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 ;)
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"
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 :)
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.
Amen, Mshistory!!!
Quote from: Joe S. on March 02, 2012, 05:49:35 AM
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.
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.
Quote from: Joe S. on March 02, 2012, 05:14:27 PM
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
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.
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!!!
Quote from: gold55 on March 03, 2012, 09:53:46 AM
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.
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.
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.
4kids and Gold55
How do you "stretch out" hip pain?
Hopefully,
Soycoffee
Gee, since fibro is not an AI disease, then as Mayo says Sjogren's is not an AI disease.
Quote from: Joe S. on March 03, 2012, 04:50:19 PM
Gee, since fibro is not an AI disease, then as Mayo says Sjogren's is not an AI disease.
When did Mayo say SjS isn't an autoimmune disease? From their website: http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147
Quote from: 4Kids on March 03, 2012, 01:19:00 PM
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.
That's a good question - I don't know either. I know one of those tender points on me was like a 9 on a scale of 1 - 10! In fact, I asked my rheumy to never press on that area again ;) But I have a lot of other classic fibro symptoms, like sensitivity to lights (especially fluorescent lights - they give me migraines); extreme fatigue (could be SjS and fibro); and muscle pain. I also have strange nerve pain in response to cold, but that could be early Raynaud's too because although my fingers never turn blue, they do get red and itchy after warming up and hurt like crazy in response to cold...these diseases/disorders are so confusing.
Quote from: Joe S. on March 03, 2012, 05:22:37 AM
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.
Fibromyalgia is an orphan diagnosis, though not an orphan illness. Now that there are some treatments, other than exercise, it is beginning to be accepted as an illness (according to an awful NYTimes article from 2010 or so.)
I think it will eventually be classed as a neuropathy, not
a. a neurosis
b. a hypersensitivity in a hypersensitive female neurotic!!
Please add to the list of punishing labels for people with fibromyalgia.
I hate to admit it, but fibromyalgia does respond to physical exercise, in my experience. It helps if the return to physical exercise is under the supervision of a physical therapist, with a view to continuing the exercises at home. Walking to your physical therapy appointments accelerates the effect :-) -- I did that once.
Fibromyalgia is *not* an AI disease, and AARDA, the American Autoimmune Related Diseases Association, lists Fibromyalgia (and chronic fatigue sydrome - CFS) with two stars ** to the following footnote. @Joe -- AARDA lists Sjögren's Syndrome as an AI disease.
Quote
**NOTE Fibromyalgia and Chronic Fatigue are listed, not because they are autoimmune, but because many persons who suffer from them have associated autoimmune disease(s)
Yes, as MS History suggested at the start of this thread, like SjS, fibromyalgia is a disease that occurs together with things like sleep disorders, of various kinds including restless leg syndrome, and with CFS. My rheumy likes to call any complaint of fatigue "Fibromyalgia," which bugs me -- I could come back at him with "How do you know that it isn't CFS?
The takeaway from my post: For fibromyalgia, strategies to increase exercise, and a referral to sleep medicine, are helpful. The jury (research) is not in or conclusive on fibromyalgia causes and treatments, except for exercise.
Soycoffee
P.S. I was diagnosed as part of an international reseearch study in 2001, by someone who knew her tenderpoints.
mshistory, Mayo Rheumatology refuses to Dx it when all the markers are there.
Thanks, soycoffee, that was very interesting!
Joe, I have no doubt Mayo would diagnose me as having SjS (and as having an autoimmune disease) because I have an extremely high ANA, SS-A and RF as well as an elevated ESR (originally - that waxes and wanes). :P But I know they're not very good at treating seronormal persons, which is unfortunate.
Quote from: gold55 on March 03, 2012, 09:53:46 AM
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!!!
-
Exactly. And FM has a CAUSE. Look for the CAUSE. What caused mine was Lyme disease. Another cause can be GLUTEN.
There is no real treatment for FM, so a diagnosis doesn't do much good. (unless you treat the CAUSE)
Jazzlover, Try the tones for Fibro. http://www.chakraforce.com/Tonations.html#329.
3 minute per tone in sequence, twice per day for a month.
Soycoffee,
Google IT band and how to stretch it. Basically on the leg that is bothering you, stand by a wall, your hip to the wall. Cross the other (ie right) leg over your ankle. your left key should be sort of leaning to the right but straight. as you lean your hip into the wall you will feel a stretch in the outer potion of your hip and leg. It may hurt worse the first week. Cleared it right up for me.
I do have fatigue, but i also had terribly low iron due to bad extended periods and waking kids. I think maybe it was just a quick assumption. That said, I rarely get a restful sleep, but even rarer do I get to sleep through the night.
Quote from: 4Kids on March 03, 2012, 08:39:44 PM
Soycoffee,
Google IT band and how to stretch it. Basically on the leg that is bothering you, stand by a wall, your hip to the wall. Cross the other (ie right) leg over your ankle. your left key should be sort of leaning to the right but straight. as you lean your hip into the wall you will feel a stretch in the outer potion of your hip and leg. It may hurt worse the first week. Cleared it right up for me.
