I am so tired of pain and new symptoms!

[Rene]

:worried: They say you have some remission well i haven't for five years! I am so sick of waking up so stiff that I can barely move! I woke up two days ago and my left foot was swollen and throbbing!! I could not walk on it.Of course this is for no reason at all, Just Lupus. I go from one bad symptom to the next with no real relief. My vision was so blurred today for no reason other than lupus and the medication side effects. Then I have nausea from Imuran that drives me nuts. Of course there is the vomiting that follows.:mad: :eek: I have tried all of the other meds and they don't help. Well steriods does but then we all know the side effects to those!If I take Imuran it does help control lupus somewhat. I can move a little better, get up and down. But the nausea and stomach pain is just plain sickening literally!!Sometimes I just feel so sick and tired of being so sick and tired I just want to stop all of the medicine because I am so sick of the side effects!!!I just wish I could go without medicine and be well. Sometimes I literally feel like getting into my car and running it into a tree. I would never do that but my frustration level runs so high I feel like getting in bed,pulling the cover over my head and never coming out!!!I feel like there is literally no end. When does it ever let up? I mean just a little just to give us a break, you know just a little glimpse of hope. How does one not get down and out and feel blue when they are literally sick and disabled all of the time. NO I am not in a wheel chair(thank God)But the sickness is just plain overwhelming at times. How and the heck does someone deal with a relentless never ending disease? It is like a cycle of pure madness within ,a battle that can't be won!!!!!!!How are we not to be negative when we are so sick all of the time. Day in and Day out sickness is all we see and live...Where is the remission I read about??? GOD please HELP US!! GIVE US SOME KIND OF HOPE!! IN TEARS!!!!!!! THANKS FOR LISTENING!!!!:worried:

[acard]

:there: Rene,
I am truly sorry for what you are going through. You are not alone.
You are in the right place. It is a difficult disease.
I was dx first w/ another autoimmune and at that point I had been very sick for at least 2 years that was in 1995 and I have since never been in remission per se.
I was dx w/ lupus shortly after that and then my list has grown. I may have never gone into remission but the disease will be quiet and you may feel almost human.
I have always had to be on drugs but I am lucky I only have to do the prednisone when I am desperate or flaring.
There will be silver linings in the clouds.8)
There will be wonderful people who come after me and they will give you incredible advice.:)
I know it looks overwhelming but take one day at a time. Also remember that we all are so unique and different.
Please get some help to get you thru these difficult days.
Feel free to e-mail or pm me I have been there done that:rolleyes:
Feel Better,
Becca:p

[crm1209]

Rene,
It's interesting, isn't it, how it's not so much the hurting or some of the other symptoms, but its the just the sheer relentlessness of it all that's hard to bear. It just never seems to let up, or if it does, it throws something new at you. Sometimes a brief break is all that's needed to regain just a little strength to keep going.

I'm sorry things have gotten so bad for you, and I'm really glad you posted. I hope today brings you some relief.

Renee

[Maia]

I feel much the same way as you, and really understood everything you just wrote. I had a few times where I felt quite well in the last 5 years, but nothing for the last 21 months. I felt *almost* completely 100% normal when pregnant except for a few weeks towards the end so I just keep trying to remember that it happened before and can happen again. I hope.

[Douglas]

I think I was fortunate that I was not diagnosed for so many years. I had many a day when I was in agonizing pain but had to work somehow. Other times I was fine, could even walk without pain. So much of the joint and muscle pain I credited to exercise. (I have forced myself to keep practicing even when I was ordered to stay horizontal on a bed board.) If I had known that all the symptoms were from one or two auto-immune diseases I, in other words that I had an incurable and ultimately fatal disease, I might have been unable to keep going. Ignorance may not be bliss but in my case it was a blessing. I used to live one day at a time; now five minutes at a time.
I am sorry for your challenges. I am going through a challenging patch myself right now. I may not have good or bad days but I do have good moments, sometimes strung together. I have accepted that I have these diseases, that I will never be "normal" but at least I have understanding friends, some of whom I have never seen but who post on this site. It may not seem like much, but there are so many things for which to be thankful, even when one's body is doing its level best to make life miserable.
Douglas+

[acard]

Douglas~That was soooooo awesome and moving. It feels like you knew exactly what to say to me, even though it is not my post.
Thank You,
Becca

[millykitty]

Rene,
You are in my thoughts and prayers. I cannot imagine. I wish I knew the right thing to say Douglas word it so eloquently! There are so many open arms and ears and shoulders here. I know you will find compassion and understanding and I hope that brings you relief in your heart.
Erin

[Rene]

I THank all of you for caring!! I just feel so hopeless at times and there is nothing I can do about it. So I come on here and let it out. My Rhemy told me at my last appointment that Lupus is one of the HARDEST diseases to have!! ALot of other disease can kill you faster,but lupus is Long lasting and dibilitating(never ending)relentless.It can wear us out mentally and physcially.:mad: :worried: You can live a long time,even a normal life span with medication,but how hard it is. Believe me, I am thankful that we can live a normal life span,but the sheer dibilitating and unpredictability is extremely difficult to deal with. SO thank you for caring and listening!!!!!!! GOD BLESS!!!:)

[Aligray]

Hello! I have been feeling the exact same way the last few days. just hopeless. like I will never feel better. everything you said in both your posts, I am feeling right now.

I think it is very important to form a support system. I have an incredible church family that I can call on at anytime. In fact I called one of the ladies yesterday for encouragement and it helped. I have friends that are very understanding and I think that is so important. you will figure out quickly who understands and who doesnt. focus on the ones that do. I found this site two days ago and already feel good about the support system here. use it!

now please dont think that with those things that I am all better. not so. but it does help.

good luck to you.

[aliciakeke]

well you definately are not alone. I too wonder where is the remission i have heard and read about? I have been sick for about three years and still waiting for some kind of break. I am currently taking Cellcept, Plaquenil, and prednisone. No relief yet. I guess I need a more agressive medication cause what I have been taking so far hasnt worked. It is so hard not to get depressed and down when you are disabled, and I am currently in a chair, a power chair to get around the house. I find myself crying nonstop wondering if I am ever gonna get just a little better. I definitley understand what you are going through and are feeling. This disease sucks out loud. I hate it and I know all of us do. It is great to have a site like this though to let us all know we are not alone. I hope you feel better soon and find some happiness somewhere in this misery.

Take care, love,
Alicia