Musings on Fibro - Mindset, Bodyset ?

[Northernelf]

I have been watching a lot of uTube on fibro. Interesting stuff. I mean, hey, I feel like crap so I'm sitting around right ?

I mostly watch stuff presented by doctors, medical specialists. There are some theories that our biggest problem is serotonin reception and/or dopamine receptors. I don't claim to be an expert on any of this - just another sufferer on a journey.

It seems we are neurologically challenged. It's not necessarily a rheumatic issue but neural.

Dr Andrew J Gross has some interesting info on brain difference - it's kinda long but worth it. Dr. Murphree - the younger good lookin guy, series of nine episodes - has some interesting info. There is some discussion about treatment - treat sleep deprivation first (5-HTP) and maybe energy supplementation too (D-Ribose). Possible adrenal issues too....I"m not sure about that.

There is some support for pharm - but I have read on other sources that the main meds - Lyrica, Savella, Cymbalta - maybe a 30% reduction in pain....but major side effects. Hmm. Cymbalta also has big withdrawl issues.

Generally, the focus is on eating healthy, some supplements, moving...but sadly, no one thing that makes us feel like we used to feel...back in the day. The pain is always there...it's all about pain management.

I guess my point with this post is that the meds - well, they don't work well, have bad side effect. Many fibro folks have some results at first but over time....ineffective.

How ironic is that ???? A disease (yeah, I know they call it a condition or whatever, but I consider it a disease...life changer) that requries YOU to actively combat it..when you feel like doing nothing.

Anyway, go uTube - look for authentic info by medical specialists, there is a lot of info/opinions by people that have no cred....but it is interesting.

Another offshoot- stress=pain - we need to cotrol our stress. I think I finally get biofeedback - you can control how you react to stuff. Sometime when I am in pain I snap at my husband - I am learning to stop, think, and then respond. It's the pain speaking...I'm usually pretty easy going. ;-)

 

[Lubkos way]

Well for me,it is another Friday night and I wanted to enjoy a live band locally,but instead I am forced to stay home.nursing my pain after a hard week.After watching more enlightening geniuses than I wanted to see,I am also somewhat tired of all the experts who can't admit that they are all guessing what is going on!I really do not know when medical science became a fortune telling scam.The uncertainty is killing me!!haha!!Hmm,I thought a disease meant you have a degenerative "condition",while Fibromyalgia has no measurable damage that the geniuses can measure.The only measurable damage is to our lives emotionally,physically,financially,quality of life,....it hurts to even laugh at all the progress....Oh,and the best one is,it is all in your head!I hope your Saturday,and mine,feels better than today!

 

[vickythecat]

I also watch utube videos, but after a while my brain becomes too-informed, and it only starts to confuse me, to be honest. I also try to read research findings online, studies etc., but again my brain cant handle it!

Last I read that Italian scientists are close to finding a test for it, some anti-body stuff in our blood, so that a diagnosis can be confirmed. This sounds all great, but then again, they still don't know what really causes it, so how can they even start to test it? I don't know.....

The story of the great big pharma - the first doctor that diagnosed me with fibro had these posters of Lyrica, Cymbalta and Neurotin on her walls - pens, calendars, information sheets on fibro from the famous company. I was like 'of course you are going to diagnose me with fibro, because the big pharma will send you to a nice holiday, won't they?'. It took away the credibility of that doctor right away, but people around me were still convinced she was a well-respected, good doctor, but I fully disagree. How can a doctor hang posters she received from the big pharma companies in her office???

And of course, she put me on those meds, increased the doses as they'd do nothing for me. The point when I did have less pain was on the highest dosage, but the side effects were a nightmare. And they are quite expensive meds as well, that work for a small (I was privately insured in the beginning so had no idea of the high costs)

but after years i now know that acceptance works better than most meds. Accepting does not mean defeat, it means listening to one's body, learning one's limits and trying to be fine with the new reality. make it best of it.....

