Different Perspectives on Fibro

[fibro849]

Hello, I was formally diagnosed with Fibromyalgia back in 2011. Like many others with fibro I was continually told by doctors I would have to live with the debilitating pain, also none of the medication or rehab helped at all.

Long story short In 2016 I became pain free, and have lived a normal life ever since. I have spent the past 10 years studying medicine and formally the past 5 years studying herbalism in the quest to help others manage their fibro pain. My full-time job is a fibro care clinic.

This is not an advertisement or miracle cure, as my clinic is in Australia and everyone is different in regards to treating fibro. I started this thread in case anyone wanted to ask questions, learn about fibro from a different perspective. I will spend as much of my energy as I can to answer questions in my free time. My purpose is to help educate those with fibro to live a better life as we all know how hopeless and despairing living with fibro can be.

Please keep it friendly and respectful or I will stop the thread as this is purely for helping those who want to learn and heal themselves and appreciate different perspectives.

Thank You.

 

[sunkacola]

To what do you attribute your being able to have no pain now?
What did you do in 2016, or in the years leading up to that, that you feel contributed to or caused this relief from pain?

 

[fibro849]

To what do you attribute your being able to have no pain now?
What did you do in 2016, or in the years leading up to that, that you feel contributed to or caused this relief from pain?

Hello,

My pain was quite intense for a few years to the point that in 2011 it was a 9/10 and I had to stop all work) study etc and couldn't leave the couch. At this point I had tried every doctor, physio, rheumatologist and nothing worked. The last thing I tried was going to a sports doctor who gave me local anaesthetic injections in my back. Long story short, (I can explain this more if you're interested) it was the first thing that provided me relief and after a while despite being skeptical I realised the 'trigger points' he was needling were actually 'acu points'.

From here I started to learn more about Chinese medicine and many years later I found out they actually had a long history of treating fibro and view the condition differently. Although at first I changed diet suited to me, did specific movement practices and worked on stimulating 'trigger points' every day. Years later I met a few good Chinese medicine doctors and after some treatments and switching lifestyle a bit more i was finally pain free for good.

 

[fibro849]

Hello,

My pain was quite intense for a few years to the point that in 2011 it was a 9/10 and I had to stop all work) study etc and couldn't leave the couch. At this point I had tried every doctor, physio, rheumatologist and nothing worked. The last thing I tried was going to a sports doctor who gave me local anaesthetic injections in my back. Long story short, (I can explain this more if you're interested) it was the first thing that provided me relief and after a while despite being skeptical I realised the 'trigger points' he was needling were actually 'acu points'.

From here I started to learn more about Chinese medicine and many years later I found out they actually had a long history of treating fibro and view the condition differently. Although at first I changed diet suited to me, did specific movement practices and worked on stimulating 'trigger points' every day. Years later I met a few good Chinese medicine doctors and after some treatments and switching lifestyle a bit more i was finally pain free for good.

This is definitely not to say this will work for everyone though, as everyone is different and there are lots of different causes for fibro traditionally speaking. This is just what worked in the lead up for me..

 

[JayCS]

Hi fibro849, and welcome to our forum!
Hmm, first appeared as if you were suggesting something new,
but now you've explained more it seems that you've had success with things I've (we've) also all tried,
without me/us having the same success...

Great to hear that you're putting all you've learnt to good use in your fibro care clinic,.
From what you say not just your own experiences, and you'll cater for all "tastes".

I always find it an unmistakable positive sign when practitioners listen before they advise.
Second best that they listen more closely when they start realizing that they are coming "at" someone with things they already know and have done.
Otherwise it seems as if they know it all and we haven't got a clue.
Was that also your experience? And do you think that too?
For your interaction here that could mean starting to listen closely to a few of the many things we've been saying on other threads and learn from us like we do, at the same time as building any additions onto that, so we can learn from you.

 

[fibro849]

Hi fibro849, and welcome to our forum!
Hmm, first appeared as if you were suggesting something new,
but now you've explained more it seems that you've had success with things I've (we've) also all tried,
without me/us having the same success...

Great to hear that you're putting all you've learnt to good use in your fibro care clinic,.
From what you say not just your own experiences, and you'll cater for all "tastes".

I always find it an unmistakable positive sign when practitioners listen before they advise.
Second best that they listen more closely when they start realizing that they are coming "at" someone with things they already know and have done.
Otherwise it seems as if they know it all and we haven't got a clue.
Was that also your experience? And do you think that too?
For your interaction here that could mean starting to listen closely to a few of the many things we've been saying on other threads and learn from us like we do, at the same time as building any additions onto that, so we can learn from you.

