Ra, Tmj Or Similar Anyone?

[jnifred]

Just a forewarning, this is waayyyyy too long, sorry, but I wanted to get it all out there....

I was diagnosed by symptoms about 6 years ago with Ankylosing Spondylitis, but all my blood tests were negative so it was all based on my sypmtoms. I originally went to the RA doc b/c of severe TMJ/lockjaw in one side and my thumb which had been swollen for years, along with intermitten bouts of swelling in other fingers and toes. I thought I had RA, but after a whole list of questions my Dr. decided it was more AS instead. I was treated with Methotrexate and Arava and some other fun stuff after Celebrex and the like did nothing. I still had some really bad flare ups so we went to Enbrel which helped tons. I still had some minor swelling and joint pain on occasion, but overall was fine. I did still have some issues with sleep, back pain at night kept me from getting rest even though I'd sleep for HOURS.... A muscle relaxer finally helped with that.

About 2 1/2 years ago I had to go off Enbrel b/c of unexpected pregnancy (#4 boy) and was on very low dose of Prednisone off and on as needed during that. Since then I have been on and off prenidsone and muscle relaxer most nights to get some rest. I wouldn't call myself in a lot of pain, but that of course is subjective and I guess maybe I have learned to live with a lot of it, plus I do have a high tolerance for pain. Anyway.....I have just recently (b/c of my mom) started looking into celiac's.

My Grandma has for years, forever and ever, had bowel problems. Constant diarrehea, several times a day, she gets so sore she can't walk. She has been diagnosed with IBS and diverticulitis, but I have absolutely no faith in most of her docs, as I think they are Cracker Jack docs. She is heavy, not even remotely on the thin side, so I don't know how that plays into it. But looking at the symptoms of Celiacs, she has (off and on) had well over half of the things listed. Over the last 10-15 years my mother has started in with some of the same symptoms as Grandma, and now I am starting in with the same stuff.

Mom and I both have some sjogrens also. Her fingers just get absolutely white and cold as ice, I only have 1-2 fingers affected so far and rarely. She has been diagnosed with rosacea also, although I kind of question that for various reasons. That side of the family is at least 50% Irish/Scotch with a lot of Dutch and German and lots of other stuff in there. My dad's side of the family is TONS Swede, grandpa 100%, grandma that plus German and English. They both died in their early 60's of heart attacks, and being Swede did NOT under any circumstance discuss "bodily functions" or illness unless death was imminent. So I have no Idea about any of their possible issues. My dad was diagnosed with Sarcoidosis that affected his brain and eyesight, he died about 6 yrs after the diagnosis. He also had self diagnosed gout but never went to a doc, so who the heck knows.

I have in the past few years become more and more intolerant of certain foods. I have a seriosuly rumbly stomach at times, gassy (eeewwww!!!) to rival the boys, bowel movements that require 2-3 flushes because of the amount of toilet paper needed to clean myslef (sorry, TMI!!) and every bathroom has Vaseline in it to help with wiping, I even carry a small Vaseline in my purse just in case. I have been experimenting with the gluten free diet. I ahve remained gluten free during the week and then eaten whatever on the weekends for the past 2 1/2 weeks. I have noticed a HUGE difference even after jsut 1-2 days gluten free, with everything, from my joitn pain, to the TMJ, to the nasty bowel stuff. Is this normal, or is it all in my head????

My jaw which was almost completely pain free this past week is killing me right now, to the point that I am carefully choosing what to eat so I don't have to chew too much. My hands are stiff, and I have had more gas this weekend than I had all week. I haven't had that much gluten, jsut a small amount really, so I am wondering if the severity of the symptoms can be related to the amount of gluten???? My husband thinks I am nuts, maybe it is jsut the stress of ahving everyone home this weekend and him working ALL weekend, leaving me to entertain 4 boys and referee the fights.

He says to just go to the doctor and find out, which I do plan on doing, but what if it all turns out negative and then I have nothing to back it up with??? I am tired of not knowing what is wrong with me. I have been fighting exhaustion, aches and pains and etc since I was 25, that is 11 years. I am young, have a great family and a pretty nice life, it really sucks to be cranky and irritable when I know that it is not my personality to be that way, it is just not getting the rest that I need, dealing with various aches and pains and having a bloated, gassy stomach everytime I eat. IWhen my flares were really bad I felt like a 90 year old, it really sucked and Dh tried to be supportive, I know he did, but he just did not and still does not understand.

I am writing all of this in the hopes that SOMEONE can relate to all of my symptoms. I know that the list is endless as to what can happen with Celiacs, I just want to have someone tell me they have had a similar experience so I don't feel crazy, esp. if the bloodwork comes back as normal. I HATE normal bloodwork, I know there is something there, my first RA doc did too, he was so good!!! But we moved and I could not convince him to move with me......oh well.

