PDA

View Full Version : how do YOU know a flare is coming?



debbie-b
03-14-2009, 06:39 AM
I would like to know, how you guys know when you are about to have a flare.
With me, it mostly starts with diarrhea, hair loss, nausea, incredible joint and muscle pain, painful skin, bad brain fog, headaches and fatigue. Does everybody experience the same?

Debbie

Saysusie
03-14-2009, 09:01 AM
My signs are usually a terrible headache that lasts for days, then I start to feel the muscle and joint pains, nausea, fatigue that encompasses me and then it just goes rapidly downhill from there!

Peace and Blessings
Namaste
Saysusie

lucky7
03-14-2009, 03:15 PM
Hi Debbie!

Just wanted to add that you sound pretty much like the way i start out. The severity just depends on how much i pushed it or just exactly how stressed out i got and for how long. I noticed sometimes if i feel it coming on, if i stop and lay down to nap it will sometimes subside. Just depends. My bodys all over the place these days!!!

Saysusie
03-15-2009, 09:55 AM
The hardest part is that, often, flares just come out of nowhere! I can deal with a flare when I know I've done something wrong (like push myself, not take care of myself, go out in the sun etc.). But the flares that just show up are usually the ones that last the longest and that are the most severe. Those flares (actually like the one I've been in now for almost 2 months) make me so depressed sometimes because I just don't understand them:no:

At any rate...My sweet hubby always manages to take me away somewhere so that I can completely rest. So, we are on our way today for a week of zero activities for Saysusie. The sad part is, it seems that he has to do this more and more often and that is becoming a concern for both of us. Oh Well

:wacko: Makes you crazy doesn't it????


Peace and Blessings
Namaste
Saysusie

lucky7
03-15-2009, 12:37 PM
AWww, Hi Saysusie!

Your husband sounds great! What a sweetie! Sorry youve been in a bad flare for so long now. Thats hard. Yeah, i agree with the fact that the worst is when it pops up on you out of nowhere. I pretty much know my triggers but i get confused when it "just happens".

Sounds like youre going to get some well deserved rest and i hope you kick this one SOON!!!!!!
HUGS!!!!!

sick n tired
03-15-2009, 02:06 PM
Debbie,
Since I have reflux and problems with my stomach it is hard to tell. But I then will get a huge amount of pain, dizziness, bone crushing fatigue....The one I am in now, actually started with coughing...very out of the blue. Felt fine up till then...but this one is one of the worst kind.

I agree with Saysusie...the worst flares are the ones that broadside you when you least expect it...I personally would like to know what caused those so not to do it again.The ones where I push myself might last a few days or a week or two at the most but the others...I also am in one that i have been in since New years day:hissyfit:
Ready for it to be over, now.

rob
03-15-2009, 02:40 PM
Hi Debbie,

Welcome to our group. For me, I get terrible mouth sores, ones that make it painful to eat anything solid. I lose my appetite, nothing tastes good. I suddenly feel like I've had a lead blanket thrown over me, and everyday tasks become very difficult, confusing, and I get frustrated at the drop of the hat. Cognitive dysfunction, or "brain fog", is one of my worst symptoms, and my flares always start with mental confusion. Not much fun. Eventually, the joint pain comes, and the fatigue is opressive. My flares are fairly predictable. Most times anyway. Sometimes new, odd symptoms happen, and I just add them to the list.

Rob

mountaindreamer
03-15-2009, 07:09 PM
hi debbie,

my flares start with my hands hurting, extremely hot, swelling, and redness. I also have a problem with being irritable, and easily agitated. I then get hit with fatigue, joint pain, and down hill from there.

interesting thread...thanks for starting it.

