam!!!
Some call this total allergy to mercury, another idiotic name since mercury is a potent neurotoxin.
You may believe me or go thhroug a lot of medical nonsence.
Best test get rid of mercury amalgam, even it is costly replace it with dental porcelain, and no metal sexcept titanium. No gold, berillium, platinium, copper or other crap. Watch for metallic taste in mouth!
If you have shock like electrostatic while eating with metal utensil and feel metallic "flavor", a sign of galvanic electrolysis such will be the best confirmation of the causation.
Read al you can about MCS, neurogenic inflamation, change diet to avoid acidic food. Get Qiuinam to reducce acidity in muscles, say by to your doctor, and stay away from pills. Fibromyositis, Fibromyalgia, Myofascial syndrome, is all the same (MCS). Loss of substance in your muscles called myelin, (a muscular gel) is likely what you have as result of the above, and this can not be compared with RA.
While I am not a doctor, I went through all same crap with almost 40 doctors who lied to me to follow the stream of misinformation campaign by the Insurance industry.
Reduce the input of food increasing acidity, and soak yourself in relaxing baths. It is very interesting that while hot bath reduces the pain, the cold weather reduces the symptoms (according to NASA research). It sounds a little illogical!!
In Reply to: Re: Fibromyositis posted by Robert McFerran on March 13, 1999 at 12:12:44:
Right on BOB!!
If they only know more about dental amalgam as likely causes of such symptoms!
Your diet I presume, will also control acidity, am I on same frequency with you?
I had 35 X-rays in one sitting, blood tests.
When I returned home, I went to dark bathroom to check if I am already glowing!
The acidity with dental amalgam, are very likely the cause of such medical intellectual placebo effect of great majority of cash flow medicine practitioners!
In Reply to: Re: Fibromyositis posted by Robert McFerran on March 13, 1999 at 12:12:44:
Hi Bob,
Thank you for responding. I definitely want my life back and get rid of this FMS business. LIke I said I am currently on Flexeril and Zoloft for couple of weeks as prescribed by my my MD just to ease down the pain. I am willing to do anything "the natural way" in order to to get back to normal.
I appreciate you helping me learn about what is meant by proper dietary manipulation and skilled relaxation. I also need to know if regular exercise will help (swimming, walking, cardio activities).
I am also currently taking a natural colon cleanser.
Robert, did you experience fibromyalgia in the past and managed to get rid of it and you know a lot about it?.
Guilda
In Reply to: Re: Fibromyositis posted by Johnelle on March 13, 1999 at 11:21:10:
Hi Johnelle,
I was very glad to hear from you knowing that you have been where I am today and that you are over it. I must say your message gave me a relief knowing that there IS hope for FM. I was almost sure that the medications I am on now are just temporary,, until I read your mail and now I am definitely sure that they are.
I am willing to do anything it takes to get better. I know I am on a tough road, it took me a while to get over the fact that there is something unusual happening in my body, no one knew what it was until my MD finally said it was FM.
I have ordered Dr. Stoll's book and the Skilled Relaxation book, they are on their way and I will take a look at Mr. Ferran's elimination diet.
Johnelle, you have said that after you followed the diet, all the FM symptoms cleared up. Does this means that you didn't have any more pain? My pain lies in my shoulders, neck, lower back (which is the worst), hip and knees. Will the diet help the pain in those areas? Tell me how your SR worked? How did you start it? When did you feel it was working for you? and how long did it take for you to do it right? and How long did it take you to heal completely?
Johnelle, I appreciate your help in this, I can't tell you how much it is going to help me speaking with someone that understand what I have and what I am willing to do to get better.
Guilda
In Reply to: Fibromyositis posted by Guilda Chalhoub on March 13, 1999 at 09:12:46:
Hi, Guilda.
In the long run, SR is essential to actually curing this condition. In the short term, there are MANY ways to get temporary relief: Chiropractic, the e/diet Robert McFerran is discussing on this BB right now, Rolfing, the series of massages discussed many times, Alexander technique, Feldenkrais, Reflexology, Acupuncture, increasing the intracellular magnesium level, etc. All of this has been discussed on this BB for years & should be in the archives. Also, see the homepage for this 'site.
Stretching programs would also help. See "Synergetics" by Hay & Hay as my favorite. ANYTHING gentle will help.
Once you have the above under your belt, if you still have questions, write again.
Walt
In Reply to: Re: Fibromyositis posted by Johnelle on March 13, 1999 at 11:21:10:
Thanks, Johnelle.
Your wonderful testimonial will spread the word that this is not a hopeless condition.
Namaste` Walt
In Reply to: Re: Fibromyositis (Many temporary solutions but only one long term.) posted by Walt Stoll on March 14, 1999 at 09:58:29:
Hi Dr. Stoll,
Thank you for responding. I am looking forward reading your book and the Skilled RElaxation one that I have ordered last week. I certainly do want to get rid of FM permanently and I will practic SR as soon as I receive the book. However, I am bit confused about one of the response I have received on the BB by JN: JN said that this is the beginning of Multiple Chemical Sensitivity, and likely caused by dental amalgam. Is it possible that having lots of metal in your mouth may cause what I am having? If that is the case, should I replace all the metals fillings by porcelain one? Can you please enlighten me?
Thank you,
Guilda
In Reply to: Re: Fibromyositis (Many temporary solutions but only one long term.) posted by Guilda on March 14, 1999 at 20:27:45:
Dear Guilda,
I agree with JN in so far as that chronic stress-effect opens up all of us to all environmental stimulae to stress us further. Dental mercury is but one of the common ones that significantly contribute to problems like this.
The problem is that, if one just identifies and avoids those stressors that are bothering us enough to detect them (a very difficult thing in itself), it will only give us temporary relief unless WHY we are sensitive to them is dealt with.
People with the chronic stress-effect storage in the hypothalamus are MUCH more likely to get MCS and THEN the MCS makes that problem worse.
You have heard how the predators seek out the weakest member of the herd???? My book does discuss this mechanism.
Walt
In Reply to: Re: Fibromyositis posted by Guilda Chalhoub on March 14, 1999 at 08:00:53:
Guilda
It gave me cold chills to think I could help someone else as
I have been helped, and that someone really wants to listen!
Walt Stoll is the person who taught me, and HE helped me so
much that I want to be a part of his mission to get the word
out about how to have good health.
I didn't mean to leave the impression that I am completely
free of the symptoms of FM. My symptom-free state depends
upon my continual SR's twice daily at this point, and it
depends on my following the right diet.
Yes, I am pain free with the exception of one very deep and
chronic pulled muscle below my left shoulderblade. I think
eventually I will have to use the guaifenesin treatment to
get rid of the phosphate buildup in that area.
My FM centered around my neck, and when it was at its worst
it also was into the low back and hip, so I've gone your
path and know it's a nightmare.
The FIRST practical thing Walt recommended (while I was
getting my reading assignment accomplished) was to have a
series of ten Rolfing sessions to buy myself some time in
the muscle tension department. I had to go to Oklahoma
City, two hours from home, once weekly for ten weeks to
accomplish this, but it was worth it. He said I would
experience the benefits of those sessions for about a year.
When I started, I had a hip muscle that was grabbing and
locking up, and the very first session the Rolfer
concentrated on this area and eased the pain. I would have
been right back where I was before the session, however, if
I hadn't also incorporated into my next week SR and gentle
stretching exercises. My Rolfer commented that I was a good
patient because I actually did everything he recommended I
do in follow-up. Most people came in, had an adjustment,
and came back the next week complaining that it didn't last.
