Author Topic: Has anyone been symptomatic free for at least a year?  (Read 10891 times)

slccom

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Re: Has anyone been symptomatic free for at least a year?
« Reply #15 on: March 14, 2014, 01:08:14 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.

Precisely!
Sharon

warmwaters

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Re: Has anyone been symptomatic free for at least a year?
« Reply #16 on: March 14, 2014, 03:56:09 PM »
I can only report on my own circumstances, which is "no".  Ongoing decline. I'd be grateful for a week without the fatigue and pain, and would gladly put up with the other symptoms for that week.

However, I always want to remind people that many of on this board are atypical - we are in more severe stages of the disease. People who are doing fine with some eye drops and some ibuprofen are probably not hanging out here much.  They may not even have a diagnosis.

There is research being done, but it takes time - they don't even have a good model for how the disease works, let alone how to stop it from doing that. Lupus, which has a lot of similar characteristics has gotten a lot more research dollars over the years, and even so, the first new drug for it was 20 years after the last drug was introduced.

You've had a really bad run of luck lately - a lot of health issues hitting you all at once.

I will tell something that helps me psychologically.  Ever so often I take a few days off from being sick.   What I mean by that, is other than the daily things I must do (like medicines and exercises), I don't do anything related to my health. I don't visit this board, I don't schedule any doctors appointments, I don't do bills, I try not to talk about my health, or my concerns from the future. I try to things I enjoy, whether it's reading a book, or going for a ride to the ocean.  It's my vacation from being sick.

It's not denying my illness, it's just trying to put it aside for a few days.

Hope things look up soon.

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Gingersnap

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Re: Has anyone been symptomatic free for at least a year?
« Reply #17 on: March 14, 2014, 05:41:03 PM »
I went into remission when I got pregnant with my daughter and when she was around 9 months old I started letting myself hope that somehow my disease would be much milder from now on, but it started gradually coming back and by the time she was 15 months old I was almost desperate to get her weaned so that I could get back on all of my meds...she's almost 2 now and I'm praying that I'm just in a bad patch and not that this is my new normal, I'm miserable pretty often and in different ways than I imagined possible before the pregnancy. So I guess the answer for me is, only while pregnant and the interim shortly thereafter as far as my experience has been :( But I know I've had this disease for at least 10 years before it got bad enough to be diagnosed and back then it would only bother me now and again and it was life as usual for the long periods in-between.
37/F Dx sjs with lupus overlap, raynauds
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angeldancer

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Re: Has anyone been symptomatic free for at least a year?
« Reply #18 on: March 15, 2014, 04:23:52 PM »
I just had to ask.  Trying to find a happy spot in the midst of my misery.  I am thankful to God for being alive.  I just would like some vacation from the agony. I want to take a few days off and not think or talk about sickness.  I pray that I can get to that point.  I am looking forward to this being my last week or radiation.  I still have several months left of chemo but so far this 2nd round of chemo I am not crying everyday.  Yay!  I am glad this is here for us that are in the midst of the battle.

Lady Angeldancer
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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,

CMNK12

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Re: Has anyone been symptomatic free for at least a year?
« Reply #19 on: March 16, 2014, 01:12:39 PM »
   I am praying for you angeldancer.  I am sorry that life has been so hard for you.  Remember to keep the faith. God knows every hair on your head and every tear you cry. He has a plan for every one of us. I know that He will bring you through this.  Take care. CK

LucyD

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Re: Has anyone been symptomatic free for at least a year?
« Reply #20 on: March 16, 2014, 01:26:06 PM »
Continue to pray for you AngelDancer and think of you. Your strength, determination, and state of mind are amazing.

May everyone here manifest better health!!!
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

Cindy

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Re: Has anyone been symptomatic free for at least a year?
« Reply #21 on: March 16, 2014, 03:06:54 PM »
Remission from all "NO" but much better months than others yes. Last summer I started with fibro symptoms. Even then I was able to enjoy 2 vacations. I went to Vegas and Destin, in both trips I experienced mild symptoms. Last year was better than this one pain wise.
Im still trying to adjust to the fibro pain. This year Im going back to Vegas and we are taking a family trip to Playa del Carmen. Im concerned about my ability to walk for longer periods without getting tired, but I will try my best to enjoy every minute of our vacation.

star723

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Re: Has anyone been symptomatic free for at least a year?
« Reply #22 on: March 16, 2014, 07:10:12 PM »
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 :)

I so agree with susanep ~ I try to be as upbeat as I can.  I had a lady just last week tell me what a joy it is to be around me. She had no idea how good that made me feel. For a minute or so I was pain free.  ;D

4Kids

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Re: Has anyone been symptomatic free for at least a year?
« Reply #23 on: March 17, 2014, 07:45:12 AM »
I go through some months when I feel really good. Almost symptom free, if my mouth would just cooperate!  However Salagen makes it pretty livable.

Not right now, but it will pass and I will feel good again. 

You have an extraordinary battle to fight, angel dancer, and we all wish you the very best. We are here for you, with you, holding your hand and hoping that today is going to be easier for you than yesterday.

