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Old 11-12-2007, 10:36 AM   #1
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2 doctors have said fibro, massage therapist says no

The first time a doctor said fibro to me was in 2004. I had a very stiff neck, my shoulders were hard as a rock. Next time was in October of 2006. I am still seeing this doc. He is a pain management specialist. He says fibro and chronic myofascial pain syndrome.

Anyway, my question is ....

I get deep tissue massage at the chiro 1x per week. The massage therapists there says that they have never seen anybody with fibro be able to take the pressure of this massage. There are spots, like on the back of my hips that are extremely painful when the do this but I just tell them to ease off. I do have the trigger points and get injections 1x per month in the biggest ones.

Has anybody else ever been able to get massage?


Thanks in advance for your responses.

Sandra Dee

 
Old 11-12-2007, 11:26 AM   #2
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Re: 2 doctors have said fibro, massage therapist says no

Hi,

The therapists have obviously massaged a few people with fms and have based your diagnosis on their symptoms. They really shouldn't be stressing you out by confusing you about fms. It isn't their place to diagnose you.

I have chronic myofascial pain (CMP) also. I have myofascial release by trigger point injections and by a physical therapist. The physical therapist massages out the muscles to release the fascia. She is very gentle and I tell her when to ease up. She works on my back and ribs and abdomen. When I am flaring, sometimes I cancel my appointments because it can make everything worse and I am more sensitive to pain. My PT hurts because she is rolling out trigger points, not necessarily because I have fms. My tenderpoints are not on my back, ribs or abdomen.

When you understand fibromyalgia and your symptoms as they relate to fibro, you will see the difference between fms and cmp. I recommend educating yourself by reading the book "Fibromyalgia and Chronic Myofascial Pain, A Survival Manual" by Devin Starlanyl. Once you have a solid understanding of fibromyalgia and your own individual symptoms, you won't need validation from anyone and you will be able to educate others if you wish.

Your therapists' expertise is myofascial release not fibromyalgia. IMHO, They should just stick to that, with the understanding that they may need to be more gentle with fms patients.

If you choose to continue your treatments with them, you may want to print out this thread and give it to them.

Last edited by rosebuddy; 11-12-2007 at 11:30 AM.

 
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Old 11-12-2007, 11:32 AM   #3
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Re: 2 doctors have said fibro, massage therapist says no

Thank you, I might just do that. There is actually a group of 4 women. This same girl noticed my weekly pill box in my purse and commented that I had to take to many things.

I take 5 grains Armour thyroid
25 mg cortef
adrenal glandular
2 vicodin per day
multivitamin
l-theanine
rhodiola
Iodoral

All of this per my PM.

I think you are right, she should stick to what she knows.

I do have a book, I can't remember the exact name at the moment, brain fog.
It does deal with Fibro and MPS.

Thank you. Sandra Dee

 
Old 11-12-2007, 06:46 PM   #4
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Re: 2 doctors have said fibro, massage therapist says no

Hi Sandra, I get massages. My acupuncturist and bodywork specialist told me the same thing as you were told. My diagnosis was confirmed directly by Dr. St.Amand himself. So, yes its possible to endure it with FM. No two with FM are exactly the same. Dr. St. Amand explains it like this, there are those among us, while few, who have a high pain tolerance threshold. Not that we don't have pain, we do. I get horrible pain in bizarre places like the nerves of my teeth of all places, now how wierd is that?

I endure the massage, but I am usually so stiff after laying so long that I can barely get off the table and get dressed. I am stiff with achey spots for the rest of the day, but better the next day. For days after I am better with more mobility. And, best of all, almost all my cellulite is gone, LOL.

While the higher pain tolerance helps us in the early FM stages in the early years, it boomerangs on us later as it enables us to push ourselves beyond our limits. That is especially bad for those of us who are workaholic *gotta get it done* types. We are at highest risk of wheelchair and bedridden, so be aware and do not push yourself beyond your body's capacity. Get in tune with your body and nurture it or you will pay the price dearly later.

