painful triggers, fatigue

[quincy]

I realize this post boils down to a symptoms question, but a recent experience has me wondering if this is part of the BFS syndrome of experiences that others on here have had. I have not posted on here in a while but I hope a few vets will respond.

Muscle twitching has been almost non-existant for a year, except for a slight, transient one in my left thumb and finger, and last night some light twitching in left thigh muscle.

I have had FM like symptoms ever since I had a trigger point massage a few weeks ago. I had painful trigger points that I wasn't even aware of, and they were everywhere the guy pressed. The worst one was at the muslce near my thoracic lumbar juncture, OUCH! and the other at the top of the right glute area. I was in terrible pain for several week, like I was hit with a bat. I began to have fears of MS again. I started back on Prozac and increased my dose of Clonapin. I felt flu'ish, weak, and completely washed out from this massage.

Last night was watching a movie with a friend when BFS just came to me after not thinking about it since last year when my right tricep was twitching constantly for several months. My Celiac Disease doctor observed it when I went in for a check-up, and she kind of freaked out and emailed a neuro colleague at the hospital. I told her I had twitches from a young age and I really never thought anything of it until the celiac diagnosis and the anxiety it produced in me over fears of getting other auto immune problems.

I wonder if BFS co exists with FM or myofascial pain syndrome/trigger point pain, or is it that BFS expresses itself not always as constant twitching but also as a myalgia type of aching? My mom and sister have been dx'd with FM years ago, but I seem to have the added pleasure, haha, of bouts of twitching that disappear for many months and return out of the blue. any thoughts would be great. sorry for long post.

[Yuliasir]

yep, Chrissi had Fybromyalgia diagnosis too as far as I remember.

[quincy]

I went to a rheumy, and the woman looked at me like I had two heads when I said I wanted to be checked for
fibromyalgia. I told her about the awful massage but she just made me press my legs against her hands to show I had
no weakness. I did feel funny in her office, cause I am a big athletic looking man so I don't give the appearance of having any physical problems. she gave me a script to check for all sorts of rheumatoid factor, cpk, ana etc.

She did say that the sleep apnea I have that is untreated will lead to FM. So now I just stay home on a heating pad mostly cause its the heat of summer and I cannot stand air conditioning on me, it gives me chills and makes me feel achy. The warm sun feels so amazing, I wonder if other BFS sufferers feel better after being in the warm sun soaking up the Vitamin D.

my CK numbers were completely normal, metabolic panel normal. never been to a neurologist, I guess Im scared to find out its MS (that same old weird fear, why do BFS'ers have this???) I could go to the gym right now and leg press 170 pounds easily so why do I feel this way in my mind....? argh

[muppetdog]

Muscle twitching has been almost non-existant for a year, except for a slight, transient one in my left thumb and finger, and last night some light twitching in left thigh muscle.

That's awesome. Normal people twitch that much. That's no big deal.

I have had FM like symptoms ever since I had a trigger point massage a few weeks ago

Ah... what did the massage therapist say to expect. I know I have had physical therapy before and when they found some trigger points they told me they can hurt for a long time especially if they keep messing with them past the point of being therapeutic. You should go back to the massage therapist and ask him/her if what you are experiencing is normal from the treatment. Maybe a few more treatments would actually make the the pain better.

I get random pain also, maybe not to the extent of feeling like I got hit with a bat all over, but there have been times I felt like someone punched me in the face or in the arm or side etc.

If your rheumy looked at you like you were crazy, not a big deal. Fibromyalgia is controversial and mostly effects females. She probably has not seen that many athletic men in her office. I know to be diagnosed by a rhematologist you have to meet the criteria:

http://www.rheumatology.org/Practice/Cl ... -_Excerpt/

Other than that I think its a guessing game by other doctors. There are no lab tests for it.

You can have pain without having fibromyalgia. Pain is general. Other things can cause it. fibromyalgia is the "yeah, we ran all the tests and we don't really know" diagnosis.

She did say that the sleep apnea I have that is untreated will lead to FM

First off. Did you get a sleep study done for a proper diagnosis of sleep apnea. If you Dr suspects it your insurance should pay for it.

Second. If your sleep apnea is not treated properly, like your Dr said, it can lean do FM type symptoms. Anywhere, in anything you read on FM, one of the first things it says to rule out is some sort of sleep disorder. If you have sleep apnea you wake up hundreds of times a night. When you wake up hundreds of times a night you don't get enough time in stage 3/4 sleep (deep sleep or delta wave sleep.) If you don't get deep sleep you don't get proper growth hormone production. If you don't get proper grown hormone production you get really achy. There have been studies where researchers have deliberately deprived subjects of deep sleep my waking them up slightly (up to a lower stage of sleep) when they tried to go into stage 3/4 sleep and within a short period of time, they all acquired FM type symptoms.