BadFlareDay
03-22-2009, 07:51 PM
I always feel like I'm coming down with the flu

brandichi
03-23-2009, 07:41 AM
For me, it's the extreme fatigue that hits me even when I do very little and when everything is more of an effort than usual. The muscle and joint pain get worse, and often show up in new places. My legs and arms feel like I have weights attached to them. Emotionally, I get more sensitive and react more strongly to events I would usually be able to ignore. And the brain fog, too, when I can't remember the names of people or things right in front of me, and all I want to do is curl up and hibernate for a while, and shut the world out.

gina
03-23-2009, 11:06 AM
When i notice the flare is coming is always the next day after a streesfull day. my hands and ankles are swollen i get diharea after every meal. hair loss is worse. and fatigue is real bad more so than normal. if i try yoga and taking a nap on that day i am not so bad the third day. just depends on your body and your reactions are always different than someone elses. hope you don't have too many flares.

mountaindreamer
03-23-2009, 05:19 PM
yeah, shut the world out....that is what i try so hard not to do, but i always close myself up in my little miserable world. i don't even answer the pone most of the time, i just don't have the energy.

Mary Jane
03-24-2009, 07:11 PM
I start out by feeling extremely fatigued...for instance, last week, I started feeling fatigued. Sunday I thought I was feeling good...went to the park with the husband,kids and dog...walked alot with my dog. when I got home I just felt exhausted, and was in bed by 9:00...which is very unusual for me. Now this morning (tuesday) I woke up with the rash I always get on my hip/thigh/buttocks...and the joint pain was worse. I still went to work today...but by the time I got home, I had the fever and chills...now I'm in my recliner with two blankets on....Lupus Sucks.:hissyfit::hissyfit::hissyfit:

Danica01
03-25-2009, 01:35 AM
For me I will get these huge, red, sore knots on my fingers and elbows. After that my head will hurt and my body feels like it has been ran over and then backed over!!!!! It seems to hang on forever right now! I normally just have to say that it is a bed day for me and Tim understands and tickles my back so that I can relax.

Saysusie: You have an amazing husband!!!!!! I am so happy he takes such good care of you! I understand about the flares you can see coming and then the ones that just pop up. I feel responsible when I have been pushing myself too much but the ones that just pop up are so frustrating!!!!!! I hope you feel better and while you are away rest so that you come back refreshed!!!!!!

AyahsClan
03-25-2009, 02:07 AM
My flares are sneaky lil punks. There is no pattern to them. Sometimes it starts with sharp stomach pains, sometimes neck/headache, sometimes pulmonary, always fatigue. I've had a throat ulcer pop up overnight that I thought was a simple sore throat until it didn't go away after 3 weeks. I guess there is no such thing as "simple" with lupus! lol ...Often a rash will preclude a flare, brain fog gets worse too right before a flare. Sometimes it starts with a low grade fever that lasts for days.

The only pattern I can distinguish is what may happen after an outing. Whoever I am with, we use copious amounts of germicide. At least 50% of the time I am going to have a flare after an outing. I think airborn virus, bacteria, chemical, traffic exhaust fumes or who knows what triggers a flare. Maybe it is the temperature variations or the physical exertion.

mountaindreamer
03-25-2009, 04:36 AM
good morning ayah,

i am curious about you flaring after every outing. do you mean every time that you try to get out of the house, or are you talking about longer outings such as trips, hiking, camping, etc. This is so curious, and i can't imagine the anguish knowing in advance that something is definitely going to make you hurt. A dr. once wanted to try a treatment on me that was supposed to help with fibro, but before helping, it typically caused a flare. I told him that i did not think i could make myself walk into his office knowing that i was going to leave in a flare. I feel the same aabout your situation....i just don't know if i could go, i would probably lock myself up and really get depressed.

i am so sorry that this is someething that you face on a daily basis.

