I'm new to this, wondering if this is flare

I had lots of stressors this month, in dx, tx and traumatic carp like the leg and tongue biopsy.. So maybe this tipped it?

My anxiety has been climbing and the non medical stuff is losing the battle of keeping it at bay...I am on no meds for it.

I went in shade sunday for 45 minutes and I got face itchy, rash on paslms, blistering on arms which went away within minutes of air conditioning. It is south Texas summer... So very hot and humid. But I became exhausted and physically ill for three days every time I go outdoor.

I did go off planquenil for mouth surgery, and they did a fast invasive neck iv as an emergency, and I cannot speak a week later... It was a chunk they removed, non cancer though!

So what triggered this? All of it? I think I can avoid most in future cept the sun.

The bills berung late is going to just happen... My husband has not put two and two together yet... He will probably figure out we can't count on my salary soon and go back to a better job I hope.

I'm frustrated putting on happy face when sick, tired, scared, broke sng juggling everything! Arg. You guys know what I mean. I tried leaning on mom or kid and they think I'm crying wolf, I only talk to them a few times last month as mom doesn't want me to spread my miser y... Sigh. She just can't cope.

So on we go.

is this my first flare? Am I no longer a lupus virgin? How the hell do u guys cope cus this crap sucks!;

14 Replies

  • It could be a flare sounds like what I experience and my worst flare was when I went off Plaquinel for 2 months. I didn't have to just did. Stupid and won't do that again.

    Stress, getting sick like a virus and sometimes I don't know why bring on flares of different intensity. I am on a very low dose of prednisone and can raise it a small amount when I get early symptoms such as mouth sores, itchy scalp, butterfly rash and increased muscle aches , stiffness and fatigue. Often it gets it under control in a short time and if not I get to Rheumatologist.

    9 years in I agree this crap sucks. I have had to disability retire after I had a cervical fusion and severe migraines. I just can't fight through all 3 but it just went through recently so it was a long process and miserable.

    I hope you feel better soon and should probably get into your doctor. Sorry your in this club.

    Hugs Tammy

  • Thanks for the info...

    I went back on it the night of surgery, so hopefully that will help. I see rheumie Thurs for my follow up on initial med/ DX...

    I have plenty of questions, and I wrote out a med history based on my " traumas" to see how it coincides w illnesses over the years...

    It was interesting to see, my big events seemed vto precipitate some sort of illness all the way back to 98.

    Don't know if that helps her or not... But I was glad to see wasnt crazy!

    I never felt so hopeless as this week...after this " attack" or whatever. I keep nthinking I'm getting used to one thing, and another wave comes in. I'm starting to feel the undercurrent pulling at me.

    18 years I've been sick in some way, spread out over months asnd months... Slowly progressing to this crescendo of the last 28 days. Maybe it's just the insomnia talking. But I'm tired. Of all of it.

    The cast doest come off for almost a month more, the biopsy messed up my tongue and I cannot talk property.. I sound like elmer fudd 😮think its permanent...

    I went to our crisis psych hospital after my psych refused to return calls,

    One of the meds was adversely reacting, and I saw his assistant, ----she was rude and unhepful, in fact thought I was drug seeking when iwas crying and falling part! I wanted off the damn thing lol I got an official.. You are fired letter. Which I showed to hospital, for help in meantime. I have no help w meds til Aug argg!

    At the crisisplace the nurses were more interested in my broken leg and pain levels. My husband is ex fireman/paramedic, hasd never seen patients get talked to the way I was that night,

    Told him it was tical in Texas for mental health, we can't " complain"

    Suffice to say, nurses turned me down BC I wasn't bad enough to speak to doc. I should have raised a ruckus but security could have gotten me. It's frustrating to cry out for help to drs and hospitals and get none.

  • Plaquenil is helpful for fatigue and skin rashes. For many, the sun (or any UV light) is the enemy. Apart from the rash, this can cause fatigue, feeling unwell etc.

    In addition, you had this biopsy which is both physically and emotionally traumatic.

    I am sorry you have not had the help you needed at the crisis centre.

    With good wishes,


  • Ah, but I kind of feel better knowing there are other people who I can talk to here

    Thank you for your your kind words

  • That is good to hear because this is the aim of LUpus Patients Understanding & Support (LUPUS).

    Be well!


  • CC

    Living in California I can agree our mental health care in the United States is horrible. My mom passed away in 2004 but she was bi-polar and from the time I was 20 I watched her get the worst care ever for 23 years, my grandmother and myself battled to get her decent care and it was so hard. I have great medical insurance and still have a hard time finding good mental health care doctors.

    If it helps at all with your leg, your biopsies, your new diagnosis and having to be off Plaquinel for a month I think bring at the end of your rope is understandable. Each one of those things would be hard and you are being hit with all at once and how it effects your finances and you seem to be a lot like me (being limited on doing things for yourself) that alone I hate worse than anything else. Add that all up who wouldn't be feeling like it is just too much.

