Remission | Arthritis Information

 

Sometimes all that keeps me going is the hope I could have remission.  Anyone feel that way?Always.

We have to have hope. And yes hope it gets me threw the bad days. I want to live and do things and have quality of life. I want that more then anything. And every day i say i will go into remission tommorrow. But at the moment my stinking tongue hurts. My chest hurts. I am sweaty. I can not eat hot foods i may burn my mouth. Because i can tell from the pred and pain meds how hot the food is. Nothing taste right this week and smell stuff different. And now eating is a chore. I will fix that also. It can be certainly a bit draining. And then did i take my meds. Someone always interupts me. My tongue hurt one other time and then quit so not to stressed over it as annoyed as i do not know the cause and am tired of looking up stuff. So i know it will quit hurting. i took no allergy pill or pain pill today. So i am maybe getting somewhere. At some moments think i can just not do this anymore. Not to say i have any plans to knock myself off. Just i may have to get morphine and sleep all the time or something. Cause it is exhausting. Mentally and physically. But yes just wanting the old me back would be dandy wouldn't it.

Milly type in stomatitis in google search then check out the wikipedia one it will explain the sore tongue. I am glad I checked it out as I have this problem heaps and its so annoying.

Even with being in remission, you will still have pain and problems from damage already done.

During all of my remissions I still had to take some sort of med to help with the pain and discomfort I had due to the damage I already had. But it was much more bearable than when I was not in remission.

Remission would be good. [QUOTE=allycat]Milly type in stomatitis in google search then check out the wikipedia one it will explain the sore tongue. I am glad I checked it out as I have this problem heaps and its so annoying.[/QUOTE]

I used to get it in college.  I even went to the campus acute care clinic once because of it; I couldn't eat a damn thing and it was finals week.  An older and very wise nurse practitioner said that it was often stress and diet-related (college kids live on junk food and beer), with a big increase right before and during final exam week (the highest-stress time on campus!).  She told me to get a high-potency B vitamin supplement, rinse my mouth with warm salt water (about 1/2 tsp salt per 8 oz) and use oragel when the pain got too bad.  Within a couple days of starting the B vitamins, it went away.

Since then, it's flared up a few times during really stressful periods in my life.  Each time, B-vitamins and salt-water rinses took care of the problem. 

I don't normally take a high-potency B supplement because they smell bad and make me want to hurl.  I would probably be better off taking them all the time, but I just can't stomach it!!! It is so exhausting.  I totally understand what you are going through.  We all do.  I did realize today, no matter how crippled I get, if I can take enough pain pills to keep the pain controlled, I want to live.  I sit in my chair in front of a picture window.  I am in the treetops and watch the trees sway, the birds and the squirrels playing in them, flocks of geese and ducks flying in the sky.  My daughter said wouldn't you rather die and go to heaven.  When I am in pain I think like that but when the meds work and the pain is tolerable, just staring out my window makes life worth living.  I can watch the weather come in.  Thank God I have always enjoyed the outdoors.  Even though I am rarely outdoors in the weather, it has been nasty, just being able to watch the outdoors makes life worth living.  I am grateful for that.

Roxy, I think I'm in full remission, since sometime this past summer. I can't explain it. I feel better now than I have in 3 years. No Enbrel or Remicade since August when I was preparing for hip replacement surgery. I'm taking a mild dose of Mtx weekly with plaquenil. There is hope!

Mike

Roxy, I got DX for Fm about 18yrs ago. When they first told me It was like some dirty little secreat.You know we will tell you this is what you have ,But we really don't believe in this disease. I felt ashamed that I could't make it go away. Finaley I guess I came to turm's with it. Now 2006 they say you have r/a. Now all I do hope for is remission. Here lately I don't know how I would deal if not the people here telling me I am not crazy like they did 18yrs ago.

I get regular emails from WebMD that deal with RA & simular conditions. I thought of this thread when I saw this article.

http://www.webmd.com/content/article/133/118606.htm?ecd=wnl_ art_010708

I was dx'ed about 14 years ago. It's been an up and down journey; but I have managed very well in the last year. After two years on Humira and more than 5 on MTX I'm now doing better than I have in many years. I'm not totally trouble free; but my troubles are small compared to years past. I don't kid myself; I know this disease is not totally behind me by any means. I certainly know that to continue the way I do I have to stay on medication. I was taken off of Humira due to unrelated problems (long story) but with an increase in MTX I have managed to continue fairly successfully.

