I'm from the Kansas City area and I was diagnosed with "non-specific connective tissue disorder" earlier this year, although I'm pretty sure it is Lupus like my sister.  I've even got the beautiful butterfly rash.  I'm pretty sure I've lived with this for a long time and I just my first major crisis, if you will. 

I'm hoping to learn more and get better.

Okay, here is what is going on with me.  I was diagnosed with fibro about a year and a half ago.  I accepted that dx and moved on with life as much as possible.  Then, this year some crazy things happened that made me re evaluate things a little.  I have always dealt with pretty bad heat sensitivity that usually results in migraines (went to the ER once because it got so bad).  I have always had really sensitive skin and break out regularly on my hands, but lately I have had a roaming rash on my neck, shoulders, chest, back and stomach.  It never goes away, it just moves around and it itches extremely bad if I sweat.  Tendonitis and bursitis in my shoulder with no real cause, scarring on my retina with no injury to my eye.  And the clencher was when I got the rash across my nose and cheeks.  I took pictures of it, got a referral to a Rheumatologist and commenced writing down every thing that I had been dealing with so that I wouldn't forget anything when I got there.  (These things are in addition to a lot of other things that had been going on for years like extreme fatigue, IBS, joint pain, migraines, insomnia, etc.)

I got to the doctor's office and talked to the Rheumy for a little while and handed over all of my info and the picture of the rash - which, of course, had conveniently gone away.  He quickly perused them and set it aside.  He told me that because my ANA was negative, he can rule out Lupus.  Not to mention he said, "85% of the time I can take one look at someone and tell if they have Lupus as soon as they walk in the door."  He told me it was just my fibro causing all of these symptoms.  I asked about the rash - "it can be caused by many things."  I asked about the fact that all of the information that I had read said that on average it takes 3 or 4 years to diagnose someone with Lupus and he had the nerve to tell me that wasn't true! 

I left that office feeling so discouraged that he was such a jerk I could have cried!  I guess where I am going is this... should I just take this guy's word because he is supposed to know what he is talking about or should I persue this further?  Everything is kind of complicated by the fact that we have Kaiser Permanente and the only other Rheumy is located in the same office with this one and they are probably not going to go against each other.  Ugh! 

I am so sorry about the rambling and I appreciate your time and opinions.

Rachel

 I would like to introduce myself to everyone.  I've been reading all the threads and thought it was time for me to join in.  I was officially diagnosed with Lupus about 6 months ago.  I’ve been experiencing various Lupus symptoms for two years.  I have taken all medications for Lupus with no success.   My doctor is gjoing to start me on Rituxan infusion as soon as my insurance is approved.  Once I start I will keep everyone updated. 

If anyone has had this treatment I should would like to know what to expect.

Regards,

Kasey

I thought you were in New Zealand and it looks like you are.  Are you in / near Christchurch?  Are you and all your family and friends OK after the earthquake?

We worry about our pals and just want to know you are OK.

LindaO

On monday, I did a quick turn, and when I stepped down I felt a sharp pop and my toes went numb, and I could not walk, because the pain was so bad.

I went to the er, because I thought I broke a bone. But x-ray showed no broken bones. The doc says I proably pulled a tendon. I can not walk, I am using crutches. 3 days later the pain is better. I will see my gp tomorrow for more x-rays, cause er doc said it could be a hairline fracture, and not show up for about 3 days.

My question is does anyone else experince pain in the foot, could lupus cause this pain.