    I had to be off Plaquinel only a week before my spinal fusion but I bet your auto immune issue will improve some as you are back on it longer. When the cast comes off and you can walk and be mobile again that should help a lot too.

    Good idea to write your questions ahead of your appointment. I am not sure but I think the UK has better medical than we do. One of my Neurologist went to school in London and practiced there. He told me he liked it better there because the FDA holds up so many things here. That is just one doctors opinion but I wonder how true it might be.

    My experience with lupus and flares is that in time you learn your body and are able to catch early symptoms which are probably different for everyone but as you learn to recognize early warning symptoms you can try to get things addressed before they get to out of hand. It took awhile but I worked with my Rheumatologist to learn what to do when I start getting those early signs. Example I no longer have to go to the ER when I get upper respiratory problems. I have a breathing treatment machine at home, I have a peak flow meter that let's me know when my airflow is not good, I have emergency dose of prednisone if I need to start it. I always follow up with my doctor but we know what happens and I am prepared to start the treatment until I can get into my pulmonologist. I also have an oxygen sensor to check oxygen saturation levels.

    Just an example of how in time you can jump on things right away. I also have medication at home if I get a bad rash. I always get into my doctors or call them as soon as possible but you can and probably will have a plan and get educated in what to do until you can get to your regular doctors.

    One last thing I am amazed how much being under stress can effect my symptoms and knowing that I try to work on stress reduction techniques. You can't avoid all stress but knowing how important it is you can try to avoid and learn so many things to help reduce it when you can't avoid it.

    Take care neighbor, I mean we are only a couple states away lol


  • Oh Tammy I'm so sorry for your family dealing with the illness and then the nightmare of the mental health services here. It has to be frustrating as a loved one trying to help and facing them.

    I ad my rheumie appt and she chalked everything up to stress or prednisone reaction. She didn't grasp, or I didn't explain well enough, the fact I came to her because I had this stuff before iwas on steroids

    ( the sun issues, blisters, ulcers, all med related she said)

    She never turned from her desk to face me, to answer my questions. I felt so nervous as the appt proceeded. And I am not one to get shy! I refused to leave the room though she came back to answer more.

    Apparently, the ultram gives me the willies, so I had to beg for something else. And she skimmed over things I said. She even said , when asked, what self care should i do?

    "Eat right and exercise," as she walked out on me. Apparently, all I need is a fdiet, I guess drinking and smoking would be okay b y her

    So I'm fed up

    After the whole circus of this month, I want to avoid drs. I will eventually find a new Dr and start over, but I don't think emotionally I can handle it anymore.

    You ever get to a breaking point? I admire you and others on here, BC I must not be that sick if drs aren't ... I m going to focus on healing both the leg and mouth, meditation, eating properly etc.

    Thank you for your time.... I will keep you and the group in my prayers

  • I am so sorry and I have heard too many stories like yours. I would definitely try a different doctor. Did you say you are on Plaquinel? Someone must think something is wrong because I do not believe they put healthy people on Plaquinel.

    I have gone to my rheumatologist before and he had told me that many things can cause a flare including stress. That does not mean your problem is stress it just means it can make your condition worse. I have also seen him for some weird new thing that pops up and when I ask if it is the lupus he will say no cause is prednisone. Not that he takes me off because I have worse problems off of it.

    I guess what I am saying is the doctor might of felt what you are experiencing now maybe helped by reducing stress and eating right but if she kept you on Plaquinel than she feels you need it.

    Remember this is a disease with no cure and it is mostly monitor and control. Some medications help a lot but I learn to think of it like Diabetes. People with diabetes have a real disease and it is very serious but you probably also know that eating healthy, exercise and stress reduction are very important in controlling their disease along with medication. Your doctor may have meant that at this time a medication change is not needed and you have to work through it. I hope that makes sense. It took 3 years to like and start respecting my rheumatologist. Did she schedule you a follow up? If not definitely get a second opinion. Also did she give you a diagnosis?

    What I am telling you is just a possibility but specialist do not always have the best bed side manner I have found out as I keep getting new ones added. What helped me with my Rheumatologist was to get his reports. I would Leave his office confused but he was very clear and detailed in his reports so I realized he did take me and my disease seriously he is just not the type to coddle his patients or spend much time trying to tell you all the possibilities of where this could go but I now realize they do not have a crystal ball. Maybe it would be good to request the report and go from there. If you still feel like she did not listen and take you serious then get a second opinion. And Yes I often feel at a breaking point especially during a flare.