 

[Lubkos way]

I also stopped taking Lyrica,paxil,flexeril,loperamide,and a few others that I have forgotten the names.My doctor that put all the specialists' suggestions together,listened to my thoughts.He knows nothing about fibro,but he listens and has no posters!The fact that he listens,and follows MY suggestions makes him a treasure for me,and he keeps his ego locked away somewhere.He knows he doesn't have any real help for me but understands that listening is so important.I think if your doc is only interested in talking down to you,it is time to look for a new doc!

 

[Tipnatee N]

Northernelf I believe your thoughts are very similar to how I view it too.

Too many speculating I agree. While I believe most of them are truthful finding facts, none of them have yet to point to the origin of fibro by any long shot.

I remember one night after watching too many doctors' videos on youtube about new facts of fibro, I was so dizzy and passed out sleeping for hours. I guess I forgot to turn off tv and because it was on the science channel , I had one of the most crazy vivid dream I could never forget.

In my dream I've found a new video on youtube talking about the true origin of fibromyalgia being found at last. In the video said a scientist found a meteorite that contain unknown alien virus . After many test with the labrats result found that the rats suddenly become over sensitive to enviroments and look like it having a very hard time moving without any sign of visible illnesses internal nor external physical damage. Some starting to produce tears , some lost appitie , some lost balance , some showing sign of mentally trauma disorder, irregular hearts beats, sleep disorder insomnia, and most of all showing sigh of pains intolorance similar to hyperesthesia and fibromyalgia behavior. :shock: :shock: :shock:

I don't remember much about the rest of my dream but it was so vivid when I woke up I started to searching entire youtube to find the same video cause I couldn't believe it was just a dream do to how real it was to me.

So do me a favor Northernelf , please be careful while watching too many youtube videos. DO NOT fallen sleep while science channel still on your tv ever!!!

 

[diamond]

I have to tell you i have had various people...well meaning i know..... send me articles about a natural herb cream that cured fibromyalgia and another about how it originates in the nerves in your hands and all you need to do is stay cool...another person told me he had fibromyalgia but cured it by stopping taking aspartame to sweeten his coffee and tea!

Any of you who know me know i am at severe end and struggling to do anything very meaningful...so these cures while sent with care make me feel invalidated if that's all they think it's going take to cure me!...or even to get me out of pain when im climbing the walls...lol well i wish i was!!

 

[Tipnatee N]

I have to tell you i have had various people...well meaning i know..... send me articles about a natural herb cream that cured fibromyalgia and another about how it originates in the nerves in your hands and all you need to do is stay cool...another person told me he had fibromyalgia but cured it by stopping taking aspartame to sweeten his coffee and tea!

Any of you who know me know i am at severe end and struggling to do anything very meaningful...so these cures while sent with care make me feel invalidated if that's all they think it's going take to cure me!...or even to get me out of pain when im climbing the walls...lol well i wish i was!!

Oh no. Now I'm going to dreaming of you climbing the wall tonight :shock: Whatever you'll do please don't turn your head around. :mrgreen:

 

[sunkacola]

....................
The story of the great big pharma - the first doctor that diagnosed me with fibro had these posters of Lyrica, Cymbalta and Neurotin on her walls - pens, calendars, information sheets on fibro from the famous company. I was like 'of course you are going to diagnose me with fibro, because the big pharma will send you to a nice holiday, won't they?'. It took away the credibility of that doctor right away, but people around me were still convinced she was a well-respected, good doctor, but I fully disagree. How can a doctor hang posters she received from the big pharma companies in her office???

And of course, she put me on those meds, increased the doses as they'd do nothing for me. The point when I did have less pain was on the highest dosage, but the side effects were a nightmare. And they are quite expensive meds as well, that work for a small (I was privately insured in the beginning so had no idea of the high costs)

but after years i now know that acceptance works better than most meds. Accepting does not mean defeat, it means listening to one's body, learning one's limits and trying to be fine with the new reality. make it best of it.....