FM is a curse that requires a lot of proactive moves on your
part to deal with, as you probably know.
Walt told me how to locate a Rolfer close to me, so if
you'll let me know where you are located I'll look up in my
directory and see if there is someone near you.
You asked about the E-diet and pain. Yes, every bit of my
discomfort (except the chronic strain in the shoulderblade)
cleared up the first six days. The only time it comes back
is when I discover a new food allergy to a food I am testing
-- green beans, beef and broccoli all brought on symptoms
like a terrible FM flare. Grains have brought a response
mostly centered in the neck. I'm sure if I continued eating
them I would be right back where I started.
To give you an example, I tested rye crackers yesterday. I
ate several through the afternoon. The first problem that
developed was a mild muscle tension headache. It got worse
and traveled down into my neck, terrible strain. By bedtime
I had TMJ, and this morning the headache was horrific, after
a bad night with a lot of dreaming. My jaw was very sore
this morning. It's all because of rye! That's the beauty
of the E-diet, it convinces you of the direct correlation
between FM and what you eat.
You asked about my SR journey. I read the Relaxation and
Stress Reduction Workbook (my third book assignment from
Walt) which helps you grasp what SR is all about and works
you through different forms of SR. You will find one that
is right for you when you work through the book.
I knew the SR was paying off in about two weeks. That's
when it hit me that I didn't have dry eyes anymore or a dry
mouth, both side effects of chronic bracing and FM. Then my
chronic constipation eased up a lot. (Diet has completely
cleared that challenge) My muscles in my face were
obviously the first to relax at my command (because of the
dry eyes and mouth disappearing). It seemed those muscles
had to "teach" the ones closest to them to release, because
I noticed the releasing during SR in this order: face,
neck, shoulders, abdomen, hips ... still working on arms and
legs, but they are secondary to the other parts. I have
become so sensitive to the ability I have to release muscles
on command that I know when my SR isn't effective because
the right middle finger starts to have stiffness in it.
There is no definite time that I can point to as when I got
healed, because the "healing" is daily and depends on me --
my willingness to "work the program" much like an alcoholic
would. My program is SR, diet, gentle exercise and giving
up an exhausting lifestyle for the sake of my health. When
I don't work the program I can make a direct connection
between the choices I made that day and how I paid for it.
If you will email me I will send you a cassette of the tape
I used when I first started SR. You can stumble through it,
but I caution you that you may not become a firm believer in
SR until you recognize all the dynamics of it that you will
learn by reading the books. Commitment to consistently
practicing it is the key to success, and your agenda should
be to just BE THERE for 20 minutes twice daily, not to
achieve results. Sometimes there will be results and
sometimes there won't, but if you have committed to being
there again in the next few hours you won't get anxious
about not having a good session. Anxiety about whether
you've accomplished anything is the kiss of death with SR.
So just BE THERE.
I THINK I have answered all your questions. Feel free to
email me, and if you send the address I'll mail you the
cassette. I'd like to leave you with a thought -- FM is at
one extreme end of a line. You have been traveling toward
that point for many years. Good health will be recovered in
direct relation to how far you travel in the other direction
on that line. Each day you make choices that will determine
where you will be on that line. Right now I perceive that
you're standing at the FM point and looking back to the
point where you had what you perceived to be good health,
and trying to figure out what you have to do to get back
there. That's very good! You have taken a step in the
right direction by ordering the books. I have pointed out
some tools that you can use to get you further in that
direction.
Walt gave me some tools, and I'
In Reply to: Re: Fibromyositis (Many temporary solutions but only one long term.) posted by Walt Stoll on March 15, 1999 at 10:25:12:
Guilda
My FM problems included dental decay (due to bracing, which
deprives the mouth of nutritional blood supply I suppose?)
and as I had problems and had fillings replaced I would have
porcelain fillings put in, but I didn't have everything
replaced at one time. The trauma of dental work is enough
to aggravate FM symptoms in itself. I can give you a
website that will explain more about that if you like.
Johnelle...
In Reply to: Fibromyositis -- the path to reversal (TESTIMONIAL) posted by Johnelle on March 15, 1999 at 11:03:08:
Hi Johnelle,
Thank you for responding and for sharing your experience with me. It is very interesting and full of hope, but somehow I have fears that I cannot describe. Maybe because this situation is tougher that I thought it would be. I told you that my MD prescribe Flexiril and Zoloft for me, I've been taking them for couple of days, last night I had a horrifying experience. The side effects were very bad, I had no appetite, diareah, chronic headaches and neck pain and couldn't sleep, my body was all shook up. I have decided today to stop all the pills and to rest for the day, I didn't go to work because I feel week. I was taking a colon cleanser whihch was releiving the pain in the lower back and I have to stop that for couple of days. so basically, I have to start from scratch, I can't do the elimination diet because I feel very weak now and not ready for it. I would like to get started as soon as possible with the SR so I appreciate you offering to send me the tapes you've used, I live in Montreal and my address is:
Guilda Chalhoub, 4400 Ste. Anne, Pierrefonds,Quebec H9H 2Z4.
Johnelle, what did you do in the meantime to get some relief, I will wait to tell me if there is Rolfing treatments close to me that I can take , or can I go to a chiropractire?
I would like to go back to swimming and walking if it is possible? Is that recommended?
Johnelle, do you think there is a possibility I can discuss FM in all of its aspects over the phone with you, it will be helpful if I can call to you and discuss it over the phine. I would appreciate it very much. I don't want to put you under any pressure of any kind, it's up to you.
In your e-mail, you mentionned something about the tools that Dr. Stoll had given you, but the sentence was cut off, so I never found out what there were.
Again, Johnelle, thank you very much and God Bless you.
Guilda
In Reply to: Re: Fibromyositis (Many temporary solutions but only one long term.) posted by Johnelle on March 15, 1999 at 11:11:37:
Johnelle,
I just had a root canal and a crown put in porcelaine right before the symptoms started to happen. My crown still hurt when I touch it and the dentist cannot help me. They gave me antibiotics thinking that there was inflammation, he tried adjusting the tooth bite, no relief. So I am wondering if that has any relation with the aggravation I've been having.
I appreciate you sending me the address of the web site that talks about that. If you need to e-mail me personally for whatever reason my e-mail is :chalhoub@sympatico.ca
Thank you,
Guilda
In Reply to: Re: Fibromyositis (Many temporary solutions but only one long term.) posted by Guilda on March 15, 1999 at 12:13:26:
Guilda,
I have seen quite a lot of discussion recently about root canals, the dangers, and what to do about it. I think it was on the Eat Right For your Type site : www.dadamo.com
It might be worth going and having a look in the buuletin board archives there to get another perspective.
Best wishes, Deb.
In Reply to: Re: Fibromyositis -- the path to reversal (TESTIMONIAL) posted by Guilda Chalhoub on March 15, 1999 at 12:08:11:
Guilda
I understand where you're coming from today. You can call
me anytime. I will be home this evening, and I will email
you my phone number.
There is something wrong with my AOL and it always cuts off
the last few words if I forget to put periods after my name
... sorry. I was just saying that Walt gave me some tools,
and I am willing and ready to share them with others.
God bless you too.
Johnelle............
In Reply to: Guilda - root canals posted by deb on March 15, 1999 at 15:24:00:
Guilda and Deb
I had three root canals IN A ROW, and I still have phantom
pains in at least one of the teeth that convinces me this is
all FM-related in my situation. My dentist has taken the
attitude that rather than fix something in MY mouth, why
don't I just tough it out and see if it changes/disappears.
