how many out there suffer from ibs? ie, some days diareaha, other days coonstipation? how much is from meds do you think?
dry skin and eyes anyone?
insomina? and how often?
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!
I have a lot of those problems. The bowel issues were worse a few years back and since I was on azulphidine and then Remicade (off both now) the severity of the problem is not as bad. Before it was daily debilitating...now, it comes and goes in severity.
I don't know if all those issues are from me aging, the diesease, or the meds. I have psoriatic arthritis. I'm on plaquinil now...and the dry eyes started before that. Because of the psorisis, it's hard to tell where the dry skin comes from - could be a mix of items. I do notice that in spring and fall my skin gets REALLY bad.
I've always had off and on insomnia, but I've also always have had arthritis (JRA diagnosed when 11.)
**
thank you camama-i too, have these issues....but i started a new gluten wheat lactose free diet which has for now stopped the ibs. now i just have the constipation from lack of eating bran. i am eating more apples to counter that though.
i am going to ask the doc for a script of restatis for my dry eyes.
the insomina i cant get under control
the provigil i had to stop because of the neverousness it made me.
i fo to the rhuemy tomorrow and want to hear what he says about what else i can do.
did you get tested for HLAB27 for the PA?
did it come out + or - thanks
how come you went off the remicade?
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!
Ihad to go off the Remicade due to a weakened immune system. Mine has always been sub-par and the Remicade after a while was way too much. The diesease has affected more than the joints. I have problems with low immunse system, liver, bladder, etc. Aside from getting sick easily, I get UTI and high liver enzymes when I start getting overloaded.
I don't know how old you are, but I'm 35 and have developed allergies over the last few years. They say some of my problems are from that. I got allergy eye drops from the allergist last year. My eyes get very goopy, where it is hard to see. For when they get too dry, I use the OTC drops, I'll have to go look at it - it's almost a gel, the eye doctor said they would be better than your typical drops.
I know I should go wheat/gluten free....I'd like to get the family in that direction. It's tough with the kids (4 and 6) with all their snack foods they like. When I do start going in that direction, all I get is "yuck" complaints from them and my husband! 
I have no clue on my lab results.....I never did understand them...I can take a look next time I go.
**
hi missie,
i have really dry eyes, 
they sting & get painful too. 
skin is super dry as well. docs all think it goes along with the AI diseases i deal with. a package deal! 
they sting & get painful too. skin is super dry as well. docs all think it goes along with the AI diseases i deal with. a package deal! with the Crohns...during the summer it was constant "D" all day. 
when i finally got medication it settled down a bit. but now it's like 7 to 12 days of painful constipation followed by 3 or 4 days of the dreaded "D". 
not a nice cycle.
when i finally got medication it settled down a bit. but now it's like 7 to 12 days of painful constipation followed by 3 or 4 days of the dreaded "D". not a nice cycle.i've bought every OTC fiber thing out there, veggies, fiber, lettuce, EVERYTHING...and nothing stops these bad bouts of constipation. but i do have a lot of inflammation in the small bowel and get obstructions; so my GI's quest is to try to alleviate the blockage problems.
never had sleep problems until this august. sometimes i'm up 3 or 4 days in a row with NO SLEEP. 
it's awful. due to pain. it actually hurts to lay down, never mind fall asleep. the throbbing of the joints keeps me up too.
it's awful. due to pain. it actually hurts to lay down, never mind fall asleep. the throbbing of the joints keeps me up too.i sleep the best @ my honey's house. he has a TempurPeadic mattress. or maybe it's just him! not that he puts me to sleep or anything! LOL.
not that he puts me to sleep or anything! LOL. insomnia is the pitts. i use OTC sleep aids. prednisone 
keeps me up too! thank God that infomercials here don't come on till 430am....by then, the morning news is on.
keeps me up too! thank God that infomercials here don't come on till 430am....by then, the morning news is on.i totally support the glutein free and low glutein & wheat diet. it can do nothing but help! it's very healthy.
let us know how you make out @ your rheummy appointment.
how are ya doing?
{{{{{{{{{{{{{{{ HUGS }}}}}}}}}}}}}}}}
Erin VIEW IMAGE
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.
hi erin- uggg arrggg i made some brownies today that were from a package, free from wheat gluten and lactose but they gave me the worst stomach ache in my life. I had two or three of them and i could not digest them, constant belching all night long from them, back to square one, now i know i cant have brownies even that are wheat free gluten lactsoe free, i guess it s the chocolate in them, my gosh why live if you cant have a piece of choclate now and then?
i cant have anything else it seems. the wheat free gluten etc is like eating prison food, the tapioca bread from the health food store is like 'hardtac' and tasteless. whats the point of it ?
boiled chicken for the rest of my life?
boiled meats and fish? eggs and no starches?
it is not nice.
no choclate now.
wahts next? no sex?
no booze and no smoking and no this and no that i feel awful dry eyes dry skin chronic pain it is awful. the docs dont know anything ai am sick of it already if they cant do anything for my why do i bother to even go anymore and waste my time.
i know if i try the DMARDS i will get some kinda reaction from it, my body doesnt tolerate anything anymore
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!
Missie, that's awful...though, doesn't chocolate have milk in it? Or was it carob in the brownies?
My mom did some form of special blood work that went through all the strange allergies people have. She had to eliminate everything for 3 months that showed up as an allergy. Supposedly, after 3 months of the diet you can slowly add stuff back in one at a time. Long as you don't 'react' to the added food product, you can continue to keep it in your diet. Could that theory work as well with the wheat/lactose/etc free diet? I know when I was younger, I had issues with my stomach and I had to go completely dairy free for 6 months...I was fine for a long time and now I have to severely limit any dairy intake.
As for bread, what about spelt? Isn't that wheat/gluten free? You have to toast it though - otherwise it is AWFUL, strangely enough, toasting it makes it MUCH better. Kudos on keeping at it, I need to be doing the same and I haven't been able to make and keep the switch. I know it would do wonders if I did.
**
missie, missie, missie! 
Oy! what are we gonna do with you? that's it...i'm coming over & putting in a feeding tube! LOL. we'll infuse pure seaweed super blue/green concoctions daily! LOL.
Oy! what are we gonna do with you? that's it...i'm coming over & putting in a feeding tube! LOL. we'll infuse pure seaweed super blue/green concoctions daily! LOL. maybe it was too many brownies @ 1 time? i know that any packaged mix/food etc...gives me indigestion and stomach aches. i try to stay away. but when ya cannot make homemade all of the time, it's tough.
also, if there were artificial sweeteners in it....that's a rough one on the gut!
don't call it quits yet! if it were pure chocolate, perhaps that was the culprit in it? Camama has a point with the carob!....if ya ever come across lactose/glutein/wheat free carob muffins or brownies, they're primo!
what is the exact cause of this sprue? i'm not familiar. i read it in your other post? it's difficult to eat eh? if i could live without eating i would!
i would keep trying with diet and experiment.
you're so skeptical about reactions to the DMARDs? it's not worth a try?
i forget...did it come out that you do have PA? i'm trying to recall , but brain dead!
{{{{{{{{{{{{{{ HUGS }}}}}}}}}}}}}}}}}}
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.
Post Edited (erin kachmar) : 2/7/2006 9:23:58 AM (GMT-7)