You probably are flaring, but I have a question for you: have you had your iron levels checked? The serum ferritin is the best lab for iron. Most women in the US are iron deficient but not severly. I don't know the best place for AI's except a rheumy that you feel comfortable with. Maybe a teaching hospital? There is a website, www.rateyourmd.com and you can check out most MD's and what patients have said about them. Good luck, I wish you the best.

Thanks Dutch, I did not think of that. There is usually so much going on with me that I dont often think of the simpler things. I know that when I was little (5-7) I was really anemic. I had to take iron shots and pills. It was just me and my mom and she worked 3 jobs and could only afford meat for us on Fridays and then it was the chicken place cuz thats where she worked and she got it half off. So I guess that caused iron problems. Then she remarried and I loved meat so much I would eat a whole round steak including sucking out the marrow from the bone....pretty gross huh!! Anyway, those days were yucky cuz she would make me eat liver once a week until my doc said I was very healthy. I still hate the thought of liver! I heard once that if you have been anemic in your lifetime that you could be easily again. It is worth a test, thats for sure! Thank you!

Last June, I was sick like this.

I just wanted to die.. (luckily I have a good life insurance policy ..j/k) Muscles ached.. head hurt.. it even hurt to open my eyes..My husband went to the pharmacy to get me the only thing that helped.. liquid Tylenol.. my best friend, as I couldn't keep anything down for 3 days.

Rest is the key with this.. it took a few weeks before I was back to my semi-normal state again..

Hugs headed your way! Hoping you are feeling better soon! :)

I have been feeling terrible lately too. It is hard to tell what is what when you are diagnosed with multiple things. Fibro can cause all those symptoms you describe, as well as sjorgens, RA etc. Just consider it an autoimmune flare, period. A few days ago I woke up feeling like I had the flu, but now I don't know what is going on with me. I think I am just in a flare too. It will pass, if not see your doctor maybe a medrol pack could help? I know lately I have had nausea, headache, just overall flu feeling too. Just waiting for it to pass.

Hey there Melissa and Allison!!! Guess What? It is 4:33 am and I woke up feeling like .... I dont know......Just great Iguess!!!!! I have 1 1/2 hours before my family wakes up and I decided to come and talk with you ladies for awhile and eat some yummy lime sherbert! Oh I never mentioned that, lime sherbert and lotsa lime pops make me feel better when I am in a flair. Maybe it could help yall also? I think it is the refreshing part of it. Its like sunshine without the misery of sunshine. I know you, my friends, understand this.

I pretty much stayed in bed all day yesterday. I slept tons. Then I was so stupid because I got fed up with the crap my husband had been feeding my kids and so I went tothe grocery store. bad mistake. I had the horrible half mighraine thing going on there, even worse than at home. But I was "Tex upping" and trying to do my best. I got some decent food for the family (our fridge is currently broke so it is frozen and pantry foods only). Then the embarrassing thing came when I was checking out. I could not find my debit card and I just knew when I left home I had it. Well the girl was nice and told me she would have someone put it in the cooler so my cold foods would stay cold and I could run home and get my card. Well I walked out to my car in the sweltering horrible Georgetown heat, sat in my oven (car) and looked through my purse again and there they dang thing was!!! stuck right in on the the outside pocket of my Hello Kitty wallet!!!! I was so mad!!!! I never park close to the store because I consider the walk exercise but thank God I parked close this time due to the nasty flare. so I went in, paid, and drove home. At least the "oven" has good AC!

Got home, my bp was 157/108. I was a little freaked I admit. The Valturna bp med has been helping so much and I had not seen a number that high as I had been on it a week. It takes two weeks to totally help but still. I went immediately to bed with the rest of my drink, and a slice of cinnamon brown sugar bread and a slice of apple strudle bread. That was my supper and it was great! I had a very hard time of it because both my boys were in my room for long periods of time before their bedtime telling me the latest Pokemon antics and they love it when I talk like a baby when they show me their Pokemon they captured and act either scared of them or act like I want them for a pet. So I "performed" for awhile and their little laugs were soothing and not grating at all to my near migraine.

I did get scared, I will tell you guys the truth. I mean my bp was so high, it was actually stroking out high, and my headache at one point was getting much worse and I kept thinking to myself, "What is the worst headache of your life supposed to feel like?" See!!!! They need to tell us this type of thing. How are we supposed to know especially if we get migraine and cluster headaches like I do. They should say "well it hurts more at your temples or it feels like a little animal is trying to knaw its way out of your head." or I dont know just something so we know if we are stroking out or not. Especially women because more women die of stroke and heart attack beccasue ...get this...we dont want to "bother anyone" and that is so true!!! Especially when you have a grumpy husband and your kids have to go to school the next day and you have no one to come over and watch them!!

