[(JD)]

It's a longer post than I generally give.

I'll try not to rant, but I need to share.

I've been on a weight loss plan for two months now. The first of it was good, but then I went into a pain flare and couldn't follow it during that. But then, after the flare, I went back on the plan and lost a few more before going into another pain flare. Now I am just about over the third flare (again from trying their supplements that I am obviously (now) allergic to) ... and though I've lost 12 lbs, I can't do their full program that I paid good money for ... and then the nutritionist gave me a polite lecture.

She related how she has fibromyalgia .. and how it's really the "same thing" as what I have, myofascial pain disorder (though you still read "syndrome" in many articles). She said I needed to get off my pain medication as that was what was causing my problems. (not) And she said I needed to exercise and eat well (hmmm I'm there to try and lose the weight through eating well....? And I have a verterbrae chewing into my spinal cord and exercise exacerbates the condition...) But I didn't say much. I then sat there patiently and intently listening as she told me her story of being in bed not able to move 5 years ago. How her daughter said she would be in pain anyway, so why not get up and do things. So she did. She joined a gym, she changed her diet, she went back to work..and here she is still working!

Okay, that IS great--for her. I didn't bother to try and argue nor educate her. No reason to, you know? Some people have their minds set, or because they just can't handle certain negative situations insist on a good ending "if only."

Well, I have both. I have chronic myofascial pain disorder AND components of fibromyalgia. And I have other maladies as well, TMD and minimal brain damage to name two, all due to the disabling accident in 1986. It's been a really long, hard struggle to get to where I am. (When I was first injured I could barely talk or walk.)

The two disorders are NOT the same. Here is a brief article that gives some of the key points, just for those still confused (including MDs!)


Fibromyalgia vs. Myofascial Pain Syndrome
by Cynthia Webber

Learning to differentiate between fibromyalgia and chronic myofascial pain isn't as difficult as it sometimes appears to be. Dr. Devin Starlanyl has made the distinction very easy to understand on both her fibromyalgia & myofascial pain web site, and in her books. Not all doctors are able to diagnose fibromyalgia accurately, and it is possible to be given a diagnosis of fibromyalgia when what one has is chronic myofascial pain. Tender points are different than trigger points, and yet many people are given a diagnosis of fibromyalgia based upon trigger point pain.

While it is possible to have both fibromyalgia and myofascial pain, there are definite differences. One difference is that more women than men have fibromyalgia, but the ratio of men to women who have myofascial pain syndrome is equal. Also, in fibromyalgia, the muscles have generalized sensitivity, while with myofascial pain, the muscle areas that are located away from the trigger points and their referral regions have normal sensitivity. With fibromyalgia, there is total body achiness, while with myofascial pain there are specific pains in specific areas. With myofascial pain, the areas not affected by trigger points don't hurt, but with fibromyalgia, the areas outside the tender points still ache. Fibromyalgia is a neuroendocrine disorder while myofascial pain is a neuromuscular condition.

The similarities between the two conditions and a physician's lack of skill in administering the Tender Point Index test can often lead to a misdiagnosis. If we were given a choice of which condition to have, most likely we all would choose myofascial pain syndrome. It is easier to treat with massage, stretching, and exercise, or even trigger point injections. However, for any of these therapies to work, the perpetuating factors must be addressed.

Sleep disturbances occur with both conditions because trying to sleep when one is in pain is very difficult, plus living with any kind of chronic pain can lead to depression. In both cases, at least part of the fatigue, and usually the largest part, is due to lack of restorative sleep. In fibromyalgia, this is due to the neuroendocrine imbalance, and in myofascial it is due to the pain.

People with only chronic myofascial pain can improve and can return to a normal life with treatment and control over their perpetuating factors, but those with a true diagnosis of fibromyalgia don't have a specific treatment plan available that works for every one of us at this time.

Cognitive deficits in fibromyalgia are also present in myofascial pain syndrome but the deficits are due to proprioceptor dysfunction and autonomic concommittants. Also, if one is on many different medications in order to relieve pain, help sleep, or deal with depression, they may also have times when their brain seems to be in a fog. The fog of fibromyalgia is a real condition, and although it is unknown what causes it, it is specific to fibromyalgia and not myofascial pain syndrome. However, there are aspects of myofascial pain that do affect the perceptions.