My name is Ingrid Thomas, I live in Raleigh, NC. I am a 42 year old, divorced mother of four. I work full time and I am very active in my church. I just learned yesterday, I may have lupus. Back as far as 1995 I remember going to the doctor complaining of achy joints. After I had my fourth baby I began to be what I called "fluy" all the time. I saw my family doctor, gynecologist, neurologist in search of answers. Finally in 2000 my neurologist told me I had Sjogren's Syndrome.  I have been suffering with awful migraines since I was a little girl, but recently I have had diffent kind of headache. Sharp pains in my head with lots of pressure, like my head will explode when i bend over; numbness and tingling like there is fire on my arms and legs; fatigue; chest pains; swelling in my face, feet, legs and hands; confusion; memory loss; trouble communicating thoughts; irritability; body tenderness. Since she helped the first time decided to see my neurologist. I had an MRI which showed some small white spots. She strongly suggested I find a Rhemy. After reviewing all my past records he advised that very few people have primary Sjogren's and he felt I may have Lupus. I was floored! After all the years of testing and doctors, being told I had Sjogren's and finally learning to cope and understand that to be told it may was Lupus is difficult. I guess the unknown is what is so scary. I decided to join without a diagnosis in hopes of meeting someone with a similar story that may be able to ease my mind. I am going to have a sleep study and some cognitive testing done before I see the Rhemy again on September 27th. I am not sure if he'll call if the tests show Lupus or if he'll just wait till my appt. He did prescribe 200 mg of Plaqunil twice a day.

Thanks for "listening" Please pray much for me!

Ingrid

ok i had an appointment at mayo today. the reumy doesnt think its lupus but has to wait for test results that come in tomorrow. she thinks its Autonomic Neuropathy. but that can be caused by lupus!?

she doesnt think i have lupus cuz i dont have rashes or joint swelling. i DO have alot of joint pain. (among other things) Do any of YOU (diagnosed with lupus) have joint pain but no swelling? do anyway of u not have rashes? i need some answers ASAP please!

I also believe I have fibromyalgia along with the Lupus. I have read that up to 30% of the people diagnosed with Lupus also have fibro. Before I had the biopsy done, I was having severe body aches....like I had NEVER had before. My family doctor put me on Savella which I, in turn, named the miracle pill. It was the difference between night and day! The body aches completely disappeared!  Savella is a medication used for fibromyalgia. Unfortunately, my blood pressure skyrocketed while I was taking the Savella so I had to stop taking it. The rheumatologist wanted to put me on Cymbalta. Since I have been on short term disability for over 16 weeks, my company has stopped my insurance. So now Im paying everything out of pocket and not working. Cymbalta is over $300 for one month. Looking into the patient assistance program.

Anyway, it has been an uphill battle to a diagnosis. Im just looking forward to some relief! Does anyone here have the Lupus diagnosis and have a negative ANA?

The hardest part of all of this is not knowing what the future holds. Any info on assisting him and his teachers to understand and best manage his condition is welcome.

Thanks all

Brieann

I am a new RN(graduated in May), mother of 4, wife of 18 years, clinically diagnosed with Sjorgren's Syndrome and Fibromyalgia a bit over 2 years ago, with SLE symptoms. 

I say, I have lupus and Sjogren's, but the Rheumatologist says that there are not enough clinical markers to officially diagnosis me with Lupus yet.

I can now see that I have had an autoimmune disease most of my adult life, and my lupus began as Discoid Lupus and converted.  I lived with that "special" rash on areas of my face and scalp for years, but we always thought it was allergies and no one picked up on it until things got really bad.

In the Spring of 2008 I woke up one morning with arthritis pain so bad I couldn't hardly walk or move my arms.  After ruling out several other things, my dr. ran an ANA which came back positive and sent me on the specialist road of rheumatology. 

As it goes, my first rheumo was a blazing idiot (no explaination needed), so we switched and loved my new rheumo only for him to have a medical health issue and retire before my 2nd appointment.  So two years later a new rheumo and finally someone who was willing to try treatment.

My PCP put me on Celexa about 6 months after diagnosis to help with my pain. While, for much of my life, I have taken ibuprofen like candy, the rheumo. chose to try alternate NSAID's for pain...so I tried a couple, ruled out the ones that didn't work or had nasty side effects, and thought we were doing well when my heart had its first PVC episode. 

So, halter monitor, a couple of ER visits, and a review of my meds...no more NSAID's and my heart calmed down.  That is until a good strong cold front came through last year and sent it back into PVC's.  However, this time it was a bit milder and easier to deal with.  Cardiology work up indicates that the issue is benign and probably inflammation related.  Once I convert it seems to be just fine as long as I don't take NSAID's, that is until the next strong cold front comes, but I have a few months before that happens.

So for pain I take Darvocet.

This rheumo decided that we could try Plaquinil and I was willing. 

