Is anyone NOT getting better with treatment?

[MaryBee7]

Hi all,

I am quitting my career job of 20 years because I am just plain not better enough with SjS with treatment.  It seems the "ebb & flow" of it is stuck on the "flow" end with me.  Hoping that by quitting work I will feel better (work is a Hellish Nightmare of Stress).  So...is this progressive, is there a way to know, etc., etc.   I would appreciate any and all feedback!

[Styx]

Sorry to hear about this; I often worry that I'll need to quit because of my symptoms.

Which symptoms were the ones that made you quit?

Styx

[MaryBee7]

Hi Styx,

It is the never ending fatigue, newer eye problems:  blepharitis, eye "pain" ache behind eyes that is horrible with staring at computer, sleep problems, and plain Y-U-K... poor quality of life.  How's that for a positive reply?      For me, the good days are so few... I am just tired, Styx!   Had nearly 6 years of this before dx, first step was gall bladder removal because PCP at the time couldn't find a danged thing wrong and said 'you know...sometimes removing GBs just make people feel better'  and I was sick enough to say DO SOMETHING!  ha.  Downhill from there:  bouts of extreme weight loss, working a high stress job, living alone and doing it all by myself.  My rheumy is not supportive when I talk about possible disability application.  I'm doctored-out, tested-out and am ready to board the first space ship to Mars! 

[Styx]

It's very upsetting to me that your doctor won't consider disability. What more does he want?

Looking at your signature, it looks like you've been around the block with the right medications. Sometimes, you aren't left with many options, and disability seems like a valid option to me at this point.

Styx

[Styx]

Did any of your symptoms improve with medication?

[eyeamdry]

MaryBee, sorry you are having such a hard time.  I am retired now and went out on disability actually for another reason but I had Sjogrens then but didn't know it.  I must also say that I was close to retirement age when I went out, but it was not the way I wanted to retire.

I stayed with my job even while having health problems and researching my options in case I had to go out on disability.  My boss was harassing me and I kept the appropriate records in case I needed to do something.  My dr whom created the problem was my ophth who performed Lasik surgery on me.  He told me I would never get disability from the bad vision.  Well, I researched more and found out that it didn't have to be your doc who was the one to initiate disability.  In this case,l he caused the problem, of course he wasn't going to help me sign up for disability.  I remembered my GP was open to my problems I had with the surgery and once he told me "this should be an easy disability for you."  I didn't do anything then, but when I decided to file, I went to him first.  It can be any of your docs--or even a mental health worker if you've been seen by one.

Instead of just quitting, you might consider filing a FMLA and if you are still sick after some period of time, decide to file for short term disability if your employer has it.  After 20 years there, you probably have it.  I filed for short term disability from my company.  I got it and was on it for 6 months.  Social security guy told me to go ahead and file during this 6 month period.  I did about three months in.  It took 10 weeks and I was informed that I was approved for SS disability.  By doing things the way I did, I also was eligible to buy into the company's insurance  program.  I am since on Medicare with the company's insurance as my second insurance.  If i had just quit work, I wouldn't have any of this, except I am old enough now to collect social security.  It's just so much better, or can be if you think this through.  There is no guarantee, of course, but I'd worked for 40 years and many of those days at the end I wanted to say.....take this job and shove it.......  Lucy

[gurs]

Lucy has good suggestions about doing the FMLA and possible STD. This will show that something is going on with you where your
unable to work due to health issues....make sure you keep very, very detailed records of every doctors office/hospital visit, etc. You might also want to check a few new doctors out because they might give you a different diagnoses. I know some people can get SSD for having depression alone.

I loved my job..but had to make the hard decision to leave. I was sick so much, and the stress was making it worse. I also felt bad for my
co-workers, who ended up picking up my slack, and it just wasnt fair to them anymore. I was smart enough to buy in to the LTD when I first started with them 11 years prior and that really saved me..

Gursie

[Skylar]

I felt the same way you are now - very frustrated and demoralized. I was facing going into a wheel chair and my drs. just put their hands up in the air and said we just don't know what to do with you. Not only were things getting worse, but I developed Cushings so had to taper off my steroids.

