HI. just ONE question please......

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Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 9/6/2010 5:15 PM (GMT -7)   
Hello, in your experience...............does this EVER get any better? do you guys EVER have moments in which were like before.
(if you can remember how that feel like............"before" i mean)
 
or will it always be this way. it has been 5 years. and it has progressively been getting worse.
 
diagnosed in order since this past sept/oct. = sjogrens--------->raynauds smurf i like the smurf, he remind me of when my legs turned blue) -----> uctd------->polymysotis--------> lupus scool
(so i am still new to all of this............although not new to the pain. at ALL)
 
(this weekend was better bc ONE of my new symtoms from my chest which started getting worse, in which i had to sleep in my chair to breathe, i started to take colchicine on friday and it has helped and lot) so i am thankful.
 
i have had pain in my legs and arms now for about 2 years. but last week i started to get this pain only in my right foot where i feel like the bottom is just going to snap. like a twig. it hurts so much. (i can't remember if this is atleast better than the burning pain all over, especially in legs where it also felt like someone beat me to the poll while sleeping)
 
sooooooooo...........my question to those who have been diagnosed for a while now is
 
do you still have days in which are good days god willing MONTHS or even Yoda rolleyes willing YEARS?? i am 38. i still want to finish school. continue painting and film. have a family. love again. yeah
 
 
(i love the icons........obviously) turn

Post Edited (Ms. Wonder) : 9/6/2010 6:26:12 PM (GMT-6)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/6/2010 5:35 PM (GMT -7)   
I have good days and bad days we all do and some people get remissions that can last years you just have to follow doctor's orders, not overdo, and listen to your body.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 9/6/2010 5:43 PM (GMT -7)   
Thank you redrose ! i have been following your responses to people here this weekend. on and off. i really appreciate all your help. i will do my best to be helpful in time as well here. :) my brain really is not right lately and i apologize in advance for that.

i ordered the book you suggested a few times on other threads, The Lupus Bood by Wallace.

(i also know you have not been feeling well.........and my thought have been with you) :)

i will keep my hope for a remission. years hopefully soon someday. thanks

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/6/2010 7:43 PM (GMT -7)   
It can get better but you have an overlapping connective tissue disease that seems to be mixed connective tissue disease...like I have.  There is a specific antibody that needs to show up to formally diagnose it and that is probably why you have uctd instead.  If you have an overlapping disease it can be more complicated than just lupus alone.  Every case is unique just like lupus alone.
 
Same difference as far as treatment.  The key is to have early and aggressive treatment.  What controlling meds have you taken? 
 
My case was extreme, very complicated, and life threatening.  I was a quad (due to polymyositis, lost 40 lbs of muscle in a week) and things looked glum to start 2006.  Today I am able to downhill ski, play golf, tai chi, hike again.  In my case I lost (the cells were destroyed) a significant amount of muscle cells but 4.5+ years of PT and working out has restored part of my active life again.  Doesn't sound like you have had any muscle loss or maybe you just didn't mention it. 
 
by the way, I am almost 70 so you have a significant advantage in your age to recover.  If you are not satisfied with your treatment I suggest getting a second opinion...make sure it is from an experience doctor who has treated lupus and other AI diseases.
 
Good luck but don't despair.  It is a tough battle for most of us but I am an example of someone who has been reborn...almost literally.
 
Bill

bella4
Regular Member


Date Joined Jun 2005
Total Posts : 263
   Posted 9/7/2010 2:28 AM (GMT -7)   
hi wonder...i am sorry that you are feeling so bad. i just want to say that i find that it has become relative...my pain that is. there are 'good days' and there are 'bad days.' i have a doctor's appt tomorrow and although i felt bad when i saw him last (and i was sure to let him know!! lol), i feel a heck of a lot worse this time!! ugh...but he hears that i always feel bad and he doesn't know the difference or understand it for that matter. so, unless i'm dying...it is all relative and it is what is it is. i try not to obsess about it or focus on it either...so, will i ever feel like i did 'before?' i don't know and i don't dwell on it.....probably not, BUT i have to focus on what is today. LUPUS SUCKS!! haha..i know that : ) hang in there, girl!!
sle dx 2006

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 9/7/2010 5:31 PM (GMT -7)   
Hello. I just got home from day at doctors and dealing with insurance.

