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tracyferrell

New member
Joined
Apr 11, 2016
Messages
5
Reason
Undiagnosed
Diagnosis
04/2016
Country
US
State
PA
Hello all,

Although I still have not been diagnosed with fibro (at this time doc just keeps claiming it's myfascial syndrome) I had yet another incident that makes me think that I may have fibro.

Being that my doctor hasn't given me any guidance or direction on how to manage my "myofascial pain", and after researching it (amongst tons of other info related to the many, many symptoms I now have), I read that one of the things to help with myfascial pain is massage, specifically trigger point or massage specifically for myfascial pain.

When I arrived at the place to get a massage, and was given the questionaire to fill out it had inquired about why I was there and what was the reason? I had stated more than once on the questionnaire which kept pointing to questions based on "conditions" that I was diagnosed with myofascial pain syndrome. In either case when the time came to have the massage I was nervous because so far I've had really bad luck at with accupucture (horror story with how much pain I endured for nothing), as well as the chiropractor (just brought on new symptoms after 5 sessions) so I made sure to tell him that "I personally believe that I have fibromyalgia", and for some reason he just seemed to skirt past the issue as he mumbled something about "well you know fibro is pretty broad in what it means and how it's viewed" or something like that....well as usual I kept my mouth shut and let him proceed to doing the massage.

I must say certain parts of it felt absolutely wonderful! But then there were other parts that were very uncomfortable but I kept telling myself "well that's just because he's doing the trigger point stuff" I mean he was litterally taking his thumbs in certain areas of my body and pushing in really really hard and I just flinched and like a fool didn't tell him to stop because I figured it was all part of the process.

Well......guess what. that one hour massage I had caused me so much pain in my entire body from head to toe that I was basically laid out flat for hours just writhing in pain until finally the doctor's office called in a scipt for prednisone and pain pills. I paid for that massage with pain and recovering for nearly 2 weeks.

Is that normal? Has anyone else had this happen to them?

Tracy
 
Before i was diagnosed with fibro I was sent for physiotherapy for a variety of pain areas...foot knee and shoulder/ shoulder blade .

I had no idea why these pains had started aside from maybe a fall I'd had months before..

The physiotherapy and massage had very negative consequences ..... severe pain way beyond anything normal.

It was this response by my body that helped the consultant diagnose me with a chronic pain syndrome.

Some people find gentle massage helps I believe...for me all sorts of things quickly established themselves as not tolerable by my body.

It comes as quite a shock when you have been completely healthy and suddenly everything causes pain flare.

Massage just seizes my body up. ..Take note of what your body is telling you and maybe try some gentle stretching instead.

Chiropractors massage therapists doctors.....tbh very few understand just how super sensitive some of us are.

If they skirt passed what you are telling them about fibromyalgia then they are not qualified to help you and may give treatments that are way ott for you.
 
Before my current fibro diagnosis I got weekly massages it was the only way to get to the deep down pain in my bones and muscles. In my arms massages can be better than the lousy pain meds that people with fibro are mostly only allowed. Having fibro does not mean they will even focus on your pain issues and most doctors I've come across here in Canada will only prescribe anti-depressants for pain. Going on and off one wacky drug after the other having to get your body use to it, deal with the side effects, then go off of it and dealing with the horrible withdrawals from them are terrible. Not only that but they change your personality and really mess with your system and cause weight gain. Anyway that's my rant on anti-depressant garbage and being stuck with a fibro diagnosis. Back to the subject...I'm new to myofacial pain...mine is more of a face and jaw breakdown and I have no idea what the cause is. I thought massaging it alot today would relieve some of the tension but now the muscles have seized up and my jaw joint has broken down even more just by rubbing it...snapping and popping, I just hope it doesn't get to the point where it dislocates. I will not be happy, if someone told me years ago that your jaw could fall off I would not have believed them...now I'm not so sure...scary stuff. I'm going to have to go to a specialist for this...none of my doctors know...it'll breakdown and then heal, breakdown again and heal. This time it didn't heal so well and it's breaking down again and swollen. I haven't done anything different...other than reduce my meds a bit. Hopefully you/we can find a solution to the pain, it's not normal.
 
I got the trigger point therapy workbook and a tool to help me give myself massage. I have found it helpful, but I only do the massage very gently, never so that it is painful. I don't do the massage for very long either.

I'm sorry you had such a bad experience.
 
Maybe find a therapist who definitely listens to your concerns and clearly has an understanding of fibro and might start very gently with one part of your body and see how you respond.
 
One of my appointments with a physical massage therapy went bad, she kept telling me she was barely touching me. I did t return.
 
Massage is one of the only saving graces for me with fibromyalgia, but the effects are temporary. I think it's important to find a really good therapist who listens and will tailor the massage to your needs. For me, I can't handle deep pressure, especially near my neck or hips. I do better with long, flowing strokes that use more oil. I need to relax before a therapist attempts anything slightly deeper. I prefer therapist who do work on the abdomen as well because I have IBS/IC as do many fibromyalgia patients, so my abdomen is a source of a lot of discomfort. Perhaps also because I am hypothyroid.

The truth is, depending on whether I am in a flare or not, not all fibromyalgia sessions help me the same amount. Some are incredibly effective, and sometimes I have too much inflammation for it to help that much. It still feels great to be able to relax on the massage table though. For me, massage has been far better than acupuncture.
 
Thanks everyone for your replies. I have to say that at the time I posted that I was so discouraged because every time it seems as if I make progress, I do one of the "recommended" techniques and then it seems to back fire on me.

I will say however that I am still not giving up on my trial and errors with finding what will work. After all it's only been 8 months since I've started having the full blown effects of FM.

For the most part I've been taking practical steps....baby steps so to speak. I have omitted gluten from my diet, I now do nutriblasts and am very conscience of getting all of the full spectrum of raw veggies and fruits...I love eating this way and haven't really missed any of that processed food I've completely stopped eating several months ago. I'm slowly phasing out most sugar (low fat yogurt was my downfall); I've also eliminated caffeine and try like heck to adhere to daily cardio (still can only walk mostly (I used to be a gym maniac for 20+ yrs up until a few yrs ago) so hoping I'll be able to run again some day.

I will say this....since I've changed my eating habits, keep up with cardio and stretching, and even changed my attitude and knowing my limits compared to several months ago, I have improved almost 80%. People ask me all the time if I think these changes are helping me. I tell them with the utmost sincerity "I'm not sure but I'm afraid to find out because those days/nights just a few months ago were so wretched that I feared that I wouldn't have the emotional or physical strength to carry on like that for the rest of my life, and that even if I could, I would get panic attacks thinking I may end up
having to".

My next step will be the Guaifenesin protocol. I am still reading the book and preparing for all of the steps I will need to take prior to starting it so right now it's a bit overwhelming but it completely seems like a logical theory and in sense scientists are starting to find specific correlation with Dr. Amand's claims, so we'll see.

Thanks again everyone for your responses, I greatly appreciate it.
 
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