Learning to differentiate between these two separate syndromes within our own bodies is easier when we learn to listen to our pain. Those of us who have both conditions can learn to feel the difference between a trigger point and a tender point, and thus we can find ways which will reduce the trigger points and the pain that they cause us. The deep aching and burning pain of a fibromyalgia flare is different than the pain of multiple trigger points which can rear their ugly heads on occasion. It is possible to reduce trigger point pain by massage or even relaxing in a bath, but during a severe fibromyalgia flare, we may not want our bodies to be touched by even a single sheet on our beds.

Our role is to learn to differentiate which syndrome we are dealing with, educate ourselves about the differences between these two syndromes, and learn how to listen to our bodies to see which type of pain we are actually dealing with so we can treat ourselves in the best possible ways.

© 1999 Cynthia Webber http://www.healingwell.com/library/fibro/webber3.asp

[thunderbear]

Thanks JD that article was helpful to me. I have been thinking since my dx of fibro that it's not fibro. For one my pain is specific not flu like and it is in my upper back muscels. I have tender points yeah, but I also have arthritis in my elbows, hips, shoulders and knees. Those are the trigger points she used to dx the fibro. And the only part of me that hurts chronicly is my back and neck.
As far as your nutritionist, good for her. But I could'nt do that. Especially during my flares. I can't do anything during those. But any way thanks again for the post I hope you get to felling better

[(JD)]

Thanks Tbear. Well, CMPD is trigger points; fibro is tender points. Maybe you need to print the article (and others) out and give to your doctor?

Yeah, when I'm in flare I'm useless. I go to physical therapy and pain mgmt therapy if I'm able to drive. (Just when I need PT the most, I have to pass on it.)

One things that helps when it's this pain ... from that lesion I have in the spine, is the PT does therapeutic ultrasound on the low back to help ease the inflammation. TENS does nothing for that type of nerve pain (sciatica) though.

TENS works good on jaw pain though. But nothing for the migraines if I don't keep the back teeth built up to even. But the zomig zmt works great for that.

So.... Since my first post on this, I read all my paperwork that came with my prescriptions I pushed to pick up... and they were nearly $700! For one month's worth. No way could I pay that! I thank God that they have to pay for that, and the pt and the other doctors...and my salary! I am truly blessed in that.

[lynn P.]

((JD)) I'm sorry you had this negative experience with the weight loss coach. She probably thought she was motivating you but it obviously didn't have the desired effect for you. It doesn't do any good for her to compare her pain to yours - everyone's pain is experienced in their own way. There are some women who scream their heads off in labor and other women who don't have much pain at all. Try not to let her discourage you or make you feel like you're not trying hard enough. Good for you, for losing what you have so far.

You mentioned jaw pain - I had TMJ for many years and get occasional flare ups. Do you wear a protector on your teeth at night -this will help with the wear on your teeth. I also use ice cubes and massage them on my jaw - it hurts like crazy at 1st. I also have this acupressure device - looks similar to a pen and runs on batteries - it gives a gentle zap(stinging sensation) and it helps my jaw pain, when nothing else works.

Do you sleep well at night - because fibromyalgia pain is connected to sleep quality. Would you be able participate in water aerobics. When I used to take my daughter for swimming lessons I would watch the water aerobics class - very good workout and perfect for someone with joint problems or disabilities. I strained my back last week while exercising and was miserable for 5 days - so I know pain can take a toll on people. Keep up the good work and you can only do what YOU'RE capable of. I hope you feel better.

[madisgram]

since you have had a number of medical challenges, if it were me, i'd contact my doctor and throw that nutritionist out with the bath water. she may be on to something but she is not you and vice-versa. she needs to stick with nutrition and save her medical advice until she gets an M.D. degree.
oh and thanks for that article...i've got to reread it..maybe i got misdiagnosed too.

[(JD)]

Originally Posted by lynn P.

((JD)) I'm sorry you had this negative experience with the weight loss coach. She probably thought she was motivating you but it obviously didn't have the desired effect for you. It doesn't do any good for her to compare her pain to yours - everyone's pain is experienced in their own way. There are some women who scream their heads off in labor and other women who don't have much pain at all. Try not to let her discourage you or make you feel like you're not trying hard enough. Good for you, for losing what you have so far.

