NEVER ENDING FLARE?

[KRNLMBCH]

What started as a pain in my jaw on the right side of my face two years ago has led....over the entire two years to numerous Dr. visits, Many different Specialist Visits, 10-15 prescription medications, biopsies, MRI's, CT SCANS, on and on and on.

Since that day in March 2013 when I finally went to the ENT about the "jaw pain" and pretty much the day the life I once knew, the person (ME) I knew very well and everything that was familiar about my life DISAPPEARED. 

Seeing Doctors, having tests done, etc. is my only "social" life.  I use to not leave my house, lately, I don't leave my bedroom. 

I have NEVER experienced a "remission" from any of my symptoms.  I deal with the same nasty, painful, depressing, symptoms every single day (and ALOT of nights). 

What I've read about Flares, I'd say, that has been my ordinary everyday life.  Somedays flares may be extreme, and I do get some breaks when flares are mild.

Just wondering....HAS ANYONE ELSE BEEN IN A NON STOP FLARE FOR YEARS?

I disappear from the boards a lot, because I get so hopeless and I can't convey in words the SADNESS regarding how much my illnesses have robbed me of...specifically, ME. I don't even recognize myself in the mirror, nor in personality.  I was always a fighter, a go getter, hyper, couldn't sit still...now that's all I do.  There seem to be so many different areas affected, and one Dr. doesn't know what the other is doing and i feel stuck on this merry go round full of health care professionals that don't seem to GET how much MORE this disease takes from us than physical symptoms. 

WARNING:  In isolation so long, that once I do start talking..I get carried away.  Sorry to ramble on.

Has anyone else experienced what seems like one long ongoing flare? And a complete loss of ANY QUALITY TO YOUR LIFE?

[kc2015]

My first "flare" lasted 3 years then I was in,dryness remission for over 5 years. Im,back again after that time but I had 5 long years of easy timed. So there is alway hope!

[warmwaters]

I've never been quite sure about flare versus not flare, but I certainly can say that in the 6 years since I've been diagnosed, the overall trend has been a decline in function.  I've never really had any periods of improvement, except when on immunosuppressants. Unfortunately, they are not a good option for me, as I get infections easily when taking them.

Just before I was diagnosed, I had a fairly senior job in a big company, did multitasking like a champ, worked long hours, and was constantly learning new things. Now I have very limited energy, can only walk for brief periods of time (on a good day 15-30 minutes), have a hard time driving distances, and have a great deal of pain. I also have a lot of cognitive issues, which makes even sedentary things hard to do.

I've only got a few friends, and they have to come to me. 

It is very easy to be depressed with all of this loss.  Everyone will have a way of approaching this, but you need to find ways to see it as worthwhile to hang in there. Mine mostly have to do with family, but I also try to see myself as contributing to the world if I try to help on a support group, or other small things.  I've learned something about patience (I was never very good at it), and picking things that are the most important to me. 

I wish it were easier.

[cccourt1942]

KORNLMBCH:
    1st and foremost:  Ask for support.   You need not read threads which depress you.  Ask for specific help...and if one of us knows, we will respond.
    2nd: PLEASE remember: we are all in this together.  If I had tears, I would cry for your plea.  When I got my dx, I sat for what seemed like a month...with no TV, no visitors, etc.  Just thinking.  (not crying: Haven't cried in over 10 years.) In truth is was less than 3 days.  I grieved, I mourned, I questioned, I cursed, I prayed, I apologized, I was in agony.  Then--I woke up and thought: I've had this for nearly 30 years. (I mark if from the first time an eye doctor asked me about my eyes.)  I thought, well ...with medication, maybe life won't be too different.  Well...I was wrong there too.  But life did go on.  A new version. 
    I was tempted to private message you, but I would like for others to join in to tell you to talk to us.  We can't offer a shoulder (which may be all you really need) if we don't know you are here and need us. 
    The last real flare I had lasted about 4 months and was prior to my dx.  I thought the pilocarpine alone helped me come out of it as I actually had some moisture in my oral region.  Also...knowing there was really something wrong helped me.  I kept thinking it was old age.  (Even though no one I knew had the same symptoms.)  So no.  I have not had it hit me non-stop for 2 years.  It could be SjS plus something else too.
    Let us help if we can.  If we depress you, tell us.  If you would prefer private messages, let us know.  If you want nothing sent to you, let us know.  We are here to be helped and to give back. 
    Hoping you have a relaxed evening.
c3

[P.Trish]

Dear KRNL...first of all, my heart aches for you.  Everything you have described has been experienced (or Is being experienced) by people on this board.  I was dx'd approx. 3

years, ago.  Of course, I've had it much longer.

