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nascar
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/21/2008 6:43 PM (GMT -7)   
our daughter has myo fascial pain syndrom.we found out last year , she has been having extreme pain in her chest along with stomach pain coming about every 3-6 months we have her on meds but this last bout lasted three weeks. we have ran every blood test and done mri's to see if there is another issue but so far found nothing . We have checked for connective tissue diseases arthritis with nothing being found could this be progressing myofascial or somthingelse ? does any one know any thing about this

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 10/21/2008 7:41 PM (GMT -7)   
Hi nascar and welcome!!

I am so sorry to hear about your daughter's pain.As a parent and grandparent I know the agony we feel when our 'babies' are hurting.

One thing you may want to look into is fibromyalgia. Although there are distinct differences between the two they are very similar to the untrained clinician. I have had fibromyalgia for many years and the pain is debilitating at times. With MPS it can be also but it radiates from different areas. Here's a great link to an article in our library. Also do a search on MPS and Fibromyalgia and see if anything looks familiar.

Keep us posted and good luck,
Chutzie

http://www.healingwell.com/LIBRARY/fibro/webber3.asp
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)

Post Edited (Chutz) : 10/21/2008 8:46:26 PM (GMT-6)


nascar
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/22/2008 4:12 PM (GMT -7)   
thank you so much. Im new to this web site and really don't know how to use it . i tried the chat room thing but could'nt figure that out. Her problem was misdiagnos for 3 years thinking it was costroconditis, we switched doctors and they decided myo fascial .She has been taking nortriptyline for a year now only 20 mg at night but this last month has been almost to much for us all, The chest and stomach pain started al usual then came the lowere back. for three weeks her chest and stomach keep her curled in a ball to try for relief. thats when the doctors started looking for something else but every test shows nothing. i feel like we can't get any answers

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/22/2008 7:38 PM (GMT -7)   
A book you must get, nascar

Fibromyalgia and Chronic Myofascial Pain (a survival manual) by Devin Starlanyl
and Mary Ellen Copeland.

I've never heard two people speak of Myofascial Pain the same way. There are some
people who think Myofascial Pain is hmmmm very very bad. But the good news
is: You don't die from it.

I have both and some other stuff. I have never heard of Myofascial Pain causing
stomach pain.

Keep looking. There is seldom anyone in the chat room.

Pamela

nascar
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/22/2008 8:06 PM (GMT -7)   
thank you ill get that book in the morning on my break at work. Her stomach starts hurting in the very top the first day, by that evening her chest in the center of breast bone hurts like a knife stabing pain. The chest and stomach pain last about a week to fourteen days . This last time it was about 6 months from last bout so we thought she was getting better, boy were we wrong this time was the worse of them all. Did you have any tests to diagnos your's ? and have you found any meds that help you on a maintance level ?Im sorry to know you suffer also . Your advise is a god send to us we really know very little to try to help her thank you again.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/22/2008 9:05 PM (GMT -7)   
Bottom line, the authors recommend pain medicine. There are a bunch of things you can do
to possibly relieve Myofascial Pain. If you have lots of money, you may try them all.
I tried them all and now I have absolutely no $$$ at all.
Pamela is "kinda" joking

Terrie B
Regular Member


Date Joined Mar 2007
Total Posts : 90
   Posted 10/22/2008 9:47 PM (GMT -7)   
Pamela~
I was wondering if the book is like a story or if it is more informational? I would like to read something to get another view on the fibro...

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 10/22/2008 10:39 PM (GMT -7)   
Has she tried myofascial release?

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/23/2008 9:45 AM (GMT -7)   
You know, louloubell, the book is not a story. The book is informational. The women who wrote
it have both MFP and FM.
I think to hear "stories" of the women (mostly women) who suffer from these two difficult diseases
is right in front of us on the Forum. It's here that you find out the back stories and lots of stuff you
won't find in a book.

Frances, I have never tried myofascial l release. Does it work?