Hi, nice to meet you and thanks for your positivity and kind words. Here to learn and share

 

[JayCS]

Hi, nice to meet you and thanks for your positivity and kind words. Here to learn and share

As similarities to treatments that have helped you, I can add that:
acupressure, first by a TCM-influenced expert, now self, helps me a lot with various issues, esp. local pains,
a Chinese acupuncturist helped a bit with fatigue all last year (but brought a lot of imbalance, e.g. to sleep),
I'm trying a TCM-influenced herbalist now, she's doing her best to (let me) adapt it to what works, but hard,
my diet is already strict and optimized, but TCM recommendations have pointed to some additional foods,
my 'specific movements' won't be the same as yours? Together with a massager essential for local pains,
lifestyle is something I've never had a TCM recommendation for that I don't do already or can't do...

 

[fibro849]

As similarities to treatments that have helped you, I can add that:
acupressure, first by a TCM-influenced expert, now self, helps me a lot with various issues, esp. local pains,
a Chinese acupuncturist helped a bit with fatigue all last year (but brought a lot of imbalance, e.g. to sleep),
I'm trying a TCM-influenced herbalist now, she's doing her best to (let me) adapt it to what works, but hard,
my diet is already strict and optimized, but TCM recommendations have pointed to some additional foods,
my 'specific movements' won't be the same as yours? Together with a massager essential for local pains,
lifestyle is something I've never had a TCM recommendation for that I don't do already or can't do...

Cool, and interesting. In terms of specific movements, I have switched entirely to Taiji these days, as after a while I found it was a complete system in terms of its ability to be able to adapt the movement for each person. What movements do you do?

Nice, TCM rocks, the one thing that took me a long time to learn with TCM for fibro is that it can be different to treat than how tcm doctors are usually trained to treat things. The good thing is that TCM is going to holistically treat the condition anyway, but there are some nuances specifically for fibro.. If you're interested? (Feel free to say go away) Something that might make the treatments even more effective might be to mention to your CM Doctor: in fibro cases the 'bi' (wind damp) must be cleared away first before moving blood.

I don't mean that to sound prouncy, it just might help if an acupuncturist/herbalist hears that as it may increase the effectiveness even more, as fibro is a sub division of CM.

Cool to each their own, for myself and clients lifestyle is the single biggest factor, but some people are already lucky enough to have that set

 

[sweetkamie20]

I'm very interested in hearing what's worked for you! And I'm wondering if treatment varies based on symptoms? My prominent symptoms are flu-like and burning neck, shoulders, and head...

 

[fibro849]

I'm very interested in hearing what's worked for you! And I'm wondering if treatment varies based on symptoms? My prominent symptoms are flu-like and burning neck, shoulders, and head...

Hey! Cool.

Yep, treatment (at least the system I use) definitely varies not just based on symptoms but on each person, and at what time of the year it is what the weather is doing, and which type of fibro or which of the initial conditions have caused the fibro (usually there are 8 common types). Be a bit hard to tell just with the info you gave me, you could give a bit more if you like..? Flu-like symptoms and burning neck, shoulders and head sounds like excess nitric oxide (neurotransmitter) in the system causing a build up of inflammation (think like there is a traffic jam on the highway which is causing the road to become clogged and not transport cars effectively - the same thing can happen in your body in relation to your lymphatic system)

What worked for me went in stages (as often does for people). Initially for a short time it was trigger points, then it was managing to do cardio and light body weight exercise, but that only worked for a short while and then bam like often the case I was brought back to chronic pain. Followed this pattern for a while doing qigong and yoga and seeing different acupuncurists, until I started taiji and this is what changed me for good. (I had a very good teacher though)

It tool me a long time after this to realise that I was only moving the fibro symptoms around in my body in earlier days and not clearing out the root of the pattern (which in my case was a pathogen which was causing havoc in my system). In a brief nutshell this is it, but happy to explain more if you have questions...

 

[sweetkamie20]

Thank you so much for taking the time and energy!

I first noticed fibro symptoms at 25 years old in the midst of a serious case of sepsis from something akin to MRSA.

The initial symptoms felt like heavy lead coursing through my veins. It was May…

i never tried to treat it because I thought it was just recurring MRSA in my blood and doctors just shrugged it off…however i eventually did try to treat it with homeopathy which unleashed far worse flares. Now my symptoms are less like lead in my veins and more the burning and flu…I do have epilepsy so my transmitters are a little off . Is there any other info that might be helpful?

