View Full Version : questions about lupus

07-15-2010, 07:00 AM
Hi all! Like I frequently say, im new to lupus this year, I never even knew what it was untill I starting having a flair. That started in Feb. and is still going on. I feel like i'm not making much improvement. I just have a few questions maybe some of u can help me answer.
1. How many of you out there are in constant pain?
2. how long do these flairs last?? (on average)
3. When it goes into remission, Then is all of my pain gone?? or do my joints still hurt?
4. Any tips to get me out of this lonely place of pain and depression.

I have been in bed at my moms house for over a month now, im just in so much pain. I had a thyroid issue that has been corrected, im just getting over the flu, and i'm taking my plaqulnil....so i dont understand why i'm not getting releif. ok friends. ttys.

07-15-2010, 11:16 AM
I just finished a flare that started last July. That was a full year. The pain can only come down so far. We learn to live with pain. It becomes a matter of "mind over matter". The SciFi fans out there will understand when I say"

I use Mr Spock's technique:
"The mind is supreme,
The Mind rules,
There is no pain."

It actually worked for me at times.

Get off that bed and move. Movement loosens the joints. Try touching your toes, raise the arms over the head. Remember the exercises from when you were a kid. Walk around the house. Don't sit still.

The plaq will take time to kick in. But it works. Remember things don't happen over night.

Hugs and thoughts,

missing my twitchy

07-15-2010, 12:07 PM
Hi Sarah;

1. How many of you out there are in constant pain?
Constant pain is a norm for most of us. Many of us are always in pain, somewhere in our bodies. That, unfortunately, is the nature of the disease. Therefore, what we strive for, instead of complete pain-free days, are days with lower levels of pain so that we can function.

2. how long do these flairs last?? (on average)
Unfortunately, there is no average amount of time that a flare can last. Lupus is a disease that is different for each one of us. Therefore, the underlying causes of our flare ups are also different. Because of this, the length of our flare ups differ greatly and depend upon what symptoms we have during flare ups, what parts of our bodies are involved in the flare ups, and the cause of our flare ups. Again, due to these vast differences, flare ups can be anywhere between hours to months.
It is important that you understand your body and how it reacts to this disease so that you can make your own individual plans to avoid flare ups and so that you and your doctor can work together to get the flare under control.

3. When it goes into remission, Then is all of my pain gone?? or do my joints still hurt?
This, too, is a completely individual aspect of the disease and will not have the same answer for any two persons. For me, personally, there is ALWAYS pain. The difference is weather or not it is a low-level of pain or a completely disabling pain.
I am considered to have been downgraded to "Mild Lupus"..for me, it is my version of Remission. However, I still suffer from many symptoms. It is just that the symptoms are not severe.
Complete remission is something that we all strive for, but only a handful actually achieve. What we, therefore, hope for are days when we can function more and accomplish more with less pain and disability.

4. Any tips to get me out of this lonely place of pain and depression.
My first piece of advice is to agree with Nonna. It is VERY IMPORTANT that you attempt to move your body. It is a known and proven fact that exercise helps to reduce depression. Also, with this disease, regular exercise helps the medications to do their job, helps our bodies to fight for normalcy, and gives us more energy. The more you move, the more you are able to move.
My second piece of advice is to tell you that you are not alone. We have all felt the loneliness and depression caused by this disease. You are doing the right thing by reaching out to others who understand, who can give you support, understanding, compassion, and friendship. You will always find someone here to help you when you need it.
Also, I always suggest that you find someone in whom you can put your trust, to talk to (clergy, therapist, close friend or relative) who will be able to help you understand your feelings and how to work through them. Short of that, again, you can always come to us.

I hope that this has been helpful. I wish you the very best.

Peace and Blessings

Linda From Australia
07-15-2010, 04:53 PM
Sarah I was only diagnosed in June, and like you, I would like to have some answers to my MANY questions.

1. How many of you out there are in constant pain?
Sometimes particular joints hurt in varying degrees for months, other times it might just be for a day or so. When they have been hurting for months and start to feel a bit better, they are very weak for quite a while before the pain completely disappears.

