It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Fibromyalgia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-17-2012, 07:06 PM   #1
Junior Member
(female)
 
Join Date: Mar 2010
Posts: 35
sylviasix HB User
Neurofeedback?

Hi there!

I was curious if anyone else here has had Neurofeedback for fibromyalgia or CFS? If so can you please tell me your experience.

I have had 5 sessions. Of course I thought that for sure this would help. I read many good things about it but not necessarily for fibro and CFS. I finally received disability and used a good portion of my back pay to pay for t his treatment. I was looking forward to the day where I could afford this treatment. Not only don't I feel better but many of my symptoms that I was no longer experiencing have returned. I am in tears over this! I was told to keep coming because the adverse effects would go away. I expressed how poorly I was feeling and they finally said that after this many sessions the adverse symptoms should be gone. I have now been off of the Neurofeedback for two weeks and I still feel just awful!!! I was extremely tired before but this has taken it to another level! I am so irritable and anxious and am feeling pain in places I haven't felt pain in for years. I am supposed to visit my best friend in Florida over the Memorial Day weekend and now I am terrified about going!! Please beware if you are thinking about it. I don't want anyone to feel like I am feeling! I have a family to take care of and there have been times in my almost 9 years of being sick where I wasn't able to but I never ever thought it would come from treatment!

If you had this and had adverse effects can you tell me if they will go away?

Thanks for your help!

 
The following user gives a hug of support to sylviasix:
Vocrinthedes (05-19-2012)
Sponsors Lightbulb
   
Old 05-18-2012, 06:57 AM   #2
Facilitator
(female)
 
bluelakelady's Avatar
 
Join Date: Sep 2004
Location: blue lakes, northern california
Posts: 5,461
bluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB User
Re: Neurofeedback?

hi,
sorry to hear you had such a bad time and spent all that money. bummer. i never tried that but i did try acupuncture and it was not fun at all. first 2 times were good, 3rd time undid me for weeks. that did get better. neurofeedback is one i don't remember seeing here. thanks for the info.
i wish you the best in finding some comfort.
peace,
bluelakelady

 
The following user gives a hug of support to bluelakelady:
sylviasix (05-19-2012)
The Following User Says Thank You to bluelakelady For This Useful Post:
sylviasix (05-19-2012)
Old 05-18-2012, 08:42 PM   #3
Junior Member
(female)
 
Join Date: Mar 2010
Posts: 35
sylviasix HB User
Re: Neurofeedback?

Quote:
Originally Posted by bluelakelady View Post
hi,
sorry to hear you had such a bad time and spent all that money. bummer. i never tried that but i did try acupuncture and it was not fun at all. first 2 times were good, 3rd time undid me for weeks. that did get better. neurofeedback is one i don't remember seeing here. thanks for the info.
i wish you the best in finding some comfort.
peace,
bluelakelady
Thanks Bluelakelady! You are a wealth of information! We are so lucky to have you on health boards! Many hugs!

 
The following user gives a hug of support to sylviasix:
bluelakelady (05-19-2012)
Old 05-19-2012, 06:23 AM   #4
Newbie
(female)
 
Join Date: May 2012
Location: Brooklet, Ga Bulloch County
Posts: 6
Oaldon HB User
Re: Neurofeedback?

Hey..I am a licensed Massage Therapist and I work on many people with fibro..massage helps so much. we hold toxin and lactic acids in our muscles and when you get them massaged they are released into our system, so you have to drink MUCH water to rid them out of your pours and system. also, I tell my clients if you will get a big bag of epsoms salts and pour the entire bag into one bath and soak at long as you can at least 30 to 45 mins...it draws toxins out of your system as well as loosen your muscles this is great to do after a massage but great to do regardless of having a massage, especially for sufferers of fibro. do as much stretching as possible like yoga for instance...the magnese and magnesium in the epsoms salts draws things out of our system. so please if you can give that a try also. and please also, book an appt with a massage therapists. and never ever get on a LMT's table and if the pressure is too much not say anything..always speak up...if its too much pressure or too less pressure say so, we are to help our clients and listen to them. God Bless You!!!!

 
The following user gives a hug of support to Oaldon:
sylviasix (05-19-2012)
The Following User Says Thank You to Oaldon For This Useful Post:
sylviasix (05-19-2012)
Old 05-19-2012, 06:29 AM   #5
Facilitator
(female)
 
bluelakelady's Avatar
 
Join Date: Sep 2004
Location: blue lakes, northern california
Posts: 5,461
bluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB User
Re: Neurofeedback?

massage is amazing. i have them every week and have for close to 2 years now. good input! thanks for posting. mine have a sliding scale of payment. a good thing to ask about when you are looking for someone. also very good to point out we need to communicate what hurts and what helps.
peace,
blue

 
The Following User Says Thank You to bluelakelady For This Useful Post:
Oaldon (05-20-2012)
Old 05-19-2012, 08:14 AM   #6
Inactive
(male)
 
Join Date: May 2010
Location: North America
Posts: 66
Vocrinthedes HB UserVocrinthedes HB UserVocrinthedes HB UserVocrinthedes HB User
Re: Neurofeedback?