With FM you can have all sorts of mixed messages in the
nerves because when the rigid connective tissues of FM
contract muscles that causes lots of complications. I'll
post the site location of what FM'ers should give to their
dentists explaining complications of FM.
Johnelle.......
In Reply to: Re: Fibromyositis posted by JN on March 13, 1999 at 18:17:20:
Hi JN,
I guess what I was REALLY wanting to get out of you is what therapies that YOU would prescribe for the catalog of very real things that you've been addressing over the last several days.
I know that awareness of these factors can be a great help in and of itself -- but when faced with such a dizzying array of different things where would YOU start first in developing a protocol that EVERYONE could follow to regain their health?
Thanks for your insights into what actions to take first.
Bob
In Reply to: Fibromyositis -- the path to reversal (TESTIMONIAL) posted by Johnelle on March 15, 1999 at 11:03:08:
Thanks, Johnelle, for your great testimonial.
Now, if we could get everyone with fibromyositis to read this, they would begin to understand the "process" of resolving their problem.
This note should be archived under testimonials or fibromyositis.
Walt
In Reply to: Re: Fibromyositis posted by Robert McFerran on March 15, 1999 at 21:33:19:
Dear Bob,
Believe me I am not yet an expert, but I have some positive results.
There are several steps. First one and as much as it is very controversial, and may sound strange, and even expensive beyond doubt first step "in my opinion" is to get rid of
f....n dental mercury. I believe now that PARKINSON'S is caused by dental mercury.
I also may surprise some of you but there is scientofic evidence that CFIDS, is related to oral POLIO vaccine, by unintentional infection with cytomegalovirus from green african monkey, and (the kidney?) the monkey tissue was used to produce POLIO in early 60ties.
(re.: USC - Prof Martin research).
There also is simmilar connection between AIDS virus, chimps, and vaccines. They can not reveal this information since such may cause world panic, and anti vaccines sentiments.
Ther is very little one can do without achieving this step.
Than next is to control and get well balanced diet by introduction different foods progresivelly. The fibromyalgia or "thickening of myelin" is very likely caused by neuromodulation of limbic center of the brain blood barrier. Neurotoxic activities however may be as result of bacterial activities in the gut. Gram negative bacteria produces very potent toxin (complex sugar - lipopolysaccharides) which are the causes of multiorgan infections. You may learn about LBP pattents from site www.xoma.corp. Therefore while many are ignoring such it may be important to purge the colon of bacteria and toxins. In my case I can control toxins with activated charcoal powder with excellent results so far. There is however problem with erridicating bacteria from my system, which are not responding any more to antibiotics. I went with severeal courses of metradonizole, prevacid, and Biaxin and die off (herxheimer effect) was very severe.
I also used CIPRO, TROVAN, AGUMENTIN, and had extreme pharmatoxic reaction to CECLOR CD.
In my case the test are still confirming anaerobic gram negative bacterial infection in the stomack, associated with CFDIS, FM and CMS.
Next is to proceed with fungal infections (i.e. candida albicans - mycotoxins).
The skilled relaxation and understanding by familly members is very important.
Once more as strange it sounds the classic sauna is very important to "vent" toxins from the system.
One of my doctor patients iwas analized in Portland (Official Experimentsal State of Oregon Environmental Clinic) while the blood tests were negative for mercury, the hair analysis and urine showed prior to mercury removal mercury from evident dental poisoning. She is getting experimental chelation theraphy using new made in Germany chelation intermuscular injections of agent. Note this is approved by State Clinic teraphy for people with Chemical injuries. The clinics inOregon were established by the State in cooperation with University of Oregon to treat patients with chemical injuries. (Fibromyalgia is an element of MCS, CFIDS, if not the same disease at different stages.)
The US specialist on FM is Dr. Devin Starlanyl who have extensive data for all medical personnel from differnt specialties on web site. I suggest fo follow his guidance, and that is how I learned a lot.
This is very consistent with posted on this site total bacing syndromres.
Ie Dr. Devin Standryl Information for Neurologists:
Dr. Devin Starlanyl, MD
http://www.sover.net/~devstar
This information may be freely copied and distributed only if unaltered, with complete original content.
You have seen patients with fibromyalgia and myofascial pain syndrome, and will see more. They are both very real medical conditions, and both very different, although often confused. Patients with FMS and/or MPS may react differently to surgery and its associated care.
Fibromyalgia is a systemic neurotransmitter condition with, among other things, a disrupted renal-hypothalamus-pituitary axis. It is nonprogressive (although it may seem so), nondegenerative, and noninflammatory. It is responsible for diffuse body-wide pain, tender points that hurt but don't refer pain, and sleep disturbances. It is a pain amplification syndrome. Some of our receptor endings have changed, so we feel pain more intensely. We have allodynia, so be prepared for more intense post-surgical pain, as well as longer healing time due low growth hormone and associated healing factors.
Chronic myofascial pain syndrome (MPS) is a musculoskeletal chronic pain syndrome. It is nonprogressive (although it may seem so), nondegenerative and noninflammatory. It is composed of many Trigger Points (TrPs), which refer pain and other symptoms in very precise, specific patterns. It seems progressive because each TrP can develop satellite and secondary TrPs, which can form secondaries and satellites of their own. With treatment of the TrPs and underlying perpetuating factors, however, these TrPs can be "reversed" and minimized or eliminated.
When occurring together, what I call the "FMS/MPS Complex" forms. This is a condition of interconnected symptom spirals that get increasingly worse until the spiral is interrupted. For example, the pain causes muscle contraction which causes more pain which causes more contraction, etc. The patient can sometimes have muscles that are like cement, due to myofascial splinting. Immobility will usually cause symptoms to worsen, and muscles to contract. Sometimes patients will not be able to endure the hard hospital beds. Some of us even find water beds too hard, and need additional padding.
Two excellent medical texts are available on MPS, "Myofascial Pain and Dysfunction: The Trigger Point Manual Vol. I and II" by Janet G. Travell M.D. and David G Simons M.D. The second volume is important to you, as it deals with lower body TrPs. This chapter is but an introduction to them. The Manuals show the referred patterns, tell what causes them, and how to relieve them.
Many of your patients may suffer from allodynia or hyperesthesia, and thre are specific symptoms of FMS/MPS Complex that should put up a red flag.
Morning stiffness: This is primarily due to the immobility of the night. Any time we stay in one position for any length of time, our body stiffens in that position due to inflexible myofascia. This stiffness may take hours to work out.
Muscle twitching: Eye twitching is often the first noticeable twitch in FMS/MPS, and it's very common. Check the periorbital TrPs, especially around the upper eye ridge. You will probably find some real screamers. Also check the sternocleidomastoid, the temporalis and the trapezius TrPs for possible causes of the eye twitch. You may also find other head TrPs. Other muscles twitching can become bothersome. Sometimes it can be a continuous twitch. Sometimes one or two muscles will fire off now and then. Fasiculations and waves of twitches can be due to low-level TrPs. This has been described as having your nerves plugged in to twinkling Christmas lights. Other people have severe twitches that disrupt their functioning. These can become painful cramping.
Trouble falling asleep, trouble staying asleep,light sleeping, interrupted sleep, wake up feeling tired and unrefreshed : These are symptoms of the alpha-delta sleep disorder, which often occurs with FMS/MPS.
Difficulty getting out words you know, especially nouns and pronouns: This is part of the "cognitive deficits" package we get with FMS. Names and nouns get awfully hard to find. It's frustrating.