AyahsClan
03-25-2009, 06:40 PM
good morning ayah,

i am curious about you flaring after every outing. do you mean every time that you try to get out of the house, or are you talking about longer outings such as trips, hiking, camping, etc. This is so curious, and i can't imagine the anguish knowing in advance that something is definitely going to make you hurt. A dr. once wanted to try a treatment on me that was supposed to help with fibro, but before helping, it typically caused a flare. I told him that i did not think i could make myself walk into his office knowing that i was going to leave in a flare. I feel the same aabout your situation....i just don't know if i could go, i would probably lock myself up and really get depressed.

i am so sorry that this is someething that you face on a daily basis.

Did that fibro treatment help you in the long run? Was it a shot? Fibro sucks huh?

I do well traveling if it is DH and I staying in our trailer. We went all the way to PA in 2007 and wasn't sick the whole time! Well I did get a funky itchy skin infection...lol..ok so I guess I did.

Every time I leave the house and will be around people there is about a 50% chance I'm going to get sick, or I am still sick from the last time I went out around people. Last time was ridiculous. DH went with me to the SSI office, there was only one other person in the waiting room, then we went to the health food store, then home. Two days later I am sick with something pulmonary. I had asthmatic bronchitus for several weeks. Lately I have been lucky. I have been out about 4 times since the SSI office and have been ok. It is much safer for me to be outdoors, anywhere away from people and traffic fumes.

I just asked DH if he thinks it is about 50% and he said yes, but pointed out that I tend to be in local places where sick people are, which makes sense. I have to go to the SSI offce once a month and sick people go there, etc.

Children are my greatest joy and deepest sorrow. About 75% of the time, when I am with my grands, I'm going to get sick. The kids bring my grands up thinking for sure they are virus free. It has become a joke, bring a well kid to Ayah's house and within a couple hours they are either puking or have a fever. They are in day care and circulate a melting pot of viral bugs that wait for the weekend at Ayah's to manifest.

I just thought this was normal for lupus or compromised immune systems. Even if I don't come down with a full blown virus, it takes several days to recuperate from a grocery store trip.

mountaindreamer
03-25-2009, 08:16 PM
hi ayah, i had a serious brain fog....the treatment was for the interstitial cystitis, not fibro....i don't know if it would work, i never started it. sorry about the error.

yes, fibro, is huge problem, because it seems to raise its nasty head whenever something else is going on. with my recent episodes with my heart, my fibro consistently flared due to the pain, discomfort, elevated heart rate. i went from heart to fibro every day, i got soooo tired of it all.

are you taking an immune suppressent? have you tried wearing a mask when you are around people? i see that a lot around here especially during high allergy season. would be weird, but you could draw funny faces on it....how frustrating it must be knowing that a trip to the grocery can make you sick....wish it wasn't this way for you.

SassyAuburn
04-02-2009, 03:45 PM
This was the perfect thread for me to stumble upon today. I've been complaining since Monday that I was "coming down with something". First I thought it might be just my allergies kicking in since my eyes were slightly drier and itchier than normal. Then I thought maybe I had worn the wrong shoes because my feet, ankles, knees and hips were really really achy. Then I thought I was getting a stomach bug because everything I ate made my stomach sound like an erupting volcano and gave me upper G.I. pains (with occasional diarrhea) plus I started running a constant low-grade fever (99.4). Then I thought maybe I was just stressing about recent family problems because I was really tired and had a headache almost every day.

NOW, after reading everyone's posts, I am thinking I am just having a flare (my sister, r.i.p., had MS--she called them "twits"). Since I haven't really had a cluster of symptoms at the same time--usually it's JUST a headache for a few days or JUST mild joint pain or JUST a little overtired--I never really put two and two together that what I'm going thru right could actually be a full blown flare.

It's a little scary for me. Since going on Plaquenil after being first diagnosed last July, I thought I had total control of my lupus/connective tissue disorder. More energy, less symptoms, hardly any aches, etc. Now, I am having symptoms of things that I didn't even have when I first started having problems. I never had stomach issues before--right now I'm getting cramps after everything I eat and diarrhea about 2-3x a week. Plus I'm pretty happy and positive almost all of the time, and right now I am just a huge bitch and everything either makes me mad or makes me cry.