I want to know how to cope with the constant pain? I think I am having a better day when my pain does not cause me to limp so I can avoid answering people’s questions on how I have hurt myself. I cannot answer, I don’t know or I don’t remember. I just say “I am a bit tired and have a few aches and pains”.

2. How long do these flairs last?? (on average)
I am just learning about what flares are. Over the last 3 years I have been having some rashes around my neck, and so far they have lasted between 3 – 5 months. I am recognising that at the beginning of the development of the rashes there are a lot of aches and pains, and feeling very tired.

I started a flare in February which started to go away in May, then got another one on top of it. This May flare is the worse that I have had so far. I was diagnosed in June, and I am getting worse, can’t wait until the Plaquenal starts working. At the moment I am in pain, nausea, low grade fever, sore skin all over the body, etc… I also have kidney and anaemia involvement as well at the moment so that is probably why I feel so bad.

3. When it goes into remission, then is all of my pain gone, or do my joints still hurt?
I don’t know about this answer, I am only starting to put the pieces together

4. Any tips to get me out of this lonely place of pain and depression.
Though it is very good to be educated on this horrible disease, I am also feeling slightly nervous (probably more feeling low than depressed) when I read about all the problems that is associated with this disease, not to mention the side effects of the different medication. I am worried about my kidneys. I still have to wait to see a specialist about them, but I am sure if the doctor was worried she would have tried to rush an appointment for me. I must remember that Stress is the biggest trigger for flares, so I am trying to rest and get on with my life. Any advice about how to cope with the pain would be appreciated!

07-15-2010, 08:03 PM
hi sara,

so sorry to hear that you are in a long-term flare. Has your dr. tried a Medrol injection to see if that will knock it out? When the Plaquenil did not give me any relief, my dr. started me on methotrexate injections. This combination is the only way i can get any relief. I too suffer with some level of pain every single day....and some days, it also seems to just suck the energy out of my body. I don't have the strength to keep my emotions in tact, and I don't have the strength to keep my mind from going into a downward spiral. This is understandable, so don't beat yourself up over it. Just focus on taking care of yourself, and being kind to yourself.

Saysusie provided precise answers to your questions, whereas we all suffer with the same disease along with the attachment illnesses, and we all have similar symptoms and attacks, Lupus is very individual and attacks us as and when it wants. I also have fibromyalgia, along with other things, and sometimes i can't tell if i am being attacked by the lupus or the fms.....oh what a wonderful world....

Keep asking questions here, this forum was my most valuable resource when i was having to learn how to live with lupus.

07-16-2010, 03:56 PM
Thank you guys for giving me such great and detailed replies. I feel like the more I can learn about this darned disease, the better off i'll be. thanks again folks. TTYS

07-20-2010, 07:20 AM
You are by far not alone, and yet, I get how it feels to be surrouned by people that do not understand and cannot really grasp what you are going through. It makes you feel truly alone, and you just don't want to burden others with your daily struggles. For one thing, you get a sense that they wonder if you are just making it all up, or at least exaggerating the degree to which you are suffering. Maybe they really don't doubt you. Maybe sometimes you doubt yourself. You wonder if you have given in to the diagnosis and just given up on getting better. So many thoughts, and very few that are positive. Maybe none.

All you can do is know that there really are a lot of us out here. 1.5 million or more in the U.S. alone, and upwards of 5 million around the world, that know what you are going through, even if there arent that many on this board. The statistics don't lie, and they are based on confirmed diagnoses, when we know that many, many lupies go undiagnosed on paper, or have their diagnosis questioned after the fact. Can you say frustration?

Whatever you do, don't give up, keep moving, and focus on the life you really can have, not on what you are leaving behind. Keep taking your meds. Write your feelings down, get them out of your head and off your mind. Have a good cry when you want to, it's cleansing. Have a good laugh whenever you can. And by all means, do as Gena Rowlands character in Hope Floats said... "get out and get the stink blown off ya" I love that quote, and it helps me to get myself off the couch, or out of my chair, or out of bed, and just go outside in the fresh air.