Difficulty distinguishing right from left and/or difficulty finding places or following directions: They say that there will never be a rally for fibromyalgia because none of us could find where it was held.
Short-term memory problems, confusional states: We often can't do a number of steps in sequence. I found that I was unable to deal with appointments on the half-hour while working on my book. My mind wouldn't register them as half-hour. I'd come a half-hour early or a half-hour later. The concept was too much for me to grasp, because of the extra work load.
Severe problems estimating distance and depth perception: This can cause driving to be extra exciting, especially if sternocleidomastoid TrPs are involved. They can cause severe dizziness when the field of vision is changed rapidly, and many other proprioceptor disturbances. Any pattern on light and dark, such as window blinds, escalator steps, trees along a road or patterns in fabrics can cause dizziness or even a seizure-like feeling.
Free-floating anxiety, panic attacks, rapid mood swings, irritability with unknown cause, trouble concentrating, inability to recognize familiar surroundings: This is all part of what we term "fibrofog", and can be part of the neurotransmitter imbalancing. This can be worsened by reactive hypoglycemia, which must be modified by diet (see patient handouts).
Sensory overload: This is what I call the feeling that information and stimulation is coming at you so fast you can't deal with it. We either go into a "fugue" state -- we stare into space for a while until our brain catches up (this can happen mid-sentence) -- or we close down some sensory input. In the latter case, we shut off car radios, leave noisy rooms and avoid cities. We need our "space".
Depression: Too little serotonin may trigger depression. Acute pain that diminishes in the course of a natural healing process is something that most of us can live with. Recurrent or persistent pain, especially due to an unrecognized or untreatable cause can threaten our future function and well-being, which can lead to frustration, depression and progressive disability.
Sensitivity to cold, sensitivity to heat, sensitivity to humidity, sensitivity to barometric pressure and approaching storms: these are part of body "thermostat" regulation problems. One minute we're hot, and the next minute we have the chills. I've not had as many chilly periods since I started taking timed-release niacin. That opens up the peripheral circulation. Bodywork helps as well, although it won't do much about the thermostat problems. The hypothalamus at base of brain is our thermostat, so this is part of the disrupted HPA axis. The hypothalamus sends a message to the body to contract or dilate blood vessels, via neurotransmitters. Some of us run a low-normal temperature, and some of us have chronic low-grade fevers.
Take a good history. We often have abnormal electromyographic results due to nerve entrapment by TrPs, and even abnormal EEGs, although these vary, like the symptoms, from hour to hour and day to day. There are often white blotches in the MRIs. Once you see this pattern of signs and symptoms and understand the concepts of FMS and MPS, they will become easier to recognize.
Dr. Devin Starlanyl, MD
http://www.sover.net/~devstar
This information may be freely copied and distributed only if unaltered, with complete original content.
Antibiotic Therapy for Chronic Infections
Please consult Antibiotics Recommended When Indicated for Treatment of
Gulf War Illness/CFS/ FMS for general information. We are finding that
subsets of GWI (~50%) and FMS or CFS (~60%) patients have chronic
mycoplasmal infections, and probably other infections as well. We
usually recommend several 6-week cycles of doxycycline, ciprofloxacin,
azithromycin, minocycline, clarithromycin or other antibiotics with
2-week cycles of Augmentin in between or concurrently , if needed. To
overcome Herxheimer reactions or die-off that cause chills, low grade
fever, night sweats, muscle aches, joint pain, short term memory loss
and fatigue) or adverse responses i.v antibiotics have been used, and a
whole lemon/olive drink is useful (1 blended whole lemon, 1 cup fruit
juice, 1 tbs olive oil--strain and drink liquid). This period usually
passes within 1-2+ weeks. Some physicians add the antiviralFamvir (500
mgX3/day) for first 2 weeks in each 6-week cycle of antibiotics. The
rational is that mycoplasmas have some characteristics of viruses, and
antivirals can have a useful effect. Alternatively, viral infections
may also be important in these illnesses.
Other Therapies for Chronic Infections
One therapy that appears to be useful is oxidative therapy. This can be
done at home with peroxide baths(2-4X 16 oz. bottles of 3% hydrogen
peroxide in 20 inch bath or Jacuzzi) with 2 cups of Epsom salt. Repeat
2-3X; no vitamins 8 hr before bath. The hydrogen peroxide is added
after your pores are open by a few minutes in the hot bath. Peroxide
(3%, one 16 oz. bottle) can also be directly applied to skin after a
work-out or hot shower/tub. (For better effect apply Swedish Beauty
type A tanning accelerator for 5 min before peroxide.) Leave peroxide=20
on for 5 min and then wash off. For oral irrigation, mix 1 part 3%
peroxide with 2 parts water 3X per day and use like a mouth wash.
General Nutritional Considerations
GWI/CFS/FMS patients are often immunosuppressed and could be susceptible
to a variety of opportunistic infections, so proper nutrition is
important. You should not smoke or drink alcohol or caffeinated
products. Drink as much fresh fluids as you can, lots of fruit juices
or pure water are best. Try to avoid high sugar and fat foods, such as
military (MRE) or other fast foods and acid-forming, allergen-prone and
stressing foods or junk foods. Increase your intake of fresh
vegetables, fruits and grains, and decrease your intake of fats and
eliminate simple or refined sugars that can suppress your immune
system. To build up your immune system cruciferous vegetables, soluble
fiber foods, such as prunes and bran, wheat germ, yogurt, fish and whole
grains are useful. In some patients exclusive use of 'organic' foods
have been beneficial.=20
Vitamins and Minerals
GWI/CFS/FMS patients are often depleted in vitamins (especially B, C and
E) and certain minerals. Unfortunately, illnesses like GWI result in
poor absorption. Therefore, high doses of some vitamins must be used,
and others, such as vitamin B complex, cannot be easily absorbed by the
gut (oral capsules). Sublingual (under the tongue) natural B-complex
vitamins in small capsules or liquids (such as Total B, Real Life
Research, Norwalk, CA, 310-926-5522) should be used instead of oral
capsules that are swallowed. General vitamins plus extra C, E, CoQ-10,
beta-carotene, folic acid, bioflavoids and biotin are best. L-cysteine,
L-tyrosine, L-carnitine and malic acid are reported by some to be
useful. Certain minerals are also often depleted in GWI/CFS/FMS
patients, such as zinc, magnesium, chromium and selenium. Some recommend
doses as high as 300 mg/day sodium selenite for a few days, followed by
lower maintenance doses. Minerals should not be taken at the same time
of day that antibiotics are taken because the minerals can affect the
absorption of certain antibiotics.
Replacement of Natural Gut Flora
GWI/CFS/FMS patients are often undergoing treatment with antibiotics and
other substances that can
destroy the normal gut flora. Antibiotic use that depletes normal gut
bacteria and can result in over-growth of less desirable bacteria. To
supplement bacteria in the gastrointestinal system yogurt and especially
Lactobacillus acidophillus tablets are recommended. One product is a
mixture of Lactobacillus acidophillus, Lactobacillus bifidus and FOS
(fructoologosaccharides) to promote growth of these =93friendly=94 bacter=
ia
in the gut (example, DDS-Plusor Multi-Flora ABF, UAS Labs
(800-422-3371); Intestinal Care-DF, Ethical Nutritionals (Vitamin Park,
714-251-1800). L. acidophillus or mixtures above should be taken 3X
daily to restore gut flora.
