View Full Version : Remission or fool's gold?
09-18-2007, 07:46 AM
What exactly does a remission feel like? Remission? I like intermission better...
Does an intermission feel like the flu, minor aches, twitches, headaches here and there, like a constant gnaw instead of the bedridden lethargic feeling, extreme pain and depression?
Or do you feel like days of yesteryear those seem so faint in the memory. Like endless amounts of energy, no more gaping holes from hours of yawning..basically not thinking about your body in general because it lives without pain.
I ask because today I feel okay. I have a smile on my face, opened the windows enjoying the first summer end cool days. Humm...should I tackle the porch and clean the summer dust off the rockers and swing... But, always a but..as I was sweeping the floor, my fingers began to ache more as I gripped the handle with each sweep. My hip joints, shoulders and neck began to feel pain with each twist as I turned my body to get a full round sweep. I guess the chore is letting me know I have Lupus and saying fooled ya for a minute...
I think that bit of pain breaking is what sends some of us into a tailspin of bleakness and loss. Always reminding us we have an illness like a nag. Maybe we have to accept this as our normal and not let our thoughts runaway and take us down a path of mental destruction.
Is this my intermission? Popcorn? Coke for anyone?
What is my wellness I wonder?
09-18-2007, 07:26 PM
Ugh...no one has had an intermission from Lupus...sigh..?
09-19-2007, 05:46 AM
Intermission - I love that term!
Yes, I have days when I feel like I could walk a marathon (never could run), kicking my heels up all the way. Sometimes the feeling last for an hour, sometimes a day, sometimes weeks - what joy when it does!
I'm thankful and happy for every moment of "intermission" I receive, and do my best to make it last by taking care with my energy, what I eat, and of course that big hat to keep the sun off my face and neck.
Hugs and enjoy the intermission!
09-19-2007, 06:52 AM
The only "intermission" I've been able to manage so far (15 months since Dx) is the occasional morning where I feel really good ...awake and not sore and energetic, like "before". It's an awesome feeling ....then late afternoon nap time hits and I'm tired, I ache, I'm red and the nap only takes the edge off, doesn't give me back the "awesome". Frustrating!
09-19-2007, 08:44 AM
An hour? Is that all we get? I have such an insatiable appetite for more. I think I am going to be hungry for a long time. So it seems...sigh.
I appreciate the hour, the moment of clarity in my thoughts and wellness in my body..but soon as the hour ends I forget it and moan into the next. Wanting more and wishing for another just like the other...
:shock: Maddening, simply maddening.
Wishing everyone your hours will soon turn into days...
09-19-2007, 10:24 AM
I could have sworn that I answered your post and yet, I do not see my reply. :? I must have done something wrong!
Anyway, what I was telling you was that remission is just as individual as the disease is itself. Each of us suffer differently with our lupus and each of our remission is different.
It is possible for antibodies to become negative. This usually occurs after you have been treated with some of the immunosuppressive drugs, such as cyclophosphamide, and it may occur after high doses of steroids.
Lupus can go into remission, but this does not always mean an absolute disappearance of the disease. For most of us, it means less activity in our symptoms - i.e. - you still have the disease, you still have symptoms, but you can control the symptoms and manage the disease with little to no medication. You still must be cautious of the sun, still must make the necessary lifestyle changes, take care of yourself, get recuperative rest etc., but your labs show no antibodies.
It is also possible to achieve prolonged remission (I am a testimony to prolonged remission). For me, I have been downgraded to "Mild Lupus". I still get aches, pain, fatigue, sun sensitivity, etc. But, I do not take many medications specific to Lupus. However, I have severe and active Fibromyalgia and am taking loads of drugs for that :?
As everyone else here has described, we all have days when our symptoms subside and we feel like we could run a marathon. Unfortunately, most of us, on those days, try to do all of the things we could not do previously. So, we over-exert ourselves and then we discover that we have to pay for it afterwards. We are completely wiped out and suffering for 2-3 days to pay for the one day of feeling good. It is a vicious cycle, I know. But, you are not alone!
Peace and Blessings
09-19-2007, 12:24 PM
My pea brain just can't wrap itself around it. I guess I am trying to categorize, box and wrap an unpredictable disease.
If I feel wonderful for an hour would that be an intermission?
If I feel weak, fatigued, sore is that a flare?
If I feel I can't move is that rigamortis?
Okay, I am being silly now…but the second feeling I listed is it classified as a flare too or is it a flare waning, dying out or gaining momentum I wonder?
My year went like this thus far...
January...everyday..weak, sore muscle, joint pain, fatigue, mild face rash
February...everyday..increasing weakness, painful muscles, joint pain, fatigue, increase face rash and color.
March...gaining momentum no breaks.
April...Took to the bed. A heap. Unable to walk or grasp anything, severe headaches. Total body meltdown.
May...decreasing pain, fatigued and weakness. Relief in sight.
June.. felt marvelous, I was back....Woohoo, yahoo...till I had the menses.
Since June 18...downhill. It has been hour by hour, minute by minute...intermittently between…mild and bedridden.. pain, fatigued, headaches, depression and weakness. Oh, yucka another day of this blah, to Dear God, please help me pain. The usual.
I guess I am trying to define, find with in myself what my “normal” is and is this blah, rundown feeling my norm or a flare? If, it is my norm, goodness, the of lack of a better aging persons word, it sucks. Wondering can I say that?
09-19-2007, 12:59 PM
Flares and remissions can occur back-to-back. Remission does not mean an end of the disease. It is the state of absence of or minimization of disease activity in patients with a chronic illness, with the possibility of return of disease activity. Remission can be on Tuesday with flare up on Wednesday. This is the heinous nature of Lupus!