VickyTheCat, you speak truth here, big time. Even if you don't see posters on the walls, there is no doctor that is not receiving all of those things, plus visits from pharm reps who push the drugs and offer all kinds of nice incentives if the doc reaches a certain quota. It's disgusting, but healthcare in most countries is controlled by exactly the people who should not be controlling it -- those who are only using it as a business to make as much money as possible.

You also speak truth about acceptance.
This is something I feel very strongly. If a person spends time and energy on "this is not the way it Should be", they will make the situation, no matter what it is, worse. And it is a waste of energy especially for those of us who have limited energy.

If something is, then it just IS.
Accept that first. Acceptance is not, as Vicky says, defeat. It is not endorsement or approval. It is not the same as being passive or thinking there's nothing to be done. It is simply accepting that this moment, this is what exists.

The very next moment it could change. But people who spend time on resenting what is happening (whether it be physical, medical, political, or anything else) cause themselves more suffering.

Of course, managing not to spend any time at all on wishing things were different is easier said than done. But when I start to go there, I try very hard just to stop myself.

Or if I need to, I will vent and moan for a few minutes (that's why this forum has such a place!), and get it out, and then go on. The important thing is not to get stuck there. Acceptance of what is in this moment allows one to get un-stuck.

A friend of mine and I once used to say to each other, "Permission to complain?" and then set a time limit, say 5 minutes. After that, we moved conversation to something else. It was very helpful.

 

[Lubkos way]

I am going through some interesting changes lately,and I was wondering how many of you have had tests to see if malabsorption of nutrients is an issue?My problem is that my fingernails have ridges and waves on them for decades.None of the geniuses have been able to figure out why.In chinese medecine,they diagnose such issues partially by looking at your tongue's surface coat,any lines(cracks) and the color.I have a line through the middle to the tip.Theoretically,it shows a stomach line,yin deficiency with heat and wind(tongue quivers when you stick it out).Now the good news,in the last 2 months the waves and ridges on my nails have begun to dissipate noticeably,and the depth of the line on the center of my tongue has begun to close up,not dramatically but I can notice it clearly.I have not talked about it with my doctor,for obvious reasons.So my questions,have you ever tested for it and any thoughts on what is happening,it is positive I think,right?

 

[vickythecat]

A friend of mine and I once used to say to each other, "Permission to complain?" and then set a time limit, say 5 minutes. After that, we moved conversation to something else. It was very helpful.

I love this!

My only close friend has been very negative for a while now, and lately I am even dreading her messages. She complains endlessly about everything. (it makes it more frustrating for me because she can work, earn a decent living, has her own place, is healthy, she can go on dates with guys, have intimacy and romance in her life...things that are impossible in mine)

I will now definitely suggest a '5 minute permission to complain' as well. And only once a week, not every day! Too much negativity only brings about more negativity. Let's focus on all the thousands of other things happening in life. The beautiful things that we often forget about.

 

[Lubkos way]

I am a little disappointed in the fact that,there are so many people who read this forum,but do not contribute their own thoughts to the conversation.I wish they(you) would contribute what their(your)facts are!Some of us want to hear what the similarities and differences are between us,for one simple reason.I (and I am sure you all are too!)am searching to end this nightmare.Is everyone waiting for the medical community??You know who will find the treatment,and hopefully a cure?It will be one of us,one who has an inside view of the so called "invisible illness".I know,it feels good emotionally to share all our issues with someone who understands,but I do not need therapy,I need a treatment!Can anyone help tell me what they believe is the reason why we all have somewhat different symptoms from one person to the next?

 

[vickythecat]

I wish they(you) would contribute what their(your)facts are! Some of us want to hear what the similarities and differences are between us,for one simple reason.Can anyone help tell me what they believe is the reason why we all have somewhat different symptoms from one person to the next?