I was going to call the dr. because I was scared that I had something serious, but I'm thinking I should just stay steady, get some rest and if nothing gets worse, let it pass (quickly I hope). From what you've all said... this might be my official full blown "twit" since diagnosis.

Ugh.

lucky7
04-02-2009, 07:55 PM
Hi Kahlil! Yeah, it sounds like you've hit a full-blown unfortunately. I started off a few yrs ago with a symptom here a symptom there soo when it hit full force i was really freaking out. Thats when my hubby got real scared cuz i've always been so healthy and i've always fought things off. REST is a great thing for us. Any BIG and severe changes you HAVE to let your Dr. know. This can lead to the even MORE serious problems. Good luck and sorry you're dealing with this too. Its a sneaky little illness thats for sure. :looking2:

SassyAuburn
04-03-2009, 04:37 AM
I guess what is the most frustrating is the fact that I know I might be having a full-blown flare, but because no two people have the same symptoms at the same time, a definite answer AND solution is impossible.

I wish sometimes this disease was easy... like, say a broken leg. Look at xrays...yup! It's broken! For us, they take blood to give you answers and when the bloods come back it's always "Well it might be..." or "Hard to tell...." or "We'll wait and see...."

Plus, if you break your leg twice, you pretty much know the second time it's broke. "Ow, I felt this pain before...I must have broke my leg." With a flare, maybe this one has a headache with it or that one has stomach pains, or the next one has both, or the one after that has neither but you have a rash all over and a fever. Sometimes it feels like a spinner on the game of Life: give it a whirl, and see what symptoms it lands on.

I thought I woke up feeling better today, fever down and less achy. That was till I had a piece of toast and my stomach turned into an erupting volcano. Ugh. Impatience doesn't help the situation either. It's hard to feel happy that you feel a little bit better when the bottom line is that you still feel like crap.

Have a great day everyone. And if it can't be great.... at least make it through!

lucky7
04-03-2009, 10:54 AM
It sounds like you pretty much know about your flares. Its just frustrating to you and i completely understand that. :aargh4:You're right,it can be different from time to time, or the same, or something new creeps up on you or even one or more symptoms will be gone and you're feeling good about it but,oops, you have all these other symptoms still. Its so hard because it effects EVERY part of us. I read on another post from Saysusie too that all these other illnesses and/or problems pile up on top of the Lupus so that doesnt help. I guess you just need to take the good moments and appreciate them more than ever because you dont know whats coming next. Pay attention to WHY you flared. Im so aware of every move i make,every thing i smell,every emotion i have going on at the time that i sometimes can STOP a flare from coming at all or not coming so full force. Thats when i need to lay my butt :booty:down and let things go, which is still challenging for me considering ive never been one to stop taking care of business,whether it was at home or at work. Chart EVERYTHING, it helps.I Know its hard but you'll get through it and its nice to have this site since we ALL UNDERSTAND. Please take it easy.HUGSXXXXX:hug:

SassyAuburn
04-04-2009, 09:22 AM
What is sooooooo frustrating to me is that I know exactly what brought this flare on, and it was unavoidable to me. My mother...dear, sweet, narcissistic, hypochondriac mother..... designated me to do something very stressful in her power of attorney paperwork (she's in a nursing home) and never told me. Then out of the blue I get a call saying I have to do this, requiring me to drive around for days on end, trying to get all this paperwork complete, which in turn got me stress-run down-over tired-didn't eat right, etc. And the fact is, the problem still isn't resolved and won't be for some weeks yet. I'm not as stressed about what I'm going thru but the damage has been done.

And of course, my mother still thinks I should be able to handle all of this because she says, "Well, you're not THAT sick". Ugh.

Thanks for the heads up about keeping track of what triggered it. And when too. My sister used to have more flares in the Spring than any other time.