Yes, they said it is Mixed connective. again today.

They had told me that the IVIG was going to get covered and today that changed. They want to start Rituaxin (sp). I don't know if anyone here has tried that?? I am going to ask the question on a new topic as well.

Bill, the medications i started Plaquneil over a month ago. (400 mg)
Evocax (stopped. started again)
Colchcine -(started on friday with relief for my chest area......finally)
IV solumedrol- (last week a total 100 mg day 5x for week, which they would push daily through an IV needle. they wanted to start a 3 days steroid pump but could not get to veins)
Amitriptylline (started again end of last week)
Lyrica- 100
Restoril - 15 mg
medrol - (around 30 mg)
Potassium (20 MEQ, which started 2 weeks ago)
Dipyridamole- (stopped)

other herbs, vitamins, etc- brahmi, 7-keto (dhea), Co Q10 (400mg), Sumenta (400 mg), Triphala,

(i think that is it)

I am wrecked. I wish my family were here for me. I feel so alone. This is the only place I talk about this now. (i know i have to accept it. they have not been there since i was 13. i was taken out of home then. i went through both spine surgeries with no family either this past 5 years)

Bella, hope you feel better soon!!! : ) !! and Yes, Lupus does suck. i have been in inhumane pain for 5 years now. non stop. and the diagnosis for me seems to keep getting worse. (this whole thing sucks)

Thank you both for responding. If you can think of anything else, that would be great.

Tomorrow is my surgery for the IV port. i am nervous. (i can't help but think there is something else going on)

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/7/2010 10:46 PM (GMT -7)   
I wish I could do more than offer a shoulder and that it won't always be this bad, once they find the right meds for you you will start having good days again.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/8/2010 3:54 AM (GMT -7)   
I agree with redrose, once you get on the medicine that is right for you, things should improve dramatically from what you describe. I went 3 long years hardly able to walk from joint pain, couldnt lift my arms above my head to wash my hair and had to get help sitting down and getting up from the toilet my pain was so bad. Now we finally found the right medicine that treats my symptoms (pain medicine never helped) and my pan level is only at a constant 3 or 4. Sometimes it gets worse...sometimes its gets better but by golly, I will take this over the last 3 yrs of my life!

Don't give up! Sounds like they are trying to figure something out. I have not tried Rituxan. We were gonna try that and Cytoxan together but at the last minute my rhuemy didnt want to do that since there has not been a lot of trial with the two drugs used together! I would give it a shot! I have heard great things about it and I will pray you can find some relief from your pain!

Also, don't worry about asking questions. You should have been on here when I first joined!!! I know I asked so many questions but at the time...i wasnt being taken seriously by my family so I had no where else to go for support or even anyone to talk about it! So the lovely people here helped me so much! Then eventually my family figured out how serious things were and started supporting and encouraging me!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/8/2010 6:45 AM (GMT -7)   
Rituxan is a new drug that is used to treat lymphoma, RA, myositis and other AI diseases. Some have reported very good results with it. Make sure your insurance will pay for it.

Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/12/2010 8:37 AM (GMT -7)   
I'm in the same boat as you. I often wonder if I will ever have another good day again. I often feel so alone and there are days we are, just remember that even in that we are together. E-mail me anytime. I'm 33, and in shock that I feel so old. You are in my prayers.

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 9/12/2010 11:52 PM (GMT -7)   
thank you everyone for your reply. i apologize for it taking a while to get back to you. i had IV port surgery and there were complications. (what should have lasted an hour, lasted over two)

thank you for all the support. thank you for especially for having faith that things will get better for me than they are now.

i have heard great things about Rituxan for Lupus and many other auto immune diseases since this post.

the most challenging thing for me in all this USED to be each new symptom. now it's constantly a new symptom, there is no choice but to accept, have faith and do my best to have a REALLY good laugh within the day. (usually more than one) : ) !!!

I hope you are all well......considering. I also hope you have had somewhat of a peaceful weekend. My thoughts are with many of you. Take care
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