I could not agree more.

I also want to hear from all of us;

YES, YOU! I KNOW YOU ARE READING THIS, PLEASE SHARE YOUR THOUGHTS, EXPERIENCES WITH THE COMMUNITY SO THAT WE CAN, TOGETHER, BEAT THIS ILLNESS

The more the better. The more we share, compare, analyze, the more we are aware of how far this illness can go. How differently it affects us and how we can cope with it.

Information is power and we are already so powerless against this nightmare illness. So we need to share all that we know, experience and go through.

 

[Peaceandquiet]

Hi Everyone,

I've been taking a break. We all need to from time to time.

During my break from contributing to the forum I have been attending to long term medical issues in an attempt, by process of elimination, to finally work out what is fibro pain and what is not. Also what is fibro fog related or just that I ate too much chocolate!

Here is what I have done:

Step 1....Changed doctors. (Now that was huge for me). I'm so glad I did because I have had a very good response and a fresh start.

Step 2.....Try Cymbalta against my natural instinct.....the jury is still out but apart from side effects, the pain has reduced. I will press on with it....it's only been six weeks now.

Step 3.....Try Tramadol against my natural instinct......first dose so so....slow release not too bad....taking 50mg say 2 days per week just to get some sleep or if I have to go out for an extended period.

Step 4.....Had knee MRI....Saw surgeon....need knee replacement within next two years...top of tibia bone in bad shape....not fibro....take meloxicam and paracetamol as needed for now.

Step 5.....Totally gluten free diet....tummy heaps better.....many fibro people have good effects at first which I did but pain came back.

Step 6......Stand up for myself when others negate my feelings and my pain. Cancel unnecessary appointments without guilt. Take the good days with joy and accept that the bad days will pass.

Step 7......Drink more water, move around a bit, walk short distances, stretch, self massage arms and legs for fluid drainage, eat fruit and vegetables, sit in the sun if it shines for 20 mins every day.

Step 8.......Maintain good posture for what muscles are left to be able to support my spine in good alignment. Spend less time in bed....just take rests.

Step 9.......Spend less time with people who drain me. Stop apologising for my frailties. All my life I have been a giver not a taker....time for me now.

Peace and love to you all.

 

[diamond]

Brilliant Peaceandquiet ...so proud of you.

 

[vickythecat]

Hi Everyone,

During my break from contributing to the forum I have been attending to long term medical issues in an attempt, by process of elimination, to finally work out what is fibro pain and what is not. Also what is fibro fog related or just that I ate too much chocolate!

This is exactly what I am attempting to do as well. I have brought out all my medical records, listed all procedures, surgeries, meds, side-effects, therapies, alternative therapies I have been through. I also listed the doctors I have to visit (I have not been to any doctor for 3 years, incl the dentist! Now I will go to new doctors and am in the mindset of switching if I am not happy with the ones I find), I also wrote down my questions for all of them.

I now have to pick up the courage and the energy to actually go to these doctors. And that seems to be a very complicated, tiring, anxiety-filled task. But I have to do it, end of story.

Like you, I also want to know what it fibro and what is not.

3 years ago, ALL and I mean ALL my complaints were blamed on fibro by my doctor at the time. IBS, tendinitis, bursitis, frozen shoulder, plantar fasciitis (though I have a clear heel spur on the Xray), heavy periods/painful cramps, extreme PMS, teeth pain, headaches, eye pain, neck pain (even though clearly the 2 failed surgeries on my neck are the main cause), hip pain, sleep problems...every single thing. Fibro fibro fibro.

Now I want to eliminate things. I want to know the real cause of the pain and not just blame fibro. That's the easy way out. I know for some of these complaints there is a 'visible' reason behind it (like the heel spurs in both of my feet).

So your post and your list is such a motivator for me.
Thank you soooo much for sharing and giving us all that extra kick in the butt to go and discover our bodies from the start. )))