Natural Immunoenhancers or Immunomodulators
A number of natural remedies, such as ginseng root, herbal teas, whole
lemon/olive extract drink or an extract of olive leaves with
antioxidants are available and are potentially useful, especially during
or after antibiotic therapy has been completed. Some examples are Eden,
Echinacea-C (NF Formulas, 800-547-4891), Super-Immunotone (Phyto
Pharmica, 800-553-2370), Immunocal (800-337-2411) olive leaf extract
(Immuno-screen, 818-966-1610), NSC-100 (Nutritional Supply,
888-246-7224), Nu-Life Formula (Sophista-Care, 760-837-1908), Tahitian
Noni (Morinda, 800-445-8596) or Super Defense Plus (BioDefense
Nutritionals, 800-669-9205). These have been used to boost immune
systems. Although these products appear to help many CFS/FMS patients,
their clinical effectiveness in GWI/CFS/FMS patients has not been
evaluated. They appear to be useful during therapy to boost the immune
system or after antibiotic therapy in a maintenance program to prevent
relapse of illness.
Yeast/Fungal or Bacterial Overgrowth
Yeast overgrowth can occur, especially in female patients (vaginal
infections). Gynecologists recommend Nizoral, Diflucan, Mycelex, or
anti-yeast creams for women on antibiotics. In some cases, use of
metronidazole (Flagyl, Prostat) have been used to prevent fungal or
parasite overgrowth or other antifungals (Nystatin, Amphotericin B,
Fluconazole, Diflucan) have been administered for fungal infections that
can occur while on antibiotics. As described above, L. acidophillus
should be taken daily to restore gut flora. Bacterial overgrowth can
also occur, for example, in between cycles of antibiotics or after
antibiotics have been stopped. This can be controlled with 2 week
courses of Augmentin (3 X 500 mg/day) in between cycles or concurrent
with other antibiotics.
Flying and Exercise
Flying, excessive exercise and lack of sleep can make signs/symptoms
worse. Some exercise is essential for the recovery process, but avoid
a relapse. Dry saunas help rid the system of contaminating chemicals,
and saunas should be taken at least 3-4X per week--moderate exercise,
followed by 15-20 min of dry sauna and tepid shower. The sauna can be
repeated, by not more than 2X per day. The idea is to work up a good
sweat, eliminating chemicals without placing too much stress on your
system. During exercise GWI/CFS/FMS patients should always try to avoid
pollutant and allergen exposures. For recovery after exercise and to
decrease muscle soreness, some use a Jacuzzi or hot tub, but only after
a sufficient cool-down period. Don=92t get overheated in the process.
Antibiotics Recommended When Indicated for Treatment of Gulf War
Illness/CFS/FMS/Arthritis
by Prof. Garth L. Nicolson
The Institute for Molecular Medicine, 15162 Triton Lane, Huntington
Beach, California 92649-1041=20
Tel: (714) 903-2900 Fax: (714) 379-2082 e-mail:
gnicimm@ix.netcom.com Website: www.immed.org
Doxycycline (aka Vibramycin, Monodox, Doxychel, Doxy-D, Doryx)=20
Doxycycline is a broad spectrum tetracycline with good lipid solubility
and ability to penetrate the blood-brain-barrier. This antibiotic acts
by inhibiting microorganism protein synthesis, it is readily absorbed by
the (normal) gut, and peak blood concentrations are maintained between
2-18 hours (half-life 18-22 hours) after an oral dose of drug. Food,
calcium, magnesium and antacids reduce absorption, and alcohol,
phenytoin [Dilantin] or barbiturates reduce blood half-life.
For Gulf War Illness/Chronic Fatigue Syndrome/Fibromyaligia Syndrome
(GWI/CFS/FMS) use, the recommended dose is 200-300 mg/day (oral, 2-3X
100 mg capsules) for each 6 week cycle of therapy. Initially,
doxycycline initially exacerbates symptoms (Herxheimer reactions or
adverse antibiotic responses, such as transient fever, skin, gut
discomfort, etc.) but these are usually gone within 2 weeks or so.=20
Patients usually start feeling better with alleviation of most major
signs and symptoms within 2-6 weeks, but in some patients major symptoms
are not alleviated until the second 6-week course. Severe reactions or
prior damage to the gastrointestinal system may require i.v.
administration of 100-150 mg/day (rapid i.v. administration is to be
avoided) for 2-3 weeks, then the remainder of the 6 week course should
be on oral antibiotic (to avoid thrombophlebitis complications which can
occur with prolonged i.v. therapy). Some react to the starch filler in
the capsules and must use Doryx, a granular form of doxycycline.
Virtually all patients relapse (show the same major signs and symptoms)
after the end of the first and second 6-week course of therapy, and
these can be run together without a pause. In a pilot study, ~85%
relapsed after 2 cycles, and after 5 and 6 cycles, 27% and 11%,
respectively, still relapsed after discontinuing antibiotic therapy. =20
In some cases doxycycline has been used successfully with other
antibiotics in situations where either antibiotic alone appeared to have
minimal effect (for example, doxycycline in combination with
ciprofloxacin).
Doxycycline is primarily bacteriostatic and effective against the
following organisms: gram-negative bacteria (N. gonorrhoeae,
Haemophilus influenzae, Shigella species, Yersinia pestis, Brucella
species, Vibrio cholera); gram-positive bacteria (Streptococcus
pneumoniae, Streptococcus pyogenes); mycoplasmas (Mycoplasma pneumoniae,
Mycoplasma fermentans [incognitis], Mycoplasma penetrans); others=20
(Bacillus anthracis [anthrax], Clostridium species, Chlamydia species,
Actinomyces species, Entamoeba species, Treponema pallidum [syphilis],
Plasmodium falciparum [malaria] and Borelia species). =20
Precautions: Avoid direct sunlight and drink fluids liberally.=20
Doxycycline therapy may result in overgrowth of fungi or yeast and
nonsensitive microorganisms (see Other Considerations). Patients on
anticoagulants may require lower anticoagulant doses. Last half of
pregnancy, infancy and children under 8 years are not recommended, in
the latter case due to tooth discoloration, but lower doses of
doxycycline have proven to be very effective in children with GWI/CFS
(if weight 100 lbs or less, 1-2 mg/lb divided into two doses; if is
weight over 100 lbs use adult doses). Patients with impaired kidney
function should not take doxycycline, and the following drugs should not
be taken with doxycycline: methoxyflurane [Penthrane], carbamazepine
[Tegretol], digoxin or diuretics. In case of complicating bacterial
infections, a 2 week course of Augmentin (3X 500 mg/day) should be
taken between courses of doxycycline or other antibiotics. For fungal
and yeast complications, please see the instructions under Other
Considerations at the end of this handout.
Adverse Reactions: In a few patients doxycycline causes gastrointestinal
irration, anorexia, vomiting, nausea, diarrhea, rashes, mouth dryness,
hoarseness and in rare cases hypersensitivity reactions, hemolytic
anemia, skin hypersensitivity and reduced white blood cell counts. In
general, doxycycline is considered a safe drug, in that there are few
adverse reactions reported in the literature.
Ciprofloxacin (aka Cipro, Cifox, Cifran, Ciloxan, Ciplox)
Ciprofloxacin is a broad spectrum synthetic fluoroquinolone antibiotic
with good absorption characteristics. This drug acts on bacterial DNA
gyrase to inhibit bacterial DNA synthesis. Ciprofloxacin is secreted
rapidly in the urine and has a half-life in the blood of about 4 hours.=20
Food delays the absorption (by ~2 hours) but not total absorption;
antacids containing magnesium, aluminum or other salts reduce absorption
and should not be taken at the same time of day.
