Swing moods! are they part of this too!

The last few days I have been feeling pretty good, is never symptom free but my flairs seem to be less intense and shorter. Today is a beautiful sunny day after so much rain, spring is finally here, and yet I am totally out of control for no reason at all. It feels as if I am in roller coster ride... somebody that is not me is in charge of the wheel. I have no control over it.

In my only two years of been diagnosed and I am still learning about this disease, I can't imagine the ones of you that had this for over 20 years! Sometimes I snap for minor things, something I have never done before. I hate it. Do we ever get a real brake? I once read of a guy that claimed he cure himself with diet and lifestyle change... is it true? is that possible? I WANT OUT!!!!!!!!!!! I WANT A BREAK!!!

Donatella, I see there are over 50 members in the Depression and Chronic Illness group (http://www.lifewithlupus.org/group/h?), so I am guessing you are not alone! I hope venting helps. And, I hope you have a real remission holiday coming...

Donatella

Its possible that the guy you read about went into remission? Remission is possible, and that's my goal with my treatment. I hope that you have a better day, and start to feel better.

I agree with Trisha. The mechanisms behind this disease cannot be cured by diet. Diet can help some people but not cure. Usually is diet helps, there is another underlying disease mechanism at work, such as colitis, gluten allergy, etc.

I get like that also. If I carried a gun I would shoot half the stupid drivers on the road. HAHA. I snap at my husband once in awhile. I hate it too because thats not me. pain is not one of my symptoms at least not yet, i am lucky.

I've had Lupus for 22 yrs. Depending on how much steroids I'm on I can get cranky. My joints kill me so I've gotten use to it over the yrs. I've been in remission for short periods. The longest remission was 9 mos after IV Rituxan. It's very stressful to deal with a chronic disease. You need to be easy on yourself & take one day at a time. I've tried alternative tx's like Chinese herbs, accupuncture, diet change, lifestyle change by decreasing my work hrs & sleeping more. Nothing has really changed the symptoms except immune suppression. Think positive, research is working hard to find a cure

If it were possible to cure lupus or put it in remission with diet and lifestyle changes, there wouldn’t be so many who suffer with it. I believe if you have really bad eating habits and change to healthier eating, you will feel better regardless of whether you have lupus or not. Drastic changes will stress you and your body, so take things slowly and give yourself permission to chill whenever and however long you need. I was finally diagnosed about a year ago and i’m still tweaking meds and figuring out what will throw me into a flare…it’s definitely confusing and frustrating.

I am tired being tired and exhausted. Tired not having no strength and loosing my motivation to do anything. I sleep a lot. I need a break too an dI was just diagnose a week ago.



OC GAL said:

I've had Lupus for 22 yrs. Depending on how much steroids I'm on I can get cranky. My joints kill me so I've gotten use to it over the yrs. I've been in remission for short periods. The longest remission was 9 mos after IV Rituxan. It's very stressful to deal with a chronic disease. You need to be easy on yourself & take one day at a time. I've tried alternative tx's like Chinese herbs, accupuncture, diet change, lifestyle change by decreasing my work hrs & sleeping more. Nothing has really changed the symptoms except immune suppression. Think positive, research is working hard to find a cure

I have been sleeping a lot since I been diagnose a week ago.
I hope they find a cure because I hate how lupus makes me feel. Having a lot of pain in my legs and noticed today my left toe is still sore red. I don't know if this comes with lupus but I did research to see why my Left toes is red and what I read about my symptoms it sounds like gout. toe is painful.
lizluvsu said:



OC GAL said:

I've had Lupus for 22 yrs. Depending on how much steroids I'm on I can get cranky. My joints kill me so I've gotten use to it over the yrs. I've been in remission for short periods. The longest remission was 9 mos after IV Rituxan. It's very stressful to deal with a chronic disease. You need to be easy on yourself & take one day at a time. I've tried alternative tx's like Chinese herbs, accupuncture, diet change, lifestyle change by decreasing my work hrs & sleeping more. Nothing has really changed the symptoms except immune suppression. Think positive, research is working hard to find a cure

i was diagnosed in 84...but doctors felt i had good ten years before that for sure..since i got mono more than 3 times in those ten years plus kidney failure and problems they could not explain...which lupus did.

I look at this like PMS....and since i am now past that i can still recall how i just want to cut my hair or go off .....than my husband timidly or nice as he could say...is it near that time of the month..which made me what to kill him!! lol...i check and yes it was that....for me just understanding that it was my body out of control i could then be okay with it all.

luckily for me same has been true on really exhausting days or painful ones with the SLE. I have lost it, do not get me wrong but i have always made myself apologize for it as well. That was what made me change knowing if i yell or act like crazy person i will have to go apologize and take responsibility for my actions. Knowing that seems to keep me calmer or not do dumb things i might other wise.

I never wanted my disease to be excuse to act not okay or responsible at work. Or be treated differently. Luckily for me no one knew what it was even .... then i got sick at work and refused to go to hospital instead chose to get sick in our work bathroom which was not pleasant for them or I. No one ever doubted about how sick i could get with this disease.

Also i found walking calms me down as does some music or excellent book. But walking in woods which luckily surround me does it the best and last longest.....well a nice bath helps too with my good book!

so find something that calms you down fast....dancing maybe? dog walks are my most favorite if i had small kids to take to park or on walk that makes them happy....made me happy again.

sorry i cannot do better... my 1st rheum made me take cat naps as he called them...half hour naps every day and i still do. Journaling or even just drawing/painting for half hour or hour might help too... experiment! gardening..go by some flowers. massage....mix it up and do different things to see what makes you feel better, joyful! OH cooking a great dessert!

