Another lesson learned

[mshistory]

I know it's been said so many times on here that we tend to blame all of our problems on SjS and I was definitely in that mindset. I knew my rheumatologist had mentioned something about fibromyalgia last year, but not knowing much about it, I pushed it to the back of my mind and didn't give it much thought. I spent over an hour today talking to my rheumatologist and finally understood what fibromyalgia is and what its symptoms are and realized how much it actually described me. I just read a description of the fatigue associated with fibromyalgia and how sleep disturbances are so common with it and had my aha moment - I've complained for two decades that I didn't get restorative sleep and have been convinced that I have a sleep disorder (I was temporarily treated for restless leg syndrome, but that treatment didn't help). Unfortunately, it doesn't seem like there's much we can do about it, but at least I have an explanation for the way I feel.

So...moral of the story (that you all know anyway)... it's important to have each medical issue evaluated because SjS, as evil as it is, isn't the root of all evils 

[Joe S.]

Auto Immune diseases like to party with their friends. Fibromyalgia is a simple test for 11 of 18 trigger points. So many doctors put you through 7 years of not knowing before they bother with this simple test. Sleep deprivation and Fluoride Poisoning can produce symptom similar to fibromyalgia. They have different resolutions that Fibromyalgia does not have.

The impact of Fibromyalgia symptoms can be alleviated with a Homeopathic remedy and tones: http://www.chakraforce.com/Tonations.html#329.

Those that have used these tones twice per day for three months believe them to be a miracle. The fibromyalgia does come back when you quit playing the tones. That is why I am exploring the frequencies of parasites as presented by Hulda Clark in "The Cure for All Diseases"

[mshistory]

Thanks, Joe - what's interesting about fibromyalgia and sleep is that people with fibro tend to have sleep disorders so they wake up feeling like they didn't get restorative sleep. We also spent a lot of time talking about pain perceptions because that was one of my first questions (if fibro meant a low threshold for pain) and muscular pain (which I was also assuming was from the SjS but may very well be fibro as well). He did check the tender points at my very first visit and one of them hurt for almost two weeks after that visit...! That's probably why he mentioned fibro at my first or second visit (I can't remember) but for some reason, I didn't think to ask many questions about it (probably because I was overwhelmed by the SjS diagnosis). I had a lot of misconceptions about fibromyalgia so I'm very thankful I have a good rheumatologist who takes so much time with me 

[Joe S.]

I do not believe that you have a low threshold for pain or a memory for pain as most of the doctors think since they have no training in pain. I can drive sterile pins and needles with out pain through skin and muscles. It makes the doctors and others flinch. The pain of this action is not above the background level of my pain.

The pain of a soaz adjustment will lift a Tai Kwondo master 6-8 inches of the table because it is so intense. It is not over my background level so I do not notice it.

While pain levels are unique to each individual. I do not believe that doctor line of crap that you are more sensitive to pain or your body remembers more pain.

[gold55]

Amen, Mshistory!!!

[mshistory]

I do not believe that you have a low threshold for pain or a memory for pain as most of the doctors think since they have no training in pain. I can drive sterile pins and needles with out pain through skin and muscles. It makes the doctors and others flinch. The pain of this action is not above the background level of my pain.

The pain of a soaz adjustment will lift a Tai Kwondo master 6-8 inches of the table because it is so intense. It is not over my background level so I do not notice it.

While pain levels are unique to each individual. I do not believe that doctor line of crap that you are more sensitive to pain or your body remembers more pain.

I know some people can do things like that, but the lower threshold for pain thing is definitely true for me! I have two kids and tried so hard to breastfeed each of them, but it was so unbelievably painful that I couldn't make it a week either time I tried consulting lactation consultants over and over and over again, and they kept telling me we were doing everything right so they couldn't figure out why it was causing so much pain. Now I know.

But the way that it was explained to me is that with fibromyalgia, when pressure is applied to a particular area, for some reason, the pain center of the brain activates instead of the pressure center (they did this really cool MRI study on this apparently...it was a really interesting description) so they were able to tell that people with fibromyalgia actually have a different area of the brain responding to sensations that other people interpret as pressure and not pain.

[Joe S.]

Then I wonder why it is an AI disease. Does it rewire the nerves? Supplements that support the mylin sheath seem to reverse Fibromyalgia to some degree. Removing toxins from the muscle tissue also helps.

[mshistory]

Then I wonder why it is an AI disease. Does it rewire the nerves? Supplements that support the mylin sheath seem to reverse Fibromyalgia to some degree. Removing toxins from the muscle tissue also helps.

I don't think it is an AI disease. I hope it's ok to post this link, but this description is a very good one (and is the way my rheumatologist explained it to me). Unfortunately, I don't think there are very effective treatments for it either - but then again, we don't seem to have terribly effective treatments for SjS either (not yet anyway!) 

http://fmaware.org/site/PageServer06af.html?pagename=fibromyalgia_causes

[Joe S.]

That sounds like some of the information I read over 20 years ago. After that I read an article on the brain and spinal cord lesions that were found with MRI's in people with fibromyalgia. I do believe that with any AI disease you most likely have a genetic predisposition to AI diseases.

Fibromyalgia is usually triggered by a trauma to your system. This could be from a physical accident or from a severe illness. Mine was a physical accident. Some with this ailment have found a change in diet helps others have found no help with a change in diet. With Fibromyalgia, I developed new dietary allergies that I did not have a few weeks before. It was then found that people with this disease would often have interesting changes in their digestive systems.

[gold55]

Fibro is NOT an AI disease.......soooo many people that have it believe they have autoimmune and I wish someone could make them understand that they don't have AI!!!

[mshistory]

Fibro is NOT an AI disease.......soooo many people that have it believe they have autoimmune and I wish someone could make them understand that they don't have AI!!!

Yeah, I wonder if it's often confused as an autoimmune disease since the symptoms are similar to many CTD and fibro patients are often treated by rheumys too. But fibromyalgia does not involve the immune system nor does it damage body tissues or nerves.

[4Kids]

How much pain is necessary? Yes, most of those trigger points can be described as tender on me, as can firmly feeling most muscles that I can compare it to. A very light tenderness, maybe a 1 on the 0-10 scale. Yet my rheumy thought I had a mild fb case which I honestly do not agree with. At that point I had bad hip bursitis, which after stretching it constantly, has gone away, including most of my stiff back pain that went with it.

[gold55]

That's weird 4kids....I just recently had that same type thing on my left/side/hip.....I thought it may be something serious but I ended up stretching out of most of the pain!  hope it keeps getting better.

[soycoffee]

4kids and Gold55
   How do you "stretch out" hip pain?

Hopefully,
Soycoffee

[Joe S.]

Gee, since fibro is not an AI disease, then as Mayo says Sjogren's is not an AI disease.