How I am beating Fibromyalgia

I wonder if this would help with Sjogrens and polyneuropathy.
(Mine manifests like MS). I'll have to dig more into it.

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

Have you tryed marijuana? If you do I would go with a vaporizer no harmful smoke, I have spinabifiada and marijuana saved me.

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!

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

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!

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!

reply to post by OkieDokie


What exactly were YOUR fibro symptoms?

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.

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.

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

Just thought I'd pop in the thread and ask how you're doing with your treatment ?
I am type 1 diabetic with diabetic neuropathy ( fourteen years ) and was diagnosed with FM last year.
I'm just on the final 2 weeks of being weened off OxyContin so I'm looking for an alternative.

a reply to: OkieDokie

lyrica never did agree with me.
i had to cold turkey off of it after about a year and was terrible.
worse than coming off opiates for me. by far

never gonna take lyrica again

a reply to: Deadscreameyes

i gained a bunch of weight too.
it was neurontin first then lyrica.
another member mentioned cymbalta. i was on that too.

none of them agreed with me.
i was also taking roxicodone. this was all right after my surgery and i was just zoned out.

went through several different combinations of pills over the last 3 years.
all i take now is vicodin. still in pain all the time but it is tolerable.
no weight fluctuations. no constipation issues. no loss of apetite.

probably about the best i can hope for. the one side effect that bother me is i am so damn thirsty all the time.

i am strict with my pills though. i am allowed 4 per day and i never go over that. sometimes less.

originally posted by: rickymouse
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.

where do people get this BS.
Calcifediol calcidiol are also known as vitamin D₃ have nothing to do with fibromyalgia.

yes you will get calcifying of tissues if you take 50,000+ international units (IU) a day of vitamin D for several months as that is a toxic dose or you have Sarcoidosis and take lower amounts of Vit because the granulomas make Vit D.

originally posted by: ANNED

originally posted by: rickymouse
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.

where do people get this BS.
Calcifediol calcidiol are also known as vitamin D₃ have nothing to do with fibromyalgia.

yes you will get calcifying of tissues if you take 50,000+ international units (IU) a day of vitamin D for several months as that is a toxic dose or you have Sarcoidosis and take lower amounts of Vit because the granulomas make Vit D.

Calcidiol is not Vitamin D3. It is what vitamin D3 turns to once it is processed by the sunlight. It is a hormone, not the vitamin D3 that people supplement. Some people can't create enough of the enzyme to process D3 for a couple of reasons. Calcidiol actually activates the cells to do what it is supposed to do, if you get too much D3 it attaches to the cells and actually turns off the process because it is not properly prepared to do the job.

Now this is the active hormone. www.drugs.com... It will calcify soft tissue. Here is another article, note that it says that calcitriol is the bioactive form of vitamin D. This also explains a little of what I am saying, but this is just one of probably a hundred I have read on the hormone and where it is found. The form in potatoes and some other nightingshades does not require sunlight and it also does not require possible misformed or deficient enzymes to be activated. www.vivo.colostate.edu...

You can have lack of sunlight, problems in the liver, and also problems in the kidneys and you won't be able to process D3 correctly. Also genetics can influence it, the vdr gene snps or something like that

Granulomas don't make vitamin D. I don't know where you get that from.

The article I linked in the first thread says that it can make Fibromialgia worse, didn't you read it, it is real evidence. The evidence I usually look at is real evidence.

originally posted by: rickymouse

originally posted by: ANNED

originally posted by: rickymouse
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.

where do people get this BS.
Calcifediol calcidiol are also known as vitamin D₃ have nothing to do with fibromyalgia.

yes you will get calcifying of tissues if you take 50,000+ international units (IU) a day of vitamin D for several months as that is a toxic dose or you have Sarcoidosis and take lower amounts of Vit because the granulomas make Vit D.

Granulomas don't make vitamin D. I don't know where you get that from.

Sarcoidosis granulomas DO MAKE Vit D.
www.ncbi.nlm.nih.gov...
www.ncbi.nlm.nih.gov...

Sarcoidosis always results in dysregulated vitamin D metabolism and abnormally high levels of dihydoxyvitamin-1,25-D (hypervitaminosis-D), a powerful hormone because 1,25-D is secreted by the inflammatory macrophages that make up the granulomas.

A diagnosis of this systemic Th1 inflammation due to sarcoidosis can be made with a simple blood test for 1,25-D.

www.vitamindcouncil.org...#

I have sarcoidosis and know the disorder first hand

Here is my wife's story. When she was three months pregnant, my wife started getting pains in her hands and feet. Mild at first, but got to the point where she could not walk because of the pain in her feet.

The burning pain in her hands were so bad, I had to freeze bottled water so she could hold go doith the burning pain.

I started looking online for women with the same symptoms, but could find none.

We went up the hospital a couple of times, but they did not know what was wrong and just sent us home.

The pain was 24/7 and of course we were worried about the baby.

I done more research and came across
Fibromyalgia. It seemed to fit the symptoms my wife was having, so we went to the rheumatoid arthritis doctor. I told him about Fibromyalgia, and he said it was not that.

At this point it was so bad. My wife was not sleeping because of the pain. She could not walk. I had to was her, feed her, everything. And no one could do anything.

It got so bad, I rang an ambulance. One we got to the hospital I said we are not leaving until you find out what is wrong. They gave my wife tremadol for the pain and morphin. Of course this worried us like hell because of our baby.

In the end, they had to get a specialist from London to come and see my wife.

He diagnosed my wife with Fibromyalgia. He said he had never seen a case where a woman got it while pregnant, so he said the condition might be permanent, or go after the pregnancy.

He prescribed my wife with gabapentin.

