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ANNIE0514's Photo ANNIE0514 Posts: 249
9/4/12 12:59 P

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I have an appt. next week with Dr. Pellegrino, who is the fibro expert for WebMD. He also has had fibro for 23 years - I was so excited to find that his practice is 2 hours from me! I am hopng to find out answers then. I'll let you know.

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TOBEHEALTHY5's Photo TOBEHEALTHY5 Posts: 22
9/4/12 8:20 A

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Annie0514, I was just reading this post and was wondering what you found out. I also have the muscle nodules/bumps.



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6/2/12 9:08 A

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Whoa! I had some of these lumps, bumps pop up e evenings ago. I had tried a protein powder in my vegetable juice (from my juicer). It started in my inner thigh then some were lower on the same leg then some were in the arm on that side. I was getting worried. I told my husband if I got much worse what stuff I took and if I was having a reaction he might have to explain that to medical people. I told him to remember his life alert button and use it if I needed help. He can't help me at all from his wheelchair.

The bumps and pain didn't go any further. The protein powder has protein from rice, peas, and hemp. The stuff was grainy and wouldn't mix well in the drink. A day and a half later I had intestinal cramps, then diarrhea. I am guessing the hemp was the problem. I don't think I ever ate that before.

Chris

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?
CAREGIVER HELP SEE THE LINK PLEASE

It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris www.agingcare.com/


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
5/28/12 8:32 A

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Me too! emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, 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 t


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5/27/12 3:04 P

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Thank you, Kathy, that was a very informative article. I'd say I have both FM and myofacial symptoms. My daughter, who is now 30 and diagnosed at age 18, seems to have both, too. Chris

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?
CAREGIVER HELP SEE THE LINK PLEASE

It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris www.agingcare.com/


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5/27/12 3:00 P

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I definitely have the bumps and knots in the tissues. For maybe 8 months I focused on deep tissue massage and using a foam roller and using rubber balls and a 'banger' to loosen up those areas. The bumps did not stay away even if I got a few to soften up. I had physical therapy in a warm water pool and pain and tightness improved. I do lots of water exercises and felt this ought to be 'enough' to stay flexible but it isn't. Stretching in the warm pool was a godsend. all this , however, did not seem to be 'the answer.' I am still doing my water exercises and stretching on my own. But I am on to trying some nutritional solutions like juicing (mostly vegetables) and using some suggestions from Teitelbaum's book, From Fatigued to Fantastic. I will let you know if any of this helped. Chris

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?
CAREGIVER HELP SEE THE LINK PLEASE

It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris www.agingcare.com/


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ANNIE0514's Photo ANNIE0514 Posts: 249
5/24/12 9:28 P

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Thanks! I recently read that book too...not sure either! The thing that confused me is that the trigger points, when pressed, produce pain in other parts of the body...this doesn't happen to me. And I have the all over muscle tightness and pain, as well as areas all over my body that are very sore to the touch - they feel like bruises. SO confusing!! I appreciate the info. - I'll just have to keep wondering until I get to the rheumy and get some answers!

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
5/24/12 7:04 P

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Here's a quick little article that summarizes the differences:

www.healingwell.com/library/fibro/we
bb
er3.asp


I think a lot of the discrepancies in diagnosis can be boiled down to the similarity in terminology used... but while the treatments may be similar too, myofascial pain can be eased very successfully with attention to specific issues and with the removal of possible aggravating factors (like poor posture...), and can be linked to neuromuscular injury of some kind, whereas fibro... well. Not so much. LOL

And myofascial pain does NOT have that overall "ache-like-I've-got-the-' flu" thing going, either...

Thanks for pointing out the differences, ABERLAINE...
Kathy emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, 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 t


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ABERLAINE's Photo ABERLAINE Posts: 6,312
5/24/12 3:35 P

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It's been a while since I read it but Devin Starlanyl wrote a book entitled "Fibromyalgia & Chronic Myofascial Pain: A Survival Manual". Trigger points are part of myofascial pain, not part of fibromyalgia. There is a difference between myofascial trigger points and fibromyalgia tender points.

"A myofascial TrP (trigger point) is a hyperirritable area of skeletal muscle. Trigger points exist in association with hypersensitive contraction nodules which feel like rock-hard lumps in your muscle." Maybe this is what you have.

Nancy
Co-Leader: Fighting Fibromyalgia
Co-Leader: The Breakfast Bunch
Leader: Buffalo Bills
-----------------
Dream it. Do it.


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ANNIE0514's Photo ANNIE0514 Posts: 249
5/19/12 10:17 P

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That's one of them I read - thanks :)

I cannot wait to see the new rheumatologist - I couldn't get in until July :( I am fortunate enough to live close to The Cleveland Clinic - the dr. I chose is the best of the best. Which is why I have to wait until July!

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HIPPIEGURL's Photo HIPPIEGURL Posts: 4,934
5/19/12 6:23 P

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I googled fibro knots and came up with a good article that was pretty much the same as described in the earlier post.

www.ehow.com/about_6516708_fibromyal
gi
a-knots.html


Sandy



Work like you don't need the money, love like you've never been hurt, dance like nobody's watching and NEVER fry bacon naked!

You are successful the moment you start moving toward a worthwhile goal.
-Charles Carlson


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
5/18/12 7:20 P

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It would be great if you can find the web address of that article and post it ... I've been on the team for four years and never heard anyone mention this!...Looks like we'll need to update our library! LOL

there is this to keep in mind too, though: it takes an average of six years to get a diagnosis of fibromyalgia as a rule. It's a process of elimination... probably why all the blood tests. LOL

Only recently has it come to light that fibromyalgia physically affects the pain centers in the brain--and the only way to see THAT is a fMRI (functional MRI), one in which pain stimuli are applied during the procedure, to watch the brain's reaction--and it's a very expensive procedure that isn't widely known or available... yet.