If I had any advice for the newbies to this disease it would be learn to develope a good mental attitude. Learn to stay positive even in the painful days. Always say to yourself "Tomorrow's a new day", "I can do this." I can, I can, I can, I can" once you let yourself get stuck in the woe is me cycle things will go from bad to worst. Don't sit around complaining daily about how horrible your life is....that only bring on more pain and worries. I would advise studying some sort of positive thinking practices just as much as I would advise any sort of pain management program. In the long run that will make a HUGE difference in how you manage life with a chronic illness.

I don't know if my story/experience will help you, but here it is, just in case.  And maybe your story/experience can help me, too?

I am 43 years old. I have been in clinical remission from RA for one year and I've been off of all medication for nine months. I was diagnosed with RA in 2005, after a year of debilitating pain. At the time of diagnosis, I could barely walk, and had to use both hands to open a door! I refused methotrexate and enbrel, etc., so I was prescribed plaquenil and sulfasalazine (with prednisone for 6 months in the beginning) until May 18, 2007, when I finally weaned off of all meds after six months with no symptoms and three months of blood tests that showed clinical remission.

My rheumatologist had told me repeatedly that it was impossible to live without medication, and that I had only a 10% chance of going into remission. IT MADE ME ANGRY and I wanted to do everything in my power to get completely well and prove him wrong! I hated always feeling so much pain that I couldn't find anything to live for. At my worst I was terribly depressed and suicidal.

After a year and a half of daily pain (even after I was taking medication) I started getting acupuncture (it REALLY helped!!) treatments twice a month, and changed my lifestyle (more rest, less stress, more exercise), and even changed jobs (to a less stressful one, because I was down to 10 hours/week--from 40 hours/week--I couldn't work, I was in so much pain). I started exercising (bicycle) just five minutes a day and after 6 months was up to one hour daily. The exercise helped tremendously with my depression. I later started doing yoga again, and that helped a lot, too.

My rheumatologist told me that my progress amazed him. In his 30 years as a rheumy, he'd never seen anyone with the severity of symptoms that I had, go into remission, let alone successfully wean off the meds.

Today, I exercise a minimum of 4 days/week (45 minutes on a bicycle and 15 minutes of yoga), eat very balanced, healthy meals (vegetarian since 1986), and get plenty of rest. I also drink 3 liters of water each day. I take multivitamins, fish/flax/borage oil and calcium every day. I try to keep my spirits high and stay positive about life. I meditate. I am thankful for EVERY painless moment, every day. I feel "almost" like I did before the RA knocked me down in 2004, though I don't think my energy level or physical strength will ever be the same.

Still, I always have an underlying, terrifying fear that something could go wrong.

I actually came on here to find other people who are in remission from RA without medication, because every day I live with the fear that I'll wake up swollen and in pain. I know that the fear drives me to do right by my body every day, and yet, I hate being afraid of falling down or hurting myself with each little thing I do. I still wrap my wrists in ace bandages when they feel a little weak, and I run screaming from people who are sick (sometimes literally).

I guess my question is, do people sometimes go into remission like this, for long periods, and then have symptoms again? I've been told that the greater the span of remission, the lesser the chance of a flare, but how true is that? I can't find anything on the internet about maintaining remission without medication.

Thanks for reading this! Be well, everyone, and take good care.
I was just asking a similar question on another thread. I was in remission and am now going into fulll blown problems again, BUT I know things can always change for the better.  We have found the pa is progressing into the spine which is causing problems with standing for any length of time right now.  I am not letting get to me as Lovie says our attitude has alot to do with it.  Yes we are going to go for stronger meds this time around but once it is under control again I will go back to taking as little of meds as possible and keeping my life as normal as possible, I've got too much to do in my life yet.   I don't know if this helps anyone but this is how I have been dealing with what I have and trying to keep on going.  meme Meme~I'm sorry to hear things are going down here Sweetie. I admire your attitude: Keep your chin up.

Thanks Lovie I try not to think too much about it there is too much to do. LinB been there, done that,  not working anymore so we are going for a little harder treatment now.  I have had pa longer then I had ra but it wasn't diagnosed correctly til  4yrs after I was diagnosed with ra.  WE all  hope for it getting better I keep reading more and more articles on how they are coming close to finding "cures", better meds and so forth, I only wish it was alot soon for alot for us that they find these now hopes for a better life.Marlakg,  Your story is great.  You have made a lot of effort to get healthy.  I used to live the lifestyle you live when I got RA.  In fact, I exercised like 3 hours a day.  I miss it.  I think I have a lot of damage and the fatigue from fibro have kept me from being active.  I am working five hours a week which has made a huge difference.  Even little steps help.  I just cannot stay on my feet long - way less than an hour.  I am doing better than ever. 

I have not been back to AI in awhile but you all have taken off with this thread and what great stories all of you have.  There is hope.  Mike  What a journey you have been through.  WOW  I am so glad to hear you are well.
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