I have to say, 6 months after starting the Plaquinil I am so much more at ease, have less pain, less painful episodes, and have been able to cut back on my Celexa to half dose and it seems fine.

At my last appointment my rheumo mentioned a sleep aid...and I thought nah, I'm sleeping fine.  That is until we thought about how much Darvocet I was taking (still only about 1.5 pills on average a day so not too bad) to help with the pain at night and help me sleep...and realized that I am not sleeping well, but I am sleeping a lot.

So, I called and she has prescribed me amitriptyline.  As an RN, the first thing I do is look up a med.  So I know what it is, why it is prescribed, what it does and doesn't do, what side effects it has and what it should and shouldn't be taken with.

I'm a bit shocked that she prescribed another anti-depressant...but as I've seen with the Plaquinil and I know from work...each medication reacts differently with each individual.  Adaptation is the key, and if I can sleep good for 8 hours, rather than sleeping poorly for 10-12 hours to make up for my poor sleep, then Okay with me.

To be sure, this SUCKS dealing with a rheumatoid disorder....and all that comes with an autoimmune, inflammatory, connective tissue disorder.

But, in the last 2 years (almost 3) we , as a family, have learned to adapt...and that is the key.  Adaptation.

I was so happy this week because for the 1st time since January, I felt the flare up may be easing up.  My husband and I went out for the first time this weekend just roaming.  Loved it so much.  But during the first of week I got a extreme shock at work about shutting our office down and me being transferred to an office 2 times as far away.  Then last night I was accidently scared by going out of a darkened room and walking right into someone.  Needless to say, it set me off into letting my husband have it for everything that ever bothered me.  I was so ashamed but it seems I can't express myself in a calm manner anymore.  I called my neurologist to see if maybe the lupus was attacking my brain/nervous system or was I just an awful person.  I asked him if the Plaqenil (?) or combination could be causing this.  I weaned off the Prednisone about three weeks ago.  I'm still in pain but have been trying to deal with it and Advil (2 in morning) and 2 in evening.  What is wrong with me? 

The neurologist put me on Xanax until I can get in touch with my Rheumatologist tomorrow.  He thinks I need a psychiatrist who can deal with the depression issue better than the rheumatologist can.  Does lupus make depression worse?  Has anyone dealt with this?  I don't want my husband going through any more hell with me than he has too. I love him so much.  Guidance or insight into this type of problem would be greatly appreciated.

My mind keeps going from 10 years old (1970) to my youngest son graduating from High School (1999), for some reason I am unable to remember anything before age 10 when I went to live with my grandparents.  The 70's, all would have to agree, had greatest music, cool baby doll swimsuits, neat hip hugger bell bottomed jeans in 100 different colors, and groovy shag haircuts.  My cousins and I spent long summer days at the public pool applying baby oil until we slid off the plastic lounge chairs.  If we weren't getting dark enough fast enough we added iodine to the baby oil, while putting lemon juice mixed with a little peroxide to lighten our hair.  Luckily I married a man that also loved sun, water, and sand.  As I got older I used more sun screen and more shade was required, but still enjoyed being by water, out at a festival, baseball game, or open air concert.  When my son's were young we loved parks, the "attack ducks" at White Rock, soccer,  bike rides, Six Flags, and water parks.  As our boys grew we loved watching their sporting events, band programs, Friday night footballs games ... yes, it's very true that football is very important in Texas.  Our oldest son was in the band (Tuba Section Captain) and our younger played right tackle on the varsity when only a freshman.  Every summer was a week at Caddo Lake on the boarder of Texas and Louisiana.  It is so beautiful with the cypress trees, spanish moss, orange trumpet plants, wild blue iris, and "herds" (as my youngest called them) of butterflies everywhere.  The butterflies on the lake roads were so thick in the trees, when they all flew away at once you'd think it was Fall and they were leafs.   Leisurely days following yet another lake road in a bout much to small for four, but we gladly made it work.  In the evening we cooked out, and sat on the dock while the boys fished with biscuit dough ... Catfish LOVE biscuit dough. 