Take care everyone!!

mountaindreamer
04-05-2009, 10:46 AM
hi sassyauburn,

just wanted to tell you "glad you are back". Jeannette has been a good source of comfort for you, and i am thankful that you found each other.

it hurts so badly when your own mom does not understand what is happening to you. so sorry you are having to deal with this obviously extensive legal matter for her.

AyahsClan
04-07-2009, 06:25 PM
What is sooooooo frustrating to me is that I know exactly what brought this flare on, and it was unavoidable to me. My mother...dear, sweet, narcissistic, hypochondriac mother..... designated me to do something very stressful in her power of attorney paperwork (she's in a nursing home) and never told me. Then out of the blue I get a call saying I have to do this, requiring me to drive around for days on end, trying to get all this paperwork complete, which in turn got me stress-run down-over tired-didn't eat right, etc. And the fact is, the problem still isn't resolved and won't be for some weeks yet. I'm not as stressed about what I'm going thru but the damage has been done.

And of course, my mother still thinks I should be able to handle all of this because she says, "Well, you're not THAT sick". Ugh.

Thanks for the heads up about keeping track of what triggered it. And when too. My sister used to have more flares in the Spring than any other time.

Take care everyone!!
Your post made me LOL! I take care of my mother in my home. We had a huge blow up late last summer that seemed to change everything, so far so good, but it was a struggle. Once when I was struggling through a summer flare she said "wish I could lay around all day". Then I'd get lectured on how important it is to stay active. DUH, gee thanks mom. I think she gets it as much as she ever will. When I told her how much the kind folks on this forum have helped me deal with lupus because they truly understand what this is like she said; "I should look for an allergy support group!" you go mom...

Condolences on the loss of your dear sister. What grief you have suffered, so sorry.

I used to keep notes on how I was feeling, what meds I was on, what seemed to be working, what did not etc. In the end there really is no rhyme or reason to my flares. The only thing that does effect the severity is a super strict diet. I don't often have the will power to stick to the diet.

MD; I haven't started on plaquenil or any of the other long term immune suppressents. My doc wanted to but I just wasn't convinced yet because I have such a difficult time with side effects and have a weak liver. Right now I am on; naprosen, welbutrin, levothroid, valium when needed for neuro muscular elasticity, benedryl as needed for sleep, pretty mild stuff right now. What we do is treat acute episodes with heavier drugs so if a virus leads to infection or complications we deal with them. Do long term immune suppressents really make a big difference? I am always looking to get off the drugs I am on. I started taking a thyroid support supplement a week ago and the effects have been very GOOD. If this keeps up I will ease myself off the provigil. I have actually been doing some sorely needed spring cleaning! Thank you for your kind heart and caring spirit MountainDreamer. I hope your not missing your daughter too much.

mountaindreamer
04-07-2009, 06:40 PM
hi ayah

so glad you are back. i don't think any of the lupus meds are good for us long term, but i do know that methotrexate is very hard on the liver, so you might not be a candidate for this treatment.

yes, i miss my daughter, but we talk often and she even sent me flowers....oh, how sweet.

i've missed you, hope you have been well.

AyahsClan
04-07-2009, 07:01 PM
Thank you, I missed you all and thought about everyone here everyday and prayed for the suffering. I had been spending my online time trying to find deals on summer clothes. I ended up on ebay and bought several sarongs, an Indonesian "Dashiki" which is an adorable simple cotton dress. I call it my happy dashiki because it is bright orange with lots of patterns. I also got one Batik kaftan for around the house.