I was so desperate and by accident got a book out of the library thinking it was about one subject, only to find it was about nutrition and diet and health called The China Study by Dr. Colin Campbell.... that book changed my life. Through that I changed my diet (he mentions lots of different but related diets, the one I found easiest and cheapest to follow is Dr. John McDougall's diet - he has a website and several books). As I said, I was desperate so willing to try anything that made sense which this did. I more than meet the US gov. recommended levels for protein/fat/carbohydrates but I also exceed most minerals, vitamins and phyconutrients on this diet. More importantly it has knocked down my inflammation - this is an anti-inflammatory diet and it made a huge difference. Most of my problems went into remission and the few that remained became milder. My only regret is that I didn't find this diet earlier - I wonder if maybe some or all of the progression of my autoimmune diseases would have not happened if I was eating healthier instead on the typical Standard American Diet (SAD). I was also able to get off most of my medication.

[Violet4]

I have a stressful, demanding job too.  I find that the stress definitely affects me!  I have to be more mindful with sleep, rest, and eating habits.  I have had success with significant diet changes, gluten-free, no dairy, etc.  I am currently reading more about Paleo and it sounds like just what I need.  My pain and inflammation have already gone WAY down.  My hair and skin are much better too.  So far, the traditional medical approach has only made me really sick!  I have reacted badly to Prilosec, Pilocarpine, and Plaquenil.  Maybe they should start giving me things that don't start with "P"?  Ha ha ha!  From what I understand, AI diseases have triggers and flares and can go into remission too.  And we're all different so it can be tricky to figure out what all that means.  This sucks, but I have been through way worse life experiences than this so I'm plugging along.

[Lesley_x]

It's funny, I never expected to 'get better' from sjogren's syndrome? I don't know what I expected.

Most doctors in the UK as far as I can see don't even treat it, and certainly not aggressively. I am unmedicated for sjs except for eyedrops I had to ask for.

What symptoms made you quit?

[Tivia]

It's funny, I never expected to 'get better' from sjogren's syndrome? I don't know what I expected.

Most doctors in the UK as far as I can see don't even treat it, and certainly not aggressively. I am unmedicated for sjs except for eyedrops I had to ask for.

What symptoms made you quit?

My rheumy isnt treating mine real aggressive, no plaq she dont think most of my symptoms that are bad are from sjs. She said I need to have my gastro and endo handle those, these doctors here will not work outside their area, and they never collaborate with each other.
I think its terrible that if a patient has a number of conditions, that they never even care to hear about the ones that dont affect their specialty. I mean come on I think if you have graves and sjs  that the doctor would want to be aware of symptoms and poss overlap or worsening...but nooo. God I just want to get back to the city where at least you have a choice in who you have as a doctor.   

[Dolly Dimples]

Mary Bee, just a small add on, remember that Sjogrens will still be with you even if you do finish working,
      it does not get better! One still has to do  all sorts of other"jobs" .  The only thing I would say is that the stress of  not working might improve, but there is no guarantee with Sjogrens, Its a tough decision and I wish you well in your final decision,
                                       Dolly x

[Tivia]

Mary, I think you have to do what you feel you can handle. I do know that people that tend to stop being active in life whether working social or fitness, tend to deteriorate faster. Dont overextend yourself but at the same time dont shut down, that would be very detrimental imo to you. Maybe find a part time job doing something thats not stressful and is enjoyable to you. Even on disability I think you should have some activity to keep active and aware, too many people go downhill fast when they stop being active.

I am kind of the same boat, my circumstances are such that I have to make some huge changes. I have to sell a house and move 300 miles to be able to have access to decent medical care. I am doing this alone, the stress is terrific with everything piled on top. If the work is stressful then its not healthy. I think the advice about filling short term with your employer is good, that will get you some rest and start the disability process with SSA.

[jazzlover]

It's funny, I never expected to 'get better' from sjogren's syndrome? I don't know what I expected.

-
Me either.

[olmphoto2]

I'm so sorry to hear about your situation. I personally would have a lot of hope that not working would help you a great deal in mitigating the frequency, duration and severity of your flares. [Working (I am a nurse) is not a possibility for me, has not been for 15 years].

I do not get better with treatment but I don't expect to.  I take Plaquenil, which is considered a DMARD or disease modifying anti-rheumatic drug that is meant to slow the progression of our disease, not back it off.  Pilocarpine (or the similar medicine Evoxac) are meant to mitigate our dryness symptoms for brief times---again, not really changing anything permanently for the better.  I am happy to have these symptom improvements and, regarding the Plaquenil, I feel that I am lucky to have a medicine that is likely altering the progression of my disease, decreasing the frequent, number and severity of my flares.

Wishing you the best. Know this forum is a great place of support and suggestions on how to live our lives to the fullest despite having our disease.