My flares wax and wane, but never leave.

KORNLMBCH's advice is 'right' on; and as kc said 'There is always hope.'

and there really is - hope. 

- and about the isolation and talking - I do the same thing as you!

I am fervently wishing you some relief and I am very glad you contacted this site, again. I know it can be a huge effort to type even a short message.

- hoping to hear from you, soon   P.Trish

[kc2015]

I just want to add when I was diagnosed I thought I would stay as bad as I was forever. It was heartbreaking and almost too much to bear. But things can change, there is a lot of unknowns in autoimmune but I strongly believe our bodies are still stronger than we give credit. Mine did bounce back after 3 solid years ofmisery. Everyone was sure after 3 straight the moisture was gone but it did come back
Now I am not saying i was completely healedbut I was able to do awesome things and I still can now albeit a bit tweaked. I know the darkness of depression, when your down try to avoid the internet. Too much info, too overwhelming plus no two cases are sjogrens are like. I used to listen to books on tap. Keep your mindbusy, it does and will get easier

[warmwaters]

About avoiding the depressing bits of the Internet... too true! Even though I get a lot of support from this site, there are times that I take a break, because it can be hard to listen to the problems folks are having.

Other thing I didn't think of before is to ask about treatments, and whether you feel you've tried things.  Some people do well with certain meds, others with diet, others with supplements. 

[KRNLMBCH]

I'm Back.  Thanks to the wonderful, supportive, hope instilling people that responded to my post.  I apologize for taking so long to thank you....apologizing...I feel that's all I do whenever I inter act with anyone.  One of the biggest changes in me, my personality, since getting sick.  I was proud of myself for always being courteous, prompt, and right on top of everything.
Needless to say, I was so demoralized and hopeless when I posted and today is the first day I felt "up to" logging in.
All of our words were very inspirational.  I don't feel like such a FREAK right now.  Just knowing that most of you too suffer, have suffered with (debilitating) symptoms, illness, for years without much relief. 
I'm still struggling, grieving, suffering, mostly for ALL that I have lost.  I miss ME!
This site, the tons of info. that VALIDATE me, my feelings, symptoms, etc. has been a life
saver.  From the bottom of my heart I thank you for your kind thoughts and inspiration.

[Carolina]

Hi Karen,

I saw your description of your pain, and thought I would see Trigeminal Neuralgia, but it's not there.  I see other things, so I assume the pain isn't Trigeminal Neuralgia.    AND you are taking the same medications that my friends takes for her TN, so you are doing it all.

Whatever it is, it is unbearable.  And yet we must bear unbearable conditions and pain, it seems. 

It seems, Karen, that you are doing everything possible, even taking prednisone.   I am so sorry that your medications and treatments have not been ENOUGH.

To feel that your have lost your SELF, and that you haven't found  a 'new normal' as some of us have, but continue in the state of an invalid is terrible.

Here I HIGHLY recommend the book: How to Be Sick, by Toni Bernhard.  It is truly an inspiration to me, and a way of living, which I so desperately needed. 

And HAVE lost my SELF, that is true, and finding my new normal is a day to day affair, with changes and adjustments.  But my suffering is NOT on your scale, and that is true.

What I do know is that we are all doing our best (on our good days, whatever those are) and doing what we CAN every day.  We are the true HEROES.

Letting goes of our old selves is so very hard. Please read How to Be Sick, Karen.  You can find joy is your life again.

Hugs,  Elaine

[Kathy57]

Karen,

My heart goes out to you.  I hope you get at least some relief and sooner!  I'm pretty sure I can say that I have been where you are and it is NOT fun.  It took at least 6 months for my Plaquenil to kick in and I had to switch from Salagen to the other. 

I went months when I could hardly eat and lost a lot of weight.  I was constantly uncomfortable with horrible dryness, pain by way of muscle aches, and joint stiffness/ aches.  My stomach  was so messed up I couldn't even take Ibuprophen.