Of course it was not all rainbows, flowers, and herds of butterflies.  On the 3 hour drive to/from Caddo I had to listen to my husband tell our oldest son to "Get Your Knees Out Of The Back Of My Seat!!" over and over.  With me saying "Joshua trade places with your brother" only to have Nathan cry out "I don't want to sit behind Dad cuz I have knees too!!"  Or one of the boys complaining that his brother was TOO close, was looking out his window because there was nothing good out their window, or someone was breathing too loud.  But loving the feeling on Monday morning of the tired that only comes from a well spent weekend.  The down side was I always knew I'd have some reaction to, what I didn't know then.  I'd have odd rashes, couldn't move my fingers, every joint hurt, and so on and on.  However, in a week or so I'd be better.  As our son's got older we included trips to Galveston and Barbados.  We, except my blonde Welsh husband, inherited olive skin from my Spanish Grandmother's so didn't have an issue with sunburn.  Regardless, to my son's irritation, I still insisted on applying and reapplying sunscreen.   

Sorry for the ramblings!!  Now, I'm far from witty, caring, loving, giving, fun, but I am still stricked my boys would tell you ... however, I don't have a lot of leverage now that they are married with children of their own.  It's no fun to ground people that WANT to be sent to their room for hours.  I am now reduced to seeing my granddaughters at the pool in pictures.  I have to tell them that I can't be out in the sun or heat.  They only see me in the confines of air conditioning.  I have had to cancel another February Barbados vacation.  I haven't been to Caddo Lake or camping in almost two years.  I can't do any of the things I loved about life!!  I work all week, so by the weekends are spent sick.  I try to get out, but the pain from the tumor in my spinal cord, stinging, and itching is just not worth the trouble.  Not to even mention the pain when walking, the head ache, splitting finger/toes, and trouble swallowing.  I know a lot of people have things MUCH worse than I do, but I can't seem to see anything outside my prairie dog hole right now. 

Ok, I'll stop piss'n and moan'n ... that's for the place to come when no one else gets it  

About 2 years ago my head starting itching uncontrollably.  I mean INSANE, affect your whole life itching.  As my husband is self employed and I am "under-insured" I spent several months making sure I didn't change anything outwardly in my care regimen and then several more slowly changing everything before I ever went to the doctor (my doctor who I've been seeing nearly half my life now).  During this time I also developed hives (first time in my life ever) on my neck and chest (perhaps on my head? who knows--I do know by this point I had big sores all over my head from the scratching.)  The doctor of course gave me some antihistimines and sent me on my merry way, even though I already knew this was not something that was going to resolve itself quickly, and I remember telling him it was going to be very difficult for me to take antihistamines on any regular basis because I was already so darn tired all the time.

Several months later I went to see the Nurse Practitioner who opened up an office right up the street from me to see if she had anything different to say.  She ran a full panel of allergy bloodwork (cats and bluegrass, that's it) and again sent me home with antihistamines.

Months are passing by and I'm really starting to notice and feel the effects of my seriously waning energy levels.  I had no energy to volunteer at the kids school like the previous year, I had no energy to ride my horses (which is something I love)--and these are things I love to do, who can mention the shape my house is starting to get in.

Over this same time, I was noticing my hair falling out, LOTS of hair.  Not in big clumps but from all over my head and every day.  Although my itching is now sporadic the hair loss is constant.  Today I have approximately 1/3 of the hair I had 2 years ago.

At this point (maybe 1 year from the start of head itching) I have zero energy, I have hives on my neck behind my ears every day, I sporadically have hives all over my neck and chest, I will itch uncontrollably somewhere like say my knee and when I scratch I will break out in hives there as well (these hives go away within hours) and hubby is starting to comment on amount of hair in shower drain.

Also about 1 year from what I consider the "start" I got a winter head cold that immediately went into my chest and bam it was pneumonia.  Wow, first time I ever had pneumonia and I felt lucky to have this nurse practitioner who didn't bother with chest x-rays etc. and just medicated me and sent me home.  I did my full 2 week course of AB's along with 2 rounds of prednisone (man that stuff makes you feel terrific doesn't it?) and although I wasn't completely well, I did indeed feel better.  Well, for a couple of weeks anyway.  And then I was back at the doctor, with pneumonia AGAIN.  I have really never stopped coughing and feeling kind of short of breath since, even though my O2 levels are always fine.  I spent the entire winter sick, whatever my family got I got WAY worse, and it felt like it would never go away.  Even a 24 hour stomach virus lasted 3 days for me, and then came back like 4 days later!

