Author Topic: Has anyone been symptomatic free for at least a year?  (Read 11003 times)

angeldancer

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Has anyone been symptomatic free for at least a year?
« on: March 12, 2014, 08:03:56 PM »
I know we always say we have to embrace our new life living with an AI.  I get that rest and taking care of ourselves is key to staying as well as possible.  BUT? is it possible to have had major symptoms for three or more years and then go into something of a remission symptoms free or relatively free. 

I was talking to God which I do a lot since I don't have anyone to talk to at home and I was asking for a break from all the madness with my body.  Then I wondered really.  Is it even possible?  Embrace the new life.??? I think it is going to take some work to believe the rest of my life I have to feel like I'm dying.  This is a horrible place to be. 

Even if it is not you, have you heard of someone that had a break and had a chance to break from the madness.

Just asking,

Lady Angeldancer
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

gemini052377

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Re: Has anyone been symptomatic free for at least a year?
« Reply #1 on: March 12, 2014, 09:18:14 PM »
Sad to say, but no one that I know of. I asked my Dr last year was there hope for remission, he said there is always hope, but the longer I go from diagnosis without improvement the chances decrease. I am 3 yrs in, feel no better now than I did then. In fact worse! Still trying to figure out why I am still taking meds, but am afraid how bad I will truly feel if I stop.

Here's to hoping, praying, and supporting one another  :)
« Last Edit: March 12, 2014, 11:20:11 PM by gemini052377 »
Mary-Primary Sjogren' s, Hashimoto' s Auto Immune Thyroid, Fibromyalgia, Chronic Fatigue Syndrome, Reynauds, and busy mom of 4 kiddos :)

angeldancer

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Re: Has anyone been symptomatic free for at least a year?
« Reply #2 on: March 12, 2014, 09:38:14 PM »
I guess you got a point.  Where is the research so we can get cured?  Who is caring about us in the medical profession?  I will stay positive that one day someone will come up with how to get us symptom free.
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

gemini052377

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Re: Has anyone been symptomatic free for at least a year?
« Reply #3 on: March 12, 2014, 11:27:20 PM »
I know they are trying, I participated in an international study. They collected blood, tissue, and DNA samples that will be stored in a national registry for researchers to pull from to develop new meds and unlock this disease. Unfortunately, Sjogren's and other AI diseases don't get the national funding or attention like other diseases.

One day at a time, take care-Mary
Mary-Primary Sjogren' s, Hashimoto' s Auto Immune Thyroid, Fibromyalgia, Chronic Fatigue Syndrome, Reynauds, and busy mom of 4 kiddos :)

susanep

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Re: Has anyone been symptomatic free for at least a year?
« Reply #4 on: March 13, 2014, 02:01:54 AM »
I seem to be getting worse year by year, and I don't know of anyone that had a good year.

I do know that my belief in God is what gets me through even times I think I am sinking. He uses people here, and other things other times.

I also know personally that our suffering can and is many times used for a greater good, such as helping us to really understand the pain of others, therefore being a comfort and blessing to them.

It is my belief that nothing in our life is wasted. It all has a special purpose even if we don't know it at the moment. We will though one day.

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

litliwlowa

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Re: Has anyone been symptomatic free for at least a year?
« Reply #5 on: March 13, 2014, 02:36:04 AM »
Quote
Even if it is not you, have you heard of someone that had a break and had a chance to break from the madness.
So far, only in my dreams. ;)

Amanda
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

ohiolady

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Re: Has anyone been symptomatic free for at least a year?
« Reply #6 on: March 13, 2014, 07:11:22 AM »
I am much better than the first year and a half.  Yes, I still have many chronic issues butI have much better quality of life.  The first year was awful!

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

Sleepy In Seattle

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Re: Has anyone been symptomatic free for at least a year?
« Reply #7 on: March 13, 2014, 07:43:05 AM »
Yes!!!! Well - I wouldn't say I am symptom-free, - I have my ups and downs - but my overall quality of life is now SOOOOOOO much better than it was 4 or 5 years ago.

Sometimes it takes a while to find the right balance of meds, and for me, finding a good eating plan was critical (no gluten, dairy, soy). And, sadly, for many people it seems like we don't yet have very effective treatments at all - everyone is different. I wish there were one, sure-fire treatment for all of us that we KNOW will work - but there isn't.

It can be a long road finding something that helps - but don't give up hope! Work with your doctors and do research and hopefully there will be SOMEthing that helps you feel better. Maybe not ALL the way better, but at least somewhat.

In the meantime, do what feeds your soul...whatever that is: books, movies, knitting, pets, music, sitting by the window and watching spring happen, a nice warm bath, good food. Find the happy, comforting things in your world and feel them deeply - even if they are only simple things.

