How I am beating Fibromyalgia

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posted on Jan, 27 2013 @ 06:32 AM
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I wonder if this would help with Sjogrens and polyneuropathy.
(Mine manifests like MS). I'll have to dig more into it.




posted on Jan, 28 2013 @ 10:27 AM
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reply to post by FlyersFan
 


I did some searching for you as well and couldn't find anything that says this will help with the polyneuropathy, but I did find a comment on a news site from a person who suffers Sjogrens, FM, and RA.


I was diagnosed with RA, Sjogrens, and fibromyalgia all at the same time 6 yrs ago. It has been a real challenge. I am very active and just recently have added Lupus to the list. I have found a Dr in the area that is treating the cause and not just interested in getting drugs in me. I have found that B12 and B6 injections once a week is a BIG help with my problem. I also take alott of supplements. I started seeing a Upper Cervical Chiropractor on June 6th and I have had one adjustment and have been pain free since then and Im completely off my pain meds. I used to have migraines everyday and I have only had 1 since my adjustment. They are not very widely known yet but they will be. The dr I see is booked up all the time and is adding more days to his schedule. THank You Dr Runyon in Russell, KY.
Source

So it seems like the Upper Cervical helped them along with taking supplements. It might be worth a shot in your case. I am going in to my Doc tomorrow and plan on asking him a lot of question that have come up in this thread so I might have a better answer for you tomorrow. Good luck in your search and I hope you get some relief soon!

~OkieDokie



posted on Feb, 15 2013 @ 09:35 PM
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Have you tryed marijuana? If you do I would go with a vaporizer no harmful smoke, I have spinabifiada and marijuana saved me.
edit on 15-2-2013 by grimreefer703 because: (no reason given)



posted on Feb, 16 2013 @ 11:51 AM
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reply to post by OkieDokie
 


Hey there, I just wanted to update because I FINALLY had my trial Spinal Cord Stimulator done this week!! I almost wanted to start a thread, but didn't know if anyone would find it interesting, on my experience so far. It has been a HUGE success! I bet there are people on here who would think me crazy for putting something like this in my body, but after 10 years of this crap, and the last two years progressing with my RSD and driving me nuts, and exhausting most other options.. I had to try it.

It really REALLY was a success! The procedure itself wasn't that bad at all. I have been to that surgical center 12 times this year for procedures, and I have a really good relationship with the Anesthesiologists and nurses. They even hugged me before going into the OR LOL They knew I was really nervous this time, because I would have to be awake instead of being asleep like usual when I have nerve blocks done. When we discussed the being awake part, I pulse rate shot up to 131, my face was beat red, I felt nauseous. But they really made me feel calm, and my doctor is absolutely wonderful, and I felt like "If I trust them when I'm asleep, I can trust them when I'm awake".

She actually did end up putting me under for a bit because it took A LOT of tries for my doctor to get into my spinal space, because I don't have much. So I felt this crunching pressure feeling in my spine, and while it wasn't painful, it creeped me out! And the Anesthesiologist could tell, so she put me under. They woke me up when everything was in place, so I could let the rep from Medtronic (The company that makes the SCS we were using) when I began to felt the stimulation in the right place, my foot. Once we got it into my foot, I was put back under while my doctor placed everything and woke up as they were taping everything down. I found out it took an hour and ten minutes, instead of the 45 minutes they expected it to take, because it took about 10 tries to get into my spinal space. They also warned me I would be in more pain than most, but.. I wasn't. I actually have had no pain in my back. Even less than a regular sympathetic nerve block!

In recovery, when the rep turned the SCS on for the first time... I almost cried. My toes uncurled and straightened out. My foot came out of its clawed position. The redness diminished. The temperature even raised. And best of all, I wasn't noticing the burning pain. She ran to get my doctor because she was so excited haha. I only experienced a really awful pain for about 2 seconds when I tried to sit up the first time, and it was such a strange pain that it brought me to tears. They wanted to give me pain medication, but I told them it was okay, I just needed to get my bearings. I was fine after that. The rep gave me 5 different programs, I told her I build computers and am good with technology, so she didn't have to worry about me not understanding how to work the stimulator. Each one controls different leads.

It's just the coolest thing. You can raise the stimulation, lower it.. you can even change the "type" of stimulation, from a constant vibration type of feeling, to a pulsating one.

I walked around the block without my cane for the first time in 7 years. SEVEN years. I was able to stand up on both feet, no support, for 20 minutes without getting the stinging prickling pain in my bad foot. It was just incredible!! Unfortunately, since this is just a trial, the leads are not anchored in. So just a millimeter of movement of them will shift them and screw everything up. I was told not to bend, twist, lift anything above 5 pounds. Also can't shower while it's in, since the wires are sticking out of my back (Though they are covered with a ton of bandages and tape). Well, I sat up in a strange way Thursday night (After about 28 hours of having it in) and I knew right away I did something bad. I got a horrible pressure in my lower left back and then the stimulation only zapped my spine, not my leg or foot. So I turned it off and unplugged it.

With the permanent, it is anchored in place so that the leads won't move like that. And even though it's called a "permanent implant", it can be taken out. I also wouldn't have the paddle leads, which involve needing a laminectomy, so it's still considered minimally invasive. I honestly don't care if it's invasive, because this can give me my life back! Back to school, back to work, wearing socks again on my feet, wearing normal shoes! Monday I am having it removed (Very easy and quick to do) and we will start with getting the permanent approved.

