Recently diagnosed

Trying

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Jan 10, 2022
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7
Hi, im new. Just came home with this diagnosis. In such agony. Been like this for a few days. Im ready to stay in bed... Ive worked so hard in my emotional recovery, i dont want a setback i understand grieving is part of acceptance. Every day i get out of bed is a miracle. I dont know how to relieve my pain. The nerves are just shooting pain.
 

sunkacola

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Hi, im new. Just came home with this diagnosis. In such agony. Been like this for a few days. Im ready to stay in bed... Ive worked so hard in my emotional recovery, i dont want a setback i understand grieving is part of acceptance. Every day i get out of bed is a miracle. I dont know how to relieve my pain. The nerves are just shooting pain.
Hi Trying.... and welcome to the forum. It is my hope that you find support here, and perhaps even some answers to questions and some ideas on how to deal with the new reality you are facing.

My first suggestion is that you check out this post on how to manage fibromyalgia. It has many, many ideas and if you start trying them you may very well land on some combination of things that will work to make your live more enjoyable. If you have any questions about what I wrote there, please feel free to ask.


I also want to say there aren't any stupid questions here, and we all strive to be helpful to one another.
The early period after diagnosis can be brutally difficult for many people. I know it was for me! But I have come to a good place with it most days, and I can offer my ideas on how you can do the same, even though everyone is different.

The key is to dedicate yourself to exploring everything and finding out for yourself what will help, because no one else, especially doctors, can tell you exactly what that is. You may be told: Healthy diet, Exercise, Good mental attitude and so on, but until you explore these things in different ways for yourself you won't know how exactly to do those things in a manner that will be effective for you. My posty includes many suggestions for how to get started with that investigation.
I wish you the best.
 

Trying

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Thank you so much for your input! I already started researching. I came up with bio feedback i will discuss with my nuerologist when i see him next. Its a treatment that teaches the person to remain in control of their nervous system. I love this concept. It may be what i need for mental health area to. Have anyone tried this type of treatment?
 

sunkacola

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I do biofeedback when I get an anxiety attack.
I have a pulse/oximeter, and as soon as the anxiety attack starts I pop it on my finger and start concentrating all of my attention on the number indicating my heart rate, willing it to go down. I focus on that to the exclusion of everything else, and the vast majority of the time I can get it back to normal in only a few minutes and the anxiety attack is over. I didn't even know this was biofeedback until someone told me that it was.

I have not heard of it helping with pain, but I am very interested in your experiences with it, so please post about it, Trying.
 

JayCS

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Joined
Sep 5, 2020
Messages
908
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Its a treatment that teaches the person to remain in control of their nervous system. I love this concept. It may be what i need for mental health area to. Have anyone tried this type of treatment?
Hi Trying - Well, actually, before you start with complicated stuff without much evidence,
have you tried all the forms of relaxation, which of course definitely have lots of evidence for pain, stress, anxiety, mood and more?
Esp. progressive muscle relaxation, autogenic training, yoga nidra, meditation, self-hypnosis?
Essentially these are basic sorts of "bio-feedback" and get you in control of your nervous system.
And all you need is a good book or all the youtube videos.
 

sunkacola

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It might be possible to do a modified form of biofeedback the way that I do with my pulse/ox. I don't think it necessarily is complicated. About not having much evidence....do you mean biofeedback doesn't have much evidence? 'Cause it sure does, so I think you must mean something else, @JayCS . Biofeedback has been used for decades now and I think it has been proven to work, although of course nothing works on everything for everybody.
 

JayCS

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Messages
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DX FIBRO
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do you mean biofeedback doesn't have much evidence? 'Cause it sure does
Hmm.. of course biofeedback, or neurofeedback as it's now more often called, has been used for a long time. But there aren't that many studies on it, and those that I see are small and calling for clearer research.
However a study from 2010 (hard finding recent ones, as I say) says it is or was being used quite a bit in the US? (38% of adults 12% of kids). But here in Germany it doesn't seem to be taken particularly seriously, e.g. recommended and taught. People aren't getting gadgets to measure e.g. skin conductibility or getting EEG training.
I've read articles about people learning to steer e.g. a virtual aeroplane with 'brain power' to get things like ADHD under better control and there are studies that show that it works a bit, but none of the people with ADHD I know have ever been able to try it. I've also read about controlling seizures with it and tried that myself, however I find that stressful and it almost always just results in the seizure coming up later anyway. I was never suggested to try this by any of my (many) neurologists. I would have had it been offered.
What I can do is get my blood pressure and heartbeat down - thru autogenic training. Once I had to wait for hours for a heart exam because my pulse was too high, but I didn't realize what the problem was, they didn't tell me, they just kept saying we have to wait, then gave me some meds, which didn't work, then when I realized I did an intense relaxation and got it down inside of 5 minutes.
Or in a wake-up room after endoscopy I was on a heart machine and could see my heartbeat at about 56 and made it go down to under 50 for fun, which annoyed the nurse who came running. (But they'd annoyed me before :LOL: by not covering me up so I got a really bad sore throat).
So these were gadgets with which I could prove that I can do that.
And I can get some of my anxiety and pain down a bit with relaxation. And these are from what I've read the main reasons for neurofeedback: for getting a feeling for your body back, and thus being able to relax better.
So what I mean is that it'd be quicker and cheaper to try the relaxation types first without having to pay for an EEG or other gadgets - that's what I mean by 'complicated'.
Of course an oximeter is simple & quick & cheap & uncomplicated and if necessary I definitely would take that.
I can use my blood pressure meter for "training", if I'd feel the need. Or just put on a Yoga Nidra audio and I know my pulse is down inside of minutes.... :cool:
Relaxation methods and cognitive behavioural therapy (CBT) have quite a lot of hard medical evidence for fibromyalgia. And of course neurofeedback is associated - it is relaxation and it is behavioural therapy.
 