Anyway, getting off course here!!! So sorry!!! I called my old doctor yesterday and he said that in Jan I had an RA factor of below 20 but in December just 3 weeks before I hade an RA factor OF 20. The rheumy only got the Jan. info. If he had the Dec. info maybe he would have cared a bit more about me. I am going to the RA board to see if they kinow if I can be dxed with a 20. I am pretty sure I can be, or at least they will give me the Plaquenel and then it will help if I possibly have lupus also. So I will be covered! Yeah!! Then I just follow my own advice to others, I slather on lotsa of that sunscreen with no spf it is made by Nutragena and has "helioplex" sunscreen for very sensitive skin. Spf also is bad for me because of the paraben I think. Anyway do that, wear pants and a long sleeve light weight shirt and a hat and glasses.... like a movie star!!! And I should be fine and dandy! I hope. Take care friends and I will be here trying to cheer and help! Tamye

Irish, I haven't had a flare like yours, knock on wood. But the headache and BP as high as you discribed I've had and it's scarey. Like you I don't want to bother anyone when really it's no bother for anyone but me. I don't have small children, I just like someone to be with me. My friend might go with me to the ER but she leaves me there. Also I often figure it's not that bad with some rest I'll feel better.

We both are stupid!! When our pressure espcilally the bottom number peks that high. GO TO THE ER!!! My brother pressure was 250/170, the machine stopped working when the ems got there. His brain exploded, blood came from his eyes, nose mouth and ears. He was in a comma a week before he died. Do you wan the last image of you, your children see is of you bleeding out of every opening on your head? Okay a little harsh, I'm sorry, but BP is nothing to play with, to hell with what caused it, get help!! Worry about cause after your bp is back to normal levels.

Another thing you can do when you BP is swallow a garlic clove. It's better if you chew it but yuck. Or you can take a teaspoon or two of vinger, pickle juice, or olive juice even, it'll drop the bp quick. Not too much cause you don't want it to drop to fast.

I know about condesending doctors and nurses, (rolling my eyes) But they are the ones with the means to help us. Remember everyone has supervisors.

Hope you're still feeling better.
xXx
Kim

Irish,
How long has this blood pressure issue been going on for you?
I have hypertension and if your blood pressure is that high consistently, you need to have your meds adjusted or have meds added. Many people can't rely solely on one bp medication. Have the doctors checked on your kidneys and heart to be sure you don't have an underlying issue going on there that's causing these very high readings? Has your potassium level been taken? Has your thyroid level been checked-- too high or too low can impact your heart rate and blood pressure.

If it's simply essential hypertension (no known cause) then stay on top of the doctors so that you get your numbers down and your heart and kidneys stay healthy.
That said, it could be a flare up. When I flare, I can get high blood pressure spikes. I've had 140's over 100's. It doesn't feel nice at all.

To lower your blood pressure over time: Please AVOID caffeine and stimulant drinks--- INCREASE your water intake. The minimum amount of water you want to drink is half your body weight (if you have a normal body weight). Each and every day, make water your primary source of hydration. Put lemon in it if it makes it more palatable.

It's said that dehydration lowers your blood pressure. For some that is true. But sometimes in hypertensives, if you are dehydrated, your blood pressure will increase. Mine does. You mentioned you have Sjogren's. Me too. You don't just dry up in your eyes and mouth. You can get dehydrated much easier than the average person on the inside too. And Systemic Sjogren's can cause symptoms so very similar to Lupus.

This is an obvious one but hard to do at first: Lower your salt intake. There is a lot of hidden sodium in things like bread, cereal, prepared foods of all kinds, fast food, etc. Avoid fast food as if it was the devil.

I've maintained a low sodium diet for the last several years of my life without any kind of electrolyte disturbance.
I was young when I was diagnosed with hypertension. Not surprising as on my father's side there's a really bad history. One of my brothers has strokes, all of my siblings have hypertension, my father stroked to death, as did his mother when she was just 32 yrs old. I say this with love-- please get a handle on this early on so that nothing bad happens to you.

As Kim says, go to the ER if your pressure gets that high again. They can give you a shot right there to lower your pressure. You "bother" anyone that's near to give you a ride.
Till you get to the doctor, lay on your left side and this will lower your blood pressure a bit.

Check out the closest Mayo Clinic to you. See if there are any rheumatologists with Sjogren's Syndrome expertise there.

Wow I wrote a lot. I sure hope things get better for you soon.

P.S. If you have a definite diagnosis of Sjs, why won't your rheumatologist give you a trial of Plaquenil (benefit-- it will lower your bp slightly). Why are they making you wait till you have an RA diagnosis before giving it to you?

I am wondering same as tomsmom why your Dr. doesn't have you on plaquinal already for sjogrens. it causes bad muscle and joint pain on its own and definately can go systemic. Hugs and get that BP looked into.. Marilyn Oh fibro is not autoimmune at least not yet.