Get the sleep thing sorted out. Step one.

My Celiac Disease doctor observed it when I went in for a check-up

I am not sure I have heard of a Celiac Dr. How did she diagnose you? If you have Celiac disease, any little bit of gluten can really really mess you up. Look at actress Jennifer Esposito, she had to quit because she had all sorts of wild stuff going on from Celiac. From what I have read, Celiac is notorious for causing pain. Make sure that's what you have and if so, and you probably already know all of this, but stay away from the gluten like the plague. Step Two.

Step Three. call that massage therapist or go back to them and see if what is going on after they treated you is normal. See if more sessions might help.

I began to have fears of MS again

If you are afraid of having MS. Don't freak out. Odds are you don't have it. I would think sleep apnea and Celiac Disease is more than enough to explain your symptoms. And duh, you had someone cranking on you trigger points. Anything you did new, like trigger point therapy, you have to suspect. It may be that it just takes time to recover from that sore of therapy.

I have read about MS and discussed it with many of the Dr. I have been to see. I was worried about that in the beginning also. It usually comes in the form of really extreme symptoms that come and go in localized parts of the body. Like "hey my legs just decided to drag all the sudden and I can' use it" or "Hey, I can't see out of one of my eyes." Really bad stuff. It is from your immune system attacking the myelin sheaths in your brain and spine. When the myelin goes its like striping the insulation off a wire and dipping it in water. BAM! whatever it was running does not work properly. Short circuit. Very extreme symptoms and not all over your body. From what the doctors have told me.

Just because you have Celiac, and it is autoimmune in nature, does not mean you will develop some other crazy autoimmunity. I think technically allergies are an autoimmunity. Everyone has those. It does not mean we all with get Lupus or MS or Rheumatoid arthritis. And your a guy so the odds are way in your favor.

If you are scared of having MS. Which you don't. Go to your general practitioner and say "look I still have these symptoms that seem to be neurological, can I get a referral to see a neurologist if just for my peace of mind." Surly if they are already treating you for anxiety, they should know that you need reassurance to heal your over active worry muscle No big deal, don't freak out. 97% of the people on this board have gone to see a neurologist with it leading to nothing. When you see the neurologist, If that is something you chose to do, just say "Look I have these symptoms and need some closure on them not being anything." He will check you out and you can tell him you worry about MS. Ask him for an MRI of the brain and c-spine, if that is something you want to do, don't freak out. Your fine. When you get the tests back and they show nothing, which they will, then you will know. Don't freak out. You don't have MS but if you need closure you can have the test.

Seems like a lot of work for something that you might just be psyching yourself out about. Especially if you have other things going on that are way better answers to your symptoms.

If you find that thinking about this stuff causes more symptoms then that is probably another problem you need to address.

I feel for you. pain sucks. I hate it, and the buzzing. I really hate the buzzing.

Hope this helps. Just trying to think logically. I am not a doctor, nor did I sleep in a holiday inn last night.

MD

[quincy]

celiac disease is diagnosed through several ways: gene testing, biopsy of the small intestine, and blood test. I was diagnosed through biopsy and blood test. And yes, of course there are doctors that specialize in celiac disease, though they are gastroenterologists. There are several celiac disease centers such as the ones at Columbia University and Univ of Chicago. I go to the one at Columbia.

I have had bfs symptoms since I was a young man, though I have not been officially diagnosed. Twitching comes and goes with me, though I do find that I have become increasingly exercise intolerant. Trigger points might be developing because of poor muscle recovery. I have also been given a home sleep study by an ENT which indicated moderate apnea which can also contribute to the muscle fatigue and aches of trigger points as well. I have to follow up with the lab study in order to get a cpap apparently... Though I wish the doctor would just get me one without the overnight lab study.

I am wondering if experiencing bfs muscle stiffness can manifest without twitching, because perhaps that is what happened to me this time after the trigger point massage cause me so much trouble for several weeks. I am finally starting to feel better.

[muppetdog]

quincy -

Firs off. That is awesome you are feeling better; and kind of fascinating.

I did not know there were Celiac specific gastroenterologist. You taught me something new.

I had the over night sleep study done about a year ago because my sleep was so bad when all my symptoms started. They are pretty neat and are very conclusive for things like sleep apnea, restless leg syndrome, bruxism (grinding your teeth) and other strange sleep stuff. If you had fibromyalgia you would have alpha wave intrusions in your deep sleep cycle. My sleep Dr said it is because of pain but I have read where it can be physiological.

Again, that is good news about you feeling better. I wonder if you were to keep getting the trigger point therapy if your recovery periods would lesson with time.

Oh, one more question. How would you describe you Exercise Intolerance? A lot of people though this word around, I am just curious how it specifically manifests with you.

MD