 

[fibro849]

Thank you so much for taking the time and energy!

I first noticed fibro symptoms at 25 years old in the midst of a serious case of sepsis from something akin to MRSA.

The initial symptoms felt like heavy lead coursing through my veins. It was May…

i never tried to treat it because I thought it was just recurring MRSA in my blood and doctors just shrugged it off…however i eventually did try to treat it with homeopathy which unleashed far worse flares. Now my symptoms are less like lead in my veins and more the burning and flu…I do have epilepsy so my transmitters are a little off . Is there any other info that might be helpful?

You're welcome How old are you now? Which part of the world are you in?

Yes what you mention for you is very common. I would say 99% of fibro is caused from an invading pathogen coming into the body. Once it gets in in most cases it hijacks into your HPA axis (hormones, temperature regulation etc) and turns the heat up in your body among other things so it can thrive better.

They also create biofilms which essentially are bacteria covered in snot which then hardens into a crust. This acts as a fortress for them where the normal macrophages in our body can't attack them. They stay here and then proliferate until they get to a high enough number where they then move out of the fortress and are ready to start attacking the rest of the immune system and take it over even more.

Clearing out these pathogens by rebalancing the microbiome is the most important thing in the majority of fibro cases in my experience.

Plenty of more info to read, but I'm aware of the rules of this website and don't want to advertise. Feel free to message me though and I can always see if I could help a little bit more about your condition etc..

 

[JayCS]

In terms of specific movements, I have switched entirely to Taiji these days,

I thought so, "or" qi gong. Slow movements are an ordeal for me, in the fibro in-clinic I was the only one who had to quickly opt out every time...

a complete system in terms of its ability to be able to adapt the movement for each person.

so I tried various youtube videos and realized I can do the hand movements lying on my back. But it didn't make sense and help as much as other movements.

What movements do you do?

Loads of stretches & exercises specific to each local pain or tenseness of muscles, my speciality being "twist-stretching" everything, often at the same time. All usually in short stints of under 30''. Long stretches like in Yin Yoga or normal neck/back exercises rip me up. Youtube for any new idea I need, using the symptom and all the physical self-treatment procedures I can think of, often even if I think they're not suitable, I'm often surprised what pressing a few spots on my body resolves and how quickly.

some nuances specifically for fibro.. If you're interested? (Feel free to say go away) Something that might make the treatments even more effective might be to mention to your CM Doctor: in fibro cases the 'bi' (wind damp) must be cleared away first before moving blood.

Sounds as if my practitioner is trying that, as she believes I have too much "dampness". Strange for a Westener who feels he has dryness everywhere except gut, losing fluid all the time, however much drink.
Definitely no success so far.

fibro is a sub division of CM.

Don't get how you mean that... makes CM sound like a Chronic Medical disease

 

[fibro849]

I thought so, "or" qi gong. Slow movements are an ordeal for me, in the fibro in-clinic I was the only one who had to quickly opt out every time...

so I tried various youtube videos and realized I can do the hand movements lying on my back. But it didn't make sense and help as much as other movements.

Loads of stretches & exercises specific to each local pain or tenseness of muscles, my speciality being "twist-stretching" everything, often at the same time. All usually in short stints of under 30''. Long stretches like in Yin Yoga or normal neck/back exercises rip me up. Youtube for any new idea I need, using the symptom and all the physical self-treatment procedures I can think of, often even if I think they're not suitable, I'm often surprised what pressing a few spots on my body resolves and how quickly.

Sounds as if my practitioner is trying that, as she believes I have too much "dampness". Strange for a Westener who feels he has dryness everywhere except gut, losing fluid all the time, however much drink.
Definitely no success so far.

Don't get how you mean that... makes CM sound like a Chronic Medical disease

Lol my bad, I meant to say treating fibro can differ from the regular approach of TCM. Depends on what practitioner you see though/how they're trained..

Yeah stretching can be a tough one, ligaments and tendons can get so weak..

Oh cool sounds good, yes quite often if there's dampness in the gut (usually from leaky gut) other cells in the body can be quite parched. Just like when it floods, lots of water in one area, but as a result where the water came from is now quite dry.

 

[JayCS]

if there's dampness in the gut (usually from leaky gut) other cells in the body can be quite parched

Ah, that has an inner logic, thanks for bridging that gap in my head....
My practitioner also reminded me of how leaky gut is sposed to work, just whenever I read up about it, I conclude it isn't anything much like my symptoms.