Things were getting out of control for me at this point.  My two little boys and lots of animals were getting "bare minimum" from me and my house is a disaster.  I'm drinking pot after pot of coffee trying to have to energy to do laundry (not even carry it up and put it away, just get it washed and dried!) and make meals for the family.

Summertime rolled around and I was so thankful to not have the pressures of tight schedules and set bedtimes... There were good days and bad days.  I would get up with a list of things (and it was no great list let me tell you, I was already understanding the extremes of what I tried to tell myself was laziness) and even on the good days, I could only accomplish maybe half of what I wanted to do.  I got another really bad cold that of course instantly went into my chest and lasted for weeks and weeks...and I'm starting to realize that when I get sick I get REALLY sick.  Like completely knocked down, need to stay in bed sick.

I'm so darn tired and out of it...

Hubby is also really pushing me to see the doctor about the hair loss (he thinks I'm lazy too, but this is something he can SEE) so late this summer I head back to my GP.  He says "well my goodness I'm pretty sure you just have thyroid problems" and I'm flying high thinking we'll get the bloodwork back and I'll start taking some pills and in a few weeks I'll be right back to my old self-you know, someone who could keep up with her kids activities and do fun stuff with them and cook dinner and keep a semi-clean house and do stuff *I* enjoy too.  The doctor had also asked me about depression, and I told him I have always been a relaxed, THANKFUL person who might be suffering some because I feel like crap all the time, but that I didn't think depression was the big issue here.

While I'm waiting on the thyroid results I take a good hard look at what has happened to my life over the past two years.  I realize that if I had had a "real" job, I would have been fired.  I realize my house is truly embarrassing because I can never find the energy to clean more than 1 or 2 rooms, I realize my kids are missing out on so much because mommy can't summon the energy to take a shower some days, I realize my dogs (a real passion) are eating and going outside and that's it, I realize my horses haven't been ridden since all this started...

Then I get the lab results back and it is NOT thyroid.  I'm devastated, I go through the whole "I am just a lazy worthless blah blah and I need to pick myself up and get on with my life"  So for about 2 days, I did.  I pushed myself to clean, I had friends come over for a bbq, I took my kids tubing up in the mountains... and I got sick as a freaking dog.  Went to the doctor right away this time (yeah I'm slow but I'm learning) and what do you know, there is already rattling in my lungs.  While I'm there I push him on the other issues I had been to see him about the week previous.  What about the rash on my neck? What about my hair loss? What about the fact that I can't live my life because I'm so stinking tired?!?!  (Um because when thyroid came back fine I got the old "you need to exercise and eat right" spiel).  He gives me antibiotics and says he'll "think about it". 

The next week I am not any better and decide to go see the nurse practitioner near me because I feel like she will listen.  Oh, and also after the week on antibiotics my neck rash had once again spread completely down my chest).  She gives me prednisone, hydrocodone and a stronger antibiotic and decides to run blood tests for vitamin deficiencies and ANA.  Once again I'm feeling great thinking we are on to something (and once again that prednisone is making me feel like my old self again AND clearing up my hives) and then her office calls yesterday and says "your bloodwork looks fine, call us if you need us."  WTH?! I realize my biggest complaint is being "run down" but there ARE physical manifestations going on here.  I have a high tolerance for pain, but I have developed a very low tolerance for not having the energy to even do anything I enjoy!

I should mention here that I do NOT have debilitating joint pain.  Over the past 6 months I had noticed some stiffness in my thumbs (I thought I had just done something or needed to lower my computer time) and achy knees (written off to the 20 lbs I've gained over the past 2 years sitting because I don't feel like doing anything).  Certainly not anything I would go running to the doctor for (under-insured, remember?) 

I also pretty consistently run a low-grade fever (right around 100-101) which I just happened to notice because I always do a "control check" before I take my kids temps and then continued because of the general achiness and because my hands and feet are always like ice cubes.