But what helps many....easy gratitude journal. Just even night right at bedtime keep notebook by your bed. In write 5 things you are grateful about. It can start easy, blue sky, child, pet. just do it and write anything...not test just gets one to start noticing the positive things...changes way we think slowly but for good if you keep it up. good luck to you

Just being newly diagnose a week ago, I get frustrated a lot and have mood swings too. Some days, I get the feeling where I just want to break down in tears. It seems like no matter how hard I try too, it is never good enough. I ask myself the same question; When does it ever stop? Will I ever get a break. There are days where I am fighting this alone. I am not the kind of person who likes to complain-but the kind of a person who just goes with the flow. Since diagnose a week ago with Lupus, some days it has me in an uproar and I feel so confuse. I have to stop and think because I forget what I was going to say and it takes me a few minutes to remember. It feels some days, I am also on a roller coaster a roller coaster that just seems it never stops. I may snap sometimes and I hate feeling this way. I am not myself. Feeling tired and all I want to do is sleep and shut myself away from everybody and the world.

Hey liz. Don’t fear hun, I went into remission for several years. I don’t know how I managed or maintained it but it is possible. I don’t take the steroids if I don’t have . The steroids make me gain so much weight and have terrible mood swings. The only time I am willing to take them is for my asthma issues. I just had a huge flare up with it and had to be hospitalized. Only real thing to help is predizone. Anyway, ask your doctor about Azathioprine. It is what I started taking two years ago and as long as I have it, I feel much better.

As far as your toe, yes it does sound like gout but you do.have to remember, Lupus is a mocking disease. Gout is simple a build up of uric acid. A change in your diet could help. I was put on something called Allopurinol. It helps with that problem. About the diet to cure Lupus, my mom found something called The Hallelujah Diet. She checks out all natural cures and medicine. It has supposedly even cured cancer. I have not taken the opportunity to look into it myself because I stay so sick. Maybe you can find the book and read up about it. She did tell me it is a very demanding diet. Hope you find peaxe soon.

I just tired feeling exhausted. All I want to do is sleep. I don't want to even get out of bed in the mornings. I will check that out and may hope I can find the book. I am tired feeling the way I am feeling right now. Fatigue,tired, and now my cheeks are red and burning. Is there anything else I need to know about this disease. Will I ever get a break? some peace from it. Some nights I wake up three or four times so I don't get a full eight hour sleep.

What medications did your doctor tell you to take lizluvsu?

I get hot flashes some nights. Restless sleep. I’m up several times a night. The hardest thing I find is staying healthy. I have 3 children and every time I turn around, I catch what they bring home. Lysol and clorox wipes help a lot but I just can’t get a break. I am beginning to wonder if it’s the house I live in.

Best thing I can tell you is listen to your body. If it wants sleep then give it to yourself. Anything over the counter, clear with the pharmacist or doctor so you don’t become worse off. Try to move around when you can. I am only 35 but my doctor and I discussed it and decided water exercise is best for me. It’s less stress on your joints. Also, ask about NSAIDS like ibupropin and asprin. They can cause joints to deteriorate. They can also be very hard on you when you have kidney issues.

I still learn new stuff about this disease too. Some people can point you in good directions. About the book, I have had SLE for 19 years now and am kinda skeptical about a diet curing Lupus but it could be true and if my mom believes it then I can’t see whw it would hurt me to try it.

If you become too stressed or anxious, talk to your doctir about putting you on something that will help with that or you can go to the health store and there is something that is all natural that works great for stress. I am trying to find the name but seem to have thrown out the bottle. Just call one and ask. It starts with the letter T and anyone working there should have knowledge. I did make sure it was safe for my condition. Good luck and I let you know if I find out.

Benlysta, name called

artchick said:

What medications did your doctor tell you to take lizluvsu?

I don't know anything about Benlysta. I don't think I'm able to take that because of a long history of clinical depression, and heart problems. I assume it takes a few weeks, in the least, for the medicine to show any signs of improvement. Be sure to read on dangerous side effects that you need to contact the doctor about. I started with plaquenil and prednisone and weekly vitamin/mineral/steroid infusions. It took about 3 months to feel any relief. I had to add another couple of meds just recently because the other meds weren't quite strong enough. Be patient, take care of yourself, and watch for side effects that may be important to discuss with your doctor!

lizluvsu said:

Benlysta, name called

artchick said:

What medications did your doctor tell you to take lizluvsu?

The toe could be an ingrown toenail too. I have the same thing going on right now and it is an ingrown toenail that I didn't get cut out soon enough.

As far as feeling pain and exhaustion, etc find something that you would love to do or want to learn and can tolerate doing. Siskiyousis is able to walk and do those types of things but I can't due to other issues besides lupus. I have learned to quilt and I make myself do that when I don't think I can do anything else. Another thing is to look around you and see other people who is so much worse then we arel I have been dealing with this and other things for years but I know of people who have so much more to deal with and I thank God that I have good friends and family and can still quilt and do some things. It took me a long time to get a correct diagnosis and I was so relieved to have an answer that I felt better emotionally and got some help for the physical problems finally. Keep your chin up!