Quote:
Originally Posted by sylviasix View Post
I have had 5 sessions. Of course I thought that for sure this would help. I read many good things about it but not necessarily for fibro and CFS. I finally received disability and used a good portion of my back pay to pay for this treatment. I was looking forward to the day where I could afford this treatment. Not only don't I feel better but many of my symptoms that I was no longer experiencing have returned. I am in tears over this! I was told to keep coming because the adverse effects would go away. I expressed how poorly I was feeling and they finally said that after this many sessions the adverse symptoms should be gone.
Wow, this describes my recent experience with a highly-recommended, well-established chiropractor. With every treatment, I felt worse, until I suddenly developed excruciating sciatica radiating from the lower spine (where he was focusing the vertabral adjustments), making my entire right buttock feel like I'd been struck very hard with a steel pipe, with pain shooting down my leg to my foot. I could hardly walk; I was hobbling around like an old man in search of a cane, when I had been walking just fine when I first started treatment. My BP also stayed abnormally high, despite my regular BP meds. I had never had sciatica before in my life, but he kept telling me further treatment would help. Further treatment for a new and painful affliction his current treatment had apparently caused?? (Which really reminds me of your experience.) No way, in my opinion.

So I went to my MD, who felt major inflammation had been induced in my lower spine and gave me a cortisone shot. In a couple of days the pain was gone. Unfortunately, cortisone also seems to worsen my depression (which I think bottomed out yesterday, I was so down), but at least I could sleep without the piercing pain.

My point is that I sometimes wonder if perhaps a few practitioners (of any kind) want to prolong your treatment for their own benefit (if you get my drift), even when they see that you're worsening, not improving, under their therapy. I had a cognitive therapist try to have me sit with with her and her dying dog at her home when I was struggling to pull out of deep grief over the death of a beloved cat I'd had for twenty years. As sensitive as she knew I was to the death of pets, that would have traumatized me and completely undone me emotionally. I stopped going to her immediately.

I too have taken biofeedback for my lifelong fibromyalgia
, and it did nothing to help me. If it is making your symptoms worse, I would question the notion that it was beneficial at all for you. I was told that it would have some immediately positive result if it worked. It did not.

But I did feel stressed by the feedback sessions. Any extra stress can provoke FM.

Just FYI, I have a brain wave device myself, and experimentally I have induced extra anxiety, tension and pain by using high beta waves. The few positive results I have had involved emphasizing SMR and low delta waves.

I believe that fibromyalgia is chronic (likely physical) damage to the whole nervous system, and biofeedback is a partial treatment at best, if at all. Can biofeedback cure diabetes, arthritis, Parkinson's? From my decades of suffering with FM, I agree that good, sensitive massage therapy is probably the best relief (but not cure) for FM symptoms, followed by comfortably hot epsom salt baths. Also, minimal stress, healthy diet, and moderate exercise.

Vocrin

PS: Regarding "healthy diet", I have to limit acidy foods (e.g. tomatoes, lemons) and cow's milk products (goat's milk not as bad), both guaranteed to increase my bodily pain. Just a little bicarbonate of soda at night helps, too.

 
The Following User Says Thank You to Vocrinthedes For This Useful Post:
sylviasix (05-19-2012)
Old 05-19-2012, 02:30 PM   #7
Inactive
(male)
 
Join Date: May 2010
Location: North America
Posts: 66
Vocrinthedes HB UserVocrinthedes HB UserVocrinthedes HB UserVocrinthedes HB User
Re: Neurofeedback?

Sylvia, I agree with Rhaquel! Try to go see your friend! Getting away from all the things that may trigger stress and just enjoying long conversations with a friend can really lessen my FM...and possibly yours, too! Also, I think Rhaquel's further advice about family is very wise.

Rhaquel, my experience with the therapist and her dying dog has shocked a number of people, but it's absolutely true. Like you, I have many "stupid therapist stories" - I plan to write a book about them. I told an old retired psychology professor that I thought most of them needed therapy far more than I did, and he gravely answered, "That's a very wise observation. That's why many of them enter this field."

R., that info about kindling is very interesing...but disconcerting. I know about kindling in regards to alcohol and benzodiazepines - each total withdrawal makes the next withdrawal more intense - I've actually experienced this. But to think that even fibromyalgia and depression, both of which I have frequently, can be kindled seems to explain why I fall into each one so easily now. I'm getting more vulnerable every time?...super bummer.

But Sylvia, it seems clear to me you really should not pursue biofeedback, no matter what. Do try massage and good understanding friends.

Vocrin

Last edited by Vocrinthedes; 05-19-2012 at 05:24 PM.

 
Old 05-19-2012, 03:46 PM   #8
Junior Member
(female)
 
Join Date: Mar 2010
Posts: 35
sylviasix HB User
Re: Neurofeedback?

For some reason I am not able to send hugs and thanks. The tabs are not there. In any case, I wanted to thank you all so much for your input and I am definately going to see my friend!

Many, many hugs to you!!

Of course after I posted this the tabs came up for hugs and thanks. That is why I am editing this post. LOL

Last edited by sylviasix; 05-19-2012 at 03:52 PM. Reason: The tabs are now showing for giving hugs and thanks.

 
Closed Thread

Tags
cfs. chronic fatigue, neurofeedback



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Ambien
Cymbalta
Effexor
Elavil
Flexeril
  Neurontin
Percocet
Tylenol
Ultram
Vicodin




TOP THANKED CONTRIBUTORS



bluelakelady (366), WoodsWalker (132), thefarm (111), Glojer (103), tooolgrl (94), biogirl71 (88), janewhite1 (85), kirstee (60), monalisa24 (55), caribear (41)

Site Wide Totals

teteri66 (1165), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 11:25 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!