How did you know? I looked it up on the web, and remained dubious through the Wikipedia article and some other descriptions, until I checked out some Youtube posts of the exercises themselves, and some of the narrative, that relates IT band to hip and sacroiliac -- and to uneven leg length, which I have. I found the one stretch of blank wall in my apartment, and tested out the leaning, but I have to review the videos for more. Thanks, 4 kids.
Quote
I do have fatigue, but i also had terribly low iron due to bad extended periods and waking kids. I think maybe it was just a quick assumption. That said, I rarely get a restful sleep, but even rarer do I get to sleep through the night.
There may be reasons that your sleep is interrupted, with four kids, that are not related to your physical state when you sleep.
BUT not getting restful sleep can have more to it than sleep interruptions, or getting to sleep late and rising early. It has to do with not getting enough REM sleep, or having an sleep rhythm that is off, or other physical reasons. If you snore, I would suggest being seen by a specialist in sleep medicine. If you don't snore, you could see if taking melatonin at night (starting with low doses -- less than 1 mg), and see if your sleep is more restful.
All the best,
Soycoffee
Any time I have taken melatonin it keeps me awake. Sleep aids do not seem to help me at all! Arthrotec does.
My kids rarely all sleep through the night. Even last night- they all did, but the car got me up twice. In May it will be ten years since I have slept through the night on a consistent basis. that said, if I am away for a night or two as I have done twice, the patterns persist. It takes at least three nights to unwind and I have never been away for that long.
My rheumy told me about the stretch. She wrote out the IT stuff and something else for me to research. Best stretch I have ever done. I too have a hip defect. my hip is much weaker but it is the defective hip. She assumed the weakness was due to fb, but it is the wrak one. So many questions!
Boy I sure love this thread of topics.......many things I have pondered are being brought up here!!! I have much curiosity regarding Fibromyalgia....I have friends with it and have often wondered if I have it but I don't fit the trigger points. I read an article which stated that often Fibro follows SJS so we end up with both?? How do you think this happens.....SJS causes change in our stomachs, digestive systems??
Quote from: soycoffee on March 03, 2012, 04:46:26 PM
4kids and Gold55
How do you "stretch out" hip pain?
Hi Soycoffee,
My pain has been creeping up and getting worse in the left hip but moreso over the left pelvic bone...so it is kindof off to the side and barely coming to the front. I've always figured it was muscle, tendon pain but when it got worse I would get pain in my hip socket when I would turn to the left to step out of my car. It really scared me cuz for now I've got joint problems in my feet and hands and I was worried that my big joints were going!!! Maybe my hips are starting to be affected by osteo but for now I took tylenol for a couple days and began a stretching regimen for this left side. I always do side leg lifts so when I'm laying on the opposite side doing leg lifts it stretches the pain I feel in my left hip area. I would hold onto a chair and stretch my left leg straight back and hold it for a while. Then I prop up one leg at a time on the bed or the bathtub and stretch, bending the opposite knee and trying to hold in that position.....it's kind of my own personal yoga that I've developed to feel better. Sitting and stretching the legs out in a V position and holding onto each foot for a few minutes helps. Also standing up with legs in a V position and placing your hands flat to the floor and holding helps. I used to practice ballet and gymnastics from age 3-teenage years so I'm so used to getting in weird positions and holding. I suggest you find your own positions which make the pain in your hip feel better and practice holding those. Stretching the leg back (on the pain side) and to the front and side (holding) really makes my pain feel less. Also, when I work the leg opposite of my hip pain it stretches everything on that opposite side and really helps. Little by little the pain has become much less and when I put pressure on the left leg to get out of the car I don't have pain like before. The weird thing about this pain is sometimes I can touch that hip/side pelvic area and it feels sore to touch.....then other times it doesn't!! Ahhhhhhhh.........sometimes athletics and dance at a really young age can ruin your body as a senior! My mom often apologizes to me for getting me involved in dance so young :)
Yoga and Tai Chi are both good for Fibro, as is massage. Oh, I miss my massage sessions! :'(
In the last month or so I have read an article that stated that researchers are thinking that fibro is also an autoimmune disease because of some of the studies that they have done.
It would not surprise me at all because the pain receptors get shot to heck and makes one think that something is being destroyed that affects the pain sensation. I should have copied the article, but at the time I was in a hurry and just figured I would see more info down the road if it comes to fruition. Irish ;D
4 Kids, please indulge me. How did your car wake you up? :)
Sharon
Quote from: slccom on March 05, 2012, 12:25:30 PM
4 Kids, please indulge me. How did your car wake you up? :)
Sharon
bahaha! Cat, darn autocorrect on my phone!
Thanks! One reason I asked is that for a while I had a car that would occasionally turn on its horn just for the thrill of getting us to come running. ;D Sharon
For the fun of it, here is some phone autocorrect humor:
http://www.damnyouautocorrect.com/13603/the-25-funniest-autocorrects-of-dyacs-first-year/
Enjoy!
Sharon