You mentioned jaw pain - I had TMJ for many years and get occasional flare ups. Do you wear a protector on your teeth at night -this will help with the wear on your teeth. I also use ice cubes and massage them on my jaw - it hurts like crazy at 1st. I also have this acupressure device - looks similar to a pen and runs on batteries - it gives a gentle zap(stinging sensation) and it helps my jaw pain, when nothing else works.

Do you sleep well at night - because fibromyalgia pain is connected to sleep quality. Would you be able participate in water aerobics. When I used to take my daughter for swimming lessons I would watch the water aerobics class - very good workout and perfect for someone with joint problems or disabilities. I strained my back last week while exercising and was miserable for 5 days - so I know pain can take a toll on people. Keep up the good work and you can only do what YOU'RE capable of. I hope you feel better.

Thanks Lynn
One of my doctors wants me to ask the nutritionist what concerns she has about my pain medicine in reference to the well-being nutritionally. I didn't go in to weigh today, but will try tomorrow, and see if she's there.

I wore a splint before they made them decently. (I was injured not that long after Burt Reynolds was rumored to be gay and sick and he spent his own money to see what was wrong Thankfully! He'd taken a bad punch in the jaw in a movie, and thus they created "TMJD" now TMD... but my first splints were black hard tar like stuff yuk. I keep grinding at night and we couldn't risk the plastic/acrylic chards cutting my tongue and mouth any more, so that's why they build my back teeth us. It's also why they can't fix it permanently like they have all my other teeth, because it would be too hard and would knock my TMJs back out etc.

I rarely sleep well. I rarely sleep much. The half life of my medicine is 1 1/2 hours... so by 3-4 hours I'm approaching higher pain and it wakes me IF I'm asleep. I take my medicine in half doses twice as often 1/2 every 3 hrs rather than 1 every 6 hrs...and it helps me manage until there's a flare. If I get 5 hours total of sleep a night (interrupted, of course) then it's a good night. I also have bathroom trips due to the bad back... and age? sigh. I work hard on keeping a routine of eat, sleep, PT and T ... that's my life... since 1986.

[(JD)]

Finally had a decent, no, GOOD day today...after a 10+ day pain flare brought on by allergy to some of the weight loss supplements I was taking. So in addition to my physical pain, now I have to subdue the mental anguish over spending about $120 a pound (so far) lost. and have product I can't take nor take back.

Originally Posted by lynn P.

((JD)) I'm sorry you had this negative experience with the weight loss coach. She probably thought she was motivating you but it obviously didn't have the desired effect for you. It doesn't do any good for her to compare her pain to yours - everyone's pain is experienced in their own way. There are some women who scream their heads off in labor and other women who don't have much pain at all. Try not to let her discourage you or make you feel like you're not trying hard enough. Good for you, for losing what you have so far.

You mentioned jaw pain - I had TMJ for many years and get occasional flare ups. Do you wear a protector on your teeth at night -this will help with the wear on your teeth. I also use ice cubes and massage them on my jaw - it hurts like crazy at 1st. I also have this acupressure device - looks similar to a pen and runs on batteries - it gives a gentle zap(stinging sensation) and it helps my jaw pain, when nothing else works.

Do you sleep well at night - because fibromyalgia pain is connected to sleep quality. Would you be able participate in water aerobics. When I used to take my daughter for swimming lessons I would watch the water aerobics class - very good workout and perfect for someone with joint problems or disabilities. I strained my back last week while exercising and was miserable for 5 days - so I know pain can take a toll on people. Keep up the good work and you can only do what YOU'RE capable of. I hope you feel better.

[mj778]

Hey JD,

I am so excited after reading your post. Yes, I now that is probably not the reaction you would expect, but I have finally, after a couple years of looking, found someone else with the same things. I can't believe how difficult it is to find.

I read Devin Starlanyl as it is my only hope that there is something they can do for me. (Getting the drs to agree is something different) I also have the book "The Trigger Point Therapy Workbook" second edition by Clair Davies. It is an amazing book on self help for myofascial trigger points.