Then my satellite Internet stopped working and was supposed to have to wait till Thursday to get someone out here to fix it but miraculously it started working today. The repair man ran a test from thier office and said this must be a fluke, I can't go from zero connectivity to the satellite to normal without something being broke. I told them maybe some space junk was in the way or aliens were to blame. lol...

wrightrs
04-07-2009, 08:42 PM
I been in a flare a while now. I known about my Lupus for several years now. I have joint pain, The back of my neck and spine aches, mouth sores. Brain fog etc

But when it's coming on. I have extreme fatgage. When I feel it't starting, I try to rest a lot. I try to take daily naps. But lately my sleep route been messed up.

froggal
04-07-2009, 11:09 PM
everytime I think I get the flare thing figured out, One pops up out of nowhere!! I definately do believe in keeping a journal. I journal everything that I ate, drank, how much sleep I was getting before, my stress level. I seriously write everything down just with the hope that by doing that I will see a pattern and at least be able to prevent it or make it less miserable!!

SassyAuburn
04-08-2009, 08:38 PM
Ayah.... your post made ME laugh. Oh don't you just love the:

"Oh I wish I could just lay around and do nothing all day!"

UUUGGHHH. A couple of my friends will rip on me about sleeping till noon and what they don't know is I have to force myself to get up at noon because if I really wanted to, I could sleep till 4pm! When I'm "flaring" 25 hours of rest a day isn't enough!!!

Oh I love your mom stories. I'd love to know... how old is she? I think the worst thing in the world to ever happen to us children who look after our moms/parents was prescription companies advertising on TV. Now my mom sees any new drug on TV and she automatically thinks she has the problem and needs the drug. You should have been there the day I had to explain to her what Cialis REALLY was for. And even then, she was convinced it would help something she had a problem with. (Even though she hasn't seen any action in 35 years!)

I have to say, Plaquenil was a wonder drug for me. After not being able to find anything that would give me energy, help my aching joints, etc. the doctor thought to try this first. Even when I don't feel good, like right now, it's still not what I was like a year ago. My current meds list is: Insulin (been a Type 1 diabetic since age of 14--29 years ago!); Plaquenil for the lupus; Welbutrin for my mother issues (LoL); Buspar as needed for anxiety; Ambien for sleep; Nexium for reflux; and occasional stomach meds as needed such as Lactaid.

I'm really noticing a sensitivity to dairy products lately. In addition to the other stomach issues I'm having. Did anyone else ever develop food sensitivities after their lupus diagnosis?

I'm off to the eye dr. on Friday to check on my dry eyes issues and make sure the Plaquenil isn't having their way with my eye vessels. Both my eye dr. and my rheumie say that none have had a case where it has been an issue over their entire career.

I agree, I don't like being on meds I don't have to be on. I've stopped taking two myself that I was put on, mainly because they weren't making a difference and why put it in if it's not making a difference one way or the other. But the lineup I'm on now I've been on for almost a year and my numbers and general health have been very good, if not better, than a year ago. If I can get through this "flare" without needing something else, which I think I can do, I know I'll be able to handle just about anything.

Well, except my mother.... and that will require Valium. :-)

AyahsClan
04-13-2009, 09:19 PM
Ayah.... your post made ME laugh. Oh don't you just love the:

"Oh I wish I could just lay around and do nothing all day!"

UUUGGHHH. A couple of my friends will rip on me about sleeping till noon and what they don't know is I have to force myself to get up at noon because if I really wanted to, I could sleep till 4pm! When I'm "flaring" 25 hours of rest a day isn't enough!!!

Oh I love your mom stories. I'd love to know... how old is she? I think the worst thing in the world to ever happen to us children who look after our moms/parents was prescription companies advertising on TV. Now my mom sees any new drug on TV and she automatically thinks she has the problem and needs the drug. You should have been there the day I had to explain to her what Cialis REALLY was for. And even then, she was convinced it would help something she had a problem with. (Even though she hasn't seen any action in 35 years!)

I have to say, Plaquenil was a wonder drug for me. After not being able to find anything that would give me energy, help my aching joints, etc. the doctor thought to try this first. Even when I don't feel good, like right now, it's still not what I was like a year ago. My current meds list is: Insulin (been a Type 1 diabetic since age of 14--29 years ago!); Plaquenil for the lupus; Welbutrin for my mother issues (LoL); Buspar as needed for anxiety; Ambien for sleep; Nexium for reflux; and occasional stomach meds as needed such as Lactaid.