For GWI/CFS/FMS use, the recommended dose is 1500 mg/day (for oral use,
3X 500 mg capsules) for each 6 week cycle of therapy. Ciprofloxacin may
or may not be taken with meals. Initially, ciprofloxacin may exacerbate
some symptoms symptoms (Herxheimer reactions or adverse antibiotic
responses) but these are usually gone within a week or so, and some
patients report that doses of 1000 mg/day or lower are not effective in
alleviating GWI/CFS/FMS symptoms. Patients usually start feeling better
with alleviation of most major signs and symptoms within 1-4 weeks, but
in some patients major symptoms are not alleviated until the second
6-week course. Ciprofloxacin has been used in patients in which
doxycycline cannot be tolerated or in some patients that no longer
respond to doxycycline. In a few cases ciprofloxacin has been used
simultaneously with doxycycline, but the usual course is one type of
antibiotic alone. Herxheimer reaction, if present, usually passes
within a few days to 2 weeks or so; prior damage to the gastrointestinal
system may require i.v. 400-500 mg X2/day (over one hour per each
infusion, rapid i.v. administration is to be avoided) for 2-4 weeks,
then the remainder of the 6-week course should be on oral antibiotic
(oral doses). Virtually all patients relapse (show the same major signs
and symptoms) after the end of the first or second 6-week course of
therapy. Additional cycles of antibiotic result in milder relapses
after drug is discontinued. Subsequent cycles of antibiotics may
require the use of doxycycline or other antibiotics instead of
ciprofloxacin.
Ciprofloxacin is effective against the following organisms:=20
gram-negative bacteria (Shigella species, Citrobacter diversus,
Citrobacter freundii, Escherichia coli, Klebisella pneumoniae,
Haemophilus influenzae, Enterobacter species, Proteus vulgaris,
Psuedomonas aeruginosa, Yersinia pestis, Vibrio cholera); gram-positive
bacteria (Streptococcus pneumoniae, Streptococcus pyogenes,
Staphylococcus hominis, Staphylococcus saprophytieus); mycoplasmas,
moderately active (Mycoplasma species); others (Clostridium species,
Chlamydia species, Mycobacterium tuberculosis). =20
Precautions: Direct sunlight is to be avoided, and patients should not
take ciprofloxacin and theophylline concurrently. Ciprofloxacin therapy
may result in drug crystals in the urine in rare cases, and patients
should be well hydrated to prevent concentration of urine. Pregnant
women and children should not use this drug due to reduction in bone and
cartilage development.
Adverse Reactions: Adverse antibiotic responses resulted in
discontinuing drug in ~3.5% of patients, and such reactions included
nausea (5%), diarrhea (2%), vomiting (2%) abdominal pain (1.7%),
headache (1.2%) and rash (1.1%). In rare cases cirprofloxacin may cause
cardiovascular problems (<1%) and central nervous system (dizziness,
insomnia, tremor, confusion, convulsions and other reactions (<1%).=20
Small numbers of patients have experienced hypersensitivity
(anaphylactic) reactions which have required immediate emergency
treatment.=20
Azithromycin (aka Zithromax)
Azithromycin is a azalide (macrolide) antibiotic with good absorption
and a serum half-life of 68 hours. This class of drug acts by binding
to the 50S ribosomal subunit of susceptible organisms where it
interferes with protein synthesis. Food decreases absorption rate, but
absorption is unaffected by antacids containing magnesium, aluminum or
other salts.
For GWI/CFS/FMS use, the recommended dose is 500 mg/day (for oral use,
2X 250 mg capsules) for each 6-week cycle of therapy. Azithromycin
should not be taken with meals (1 hour before or 1
hour after). Initially, azithromycin may exacerbate some symptoms but
these are usually gone
within a week or so. Patients usually start feeling better with
alleviation of most major signs and=20
symptoms within 1-2 weeks, but in some patients major symptoms are not
alleviated until the=20
second 6 week course. Azithromycin has been used in patients in which
doxycycline cannot be=20
tolerated or in some patients that no longer respond to doxycycline.=20
Herxheimer reactions are rare and usually passes within a few days to a
week or so. Virtually all patients relapse (show the same major signs
and symptoms) after the end of the first or second 6-week course of
therapy. Additional cycles of antibiotic result in milder relapses
after drug is discontinued. Azithromycin has been shown to be safe for
pediatric use (10 mg/kg/day is recommended for children under 14, but
see below).=20
Azithromycin is effective against the following organisms:=20
gram-negative bacteria (Bordetella pertussis, Shigella species,
Haemophilus influenzae, Chlamydia species, Yersinia pestis, Brucella
species, Vibrio cholera); gram-positive bacteria (Streptococci group C,
F, G); mycoplasmas (Mycoplasma species); others (Clostridium species,
Treponema pallidum [syphilis], and Borelia sp). =20
Precautions: Azithromycin is principally absorbed by the liver, and
caution should be exercised with patients with impaired liver function.=20
Antacids containing magnesium, aluminum or other salts should not be
taken at the same time of day with azithromycin. Macrolides and
terfenadine (Seldane) or astemizole (Hismaral) may dangeriously evelate
plasma antihistamine and cause arrhythmias and increase serum
theophyline levels in some patients, particularly those receiving
methylated xanthine causing nausea, vomiting, seizures. Plasma levels
of carbamazepine (Tegretol) can also be elevated, leading to
carbamazepine toxicity and nausea, vomiting, drowsiness and ataxia.
Adverse Reactions: Adverse antibiotic responses were mild to moderate in
clinical trials and included diarrhea (5%), nausea (3%), abdominal pain
(3%). In rare cases (<1%) azithromycin may cause cardiovascular
problems (palpitations, tachycardia, chest pain) and central nervous
system (dizziness, headache, vertigo), allergic (rash, photosensitivity,
angioderma), fatigue and other reactions (<1%). In pediatric patients
>80% of the adverse reponses were gastrointestinal. In children, doses a=
bove the suggested 10 mg/kg/day have been shown to produce hearing loss i=
n some patients.
Clarithromycin (aka Biaxin)
Clarithromy
In Reply to: Guilda - root canals posted by deb on March 15, 1999 at 15:24:00:
What Dentists Should Know about FMS/CMPS Patients
Dr. Devin Starlanyl, MD
http://www.sover.net/~devstar
In Reply to: Fibromyositis posted by Guilda Chalhoub on March 13, 1999 at 09:12:46:
Fibromyalgia Syndrome
FMS is not new. It was first described by William Balfour, a surgeon at the University of Edinburgh, in 1816.
The medical profession called it many different names, including chronic rheumatism, myalgia, pressure point syndrome, and fibrositis. The condition was also thought to be psychological by some physicians, but that notion must now be relegated to the Dark Ages of medicine.
General Background
In 1987, the American Medical Association (AMA), recognized FMS as a true illness and a major cause of disability. Now, more than ten years later, it is still ,unfortunately, too often dismissed as the "newest fad disease", and most physicians still lack the training to diagnose and treat it.
FMS is not a catchall, "wastebasket" diagnosis. FMS is a pain condition which is:
specific chronic
non-degenerative
non-progressive
noninflammatory
systemic
Diseases have known causes and well-understood mechanisms for producing symptoms. FMS is called a syndrome, which means it is a specific set of signs and symptoms that occur together. Don't let this fool you into thinking that fibromyalgia is any less serious or potentially disabling than a disease. Rheumatoid arthritis, lupus, and other serious afflictions are also classified as syndromes.