 
Old 11-12-2007, 07:01 PM   #5
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Re: 2 doctors have said fibro, massage therapist says no

Absolutely every person is different in what they can and can't tolerate but you do have pain points that you have to tell them to ease up on...so what the heck they talking about. Massage therapists are putting themselves way out on a legal limb if they are telling people they don't have a diagnosed disease.

 
Old 11-12-2007, 07:14 PM   #6
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Re: 2 doctors have said fibro, massage therapist says no

Agree- we all tolerate different levels of pain....I think that 1-10 scale is a joke, since I don't remember being below a 5-6 in the last 12 years (and that was a good day), so I don't even tell docs/ER triage about any chronic pain.

Massage is helpful for a lot of people. I can't tolerate it in my shoulders and upper back; I can in my arms and legs. Massage therapists don't diagnose disease/disorders.... that's what doctors go to so many years of school for....there are a lot of great massage therapists out there; but they're not the ones who are supposed to "diagnose" people. I'd be highly ****** if someone told me that I couldn't have _________ because I don't fit their cookie cutter image of someone with that diagnosis..... jmho

 
Old 11-12-2007, 08:02 PM   #7
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Re: 2 doctors have said fibro, massage therapist says no

Quote:
Originally Posted by neurowreck View Post
Agree- we all tolerate different levels of pain........ I can't tolerate it in my shoulders and upper back; I can in my arms and legs.
See Sandra, here is a perfect example about no two the same...Neuro can't tolerate shoulders and upper back massage but can in the arms/legs. I CAN tolerate shoulders and upper back just fine, but CAN't hardly stand for my thigh areas or abdominal areas to be probed at all!!

Hell, for years I feared I had some deep dreaded abdominal disorder because of this strange reocurring right side pain. They tested me for EVERYTHING, ultrasound, catscan, MRI, stool test, blood test....did everything but turned me inside out to take a good look. They finally shrugged their shoulders and looked at me with the ole raised eyebrow....y'all know the look! Right away Dr. St. Amand said it is FM. Who would have thought??? I get in my chest also....3 trips to the ER where they hospitalized me for every test under the sun...once again NOTHING. Same thing, Dr.SA says not uncommon for FM patients to experience trips to ER with chest pains and all the signs of a heartache. The heart and abdominal symptoms started when I was in early to mid 40s. This stuff progressively builds up throughout your body over the course of your life.....at different points of your life you experience evolving symptoms which can be predicted based on your family DNA subset.

All of you need to really look at your mothers and grandmothers for any FM symptoms, especially strange ones, that they experienced. They likely don't know they even had/have FM. They have learned through doctor and family unsupportive responses to stay silent and many have suffered in silence about their strange symptoms. Most attribute it aging rheumatism. My mother, now deceased for over 20 years, had many of the same symptoms at the age I am now, and her mother had it as well.

When comparing patterns of FMsymptoms, know that your BEST resource is close at hand. The best predictor of what you can expect to experience with symptoms is within your own family. Carefully probe and question the females in your family about odd undiagnosed symptoms. You can usually expect to experience many, but not all, of the same symptoms within your own family DNA profile; much more likely than comparing them to any of us

 
Old 11-12-2007, 09:14 PM   #8
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Re: 2 doctors have said fibro, massage therapist says no

Excellent points !!

I was having a major pulmonary embolism- blood clots in my right pulmonary artery, and all 3 lobes of my right lung, that is s u p p o s e d to hurt when breathing....my pain tolerance is so screwed up that I didn't have any pain until it came at me like I was having a heart attack (and my heart was showing changes on the EKG since my lung was pushing it over)....once my lungs were 'clot busted' with drugs, my heart went back to normal.... I've come to the conclusion that I don't do anything "right" by the book... and fortunately I've found an ER that believes me....

