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CATHWREN's Photo CATHWREN SparkPoints: (55,019)
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10/2/13 6:03 P

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"But I have had infections and been on any number of antibiotics over the years, and it has never made a difference with my fibro symptoms. My ..."

I was on antibiotics for several months a few years ago and at the end of 3 months I was pain free. But it didn't last; I only felt good for about a month before symptoms came back. But it was amazing while it lasted.

Dr Teitlebaum advocates for long term, broad spectrum antibiotics but it is hard to get a doctor to prescribe antibiotics for longer than about 10 days. Dr T says 6 months to get the benefit.

)O( )O( )O( )O(
CathWren


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,823
10/2/13 5:05 P

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The PT who told you it's "just your brain sending pain signals, no big deal" ...doesn't know what they're talking about! Your brain isn't sending the signals, it is the nerves in your body sending signals to the brain and the brain "interprets" it as pain (when it is and when it isn't!) and reacts accordingly with inflammation etc.

And it's no joke, and though I would not wish it on anyone, I do wish people like that could try it out for a short time, and see just how real it IS! I don't get mad all that easy, but this kind of attitude makes me SO MAD! emoticon

We live in the bodies with this problem. I wish we could somehow let them try it and see if they like people telling them it's "No big deal"! And I'm glad you're getting a different PT, maybe it will be someone with a bit more knowledge--and compassion!
And I hope you find some relief...

As for the idea that antibiotics and nutrition help... the nutrition, for some, no cure but yes, it can assist.

But I have had infections and been on any number of antibiotics over the years, and it has never made a difference with my fibro symptoms. My thoughts are that it may well be a scam--or it worked for someone with the symptoms that didn't actually HAVE fibro. If it really works, why isn't everyone with fibro shouting it from the rooftops?--and why isn't it in medical journals? and why don'tt more doctors know about it than what's in just one book?...
Food for thought...

emoticon Kathy

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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CAROLIAN's Photo CAROLIAN SparkPoints: (107,000)
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9/28/13 1:06 P

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emoticon Welcome back
I use one of those grain bag shoulder bags that u heat in the microwave mine has lavender in it helps me

My name is Carol I live in UK Leader of DISABLED/FIBROMYALGIA & MORE
Northern English Lassess
Northwest England
Co Leader Fibro Friends
Fighting Fibromyalgia
FMS support


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WELDER43's Photo WELDER43 SparkPoints: (154,238)
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9/27/13 12:52 P

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emoticon

Edited by: WELDER43 at: 9/27/2013 (12:53)
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MEG-NATALIA07's Photo MEG-NATALIA07 Posts: 679
9/26/13 4:05 P

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Tiggy - I find epsom salt baths relaxing and helpful for when my back/neck is knotting up. I may not totally release the tenseness, but it helps everything relax and let go more for me.

GRACE. BEAUTY. LAUGHTER. REST. COMPASSION. GOOD FOOD.


I love to cook and bake. I have compiled hundreds of recipes on Pinterest: Crowd pleasers: Traditional & Lightened versions of timeless favorites, as well as: gluten free, vegan, Paleo & Grain-Free... and a ton of Scones and desserts.
pinterest.com/willdance4joy/


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TIGGY6209's Photo TIGGY6209 Posts: 523
9/26/13 10:53 A

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Hi,

Thanks Everyone. I did see the same PT yesterday and I think she gets it now after touching me. The things she had me do were too easy. I stretch everyday so I have great range of motion. I get really bad headaches sometimes and land in bed and my muscles all tense up. As soon as the headache eases up it's right back to stretching. I know if I don't do this I won't be able to drive. I don't have anyone to drive me and there is no public transportation where I live. I get a different therapist next week who supposedly knows more about fibro. They are keeping me out of the water for 2 weeks, then I start aquatic therapy. The PT is inside of a huge local gym and I look at all the machines and all the people and it is overwhelming. I see people moving around normally, having no idea about fibro and how it changes everything in your body.

I have this problem with a lot of doctors. They seem afraid to touch me like I have some communicable disease and they might catch it if they touch me. I also keep info on all my treatments, medications etc. that I have tried on my computer & have been very involved in my treatment and it does intimidate doctors. But with brain fog (and I was an accountant) I need to keep track of everything. Once I got it set up it is really easy to maintain. I also get copies of lab tests and MRI results too and keep the paper stuff in a binder.

It's good to hear that someone else did the nerve ablation and had no problems. That's what I need is objective information from someone who did it and to know that it worked and they were happy with the results.