Lab tests for fibromyalgia are valid only to rule out other conditions. There is no blood test that can accurately identify fibromyalgia.
The official definition requires that tender points must be present in all four quadrants of the body -- that is, the upper right and left and lower right and left parts of your body. You must have had widespread, more-or-less continuous pain for at least three months.
It is important to understand that the FMs definition of "11 out of 18" tender points is for patients to enter a clinical FMS study only. Tender points occur in pairs on various parts of the body. Because they occur in pairs, the pain is usually distributed equally on both sides of the body. In traumatic FMS, tender points are often clustered around an injury instead of, or in addition to, the 18 official points.
These clusters can also occur around a repetitive strain or a degenerative and/or inflammatory problem, such as arthritis. FMS can occur at any age. Most patients, when questioned carefully, reveal that their symptoms began at an early age. About 25 percent of the FMS patients I see are men. This ratio differs from most sources in the literature. I think that this is due to FMS being underdiagnosed in males.
Flu-like achiness is frequently the most prominent symptom of FMS, but there are many others. For example, your eyes may be too dry, but at other times they will water. Your thermal regulatory system is out of whack. You may notice this thermal fluctuation when you get out of bed (which may be often, due to bladder irritability) during the night. You may have to wait for your temperature to cool down after getting back in bed before you can pull the bedcover up. Another symptom of FMS is spasticity (tightness) which can constrict the peripheral blood vessels -- those close to the skin. This symptom, especially in the winter, makes certain parts of our bodies -- most often the buttocks and thighs -- feel like cold slabs of meat. You may experience skin mottling, and nail ridges Fingernails can break off, often in crescent-shaped pieces. If nails do grow, they sometimes start to curve under.
FMS is a sensitivity-amplification syndrome. This means that "people with Fibromyalgia" can be sensitive to smells, sounds, lights, odors, pressure and temperature fluctuations and vibrations. The noise emitted by fluorescent lights can drive you crazy. FMS sensitizes nerve endings and the rest of the autonomic nervous system, the ends of the nerve receptorsmay have changed shape. Because of this, for example, your body might interpret touch, light, or sound as pain.
Your brain knows pain is a danger signal -- an indication that something is wrong and needs attention -- so it mobilizes its defenses. Then, when those defenses aren't used, you become anxious.
Sleep plays a crucial role in FMS. Perhaps you aren't getting enough sleep, or the right kind of sleep. You may have insomnia, or a host of other sleep-related problems. People with FMS often have the alpha-delta sleep anomaly. As soon as we reach deep delta level sleep, alpha waves (awake) intrude and either jolt us to an awakening or to a lighter stage of sleep.
Our body heals and many neurotransmitters are restored during delta sleep, so we soon suffer from the effects of sleep deprivation. Neurotransmitters are electro-biochemical agents that cross nerve synapses. They are the vehicles that carry information back and forth between your body and mind. One might say that neurotransmitters are the "information superhighway" between the body and mind.
Much of our mental and physical sense of continuity and security depends upon our ability to repeat appropriate and predictable actions, but this is disrupted in FMS. Healthy people think nothing of picking up a glass of water and bringing it to their lips. They know just how tightly their hand has to grip, how heavy the glass of water feels, and how much speed is appropriate to accomplish this act smoothly. people with Fibromyalgia, however, lack proper sensory feedback. The thumb grasps with too little pressure, and the wrist muscle lets go when flexed. The economy of effort is not there. To enable us to sit , walk, and stand, the entire musculature must be able to feel its own activity, and we often can't do that.
Only about 20% of FMS cases have a known triggering event that initiates the first obvious "flare." During a flare, current symptoms become more intense, and new symptoms frequently develop.
Myofascia
Myofascia is a thin almost translucent film that wraps around muscle tissue.
It is the tissue that holds all the other parts of the body together. It gives shape and supports all of the body's musculature. You can see myofascia if you cut up a fresh chicken. It is the thin, sticky, somewhat filmy material that wraps around the muscle tissue. It wraps around muscle fibers, bundles of fibers, and the muscles themselves, and then goes on to form tendons and ligaments.
For people with fibromyalgia syndrome (FMS) and/or myofascial pain syndrome (MPS), the myofascia takes on a new importance. Tightening and thickening of the myofascia occurs in many cases of FMS and/or MPS. If both of these conditions are present, this tightening causes more than double the trouble.
When the myofascial tissues become thickened and lose their elasticity, the neurotransmitters' ability to send and receive messages between the mind and body is damaged, and the communication between the mind and body is disrupted. Myofascia, then, may well be the key to what is wrong with people with FMS&MPS Complex. In the myofascia there is a material called ground substance. This material can exist in a solid, semisolid, or fluid state. When ground substance changes from a liquid to a gel, the myofascia tightens, and it is difficult to get it to reverse to a liquid state again without intervention.
Myofascial Trigger Points
Trigger Points (TrPs) are found as extremely sore points occurring in ropy bands throughout the body. They can also be felt as painful lumps of hardened fascia. The bands are often easier to feel along the arms and legs. If you stretch your muscle about 2/3 of the way out, you might be able to feel them. Sometimes the muscles get so tight that you can't feel the lumps, or even the tight bands. Your muscle feels like "hardened concrete".
TrPs can occur in the myofascia, skin, ligaments, bone lining, and other tissues. They can be caused by a surgical incision, as is often the case with abdominal surgery. You have probably never heard of TrPs, yet they are quite common. Each specific TrP on the body has a referred pain or other symptom pattern that is carefully documented in the Trigger Point Manuals.
The first time I opened the Trigger Point Manuals ("Myofascial Pain and Dysfunction: The Trigger Point Manual Vol I & II" by Janet Travell M.D. and David Simons M.D.), I was dumbfounded. After being told for so many years by medical experts that the pain patterns I described did not and could not exist, seeing them illustrated in a medical text brought a flood of emotions.
I felt so relieved I cried. I felt validated. Then, as the truth started to hit home, I started to get angry. Why didn't these "experts" have knowledge of Travell and Simons' work? Why hadn't I learned about these texts in medical school! Most specific pains commonly attributed to FMS are actually from trigger points. TrPs seem to form throughout life as a response to many things that happen to our bodies. Overuse, repetitive motion trauma, bruises, strains, joint problems, etc. Pain creates a neuromuscular response, and the muscle around the pain site tightens, "guarding" the hurt area.
When muscles are in a state of sustained tension, they are working, even if you're not. A working muscle needs more nutrition and oxygen, and produces more waste, than a muscle at rest. This creates an area in the myofascia starved for food and oxygen, and loaded with toxic waste -- a trigger point.
Dr. Janet Travell, in her autobiography, "Office Hours Day and Night" explains how dizziness, ringing of the ears, loss of balance, and other symptoms can all be caused by TrPs in the side of the neck, in the muscle group called the sternocleidomastoid (SCM) complex. This muscle has many functions, one of which is to hold your head up. Receptors in the SCM complex transmit nerve impulses inform the brain of the position of the head and body in the surrounding space. With TrPs, the receptors lies. What they tell the brain is not what the eyes tell the brain.
If there are TrPs in the muscles of the the eyes, they are lying too -- only probably not in the same way as the SCM. When head movement changes the SCM message -- when you turn, or look up from changing kitty litter, you get dizzy. This, coupled with poor balance, can make it seem that the walls are tilting. When we take corners while driving, we get the impression that we're "banking" the turn at a steep angle, as if we're on a motorcycle.