The depression and anxiety and overwhelming fatigue were essentially immobilizing!!  My mouth and nose were so inflamed and bone dry that I battled chronic thrush and it actually hurt to breathe through my nose and my mouth!  If I just didn't haven't breathe or eat, it would have been so much better, I thought.

Most of my Doctors at the time were busy trying to tell me that I really wasn't sick, etc.  we all know the drill.

I actually tried to research states/ countries where assisted suicide is legal.  (I'm so sorry, but I did). My husband found out what I was doing and absolutely just "gave it to me!"  All I could say is, "I'm sorry, I'm sorry, I'm sorry!"  I wanted to say that this isn't about you at all - it's about me!

Karen, I am so glad I never did anything that I couldn't take back.  It is true that I feel much better than I did then, ................but...............I grieve for who I used to be.  I was the "energizer bunny" who actually jogged three miles per day!  Today, I'm not even sure that I can WALK three miles!  Let me change that - I'm pretty sure I CAN'T walk three miles!

I've worked full time for 38 years and did so much good during my life working (as a nurse).  And by the way, I never ever treated any patient as disrespectfully as I was actually treated by "my personal medical community", when they couldn't diagnose me and decided it was "all in my head." 

I was so sick that I was forced to just quit work outright.   I never applied for disability because I keep telling myself I will go back part time - just as soon as I feel a little better.  I hope that day comes soon because I plan on doing  this after my son's wedding whether I feel up to it or not.  (That is if anyone will want me!  I used to be in such demand!). I think, maybe not so much anymore!  The real question is will I be able to even do it?  My husband thinks not.😢.  But his "thinking" will not stop me from trying!😃

I feel my life has been irrevocably altered.  I will never be who I was.  My family and "new and improved" doctors are helping me.

Joining this group and "telling it like it is" has helped because no-one basically calls me a "liar" here because everyone pretty much "gets it."  We've all been somewhere dark!

Right now I feel like my symptoms are under control except for my asthma/ coughing, and fatigue.  I can only do so much and then crash.  I'm worried about my son's wedding cause it will be a long hard week traveling by car across country, hauling all my many meds and contraptions.  I know I'm gonna crash but hopefully it will be AFTER the good stuff!

I look in the mirror and I feel I have aged 10 years.  I have constant dark circles under my eyes.  Even the texture of my hair is changed.  My skin ............ Forget about it!  Lol

I remind myself of what is better now.  I can eat, chew, smell, and actually enjoy my food.  I have been able to use the limited energy that I have to help my immediate family (two new grand babies). 

It doesn't usually hurt to breath.  I have better  doctors now and an actual real diagnosis.  I still have my good husband and my family loves me despite all my many failings.  I have the years of wisdom, experience, camaraderie, and advice from the good people here.  Great suggestions and great advice!   Hopefully, someone will have a useful suggestion or experience  for you.  Wish I could help you more!

Being sick is expensive and I really want to find something I can do (and hopefully do well) just to help with all the co-pays of my many many meds!  (Mainly I want a slush fund so I can spoil my grandkids!) 😀

I'm sorry you have been feeling so bad with no let up for two years!!!  If it feels good to vent then please feel free to vent all you want!!  I look forward to hearing from you, "good, bad, or indifferent". 

I have to believe that something will break in your favor and soon.  My mother always believed In the silent power of prayer.  Many people will be silently and fervently praying for some light, hope, and relief for you soon!

Kathy


P.S.  Hang in there!

[katie1111]

I think most of us can relate to what you are feeling, but there is hope.  You will learn to live with this disease.  It takes time but gradually you will find things that work and do make you feel better.  You will find things you can do.  You will also find new friends - those that can support you.  Just don't give up.  We all react differently so what works for one might not work for you - but may be worth I try.  Think of yourself as a work in progress.

Reading these post can be depressing, but they can also be extremely helpful.  I have found more things that work for me on line than from any of my doctors.  Generally, I find myself going to the doctor and saying - "This has been recommended, what do you think.?"

Being sick has taken me in new directions.  I have learned a great deal about myself and others.  I have found new possibilities.

We will be with you on this journey .

Katie

[way2dry]

Karen,

When I read your post, it was almost as if I had written it myself.  The only thing is that in 2013 I got breast cancer too.

I started my sjogrens journey with a variety of weird symptoms and saw a bunch of different drs.: primary care, Ent, dentist, oral surgeon,etc.