Does anyone know how you can get rid of the knots. Massaging them just hurts the part of your body you are using to massage the knot. I do have a theracane, but I feel like it would take a million years to make them go away using the theracane. I have a tens unit too and that doesn't help either. I have actually asked doctors to just cut them out so I can get rid of them, but they tell me it would make things worse. I know dry needling by an acupuncturist would help if I could find one who knows how to do it, health insurance doesn't cover acupuncture so it would be really expensive. I have to put that on my list and start calling acupuncturists and see how many sessions it would take. It took months of PT a long time ago to get rid of one knot in my shoulder.

Thanks for the support. I am going to buy the book and see what it says. I think when I search online for this author and the title of the book more should come up than just where you can buy it. There should be some information out there giving statistical information on how many people have actually used this doctor's protocol. If I can't find more info on this treatment other than one chapter in his book then I am definitely going to pass on this one until there is more info out there. I have been a medical experiment like everyone else here and am more skeptical now about what I let doctors do to me.

I hope you all have a good day today. I will definitely start getting on Sparks more. I have some other things I have found that might be of interest and I know there is a lot of good information on Sparks. It's good to be back.

Take Care,
Karen



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9/24/13 9:44 P

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Hi Karen and welcome back. I don't believe your PT said that to you!! Your muscles ARE involved and your massage therapist is right. The nerves make the muscle knot up and cause a lot of pain but massage does help if you find the right one who knows how to work with FM clients. I have not heard of the other items you wrote about so can't address them. I work with meds and massage to keep walking. Good luck!!

Eileen

Slow & steady makes a winner of us. Even if we hit pitfalls, get up. Know that a new day is right around the corner.
Try to be all that you can be. Work at it a day at a time.

"Be not afraid of going slow; be afraid if standing still" (Chinese Proverb)

With God all things are possible.

If you have the courage to begin, you have the courage to succeed.
~ David Viscott

MN. Sparks Fat Kickers Team Leader www.sparkpeople.com/myspark/


 
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CAROLHARMON's Photo CAROLHARMON Posts: 346
9/24/13 3:54 P

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Hi Karen, welcome back. I don't know much about some of the stuff you wrote about but I do know the burning of the nerves is not so bad. My brother and sister-in-law both have had this done and have said that it is the best thing they could have done. They have had no infection or bruising or any other problems. Their Dr. only does so much each time in order to make sure they hit the right nerve. Good luck to you. emoticon

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CATHWREN's Photo CATHWREN SparkPoints: (55,019)
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9/24/13 3:40 P

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Your PT is nuts. Even if the muscle tightness isn't from fibro, if you are too unwell to exercise to soften those muscles, they'll be tight.

You should get a different PT if your insurance will let you.

)O( )O( )O( )O(
CathWren


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TIGGY6209's Photo TIGGY6209 Posts: 523
9/24/13 3:22 P

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Hi Everyone,

I haven't been on for a long time. I had a problem working on the computer for any length of time because neck pain led to arm pain which lead to wrist and hand pain & my shoulders wouldn't go near a computer.

I have heard about a couple things lately related to treatment of fibromyalgia & chronic myofascial pain. Has anyone heard of or tried a method that a Dr. David Brownstein came up with. Apparently, a chapter is included in his book available online. I haven't read it, but have been told he believes that fibro is not an illness, it's a bacteria and can be cured with antibiotics, hormones and nutritional supplements like Selenium. It's a holistic method of treatment and my pain doctor told me she could use this treatment on me, I wouldn't have to search the world for a holistic doctor who knows the protocol. I would like to know if anyone has tried this or if it's another way to get your money and leave you in more pain and more depressed than before you started.

The other thing is, fibro always seems to hit me the worst in my neck and shoulders. It took me years to find a pain doctor that I could drive myself to and who would actually consider treating a patient with fibro, but I finally found one and she has been giving me trigger point injections, subscapular injections, and is now talking about root nerve ablation. With nerve ablation they actually burn the root of the nerve in your spine so it stops sending pain signals to your brain. It can work for a short time or could last as long as 12-18 months. I am a bit hesitant about this because I don't know anyone who has had this done and if there are risks that I should know about. A long time ago, a pain consultant told me never to do this because it would leave scar tissue and make things worse (unfortunately he retire so I can't call him). The pain doctor I am seeing now says there is really no risk except for the usual minor risks of bruising, some pain and minor infection. Does anyone know about this one.

The pain doctor sent me to PT too and I didn't get off to a good start. The head PT said fibro is just your brain sending pain signals. No big deal. I told her my muscles were really tight (as I have been told by many massage therapists & live with everyday), she said no way my muscles are tight. Did I miss something and muscle knots, tight bands of muscles, and just really deep down aching muscles are no longer from fibro.

I would greatly appreciate anyone's input. I think I need to get back on Sparks and stay in touch with all of you. I didn't stop fighting the fibro, but did stop trying to keep the house clean, doing all the shopping every week, cooking dinner every night etc.

I hope everyone is doing okay and am sorry I lost touch.

Karen

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