It got to about seven months, and the condition started to go. The last two months she was back to normal and enjoyed the rest of the pregnancy. She even stopped taking the MED's.

Of course we were worried about the effects this would have on our baby.

Our daughter was born beautiful and healthy. She will be four in two weeks.

My wife's condition never came back so it seems the condition was brought on by the 2nd trimester.

It's such a horrible condition that not many people know about, and I would not wish it on anyone.

We will not have anymore children, just in case the same thing happens, and we won't be so lucky this time.

My daughter is a little miracle

P's sorry for any mistakes. I wrote this on my mobile

originally posted by: ANNED

originally posted by: rickymouse

originally posted by: ANNED

originally posted by: rickymouse
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.

where do people get this BS.
Calcifediol calcidiol are also known as vitamin D₃ have nothing to do with fibromyalgia.

yes you will get calcifying of tissues if you take 50,000+ international units (IU) a day of vitamin D for several months as that is a toxic dose or you have Sarcoidosis and take lower amounts of Vit because the granulomas make Vit D.

Granulomas don't make vitamin D. I don't know where you get that from.

Sarcoidosis granulomas DO MAKE Vit D.
www.ncbi.nlm.nih.gov...
www.ncbi.nlm.nih.gov...

Sarcoidosis always results in dysregulated vitamin D metabolism and abnormally high levels of dihydoxyvitamin-1,25-D (hypervitaminosis-D), a powerful hormone because 1,25-D is secreted by the inflammatory macrophages that make up the granulates.

A diagnosis of this systemic Th1 inflammation due to sarcoidosis can be made with a simple blood test for 1,25-D.

www.vitamindcouncil.org...#

I have sarcoidosis and know the disorder first hand

I like discussing things with people who actually have the disease and have researched it. But the diseases are not incurable if you can figure out what is actually causing it to be pronounced and test if there is a way to cancel out the expression of the disease. This can be accomplished many times by altering food chemistry.

I have the genetics for Spondelitis, my brother is having more problems with it than I did. I was taking a Calcium supplement and it caused me to start building lumps on my bones near the joints. The doctor told me to quit taking it and they went away in two years. My brothers doctor told him to take calcium supplements and I warned him not to but he said he felt better, he was diagnosed with spondelitis a year later with all sort of major bone buildup. They wanted to shut down his immune system but I told him just to quit the Calcium supplements and the bone is slowly diminishing except where it welded his hips to his back. But it is now tolerable and he still has his immune system and is not having too much problems except for fighting off the doctors who want to kill his immune system even though his disease is going into remission and reversing.

Now I also have a friend who was building up gramulomas in his muscles and veins and the doctor told him he should not be eating grapefruit every day. He quit the grapefruit and the gramulomas started to go away. I actually studied that and the grapefruit has chemicals that can cause the buildup of granulomas in the body. It is not surprising that I used to buy my potatoes from the auto part store where this guy worked. They sold bushels of them from a local farmer they knew and the the owner and workers liked potatoes. They contain the active chemical that can cause problems if too high, real butter helps to neutralize it. It only effects some people who cannot properly detox certain chemistries and they get stored in crystal like structures and form granulomas.

Now, I do not seem to have the genetic variants for Sarcoidosis. I just verified this with Promethius and Livewello where I uploaded the data. So I cannot experiment on ways to get rid of the disease on myself.

Try avoiding too many potatoes and other foods containing the bioactive vitamin D chemistry to lower the ability of the body to form granulomas. Also try to avoid foods high in terpines. The turpine chemistry is found in many foods and if you can detox it and utilize it property it is good chemistry. Now there are a lot of different terpine chemistry and I did not evaluate them all. I am sure that a little is not bad for anyone, but if a person ate a lot all the time it could bother them.

But if you do have a lacking enzyme, then they can be a lot more of a problem for you. I can't actually comprehend what they would feel like because I have nothing to compare it to.

I have genes for hyperelasticity but I also eat a lot of foods that contain vitamin d and I do metabolize it better than most people so this means my hyperelasticity is cancelled out by calcium in the tendons. That I know how it feels, x-rays have shown calcified tendons in my back. But it is better than having problems with pinched nerves in the back all the time when I don't eat potatoes. I can't bend much anymore but I haven't thrown out my back in years now. It used to happen almost every other day. So my medicine is your poison. Weird. In my original post you commented on I mentioned that potatoes might not be good for some people with calcifying tendons, but I never thought about them being bad for people with Sarcoidosis Now the waxy potatoes bind some of this chemistry so they might be better than the Russets for you and as I said, vitamin k helps with this.

Medicines either supply needed antidote chemistry or adjust enzyme production or adjust the production of the immune cells. Some chemistry of medicines can go right in the body and disolve certain things, these are usually proteinases. Proteinases are terpines very often like pineapple juice. Bromelaine is both a proteinase and an enzyme. Now, there are four types of terpine like chemicals in grapefruit, but I do not know what kind was causing the problem with my friend, I forgot the name of the one that could do it.

Epsom Salt
You can also use Epsom salt as natural remedies for fibromyalgia as it helps in reducing pain. It contains a magnesium sulfate. Soaking in Epsom salt bath helps in absorbing magnesium in your body.

Take 2 cups of Epsom salt and mix it in a warm water.
Soak your body in the water for 15-200 minutes.
After 20 minutes take a shower with normal water.
Repeat this treatment thrice in a week.
Ginger
As ginger contains anti-inflammatory properties so it helps in reducing the pain and swelling caused by fibromyalgia.

Take few amount grated ginger in a cup of boiling water.
Boil it for about 10 minutes.
Consume this tea 3 times a day.
On other hands, you can also take ginger tablets, but consult your doctor for dosage.

For more information check out the link given below
www.crazyhealthplan.com...