  • Thank you for your long and thoughtful post

    I think you are right in some of that, she left me on the planquenil, dropped me off steroids. But wouldn't answer or give help on the pain issue or the symptoms that had originally drove me to her. The ulcers and the sun sensitive was pre steroid. I also had to drop the ultram due to a reaction... So I had to remind her for help that kind of thing

    Reports? I've not been given anything in the three visits. I was told I had uctd and to take planquenil. Come back in 6 weeks.

    I should have pushed for more time to ask what was that etc. I did refuse to leave the room til she came back to give me labs and explain it was nothing important. She said come back in three months

    She said lupus and uctd are treated the same, as she walked out the door... Ha-ha.. I cannot believe her.

    Got to laugh now. Can't be bothered anymore I'm so fed up with drs.

    If she didn't seem worried, must not be that serious though I'm guessing.

    I guess it's wait and see. I'm blessed to meet people like you who take the time to put a kind hand out for others comfort.

    You are a blessing to others Toots!

  • Just curious cc texas do you have aps along with lupus. I have a doctor you might want to try out she's in Katy Texas, Doctor Chimata, she's very understanding, I just found out I have aps, she figured it out with my help In two weeks time, I'm not sure if her just giving baby aspirin to me is right but i am going to a hematologist for second opinion, but for Lupus she would probably be great for you. I apparently live pretty close to you and I'm so sorry about all you have been through, I hope it works out for you, stay strong, it's so hard to do, we need better medical care that is for sure.

    Determined and Strong

  • I dunno.. The Dr said only uctd. My results are saying pos Ana, titer speckled 160, pos rnp Smith etc plus I've got the ulcers and sun thing.. But she said that is only stress or steroid issue.

    She said I'm mild whatever it is, so I guess I'm very blessed. I just wanted to know how to take care, and was basically brushed off.

    If I'm stressed, I'd like to get some help. Duh

    But I don't think stress brings ulcers in the areas I get them.. I think that was sorjen s that originally brought me to her. The heifer. Not real impressed with her.

    I'm about 40 miles from Katy.. But it may be worth the drive. I'm postponing the research for new drs until I get set w meds for stress, this about drove me over the edge. Literally.

    I'm closer to the med center. I think that I can find someone attached to the university hospital s... Got to see if they are in my insurance network and if are taking new patients, thus the calls and hassles.

    Thank u for the info and your time writing to me

  • CC

    What I was told is that unspecified connective tissue disease means you have some form of connective tissue disease but your body is not yet showing complete signs of the many different types their are.

    Lupus is a connective tissue disease and yes the treatment is the same I believe. My Rheumatologist told me my first visit he believed I had the early signs of lupus but also some symptoms that could be other connective tissue diseases. Problem is they can take time to completely show themselves per the doctors criteria.

    My gp put it into perspective for me one visit. I said why do I always feel horrible and hurt everywhere? He asked me what do you have? I said connective tissue disease and he said and what part of your body is connective tissue? I said ok I get it.

    Maybe we put too much on a label but when we have a disease where our immune system is attacking our own tissue and you look up exactly what connective tissue is that explains a lot. Then there is the fact that the medication we need to help can cause a lot problem.

    I am not sure but I think many people go from unspecified CTD to mixed CTD. Ros will probably let me know if I am wrong but I don't think it matters much except to your doctors what CTD you have.

    You may already know this but just in case you don't lupus is a CTD so yes treatment is to stop or slow your immune system from attacking and destroying your own tissue.

    Hey I am going through a separation with my husband now. It is horrible and sometimes a relief at the same time.

    Hope things are going better for you cc

    Hug Tammy

  • Hey got a new rheumy! She spent some time asking ??? And looking at my horrible swollen hands and said u my dear look like u have lupus. She looked at those old blood labs, ordered new test and an MRI

    She is getting aggressive with treatment too BC as I look back on symptoms and such I might have had it for 20 years. That's why I'm wiping out in such short time

    I have pleurisy, swollen joints everywhere, my feet don't work at all

    On pain pills 4 x a day, total numbness from calf down. The list goes on. This time last year I was doing breathing to calm, yoga, walking for exercise I'm so mad

    I hope the biologics work

  • Wow Tammy. My prayers are w you. That mental aggravation has to be the worse for you right now. I hope you find some peace in some way. I'm working hard at biofeedback and meditation and volunteering to keep busy.

    I decided to take your letter under advisement and start over. I'm on phone w insurance since Friday trying to get a new Dr. First pain mgmt, then go. The lupus doc.

    The one lady said I should not be going this alone, that is what they are there for. And sometimes, drs just attention right for ppl. That the ins ppl can interview the. For me. To stop the back and forth calls. So maybe that will help.

    My gp is unclear on when I just need a referral number, and not an office visit to get a referral. I think she might be milking medicare?

    I hope things go your way soon. Tanks for explaining things about uctd

    I still ovetrdid it last week and wiped out Sunday. I guess I will learn the hard way

    Since your rebellious friend


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