Now the doctor is saying the word that strikes fear in the heart of every person who has to pay for the majority of their healthcare: SPECIALISTS.  I need to see a dermatologist for my skin, a sleep specialist 'cause I'm tired, an allergist and a gyno for my hormones. Is it really possible that all the stuff happening to me is unrelated to the other stuff?

The reason I am here is because in my own research, the only thing that came up consistently when putting ALL of the symptoms together was lupus. :-(  I would sincerely like to know what this group thinks.  Keeping in mind of course that anything is possible, what is your take on everything going wrong with me? I have held off so long on seeing doctors about this because I was worried about the financial burden it would place on my family.  I truly can't afford to see 5 different specialists looking for individual diagnoses IF there is ONE reason all this is happening to me.  I am truly ready to feel better though, so if that's what people like you (who KNOW, who are living with this and been through the dx process) think I need to do, I've got to do it.  This cannot continue, I need my life back!

Oh, as an aside, I got silicone breast implants 3 years ago. Told of course that there was never any findings of silicone breast implants causing lupus, but you better believe when lupus was the consistent finding in my symptom research I started thinking about it...

Am I crazy? Am I crazy to think this might be lupus? Am I crazy to think there is no way I suddenly developed all these unrelated problems? Am I just crazy and the only specialist I need to see is a psychiatrist?  HELP ME PLEASE!!

is it inevitable that one gains weight ???

i am 28...very active...work out 5 times a week....and try to stay clear of fatty foods when i am hungry...just got diagnosed with cutaneous lupus

any suggestions for keeping weight off...someone said drinking lots and lots of water ??????

I was diagnosed the end of July and I have my first appointment on Sept 3rd.  I am anxiously awaiting getting in.  I have many questions.  I've read quite a few great books that have helped.  I just can't believe how every day is different and a new challenge.

My family is super supportive but I haven't told my kids yet.  I have a 6 year old daughter who is VERY dramatic and tends to be easily upset and a two year old.  I'm not quite sure how to tell my 6 year old.

I'm super glad I found this forum.

I've gotten alot of good info from this site.  i love it.  thanks.

--K

My pcp was extremely upset.  He sent me to get a second opinion. 

The 2nd rheumy did a ton of workup, I saw him last night for my follow-up.  I don't have lupus!!  Or and IBS disease!!  I do have (he believes) an inflammatory arthritis.  He's treating me with sulfasalazine (sp?) to see if that makes a difference in my pain levels.  I see him in 6 weeks to see how I'm doing.  Just in case I'm unable to handle the sulfasalzine he gave me a script for panquil to try as well.

Even though I was never sure what I had, this forum and the people that make up this wonderful place have been a great shoulder to lean on and I would like to thank every single one of you for your patience and support!

Without going on and on, I just want to know if these ups and downs are common?  It seems that each of these bad flare ups take a little more out of me and it's harder to come back from them completely. I love my job and am greatful for the reason to get up and going every day, but it's getting harder.

Any motivational words would be great.  Thanks

Piff

I already have Bipolar Disorder and have been stable with that for almost six years now. In fact, I work as a Certified Peer Specialist in a psych facility with women in crisis and run a peer support group for outpatients.  For the past year, I've been getting sick a lot with a whole slew of symptoms.  For the past month, they've been so intense that I've been to the ER three times and I have missed more work than I've done. 

I am SO tired. I hurt all over.  I'm light-headed, dizzy, nauseated, and disconnected.  I have had a skin thing going on for seven months - horribly itchy, burning bumps that get bigger and redder with time and leave thick, scaly scars.  Headaches from hell, itself.  Now, I'm starting to feel numb in my arms, legs and face.  I keep seeing things move out of the corner of my eye.  My neck is on fire. .... and all I want to do is sleep. 

I don't know if I'm more afraid of being daignosed with Lupus or not being daignosed.  At least, if I'm dagnosed, I know what to do and what steps to take.  I know what I'm dealing with.  If not, then we're in for a whole other slew or tests. YAY!  My favorite.

Well, at least I got this all down before my computer crashed.  Thanks for 'listening'... you know what I mean.