Cold drafts alone can bring on neck TrPs. And be careful how you move in bed. When you turn, roll with your head flat, and use your arms to help. Don't lift your head and "lead with it" as you roll. That puts a great strain on the neck area and electrically "loads" the SCM TrPs, just as climbing steps or walking uphill "loads" the muscles of the thighs. This means that the electrical potential of the muscles are changed, and the change is not to our benefit. A common symptom of SCM TrPs is a "drunken" walk, as we bump into doorways and walls.
An active TrP not only hurts when it is pressed, like an FMS tender point, but it "triggers" a referred pain pattern somewhere else in the body. This pain pattern is similar from patient to patient. These trigger points often produce other symptoms, also usually in the referred pain zone. Such a TrP hurts whenever you use the involved muscle. When the point becomes very active, pain and other symptoms occur even when the muscle is at rest.
The fact that these pain patterns are very much similar from patient to patient really helps make a diagnosis IF the person doing the diagnosing is familiar with the patterns so well described by Travell and Simons. That's why familiarity with TrPs and an ability to take a good medical history is so important. An educated doctor will know where to look for TrPs before the physical exam begins.
A "latent" type of TrP also occurs. The latent TrP doesn't hurt at all, unless you press it. You might not even know it's there, but your body does. It restricts movement, weakens, and prevents full lengthening of the affected muscle. If you press on the TrP, it refers pain in its characteristic pattern. Latent TrPs may be activated by overstretching, overuse, or chilling the muscle.
People who get little exercise have a greater chance of developing latent points. This is important, because some people feel that by restricting their range of motion, they are getting rid of their TrPs. Nothing can be farther from the truth.
Physical stress isn't the only thing that can cause TrPs. Tension TrPs can occur. These are not the psychological result of tension, but they are physiological biological effects of long term emotional abuse or mental trauma. If you are constantly holding your muscles tight in a "fight-or-flight" stress response, this changes your body patterns. When you have TrPs, muscle strength becomes unreliable. You may have also have noticed that if one part of your body turns over another while you sleep, the part being compressed goes numb.
Some other symptoms include: stiffness, muscle tightness and weakness, localized sweating, tearing, salivation, poor balance, dizziness, nausea, tinnitus, goosebumps, runny nose, buckling knees, weak ankles, illegible handwriting, staggering gait, headaches, and muscle cramps.
TrPs often form as a result of other medical conditions. A case of arthritis may be otherwise well managed, for example, but the accompanying TrPs are overlooked. The pain load of that patient could be substantially lessened if the secondary TrPs were treated successfully.
Chronic Myofascial Pain Syndrome
If TrPs are treated immediately and vigorously, and perpetuating factors (conditions that aggravate and perpetuate the TrPs, are avoided or remedied, TrPs can be eliminated.
Unfortunately, if TrPs are left untreated, are inappropriately treated, or muscle action is restricted to avoid pain, the TrP usually becomes latent.
If the muscle is pushed to work in spite of the pain, especially if perpetuating factors exist, active TrPs may develop secondary and satellite TrPs.
Secondary trigger points develop when a muscle is subject to stress because another muscle with a trigger point isn't doing its job. Satellite TrPs develop when a muscle is in a referred pain zone of another TrP. Without proper intervention, and with perpetuating factors, the TrPs can lead to severe and widespread chronic myofascial pain syndrome (MPS).
Developing secondary and satellite TrPs can give the false impression that MPS is a condition that will steadily worsen with time -- that it is progressive. MPS is not progressive. With proper intervention, these trigger points can be broken up and eliminated.
FMS and MPS are different syndromes. However, the vast majority of physicians lump them together because they see many patients with the FMS&MPS Complex. Unless doctors have a thorough knowledge of and familiarity with individual TrPs, they can't sort out the symptoms.
One interesting difference between the two syndromes is that more women than men have FMS, but MPS affects men and women in equal numbers. Another difference is that muscles in locations that are some distance from the trigger points of MPS have normal sensitivity. In FMS, there is a generalized sensitivity.
FMS is, among other things, a systemic neurotransmitter dysregulation, with many biochemical causes. There are other problems as well, but they are all systemic in nature, such as the alpha-delta sleep anomaly. Myofascial Pain Syndrome, however, is a neuromuscular condition. MPS happens because of mechanical failures -- the mechanics of physics, not biochemistry. Due to the nature of trigger points, some of the symptoms may seem to be systemic, but they are not. Initiating events, such as repetitive motion injury, trauma, and illness, can start a cascade of TrPs.
FMS&MPS Complex
People with the FMS&MPS Complex face more than just the two sets of symptoms of both conditions. Today, a few researchers are realizing that FMS and MPS not only occur together, they reinforce each other. Therefore, physical therapy and all other forms of treatment must proceed carefully. Any treatment regimen will be both more complicated and less successful than if the patient had only one of the two conditions.
In FMS&MPS Complex, a chronic pain condition exists, with many different symptoms and the trigger points of MPS, which are all magnified by the pain amplification aspect of fibromyalgia (FMS).
Furthermore, some of the treatments normally prescribed for FMS patients can cause damage to MPS patients, and the reverse is also true.
In the context of FMS, many different neurotransmitters are affected to different degrees and in different combinations in each patient. Also, other biochemicals in the body are affected to different degrees. Various hormones may be involved. Histamine (a neurotransmitter) is often a important factor when there are many allergic manifestations.
The possible combinations are endless, so this is no place for a doctor who practices "cookbook" medicine, especially when you figure in the possible combinations of TrPs.FMS perpetuates MPS and the reverse is also true.
The spiral of pain/contraction/pain/contraction continues until it is interrupted by an outside force in some form. Chronic pain, all by itself, causes stress and lack of sleep. That's another reason why many cases of FMS are accompanied by MPS.
But don't despair. A lot can be done to relieve MPS and lighten the pain load. There are many therapies that work for FMS as well. It's important for people with FMS&MPS Complex to take on the responsibility of managing their own treatment. It isn't easy, and it takes concentrated focus to change the habits of a lifetime.
Getting as well as possible -- optimizing your quality of life -- takes commitment. What is done to or for you can help, but getting better is primarily a function of what YOU do.
In Reply to: Guilda - root canals posted by deb on March 15, 1999 at 15:24:00:
http://www.sover.net/~devstar/sheets.htm
In Reply to: Re: Fibromyositis posted by Davin Standryl, MD on March 17, 1999 at 05:48:27:
Dr. Standryl,
Thank you for the information about FMs. After I read it, with all of its medical terms that I am not very familiar with, I am starting to wonder if I actually have it or not. You have prescribed many hopless cases in people who have FMS, I am not at that point.
Basically, my pain started In Dec 1998 on both of my knees, then my right hip. The pain in the lower back has always been there. Until 10 days ago, I started having chronic pain around my neck, upper shoulder and my left hand becomes numb. Also my left eye and cheek feel funny.
I had a root canal done in June 1998 and it was still not comfortable. I went today to the dentist to get it adjusted and he has done many adjustments before and I believe the byte is still off. Can this cause the pain in the neck, left eye and left check and left hand?
I am also wearing orthotics for my knees and the knees are 50% better.
If I really have FMS, I am willing to commit to get better no matter what it takes, because I will not accept to live with it.
Guilda
In Reply to: Re: Guilda - root canals posted by Johnelle on March 15, 1999 at 16:46:09:
Please give me the information of FM'ers that I can give to my dentist when their seems to be complications.
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