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Badger

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Apr 2, 2021
Messages
91
After hearing about Yoga Nidra on this site a few weeks ago I've been following a YouTube video most days with a session for pain. Sometimes I fall asleep during it, body scan relaxation was recommended at the pain clinic back 2007, so I'll be keen to practice Yoga Nidra regularly and see what happens.

It may combine well with the mindfulness meditation I've practiced for the past two years. The app I settled on has had some interesting approaches and pod casts. Fortunately diaphragmatic breathing exercises have helped in the past year.

If you can gradually build on what you learn and what works for you it may lessen the impact. Just be sure to stay the course and be kind to yourself.
 

Lemon

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Joined
Nov 27, 2021
Messages
46
I do biofeedback when I get an anxiety attack.
I have a pulse/oximeter, and as soon as the anxiety attack starts I pop it on my finger and start concentrating all of my attention on the number indicating my heart rate, willing it to go down. I focus on that to the exclusion of everything else, and the vast majority of the time I can get it back to normal in only a few minutes and the anxiety attack is over. I didn't even know this was biofeedback until someone told me that it was.

I have not heard of it helping with pain, but I am very interested in your experiences with it, so please post about it, Trying.
I didn’t know this was was biofeedback either, I also do this! That’s cool. It kinda helps sometimes
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
908
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Yoga Nidra on this site a few weeks ago I've been following a YouTube video most days with a session for pain
Hi Badger, pleased my suggestion is praps helping. I didn't realize it might help pain - I can only find 2, Ann Swanson and Susie McCarthy (Inner Balm), for that, or is there more? I still use it regularly to substitute or incite sleep, and prefer Ally Boothroyd.
 

Badger

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Apr 2, 2021
Messages
91
Hi Badger, pleased my suggestion is praps helping. I didn't realize it might help pain - I can only find 2, Ann Swanson and Susie McCarthy (Inner Balm), for that, or is there more? I still use it regularly to substitute or incite sleep, and prefer Ally Boothroyd.
The one I've been using is by Ann Swanson, it's 30mins and begins with her speaking about chronic pain. I'll search for Ally Boothroyd, a Paul McKenna sleep hypnosis YouTube also helps
 

Trying

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Jan 10, 2022
Messages
7
Thank you for so many replies! I like yoga nidra but never thought of it for pain! Sounds interesting. My therapist said bio feedback would be helpful however its very hard to find someone practice it.
I'm tempted to try accupuncture but hope my insurance pays for it. I wonder if there is a connection between epilepsy and fibromaligia if its from the same part of my brain? What do you people think? I may ask my numerologist. Its been hurting so much today one side of my body. Does it effect how you sleep? Ill start a new thread on that.
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
908
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I wonder if there is a connection between epilepsy and fibromaligia if its from the same part of my brain? What do you people think? I may ask my numerologist. Its been hurting so much today one side of my body. Does it effect how you sleep? Ill start a new thread on that.
Hi - I'm not sure why you've come to think epilepsy & fibromyalgia come from the same part of the brain?
Even pain docs & neurologists don't quite assume fibromyalgia comes from the brain, some think it comes from the central nervous system, but that also involves the spine and the transfer of pain to the brain. And these hypotheses are shared in that area, whilst others think it's autoimmune, and there are many more hypotheses, maybe all or mostly partly right.
My focal seizures are caused by cortex in the speech centre and had that long before fibro.
And I'm not sure I know anyone with FM who also has epilepsy or the other way round to that matter.

Yeah, of course pain can disturb sleep - however even after I got all my local pains down I still couldn't sleep much more, it was just a better, less tedious night. And I can sleep fairly well even with pain. So I believe the sleep problems are independent of pain, at least for me.
 
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