Thinking of you,

Jackie
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

hallecats

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Re: Has anyone been symptomatic free for at least a year?
« Reply #24 on: March 17, 2014, 04:29:12 PM »
In the past 6+ years, I've have not had a day where I was pain free.  There is always a tender/painful area on my body. But, I work full-time and have a strenuous job.  I wish that I could not work or at least be part-time, but I know that it's impossible.  I wonder if I had a less physically demanding job, if I could be pain free.

I somehow get through my work days.

angeldancer

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Re: Has anyone been symptomatic free for at least a year?
« Reply #25 on: March 19, 2014, 01:20:51 AM »
Thank you everyone for your comments.  Yes my battles since the middle of last year has been rough.  I am looking forward to a day that I will be pain free.  I promise I will announce it.  It will make headlines  I pray that I am able to encourage all of you as you have done me.

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,

cactus

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Re: Has anyone been symptomatic free for at least a year?
« Reply #26 on: March 22, 2014, 11:15:35 AM »
No, I haven't been symptom free for 12 months, but I do keep a symptom diary. I have recently began to sort through it and put the info into graph form. I have been surprised that out of 13 types of symptoms and the number of incidences I have, the graphs have shown an improvement since 2009.

What has helped  me is getting rid of stress, (I left my job (bullied)  and ditched 3 so called friends). I've also been more careful with my diet and  sensible to avoid the triggers. I'm hoping to go through my graphs to see if any patterns appear and also show my rheumy. He will probably fall off his chair that I take it this seriously!

sjenny

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Re: Has anyone been symptomatic free for at least a year?
« Reply #27 on: March 22, 2014, 05:27:16 PM »
Don't lose hope!  I was in pretty bad shape for 4 years - dry skin, dry eyes, dry nose, dry mouth, dry throat, burning tongue, Bells palsy, occasional twitching in my leg muscles, fevers that would come and go, burning hands, Hashimotos, bone crushing fatigue and depression.

Then after much prayer, a Paleo diet, lots of coconut oil and coconut milk, a long list of supplements, Evoxac, Restasis, buckets of Biotene mouth gel and finally successful homeopathic treatment for Lymes disease, I gradually got better and better.  Oh, and I'm slowly getting the mercury fillings replaced in my teeth.   I feel so much better now - don't get any dryness now unless I'm on the verge of a cold virus or the flu, but after I fight the virus off, I'm back to normal. I've been pretty good for a couple of years now.

Posts from everyone in this wonderful community kept me going when I was in despair - there is a lot of wisdom and caring here!

sjenny
« Last Edit: March 22, 2014, 05:29:31 PM by sjenny »

andreamarie

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Re: Has anyone been symptomatic free for at least a year?
« Reply #28 on: March 26, 2014, 02:13:31 PM »
Not having a good day today; had Botox intravaginal Mo. and it takes a few days to calm down.

But: I HAVE HAD A FORTY YEAR REMISSION FROM CROHN'S DISEASE! I get flares at times but no meds needed; just go on Ensure. And I know I had it because I had emergency surgery from massive hemmorage: that's how I was dx.

Have had twenty year remission from interstitial cystitis: came with menopause. What did come back was pelvic floor dysfunction and intense vaginal itching. Had Kafkaesque treatment but finally got to right doctors. Being seen at Nerve Injury unit at MGH. Acute fatigue after exertion was better for a while but starting up again. I do not have RO antibodies but a wonderful rheumy who dx'd me. Been with him on and off thirty five years.

With the exception of menopause there were no dramatic bodily changes. I was on no meds (there were only three when I had Crohn's and I didn't respond to them) or life change with Crohn's. I didn't respond to prednisone; I got worse. I do have other g.i. problems but Crohn's is the big autoimmune one. Severe nausea comes and goes; retractable GERD.

The fatigue was dx as CFS: exercise intolerance. Wonderful doc gave up on me. One I see now keeps looking for other things. I see her once a year and she comes up with scary stuff. I tried Plaquenil many times; it tore my g.i. tract up. I'm just learning about IVIG but I'd have to be in a fibro study to get it. Fibro was bad first year with CFS but now only when I crash. Insomnia has been better with Lyrica and doxepin. But have to have tests to make sure neither is harming my heart. Tests start tomorrow; that's what's gotten me down.

I have to remind myself miracles can happen. Especially when I'm depressed. Had an amazing psychiatrist who kept me going but he retired.




brooklyntina

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Re: Has anyone been symptomatic free for at least a year?
« Reply #29 on: March 26, 2014, 05:29:10 PM »
I am much better than I was 7 years ago but I still have the big three symptoms every day. I was in ROUGH shape when I first got sick though (swollen brain, visibly enlarged lacrimal gland- total quasimoto time). I also got better with pregnancy but couldn't carry the baby to term. I got MUCH sicker after that and then gradually got better over time. I 100% believe we can get better. I follow a (super annoyingly) strict diet and rest as much as possible. I can't work a regular job like I used to though. So I guess better is relative?

Don't lose hope. I am SURE it can go away. Those lucky remission people just aren't checking message boards, right?