This year, I'm running my first marathon to raise money for lupus research. Please check out the blog I started to share my experiences with lupus and training. My primary goal is to spread awareness of the disease and the fact that your condition can improve and people with lupus can live rich, productive lives. If you can, please also consider a contribution. Feel free to ask questions in the blog comments-- I'm happy to share, as I felt very alone in this in the beginning.

lwolseekaterun.blogspot.com

Thanks,
Kate

So anyway, I am back on...I am experiencing my first flair since my original diagnosis. Which is why I am frustrated and scared. I am sad too. I thought I was all better, perhaps the the Doctors were wrong initially and that I am or was actually not really sick at all...WRONG!

This is my story. In the Spring of 2008 I was sick, fever constantly, rash, vomiting, joint pain (couldn't even lift my arm to get medicine out of my kitchen cabinet), hair falling out, watery eyes--like I was crying but i was not, blood pressure through the roof. My PCP ordered BW because this was just not right. I was always healthy (I would have aches and pains, but I always just dismissed them). My blood work came back positive for Limes disease, Fifths Disease and Lupus. I was referred immediately to my Rhumotoligist. I was started on Celebrex and Soma for sleep. After that summer (of 2008) which was a rough one as I was getting used to the whole prospect of my illness and limitations, I improved. I took my medications daily, was on a healthy diet, my sleep improved and I began feeling kind of back to myself. I returned to the gym, I was off of work for about 1 month, but was able to resume, and things kind of fell back to normal. And that's how it was for the past two years. Relatively Normal, minimal symptoms and back to routine. My diagnosis is Mixed Connective Tissue Disease, I do not meet all markers of Lupus.

I stayed on my medications for two years. In June of this year I began having stomach issues and a bit of swelling in my ankles. My PCP, who does not really believe in lots of medications, decided that I should wean off of the Celebrex and see how I do without it. I had a recent visit with my Rhumy who was not so certain that I should be off of an anti inflammatory and kind of was encouraging a new medication, which I declined (why would I try something new? I was doing really well!). So, I stopped the Celebrex two weeks ago. And here I am...my very first flare. I started getting headaches first, really bad ones. My blood pressure shot sky high again (despite daily medication for that) and I was feeling dizzy, feverish and tired. This is where I am confused. My joints hurt, but not as bad as they did initially. What is happening now is that I am swelling everywhere. My feet and ankles blew up to three times their usual size. Fingers, face, legs and arms are swelling too. What is this all about??? Anyone else experience this?? My PCP put me on Mobic on Friday, but I have had very little improvement (maybe a little less pain) but the swelling is just getting worse. And I am scared. I have been extra emotional too. I have cried myself to sleep for a few nights now..I thought I was better reality bites. Thanks for listening.

I will have to have faith in my doctor, who I adore, and believe she is doing what's right.

Down, scared, hurt all over, can't sleep, and still have to work

Being told that stress and sun are what have triggered this severe of a reaction worries me. I live in Central Texas where it is always at least 95 degrees. As well, with a limited insurance plan and trying to stand on my own, there is no way around stress. 

I'm glad to finally have answers, to know why I have skin, joint, and circulations problems. To know why I forget things, gain and lose lots of weight at a time, and why I get so sick all the time, but knowing only helps so much. 

I just want to know how to keep some of these rashes at bay. How to make the pain and embarrassment of them lessen. I want to understand why I have this disease and nobody else in my family does. There are just so many questions and worries that come with the knowledge. 

I was just diagnosed this past Thursday, after months of "not feelng right." The exhaustion has kept me from living normally. I just got married a month ago, and I have a son who is 8 years old. I'm an executive assistant and my job has quite a lot of stress.

My doctor has told me to stay home and rest for a week. How long does it typically take to go into remission? I'm taking Plaquinel. I've lost my appetite and have already lost 5 pounds in 5 days. I've slept no less than 14 hours per day in that time too. My job is not going to be happy that I'm out and I don't know how long they'll put up with my absence.

So many questions, such a scattered, unfocused brain!

Thank you,

Kathryne

I am researching doctors so I can get started out with a really good one (not that I don't like the one I have, but he really rushed me and I would prefer to have someone that listens). I am in North East MA, any suggestions?