All I can do is to tell you what my norm is:
Every single day: aching, burning muscles. Fatigue, frequent headaches, and many sleepless nights. Dizziness that affects my equilibrium. However, I can still function with these symptoms. I still exercise, go to dinner, go to movies with my husband, visit with my friends etc. I just have to take precautions and limit my physical activities and exertion.
My bad days:
Excrutiating pain in my muscles and joints. My muscles burn so badly, it feels as if someone is taking a blow torch and running it up and down my muscles (just below my skin). The aches in my muscles and joints are so bad that I lie in bed crying because it hurts to roll over to get a glass of water off of my night stand to drink it. My head throbs (lupus migraine) and any amount of light or any sound sends me spiraling down a long dark cave of madness where, sometimes, I feel like I'll never ascend. My world is black and spinning and it sometimes turns red with unbearable pain!
So, remission for me is still having symptoms, still experiencing pain and fatigue - but on a much more bearable level. I don't know of too many people who have experienced complete remission (symptom-free). But I know that it has happened! We all have different levels of what is normal for us. Like you, my normal and bad days can be back-to-back. My doctors claim that I've achieved prolonged remission because I've been downgraded from severe SLE to Mild SLE (what a joke, huh?) and I am not taking any specific lupus medications (like prednisone, methotrexate, plaquenli, etc.). But, I still suffer from the symptoms I've explained above. Now, my doctors say that most of these symptoms are due to my Fibromyalgia and not my Lupus...but the relapse/remission syndrome is the same!
What we are all hoping for is prolonged remission. Where disease activity is gone completely for a long period of time. That, too, is possible. But it is not the type of remission that you and I are experiencing now!
I hope that helped :?
Peace and Blessings
09-19-2007, 02:24 PM
Saysusie...My eyes just brimmed with tears. I swell with tears not because someone who hurts like me, or what my whole life maybe like but because I know you are in pain. I know. I feel your pain more so than mine, if that makes sense. My compassion for you right now overrides my pain.
You are always more than helpful and I thank you for sharing days in your life. Hugs.
How do they classify it as mild, moderate or severe?
I am confused on this drug, Plaquenil. I thought it was suppose to help with the fatigue, joint pain and etc. Wondering is it taming Lupus and would I be worse if I went off of it. It has decreased the appearance of my malar rash, I think...but prior to the drug I would have months last year without it.
Be well.. I want for us,
09-19-2007, 10:02 PM
Thank you Oluwa :lol:
Mild Lupus primarily means that there is no organ involvement, symptoms are not severe, and symptoms do not disrupt your daily life. With Mild Lupus, you are pretty much able to control your symptoms with self-care and some medications. The goal of treatment for mild lupus is to prevent symptom flares—when fatigue, joint pain, muscle pain, and rash worsens. Treatment for mild lupus usually includes:
Avoiding the sun. If you must be in the sun, cover your arms and legs, wear a hat, and apply broad-spectrum sunscreen (covering both UVA and UVB rays) with a high sun protection factor (40 SPF or higher) to protect your skin.
Applying corticosteroid cream for rashes.
Taking nonsteroidal anti-inflammatory drugs (NSAIDs) and getting plenty of rest for mild joint and muscle pain and fever.
Taking antimalarial medications (like plaquenil) to treat fatigue, joint pain, skin rashes, and lung inflammation.
Taking low-dose corticosteroids if NSAIDs aren't effective in controlling your symptoms.
When Lupus symptoms are severe, the same treatment as above is indicated. However, higher-dose corticosteroids may be used, either in pills or by injection; Medications that suppress the immune system (immunosuppressants) may also be used.
Moderate Lupus usually means that some organs have become involved, but the damage is not life-threatening.
Severe Lupus usually means that organs have become involved and treatment includes methods to slow or stop the damage to the organs. People with severe lupus suffer with life-threatening flare-ups in the kidneys, heart or brain.
PLAQUENIL: this drug can take weeks to months before you really see its benefits. Many times, doctors will also prescribe other medications (like Prednisone) so that you will improve more quickly. To help combat inflammation and swelling, Plaquenil is often prescribed and has been successful in reducing these symptoms. It just takes a while to see its benefits. If you don't think that it is working, your doctor may prescribe corticosteroids or immunosuppressants. Talk to your doctor to see if it is time to discontinue Plaquenil for some other treatment.
Again....thank you so much for your kind words. This site is an important part of my life and I have to be here...sick or healthy!! :lol:
Peace and Blessings
10-03-2007, 06:18 PM
I've been traveling the forum I have been forgetting where I have posted. I remember your last ...but why I didn't post two weeks ago..humm. Dink.
Thank you for the entailed information, Saysusie. And how are you today?
I did see my rheumatologist last week. Diagnosis, pleurisy. I think alot of the pain was from my GERD. It went way pass the burn. If flooded my upper trunk with pain because I was instructed to stop taking it, but he doesn't recall telling me to stop the Protonix 5 months ago. Having GERD and not taking the pump inhibitor I couldn't take any type of NSAIDs. Now I take both.
I still have a stabbing in my left area of my chest and goes directly behind to a spot in my back. I still have upper back pain...I am still thinking it is a herniated cervical or thoracic disk. I so happy though that the under sternum burn is gone. I was so beside myself with pain, now I am doing okay.
He did advise to come back this week if the pain didn't stop, but I hesitate because I loss confidence in him. One too many blank stares.
I am debating who to see for this remaining pain. I think I will check out my primary doctor for a chest x-ray and a MRI.
Thank you again. Enjoy your evening..