One doesn't, since I've been there many times after seizures, when someone saw it happen and called the ambulance. Since the ER didn't see it, they blew me off...one time actually refusing to evaluate me (many letters written on that one), and come to find out that the clots in my lungs were forming at the same time period (the clots were new, and older- not all at once per the CT scan).

Pain is a weird thing....

And about someone thinking you have a lot of stuff to take...tell them to be glad they don't !! I have carbamazepine (seizures), Coumadin (blood thinner), gabapentin (autonomic disorder and pain, also helps with seizures), clonazepam (seizures), propranolol (autonomic disorder), simvastatin (cholesterol), tizanidine (muscle spasms), propoxyphene w/acetaminophen (pain- as needed), doxepin (helps with the perception of pain), trazadone (sleep), folic acid, baby aspirin, pseudoephedrine 12-hour (sinuses), tramadol (pain- as needed), stool softeners (above meds cause gut slowing), and other as needed medications, including insulin if my blood sugar gets too high.

People who don't 'get it' about other people's medical issues can be pretty insensitive and ignorant, probably meaning nothing, but keeping that feeling of being a medical disaster festering.

Last edited by neurowreck; 11-12-2007 at 09:22 PM. Reason: addition

 
Old 11-12-2007, 10:27 PM   #9
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Re: 2 doctors have said fibro, massage therapist says no

Quote:
Originally Posted by neurowreck View Post
People who don't 'get it' about other people's medical issues can be pretty insensitive and ignorant, probably meaning nothing, but keeping that feeling of being a medical disaster festering.
Exactly Neuro!! Over the past 15 years I have had some pretty cruel things said to me inferring I am a hypochondriac, or at least that is the way I took it anyway. That led me to learning to suffer in silence with it all most of the time, and by the way is what led to me being a workaholic. I have only recently realized that was at the root of it all. You see I would have days I just couldn't get out of bed and go to work, thinking always I must have a bug or the flu or whatever, and then I would worry my employers thought I was taking advantage or being a slacker so when I was well enough to put the metal to the pedal I did it full speed ahead, working crazy number of hours in overtime and never submitting time for it to show them I loved my job and was an excellent performer when I wasn't flatlined by my illness.

Anyway, I have had some pretty uncaring comments made, as we all have, even by family members. But, we have to remember they don't get it. Hell, we are confused by this disorder and we live it everyday. How could they possibly understand what we don't understand ourselves. One day we can do things and the next day we can't....surely that must make us look like we are *cherry-picking* our activities and obligations......just like that guy said on that other post. That was a painful post for all of us to read and made many of us mad, but there is something to be learned by it, because he came here and said what is being said behind all of our backs by other family members and we just don't know it. I know our illness is confusing to others, and I really don't know how to help them understand the illogical aspects of it. Just find good short things they can read and maybe have them watch that DVD I have mentioned several times on a few posts.

 
Old 11-14-2007, 12:44 PM   #10
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Re: 2 doctors have said fibro, massage therapist says no

Massage therapists (along with radiology techs, phlebotomists and pharmacy techs) are NOT qualified in any way to make a diagnosis or suggestion. They do not have the necessary training or the understanding of the big picture. I've spent way too much time in my life undoing things caused by somebody in the medical field talking when they didn't know what they were talking about.

No two people are alike. Don't listen to the therapist, she doesn't know what she's talking about because she doesn't have the training to know what she's talking about.

 
Old 11-14-2007, 03:16 PM   #11
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Re: 2 doctors have said fibro, massage therapist says no

Wow! Very passionate posts. Thank you. I know I shouldn't take what they say to heart but yeah, sometimes its hard. My husband is also so clueless as to how much pain I am in and how hard it is to get through my days. I am still playing supermom. I go to college part time, work part time, clean a gargantuan home and take care of the 2 of our 5 children that are still at home.
As far as meds, I forgot the sleep meds and the ones that help me use the bathroom.
Wish life was a little easier, I am only 40.

 
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