Personally? I'm not sure it would work for me, I'm claustrophobic and have to be sedated to even get a regular MRI--and that would probably mess the pain response all up! LOL

I like that "relief, however, is available." Whoever wrote that, obviously does NOT have FM the way I do! LOL I have to take narcotics when it gets bad, so I'm trading pain for fog... I don't like pain meds, and can't tolerate the other meds for fibro--anything that messes with my brain chemistry--too many visits to the ER trying to find something for that "relief"!.. no thanks! Too many visits for other reasons, too, so I just live with small doses of vicodin daily, lots of mild exercise (physical therapy kind of stuff, stretching and walking and dance/walk...), and PACING... and I manage.

Life is pretty good actually. I'd rather be in pain and know I'm alive and aware, than be lost in a medicated haze...

We all have to find our own path in this... but it's nice to know you aren't alone.

You may actually have fibro... have you seen a rheumatologist &/or neurologist yet? They are the ones who deal with this stuff mostly... and you may want to ask about a sleep study too--sleep disorders can cause or contribute to the symptoms as well.

Good luck--and let us know what happens, okay?

You've got me curious!... LOL

Kathy emoticon emoticon

Edited by: I.M.MAGIC at: 5/18/2012 (19:21)
"The real secret of success is enthusiasm..." Walter P. Chrysler said it, 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 t


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ANNIE0514's Photo ANNIE0514 Posts: 249
5/18/12 2:40 P

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Actually, I've been researching and this is one of many articles I found on "Fibro Knots" -


Fibromyalgia Knots

"Relief is available for fibromyalgia knots.

Fibromyalgia knots are hard, ropelike knots that develop in the muscles in fibromyalgia patients. They can occur in just the arms, just the thighs, or all over the body. Although treatment options are available for fibromyalgia knots, there is no cure for fibromyalgia, and the condition can be painful, chronic and long-lasting. Relief, however, is available."

The main symptoms I've had that lead me to fibro (plus the diagnosis of one doc) is:
*periods of "flares" - all over pain in my muscles - most intense in my legs, ankles, feet, hips, back - also in my shoulders and arms
*extreme tightness of muscles - during a terrible flare I feel as though my entire body is in contraction
*Debilitating anxiety and lack of sleep - caused me to be hospitalized and put on meds that helped get the anxiety under control, helped me sleep, and thus helped lesson the painful episodes
*Constantly forgetting things, losing track of what I was saying or doing
*The worst to me is my total inability to take intense exercise anymore. A year ago I ran 2 sub 2:00 half marathons. Now I try to walk/run easy for 20 minutes - feels SO good at the time - I end up paying for it big time by having terrible, horrible pain for the next few days.
*When I have a "flare" - I am very exhausted, weepy, anxious, foggy headed
*the nodules I first assumed were damage from running - I've just been wondering if they are related to fibro since I am getting more

I have had every blood test known to man, lol, had MRIs of my calves and ankles, countless x-rays too.

Edited by: ANNIE0514 at: 5/18/2012 (14:54)
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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
5/18/12 2:14 P

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Actually, ROTTLADY is right, there's quite a list of symptoms relating to fibromyalgia, but lumps aren't anywhere in those that I've ever seen... Diagnosis involves trigger points all over the body... though I thought there were 18... hm. LOL The point is, for a diagnosis of fibromyalgia, you have to have tenderness or pain in at least ELEVEN of those...

I'm curious, have you had xrays through all of this? The reason I'm asking is because I had a major flare-up of some kind in my shoulders, and had to go to the ER. They took xrays, and found that not only do I have moderate arthritic damage to the AC joints on both sides (never diagnosed), I also have calcium deposits in the soft tissue (tendons and muscles) round my shoulders, putting pressure on muscle and nerves whenever I moved enough to shift them--they told me to follow up with my PCP, and apparently, this was caused by a low parathyroid level... treatment is with a vitamin D hormone called calcitriol...now, SOME fibro patients do sometimes have vitamin D deficiencies, but normally it's more involved with the inflammatory or autoimmune aspects of the disease and doesn't include the parathyroid issue... worth asking about, 'cause y'never know!

I hope you find an answer soon, it's always a bit scary not knowing what's wrong...

Kathy emoticon emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, 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 t


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ROTTLADY's Photo ROTTLADY SparkPoints: (43,095)
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5/18/12 12:58 P

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Fibro is not diagnosed by lumps in your calf muscles. It is suppose to be done in 17 different body locations. Other illness can have wide spread pain, fatigue and other things that go along with what a fibro patient experiences.Make sure you get a good doctor and one that can do pain management if you do have fibro.

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ANNIE0514's Photo ANNIE0514 Posts: 249
5/18/12 11:22 A

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I am waiting to get the formal diagnosis, but I'm 99% sure it's fibro that I have. This started last summer with painful overuse injuries (tendonitis) from running, which is what I think triggered the fibro. I have these bumps and lumps all over the muscles in my calves - some hurt - when I have a bad flare they are painful and it seems that they are more pronouced. Now I've noticed I have some in my thighs and just yesterday in my arms behind my elbows. I've tried massaging them out, using the Stick on them, they don't budge. No one has been able to offer me an explanation (the sports physicians that I've seen) - the ones on my calves are really bad. Is this a fibro thing??

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