Also, the lumbar MRI I had on Monday (My doctor needed one of my back before he went in) showed some scary things. I apparently have a large cyst on my right kidney, If not for the MRI, I never would have known!



posted on Feb, 16 2013 @ 01:51 PM
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reply to post by Deadscreameyes
 


Wow! Thanks for the update! That sounds like it is going to be great for you once you get the permanent one placed. I am so excited for you, knowing full well how much of a difference being pain free makes in ones life. I will definitely be telling my FIL about your success with this. So what are they going to do about the cyst they found? Is it any worry?

~OkieDokie



posted on Feb, 16 2013 @ 02:09 PM
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reply to post by OkieDokie
 


I actually can't believe the amount of things that came up on this MRI. I never have had any back pain or back issues, or even discomfort, and I bounce back from procedures in my spine very quickly.. Yet, my MRI shows bulging discs of L1-L2, L2-L3, L3-L4. Then herniated discs at L4-L5 and L5-S1, along with an annular radial tear of one of them. And then some curving of the spine. But this is all probably from being so off balance, and favoring my left side... which I will be doing a lot of PT to try and fix, once I heal from the permanent! All of those issues are not very bad, and my doctor is both an osteopath and a spine specialist. He told me it's nothing to worry about, and since I have absolutely no back pain or anything else aside from my RSD, that I shouldn't even worry about it. And they seem to be pretty minor. I think that with PT and exercise, and getting my posture and balance back, that we will be able to really correct my spine. There was also loss of hydration to one of the herniated discs. Amazing that I have no back pain, even after getting what I guess you could think of as 10 or 12 epidurals (My doctor trying to get into the exactly correct spot to place the leads on Wednesday), I have no back pain. I'm not complaining though LOL

But the cyst.. It says it's about 6.3cm, which they said was large, and seems to have simple features.. which would be good. I contacted my primary care doctor right away, I was freaking out when I read the report. I seriously was like "What if I have cancer!? Oh my GOD!". He told me not to freak out about it, that most people have cysts in their body, and that since I have no kidney problems or symptoms, to not let it worry me. But we are setting up a sonogram of it, just to make sure... then we'll know. Along with blood and urine labwork, to check them out.

The one thing that made me feel better is that my two Aunts both contacted me after I was freaking out about it. They told me that both of them, and their father/my late Grandpa, all have/had Polycystic Kidney Disease (And it's hereditary). They told me our whole family has kidney cysts, a ton of them, and that it's okay.. it's not life-threatening. Even Grandpa had a lot of them, but he ended up losing his life to colon cancer.. his kidneys were fine. So that made me feel a lot better, and I am praying that that's all it is. I almost threw up when I found out about this, and it was the afternoon before my SCS trial! Suffice to say, this has been a roller coaster week!



posted on Sep, 1 2013 @ 05:56 PM
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reply to post by OkieDokie
Sorry to be so tardy in my follow-up but I guess better late than never. At any rate, I have been going to a NUCCA practitioner since January and am really amazed at the results. I was having numbness in both hands which had advanced to numbness up to both elbows. Sometimes I could do neck stretches and get it to go away but it was becoming more difficult and returning more quickly. I'm happy to report that I no longer have any numbness and that the misalignments that my traditional chiropractor would fix are no longer a problem either. This is truly amazing! Another cool thing is that I only have to go every 3 weeks. I was going every 2 weeks and could have gone weekly to the traditional chiropractor. Thank you so much for sharing your experience, NUCCA has been a god-send to me!

 



posted on Nov, 11 2013 @ 11:45 PM
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reply to post by OkieDokie
 


What exactly were YOUR fibro symptoms?



posted on Jan, 17 2014 @ 10:43 PM
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Here is a article addressing a possible treatment for fibromyalgia. www.sciencedaily.com...

I noticed a chemical used to treat this...Calcifediol (also known as calcidiol. This is one of the supposedly troublesome chemicals in potatoes. It can lead to calcifying of tissues. Now the companion food for the potato to neutralize the tissue calcification is vitamin K2 or just add butter or some real animal fats. So I don't know if the neutralizing of the calcidiol effect on tissues will stop it's effect on the fibromyalgia, but I assume it doesn't because eating a baked potato actually takes away pain, and I drown it in butter.

I try to identify where emerging drugs are found in nature. I wouldn't overeat potatoes though, because if you have too much of this in the body it can cause bone spurs if you consume a lot of calcium. They fail to tell people the side effects in the article.



posted on Jan, 17 2014 @ 11:19 PM
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abeverage

Originally posted by ANNED
first fibromyalgia is a number of disorders.

that is why its so hard to treat.



Are you male?


yes
Men have a number of disorders from working and injuries not seen in many females.
Then you have military that can be a occupational cause.

On the site i go to men with fibro we have a larger then normal number of veterans and firefightrs/EMTs
yes i believe in a virus causing fibro ether as a primary cause or as a cause of a autoimmune disorder with fibro as secondary disorder.
edit on 17-1-2014 by ANNED because: (no reason given)



posted on Jan, 18 2014 @ 06:39 AM
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Just a very quick post to update...I talked to a therapist recently who put me on a strict gluten free diet, along with avoiding nightshade vegetables, particularly potatoes, and although I'm still not totally pain free, I'm vastly better. This includes my sleep pattern, and I now recognise "potato nightmares", and the effect that tomatoes have on me. I used to cook with these all the time....no wonder I was in such pain. I'm kinda rubbish at the gluten free bit, but making an effort, but it's the least of the problems, I've found. I am aiming to be totally gluten free.

Here's a link to get you started...back later..busy busy!


Nightshades and fibro





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