I'm really noticing a sensitivity to dairy products lately. In addition to the other stomach issues I'm having. Did anyone else ever develop food sensitivities after their lupus diagnosis?

I'm off to the eye dr. on Friday to check on my dry eyes issues and make sure the Plaquenil isn't having their way with my eye vessels. Both my eye dr. and my rheumie say that none have had a case where it has been an issue over their entire career.

I agree, I don't like being on meds I don't have to be on. I've stopped taking two myself that I was put on, mainly because they weren't making a difference and why put it in if it's not making a difference one way or the other. But the lineup I'm on now I've been on for almost a year and my numbers and general health have been very good, if not better, than a year ago. If I can get through this "flare" without needing something else, which I think I can do, I know I'll be able to handle just about anything.

Well, except my mother.... and that will require Valium. :-)

LOLOLOLOL I just started taking the valium! lol oh my gosh....It helps! LOL @ wellbutrin for mother issues...lol

I have been going nuts without Internet. My super awesome son came today and was able to fix the sattelite for me. They wanted a minimum of $130 JUST TO COME. I decided to wait for DH to get home which isn't for one more week so I am really excited my son fixed it today.

My mom will be 80 this year. She is a hoot. LOL I think it has been at least 35 years for my mom too. She says being married for 23 years was all the hell she needed. She has had a long series of little dogs. After each one dies she swears she will never get another. The one she has now is a fat little chihuahua with a crooked smile from all the teeth he has had pulled and is stoned most the time because he is on barbituates for epilepsy.

There is a woman who wrote a great story she called the "spoon theory" that I sent to all my friends and family describing life with lupus. I'll try to find it.

I have had dry eye problems for a long time. I use natural tears when they are real bad. An optometrist taught me how to milk my tear ducts. I also will sometimes just have to lay down, close my eyes and lay a cool wet washcloth over them but I guess it can get bad enough to need meds or cause damage. What did your doctor say on Friday?

I think my food sensitivities have gotten worse but I don't know if it is because of lupus or years of a pure organic vegetarian diet. I am allergic to dairy but can handle goat milk yogurt. I was on rx zantac for years until It healed my hiatal hernia and esophagitus. I learned what bothered my stomach and stopped eating/drinking them. Here are things I can not eat;

coffee unless it is organic soy latte, half coffee half soy milk
all soda
citric acid which is in lots of things
animal products-all meats poultry except for wild alaskan salmon no more than twice a week I'm not sure the effect eggs are having on me. I started eating them a few months ago but just not sure.
some herbs (ginger helps but in very small quantities)
processed flours, etc.
concentrated fats like fried foods
peanut butter- tahini or almond butter is ok

There are lots of other things. If it makes me feel weird, sick or sour stomach I leave it alone and haven't needed surgery for the hiatal hernia, esophagus still healed after 20 years. If I screw up and have a coke I keep Tums on hand and take one immediately if I feel that burning.

SassyAuburn
04-14-2009, 08:04 PM
FYI,

Eye doctor went fine. He's got such a great sense of humor and gets my dry (pardon the pun) lupus jokes. He said the eyes look great. I have just a bit of diabetes symptoms in the eyes, but they have been there for almost 15 years now, and haven't gotten worse. They popped up when I was pregnant for my son, got better after the pregnancy, and now are only slightly noticeable.

He said that on Plaquenil, the first thing that goes is your ability to differentiate colors. aka: going color blind. I had no problems with that and in fact, saw color patterns the nurse couldn't see.

My rheumie visit is Thursday at noon. My main goal is to have gained weight since i was there last (I was down 10lbs in less than 6 months). I'll also ask if there is something I can take for the queezieness and nausea. I also need to ask him about a neurologist. I have one but can't stand him and hope my rheumie will tell me I don't need to follow up.

I'll keep you posted!