I have tried three courses of Accupuncture. The most I can say of that is that it made my back feel
like raw hamburger. It was just soooo painful to ME. The doctor shot a needle right in the top of
my head. I swear it's true. It was supposed to RELAX me. Some people really like Accupuncture.
We're all so different.
p

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 10/24/2008 11:35 AM (GMT -7)   
Pamela,
I love myofascial release. It has been a godsend for me. It doesn't get rid of the pain on its own, but it definitely works great when coupled with my pain meds. For me, it's like taking a high dose of muscle relaxants without all the awful side effects. I have had a lot of different people try it on me & found a couple of practitioners who I actually have found helpful. One is an osteopath -- he is really great- very low tech, but a feel great the next day and for a week or so afterwards. The other is a napropath -- I really like her, plus she does a few other things like traction & some kind of machine that moves your muscles back & forth super fast (that's really great when my arms or legs are tense). It runs about the same price as acupuncture & if you have a dr who is creative enough to find the right billing code (usually billed as "physical therapy - light modalities", but sometimes goes as something else, often they can get insurance to cover it.

As far as acupuncture, I really love it for some things. I've found it hugely helpful for nausea & vertigo & insomnia plus it has helped me some with withdrawal symptoms whenever I'm taking a "vacation" from my narcotic meds. The quick pain of the tiny needle (yes, they put one in your scalp & some on your ears sometimes, but they only go in a fraction of a centimeter) is soon forgotten when you get complete resolution of your symptoms within a couple of visits. However, I too have not found it helpful to me for pain. I know a lot of people swear by it; I guess it just depends a lot on each individual & their body. Anyways, whatever works -- especially if someone is lucky enough to find a treatment that doesn't have so many side effects, risks or complications -- should be celebrated.

Nascar,
I really would encourage you to check into some of the alternative treatments for your daughter. I was so nervous about trying anything not considered "traditional western medicine" that I just kept taking more & more prescription meds. It got so crazy that I finally told my PM that we needed to try something else & that I would only accept suggestions of his that didn't involve medication or surgery. I was really amazed when he suggested acupuncture -- followed by several other alternative suggestions after the accupunture got rid of my nausea. There are a lot of scams out there, but I think that more & more doctors (especially the younger ones) are starting to become more familiar with alternative treatments & can offer suggestions about which ones are legitimate & have a real chance of helping your daughter. Medication certainly has it's place, but sometimes it works even better when coupled with other therapies - PT, mind-body medicine (like biofeedback), acupuncture, myofascial release, craniosacral therapy, massage, etc.

Myofascial pain can get worse over time, but we can also become less tolerant of it & our muscles can start to tense more or sooner than previously. Strengthening exercises , light workouts, plenty of rest & making sure to keep on top of the pain when it first starts can certainly help. Of course, all of those things should be supervised by a physician. The other thing that my PM always reminds me of is that myofascial pain (as with most pain) is cyclical by nature & that just because during this cycle it is lasting longer, doesn't mean that my resting period won't also be longer or that my next pain cycle will be even worse. We just have to take things a day at a time. I know that's super hard to do, but there really isn't any other choice unless you want your life to be consumed by worry & unhappiness. There is a lot of research that shows that positive expectations can speed recovery time. Yes, there's a place for realism & I need to continually advocate for that with my doctors in order to make sure I can appropriately manage my workload & absences rather than just naively hoping for the best & leaving my co-workers unprepared, but it really does need to be limited to those few areas.

I really do wish you the best. I can see some of how it affects my parents & can only imagine what you must be going through right now. It sounds like your daughter has a great advocate in you; she is really lucky to have someone looking out for her. Keep with it & keep encouraging her that things will somehow work out -- they will.

GB,
frances

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/24/2008 11:49 AM (GMT -7)   
The sad thing is that many of these modalities cost money. I love massage and myofacial release, but even physical therapy sessions have a limit. And my insurance doesn't cover acupuncture at all, even if the practitioner is an MD. And soon my insurance will run out and i'll have to go on Medicaid, which will be even worse.

PaLady

nascar
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/24/2008 6:50 PM (GMT -7)   
thank you both for your information. LyKn is now on her 5th week of chest and back pain, her stomach has stoped feeling sick,and hurting. She is now starting the down side of this . I think she will be sore alot longer this time then she usually is. After her pain she is usually sore about 7 days ,but thats when shes only hurting a week to fourteen days. She does work out alot and is faithful at it . Although she has not been able to for many weeks now. We are letting her slowing start up again. Her symptoms are so different for ones ive read, chest pain,stomach pain,nausea,back pain,and this time extreme hunger but loosing weight. The mri taken they found degenerative disc in her lower back so they tought it might be raterating pain from her back .Know one really knows what it is for sure !!! we know she has myofascial , but we wonder what else could there be if anything. The doctors just keep running tests, sometimes it's better to show something in these tests then nothing at least we could have some answer's. thank you so much again!!! Any information is so helpful.                 
 
nascar
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