Hi LeeLee, I know when I work my arms at the gym, I get abdominal pain. Somehow, arm pressure resonates to jaws(TMJ), stomach, pelvic, and bladder and cause serious spasms. It takes days to release the stiffness. I am aware of it. When I do anything with arms, I try to keep my pelvic muscles relaxed, something I am learning in physical therapy (biofeedback and reverse Kegels exersise with accent on relaxation).
I exercise my legs mostly. I am afraid to do pushups and anything that gives me abdominal muscle crunches directly or indirectly. I have not tried CorssFit, but I would like to. It is pretty involved. The value in CorssFit program is mental more than anything else. However, most fitness instructors have no clue how to work with our condition because they are trained to work with healthy people. So it is up to us to learn and prevent internal injuries.
Perhaps we can only exercise certain areas of our bodies at this time? I am not sure, but it seems to be the case with me. Legs - no problem, anything else - watch out.
Now, that it seems like my IC is somewhat better, muscle pain, heaviness, and numbness are pressing issues. This condition scares me a lot, too. My symptoms change. If I went to a doctor and describe what I feel at certain points, they would think that I am crazy. I am waiting for app with Matia.
Hope you feel better soon.
 

hey leelee-
put die off into the search box. 
people have insane things happen--i got tingles on one side of the body SO SCARY and i went to the doctor and i was fine.  its easy to get scared, but if matia says not to worry about it; i would trust her.

Lee-Lee,
I have had some very bizarre muscle issues coming up. I am not treating with Matia anymore because sadly I can not afford it but I keep looking at this site. My issues are in my arms and one leg. It feels like localized weakness sometimes I have pain but mostly  weakness. I would believe Matia I know how scary it is but I just think this disease involves many of the systems of the body. I have been terrified too but I am starting to calm down and trust that my body is doing what it needs to do to get better and sometimes healing can seem scary. Calming down has helped my symptoms quite a bit try not to go to a dark place. I have read alot about muscle issues on this site you are not alone!

Hi LeeLee,
Even if you hadn't had the MRI, I would be thinking that you shouldn't worry.  Now that you've had the MRI, I would suggest that you take comfort in that and be intrigued by the die off.  Other than occasional  aches and pains my muscle die off didnt' hit with a vengeance until one year into treatment.  It started off with my right calf, then it went to my left calf.  I stepped up on that leg, which hurt just a bit, then I felt this popping and tearing.  I braced myself to just keel over and drop dead from excurciating tearring pain.  Fortunately, that didn't come, it just locked into a charlie horse that lasted for a couple of weeks.  After that my right rib area started to hurt.  For awhile it hurt under the rib - sure I had liver cancer.  then it moved up in front, then it moved toward the back.  For awhile it hurt so much that I couldn't really walk very well.  That went on for about two months.  I had dark circles under my eyes from the pain.  When I mentioned it to Maria, she said that 75% of her patients had some sort of muscle pain.  The pain, four months later, is nearly gone - just kind of comes back here and there.
STRANGE!

I hope you're feeling a little better. I have no idea what it could be but I do understand the panic that ensues when anything weird happens. In my experience in life before IC, most everything turned out oK. Now, I almost have PTSD that every twing is serious. Trust Matia and assume that "this too shall pass" ((((hug))))

You will get through this... I've been dealing with major muscle issues in my knees/legs - weakness, pain, tightness, etc.  but I never had it come and go, it was always there, so it could be different from yours.  But Matia's helping me out of it, bit by bit, and I'm scores better than before.  But it was insanely scary and I got so panicky and so dark, esp as it seemed to spread and worsen so I thought maybe Matia's making it worse not better or something else is wrong....  If you can learn anything from my situation, try not to panic and know that this weird muscle stuff seems to be a part of the whole craziness, and going to that bad place really only makes things so much worse b/c fear is all future-based and thought-based and is just such a strong energy.  Of course this is still a difficult area for me.  I actually just read last night a book that was quoting a line from A Course in Miracles: "If you knew who walks beside you on the way that you have chosen, fear would be impossible."  Now I don't know what I believe, and I don't think when it says 'who' it means a physical man in the sky god type of thing.... but this line really struck me.
Also were you pushing yourself too much -- physically in your arms and/or overall in life?  For me that seemed to be a component.  Even if not, I urge you to lay off certain activities/things that aggravate it, b/c I think I made myself worse by not listening to my body, even if it seemed ridiculous like 'I can't just stop doing x/y' but it's just not worth it if it makes things even worse. But don't blame yourself either b/c no one knows for sure, and it might've worsened on its own regardless.   And if you need more tests for more certainty, I respect that, I did them all... but in retrospect was a huge waste of money and effort, turned up nothing, and some docs looked at me like I'm crazy, b/c no one gets this crazy disease, and these negative experiences didn't help my overall mood. 
Trust in Matia's genius and learn from my mistakes... freakish and scary as it is, it will pass... probably not near the timeline you want, as our bodies are on their own clock of fixing and healing.  We can fight it which burns so much useless energy, deflates our needed reserves and promotes more negativity, or we can surrender (so hard!!) to what is, b/c it will be what is whether we fight it or not.  (I don't say this from on-high at all -- it is something I myself try and mercilessly fail at repeatedly, and am trying to get better at.)

Did you doctor refer you to a specialist or what is he/she saying about autoimmune? I have muscle pain, too. I don't know if it is from IC or from something else. 
 

(((((lee lee)))))))) So sorry you are suffering and anxious. Try to trust matia- She wouldn't lie to you even to make you feel better!
Hang in there.