And, of course, feel free to come get support here on the forums!!!! Know that you are not alone in this.... :)
Sjogren's, Lupus, Raynaud's, APS
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sassygal

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Re: Has anyone been symptomatic free for at least a year?
« Reply #8 on: March 13, 2014, 08:04:39 AM »
I used to get periods of time ranging from weeks to even months when I felt better, was able to do more and feel somewhat productive. Now, as time goes by, it is a steady, "always there thing", and over the past two years gotten worse. It feels like each time I flare, I lose a little ground and don't get back to my pre-flare state again.

Symptom free for a year? Oh how I wish! I pray and hope for better health always.

Sassygal

quietdynamics

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Re: Has anyone been symptomatic free for at least a year?
« Reply #9 on: March 13, 2014, 08:18:35 AM »
I had a two month experience last Sept and Oct when I was symptom free.

Woke up and could not believe that I felt like my old self.. really just could not believe it to the point that I was afraid to say it out loud. It was more than say a pain or such symptom, it was that toxic, malaise, funk feeling as well. I felt totally clear and fresh.
Woke the next day .. same wonderful feeling.

Had an appointment with therapist during this 'remission' and quietly told her. Said in fact. "I am afraid to say it out loud, in case the Pantheon of Gods hear me.. and take it away".. then I cried.

Met with Neuro and silly me.. extended my hand. Said, "Hello, I know you have never met the real me" And we laughed together, both of us happy.

Family was watching and noticing. I was getting more done.
I have no clue why this was happening. If I did I would bottle it and send it to everyone.

Then it was gone.

DH was so very sad for me. Sadder than I had ever seen him. He said to me with pained eyes  " I feel so sad for you"

But, my dears.. having had that experience.. NOW I know it is possible.
I think I over did it in my joy.
Next time, I will maintain what I have learned and stay the SJS course, pacing, etc.

But, also as Sleepy In Seattle points out we can have varying states of remission and be so very grateful for that. I am so much better than before.. and my diary attests to it.

I will never be the old me.. life is about growing.
I and other people thought I was strong before .. now I am even stronger.. not the same.
Internal strength and fortitude has grown, as well as creativity, adaptability, pragmatism.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Velcro

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Re: Has anyone been symptomatic free for at least a year?
« Reply #10 on: March 13, 2014, 08:20:48 AM »
Is it possible maybe you have something else crossing over that is improving so you're getting an overall sense of improvement?

That sounded dumb....ok, for my situation, some people's Morphea goes into "remission" after 3-5 years.  The damage is still there but I would think that if it's in remission, then some of my symptoms that go along with it and Sjogrens could improve or go away?

Did that make sense?

finallyadx

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Re: Has anyone been symptomatic free for at least a year?
« Reply #11 on: March 13, 2014, 08:22:29 AM »
Oh I WISH I could say I have been symptom free for a year or even six months, but I am so very happy to hear that some folks on this board have experienced some great "remission" feelings and times.  I am hopeful to get there at some point even if only for a month...I would take a month! 

I relish the good days I have and try to take as good a care of myself as I can on the bad days.  I am much more thankful for the good days I do have than I have ever been in my life...strange how we take health for granted until it is gone or failing.

Here's to hoping we all find some relief and some "remission" in symptoms at some point in our journeys and may they be longer lived than a few days! :)

Sending positive thoughts your way.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

nannysbaby

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Re: Has anyone been symptomatic free for at least a year?
« Reply #12 on: March 13, 2014, 08:25:14 AM »
I agree with Sassygal, during the first years on hydroxy. I had sections of time where I had much more energy and felt happier and more in contact with life.  The flaring up and down was the first thing I noticed with my health back in 1995 when I was first diagnosed with fibromyalgia.  I wasn't diagnosed with Sjogren's until 2007 and it's similar, but I am certainly not.  I have often thought that the fibro was either a precursor to the SS or it was SS, not a separate thing altogether.

I too long for a remission (a long, long one) and hope that all of us can enjoy them on many occasions.
Primary Sjogren's, Fibromyalgia, RLS; Methotrexate, Hydroxychloroquine, Vitamin Supp., Thera Tears

cremer

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Re: Has anyone been symptomatic free for at least a year?
« Reply #13 on: March 13, 2014, 01:18:56 PM »
Not symptom free by any means but since I've been on the Paleo diet, I have seen a remarkable turn around in the symptoms I used to have, I have only had one flare as well in 3 months.

I'm a firm believer in diet really does help.

SjoGirl

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Re: Has anyone been symptomatic free for at least a year?
« Reply #14 on: March 14, 2014, 12:55:12 PM »
Angeldancer I'm always open to miracles happening. I suspect those who have been symptom free for a year or more might not be on the Forum any more as they are too busy kicking up their heels and living life to the fullest.
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