As for the pain meds, I don't get any. They say it is a downward spiral for chronic pain.

I do know what you mean about the preaching of diet and exercise for the fibro. If that was all that was wrong, I would be on board. Yet, listening to one more dr tell me it would make my symptoms go away, when I used to exercise and do yoga and hike 10 to 15 miles a week when I started getting sick, and had to give it all up, tells me there is a flaw in their logic, because if exercise made it all better, I never should have gotten sick in the first place. However, the CMP or MPS (whichever name you prefer) makes everything worse.

I am sorry, I want to go on forever talking and asking questions, because, like I said earlier, you are the first person I have found with both conditions.

I look forward to talking with you more!!
mj778

[lynn P.]

Originally Posted by (JD)

Thanks Lynn
One of my doctors wants me to ask the nutritionist what concerns she has about my pain medicine in reference to the well-being nutritionally. I didn't go in to weigh today, but will try tomorrow, and see if she's there.

I wore a splint before they made them decently. (I was injured not that long after Burt Reynolds was rumored to be gay and sick and he spent his own money to see what was wrong Thankfully! He'd taken a bad punch in the jaw in a movie, and thus they created "TMJD" now TMD... but my first splints were black hard tar like stuff yuk. I keep grinding at night and we couldn't risk the plastic/acrylic chards cutting my tongue and mouth any more, so that's why they build my back teeth us. It's also why they can't fix it permanently like they have all my other teeth, because it would be too hard and would knock my TMJs back out etc.

I rarely sleep well. I rarely sleep much. The half life of my medicine is 1 1/2 hours... so by 3-4 hours I'm approaching higher pain and it wakes me IF I'm asleep. I take my medicine in half doses twice as often 1/2 every 3 hrs rather than 1 every 6 hrs...and it helps me manage until there's a flare. If I get 5 hours total of sleep a night (interrupted, of course) then it's a good night. I also have bathroom trips due to the bad back... and age? sigh. I work hard on keeping a routine of eat, sleep, PT and T ... that's my life... since 1986.

Thanks for reminding me about what happened to Burt Reynolds - that's sad they put him through all those assumptions. TMJ can really be hard to deal with. I used to get pain in my ears and kept going to the doctor. I happened to mention it do my dermatologist years ago and he knew right away what it was. He made an appt. with an orthodontist. I had to get braces and later had surgery to align my jaw.

I wanted to mention about the problem you had with your mouth guard. I've had the plain plastic but recently my dentist made me one that's plastic with a cushiony rubber on the part that contacts with the teeth - so no plastic shavings or sharp edges. I just wanted to mention that. My physiotherapist also showed me how to do some facial stretches for my TMJ. I'm grateful I only have the occasional flare up with the TMJ now.

You a knowledgable lady - you should be able to manage your diet and lose weight on your own ... I bet. Could you get into an exercise program like water aerobics?

[(JD)]

Oh wow I went through the soft splints in a week's time! So much of a hassle, and quite expensive to boot. I had bilateral TMJ orthroscopic surgery.... The good part is that most ppl have to have that surgery a few times before they realize they need to stick to the rules. Also most ppl have TMD because of a history of poor alignment or chewing etc. Mine was from the accident knocking my jaw off the hinges.

I'm way past the jaw stretches. My mouth won't open far enough, and my hands can't coordinate them any more, but my jaw is aligned fine, it's that my teeth were worn down to where they were medically and "officially" gone/out. They fixed my other teeth with lovely white veneers, but my back teeth, as I said, can't be done permanently because it is too hard a surface. Oh well.
But that's just a small part of my pain these days. Thank God! It used to be one of the major issues. LOL I recall when I was finally given a TENS to use, borrowed from the hospital pt dept, but back then all they had were the big white spongey electrodes (like for football players.) I wore them on my face and didn't care how it looked (small children were very afraid) because it immediately reduced my pain ... switch on, pain down, switch off, pain up. I doubt I would have lived much longer if I had not received that relief then.

It took them 2 years to agree to surgery and then they denied pain management in the hospital (which would have been 1 month) and so I had to undergo and wait another year of physical therapy before surgery. It was only THEN that they admitted I also had back issues...
Yeah, disability medical is pitiful.