I was told I had a sinus infection, gerd, possible tmj, etc, etc. When I developed a burning tongue, my primary care dr. told me I might have sjogrens.  I didn't panic at the time because I had never heard of it and I was dealing with the cancer.

In dec 2013 I finally got in to our local sjogrens clinic.  The rheumatologist ran a slew of blood and urine tests all of which came back negative.  She told me I didn't have sjogrens, but some autoimmune thing, gave me a prescription for salagen and evoxac and told me to come back in a year.

Since that time my dryness has become unbearable. Evoxac has stopped working. My skin is so dry it looks like crepe paper.  I try to keep it covered up.  My ears are ringing constantly and affects my hearing.  The list goes on. 

I am so depressed all the time.  I don't see much of a future.  I'm already 63 and although I was in great health before sjogrens that is gone now.  I rarely leave my house and am so sick of wasting my time with these useless doctors that I've started skipping appointments.  I sleep a lot.

I have seen some posts here where people have had things improve.  I hope you're one of the lucky ones.

Sorry this is so long.  I'm home alone all day and the dogs aren't much at conversation...

[irish]

KRMLBMCH, I am sorry that you are having such a hard time with your illness. I am hoping that there are people that you can talk to. You are right about chronic illness being overwhelming and like being stuck in a holding pattern. It is just awful to have to deal with the medical scene on a never ending basis---especially when there doesn't seem to be any answers. I know that sometimes I have literally quit going to the doctor for a period of time because I just can't face another appt with no answer to any problem.

Have you ever tried getting a new specialist or finding an immunologist. How about a new internist who could help you sort things out. When you have doctors searching and butting their heads against the wall it is beyond discouraging. Having new doctors sometimes helps renew the search and sort things out. I know it is so exhausting, but sometimes that is the only way that any headway is gained.

I have had symptoms for close to 50 years. Early on I didn't realize what was going on and things weren't as bad. In my early 30's things started escalating and since age 40 or so symptoms increased and I just went from one thing to another. That was over 30 years ago.

I haven't had a normal social life for years and my social life has been going to the doctor, labs etc. I was raised in a home with parents who owned a business and my sister and I were alone a lot and learned how to entertain ourselves. I have the ability to do things in spurts and get through the days fairly well. I read, crochet a little, play on the computer, watch some TV shows. I nap on occasion and suffer with pain at times and have to put heat on my owies. I just manage to find little things to keep me busy.

I take a lot of pills and have taken antibiotics so much that it has probably averaged out to 8 times a year for the past 20 years due to low t-cells. Some days I am discouraged but for some reason I have the ability to accept what is going on with my life. I don't like it, but there isn't a darned thing I can do to change it so I must adjust and accept.

I think that the reason I can do this is because I am a nurse and am so used to seeing illness and suffering that nothing shocks me or even surprises me anymore. Chronic illness is hard and especially hard when there is pain on a regular basis. I do believe that when we are able to accept and find ways to keep our minds active we can control the beast to a certain extent.

There are always bad days and better days and even having a couple of days a month when you can get out of the house to the store helps. The good thing about getting out to the store is that when you are feeling rotten it feels so darned good to be able to go home. Also, you don't have to put the groceries away right away either. Sometimes it can take me a week to get the groceries put away. I don't think there is as law that says it has to happen the same day one buys the groceries.

We all have our "demons" with this disease and being depressed can make our lives so much worse. We owe it to ourselves and our families to make sure that we get assessed for depression and take antidepressants if they are prescribed. This can increase our pleasure with life, make pain more tolerable, decrease our anxiety and irritability and help us cope.

One of the best things we can do everyday is to have some sort of routine. I have found that some days my life sort of goes down the drain and I will be useless and too sick to do much but I generally try to get up and get dressed every day. Doing that simple task seems to help me feel less ill. If I stay in my pjs all day every day I get a more negative attitude. I find that getting up and getting dressed makes me feel like I have more purpose in life. I may not do much, but I must con myself into thinking I am doing something.

We all have to develop a way to deal with our illness and pick out things that we can do to pass the time and keep us more in tune with the world. Hard thing to do that is for sure. This is just my take on how I deal with my life.

I am just curious if there are any of you who could tell us how you cope with these long days and what you do to keep yourself busy, arrange your housework, etc. It would be helpful to get some different ideas on how to organize and develop useful ways to deal with chronic illness. Thanks. Irish