Hi Irish. Something you need to know is that lupus and many other rheumatological diseases cause inflamtion and inflamation can affect our blood vessles (this is also true with APS). Inflamation of the blood vessles can cause problems with your blood pressure as they are constricted so blood doesnt flow through them properly. I know for a fact that my APS and Lupus affects my blood vessles and blood pressure. I get this weird thumping sensation where it feels like I can feel the blood pumping through my body/muscles, legs, feet, etc. Its like a throbbing sensation but not actually pain. Just a thumping feeling where my enitire body can feel the blood pumping in my muscles. When I am flaring this happens all day long. When I first experienced this I was along with my other symptoms of being so sick my C4 was very low showing inflamation. I was put on Steroids and Methotrextrate. After a couple of weeks it went away completely. When I dont take my MTX every week (stupid, I know) or I am flaring it comes right back. So this is how I know this is caused by inflamation in me. It goes away when Im on the right meds.....

I would BEG your dr. to try you on plaquenil for 6 months to see if it makes a difference in your symptoms. Im not sure why they havent given it to you yet. If you have a MCTD it will help you. If you only have fibro it will not. I felt like I was literally dying when I started plaquenil and within 6-9 months I was nearly symptom free. It was a miracle drug for me. I cannot tell you how sick I felt and how much better it made me feel. Also, if you have taken a steroid pack and your symptoms have gotten better this is also a confirmation that inflamation or auto immune activity is going on. It wont help you if you dont. I truely believe that trying these drugs can help a dr. confirm what is going on but its so hard to find ones who will prescribe them it seems. Plaquenil is relatively safe unlike steroids so I dont understand why its not tried more often when dr.s arent exactly sure if an auto immune disease is going on. My blood work is rarely accurate and my rheumy goes off of my symptoms now and the medication that works and makes me feel better.

Weather can play a big part of flaring as can our periods. The heat/humidity makes me sick as a dog no matter what medication I am on. This could be what triggered you to feel sick. I really hope you get answers and help soon. I would ask your dr. why they are not trying you on plaquenil especially is your test for sjrogens came back positive. They would rather have something really bad happen first before giving something to try to prevent a bad thing from happening (been there when a stupid dr. told me I needed to have a stroke, heart attack, clot, etc. before he would treat me for APS. It was a complete JOKE). Hang in there, hon. PS- Have you been eating anything differently or taken any supplements lately? This can also affect our bodies. I have made myself very sick from certain foods and supplements.
Hugs

Hi guys!!! Thank you all for answering me! I am just now able to answer. Its been a tough couple of weeks for me. To put it simply, which quite honestly is something it seems I can never quite do....I have felt like I was on the verge of losing my hard won sanity. I found out that I had that blockage in my left renal artery and then went to the other radiologist and was told that they wanted to scan my carotid artery and my legs for possible clots. Joy. Then I get my blood/urine tests back a couple of days ago and find out everything is all hunky dory inside of me. Well everyone else is smiling so I put on a big smile and came home and "celebrated" not being sick.

Went to bed at a fairly decent time and woke up (should say...GOT UP) 2 hours later feeling very ucky. I honestly felt as though I were going to die. I felt like I was experiencing a drowning sensation as both my ears felt so stopped up. My messed up left ear that is always suffering and has been for 4 years had so much liquid in it that every word I said it popped along with it. My eyes hurt so bad I had to keep them shut and hardly ever opened them. My body ached so severely it felt as though it had something heavy dropped on top of it. All my lymph nodes and parotid glands around my face, neck and collarbone ached and were so swollen. I could barely get out of bed for anything. Just to go to the bathroom. I could not eat because my throat felt scratch and very tight like I could not swallow. All I had yesterday was 2 small cups of tea and a frozen lime pop. My feet felt like frozen pops themselves and I had to put thick socks on them and keep them under 3 blankets. I knew my Raynauds was acting up very bad, This is the first year that my Raynauds has bothered me period. I dont know what is going on!

So the ANA test came back negative so all the medical community can say "Yeah Tamye doesnt have an autoimmune disorder!" Well I know I do have one (besides the Raynauds, Sjogrens, IBS, and fibro I already do have).

I would very much like to try the Plaquenel because everyone says it has worked so well for them. I was on Prednisone for a while and I swear that drug was my miracle drug (well, next to Lyrica) I totally was pain free(well not totally, but you guys know what I mean) and plus I actually had energy!!!!! That was so wonderful feeling!!! I could sleep and feel completely normal! But then the wonderful rheumy who thought I was "doctor shopping" (I had seen 3 other rheumy's and one was out of town in the past 5 years) took me off the Prednisone and life has never been the same since. I know Prednisone messes people up and its not good for you but it sure does feel nice to take it and forget you have medical issues for awhile. I am going to a new doctor and will ask that they test me when I am having a flare and to do my sed rate and RA factor at same time. Maybe I will find something out that way. Well I have 2 more scans today and tomorrow I go in for my angiogram and hopefully that will be that for that stuff. Thanks for caring!