Anywhoooo, if you ahve made it this far, thank you for listening to my rambles, I wait to see if anyone out there understands were I am coming from.....Thanks again...Jennifer

[Paul-Bunyon]

Sounds like you have had waaay more than your fair share of tough stuff. I dont have the pain you do, but I just wanted to say "hang in there."

[TheLibertarian]

I was diagnosed with RA before being diagnosed with celiac disease. My symptoms are not very severe and I do not take prescription meds for them. When the weather changes, though, I do have some pretty bad pain in my back.

[lizzy]

i have swollen joints in my jaw too and ear ache to go with it but since gong gluten free its slowley getting better. and so are my other joint pains. it takes time for your body to adjust and heal. why are you eating gluten on a weekend u really need to stick to it 100% to feel the benifits liz

[Rachel--24]

Just wanted to say I had all your same symptoms + a whole lot more. I had bad TMJ for about a year. I couldnt fully open my mouth. The joints and muscle were always swollen and very painful. I also had swollen glands and pretty much my whole head was puffy and swollen. My neck was also unbearably stiff and would crack alot. My hands would and fingers were also puffy and stiff. When I went off gluten everything got tons better. I dont have TMJ anymore unless I eat gluten. I used to have to wear a splint and I havent worn it once since the day I changed my diet. The swelling is not completely gone but about 85% better. I do gluten myself accidently quite a bit though. I was looked at by all the specialists and had tons of tests done but nothing was ever found. My celiac bloodtests were neg. but I had been off gluten before the tests. I was checked for RA, Sjogrens, Myasthenia Gravis, MS and other stuff but nothing came back positive. I do have Graves disease though and I was also dx'd with Rosacea...which was a false diagnosis...I dont have it and never did. I get weird bumps or blisters when I'm glutened and thats what they thought was Rosacea. Anyways back then I'd never heard of gluten so I just believed what they told me. I ended up testing positive with Enterolab tests 3 months ago so I'm still just starting out I guess.

[jnifred]

Thanks, I was jsut experimenting these past few weeks with gluten to see if it did make a difference. I am eating gluten now to see if I can get a true reading when I go to the doctor this week. I was only off for 5 days but it made such a huge difference. If these come back negative I am going to pay for the Enterolab testing. My itchy spots are back in full force too now, just overnight. I get red itchy, almost to the point of painful kind of a burning sensation, rashes around my eyes mostly. Those were gone last week when I was doing gluten-free, but back now that I have been eating all of it this weekend. If these tests come back normal I am going to scream so loud I promise you will hear it.

Anyway, thanks for responding, esp you Rachel, knowing someone else is out there with all of my issues (plus) makes me feel better. I hate second guessing myself, but I know that all this is just not right. And I can't keep going on and off prednisone forever.

[jams]

Hey there!!!

I just wanted to say...the symptoms are so similar to celiac disease that it could be!! Eat your gluten, feel like crap and get your test!! It completely stinks that we have to eat gluten to get the diagnosis! However, you would then KNOW it is in your family and you can watch out for EVERYONE else!! That is what mom's do best! Take it day by day. Be honest with yourself and your dr. IF it comes back normal, just remember that being gluten free makes YOU feel better. If it helps YOU... that is all that matters!!!

My motto... IF MAMA AIN'T HAPPY AIN'T NO ONE HAPPY!!!

[Rusla]

jnifred,

Sounds like you are writing part of my story. I have had TMJ for about 25 years now, so bad that they have to put me out with sedation to do my teeth. As pain killers are out of the question because of numerous allergies I learned to tolerate the pain.

Now that I have been gluten free totally for the last week, I have noticed I have had not one tmj pain or contraction in my jaws. Unfortunately, and I am not looking forward to it, I have to go back on gluten next week.

I find I don't get my tired spells when I am not on gluten also, but then I know gluten has not totally left my system after years of eating the stuff.

Your story sounds like mine and so many others on here. I would say that it sounds like we are all paddling the same boat.

I know how difficult it can be with doctors and more so with old world Eurpean families. My parents knew nothing about anything in their families because neither my Danish or Italian grand parents would talk about it and neither would my parents. Which in itself was a crime mainly out of ignorance. Now my mother will talk with me about her health issues which there is a correlation between her issues, my sister, brothers and me. Although she doesn't believe she has this, my sister may have this and so may my younger brother. Just my younger brother is chicken about this stuff and my sister is not going through everything that I am or have but she is watching.

I wish you good luck and suggest you try to find a civilized doctor who will do something and do it right. I am having problems with doctors up here. The majority totally despise anyone who does research like I do.