Sorry that you are feeling so bad. I have been there & still get there at times. As a matter of fact, it hasn't been too long since I stopped having 12-14 hr sleep days. I felt like I was sleeping my life away. I don't know if I would be too tolerant of health care professionals who didn't give me the time of day or didn't seem to care about me. That's when I'd be looking for a new doctor because of the seriousness of this disease.
I would say that it would be good if you can get as much rest as you can, which may not necessarily be sleeping, but just stopping (or slowing down) activity. That is a hard thing to do for most women.View Thread
Polymyositis, maybe? Not sure what can help you & hope you're feeling somewhat better now. I am thrilled for you that you had the strength & energy to participate in cross fit competitions and pray that you get better soon so you can continue in something that you seem to enjoy.View Thread
My experience with prednisone was not really bad. I was taking prednisone with plaquenil. The biggest problem that I had was the weight gain that accompanied it and it seemed that no matter what I tried, the weight just wouldn't leave me & I was on a fairly low dose. I gained the weight quite quickly. Now that I'm no longer on it & take methotrexate coupled with plaquenil (my main meds) I am not gaining any more, but I still cannot lose any because my joints do not handle anything well, with the exception of aquatic therapy (my recent discovery). I just had knee surgery & am in recovery. I am planning on going back to aquatic therapy & then some type of aquatic exercise class once I'm able as it was wonderful to at least be able to move (exercise) and not experience any pain afterwards.
Yes, I was able to manage working and happy to get through a 40 week because we need the income to manage our household comfortably. My husband is on a mission to get us debt-free so in the event that I have to come off the job earlier than I planned, we would not be swamped with debts.
With that said, since each person's experience with most types of auto-immune diseases, especially lupus, is different and each reacts to medical treatments differently, time will tell as to whether or not prednisone will be beneficial for you. Best wishes.View Thread
Yes, I do know how you feel about trying to manage your own condition & how men, generally, seem like they can hardly handle being sick. Most women, like us, press to go on in spite of our conditions even when we know that we need to rest. While I do not discount my husbands health issues of diabetes & high blood pressure, I remind him that his conditions are treatable to the point where he can control how ill, or not, he gets. Nevertheless, it doesn't keep him from pointing out that he has "serious" health conditions also. Well, he's not insulin dependent so he can manage his diabetes & blood pressure by maintaining a healthy diet, exercising & taking his medication. Of course, I'm thinking, "Really?" If he had to go through what I go through daily with no real means of controlling it, he would be in a world of hurt as I yet continue to go on.
I am really amazed at some of the testimonies others have shared on this site regarding their daily activity. I wonder how do they do it. I'm grateful that my diagnosis has only been within the last 2 1/2 years (no problems before) & my children are grown, although not completely out of the house (working on that one). I can't imagine if I had to deal with this illness with toddlers, trying to maintain a clean house & other domesticated duties, plus work outside of the home. I just go work (40 hrs) and that's about all I can stand as it takes every ounce of energy I have just doing that and nothing else.
Well, I pray that things get better for you, that you find some extra moments of rest - physically, mentally & emotionally - and that your husband is not only strengthened, but comes to the realization that he needs to do his share so that you both can try to balance your well-being and help make life easier for each other.View Thread
Hello. I know how you feel and was very grateful when I found this community as well. I found it to be very helpful and supportive, especially when it seemed like those closest to me, except my daughter, wouldn't accept the fact that I was sick because I looked absolutely fine.View Thread
Ladies: I'm so sorry to hear you are discouraged due to the lack of responses. I do pray that you, as well as others, continue to stay on. I don't know if you have considered the possibility that while responses may not be as active as they once were, several people are being helped by the information that you post as well as just knowing that there are others out there who are lupus warriors & mentors. I, personally, cannot imagine where I would've been mentally and emotionally if I had not discovered this lupus community; it was my first. I also believe that several people, such as myself, are continuously checking this network, reading posts, and are being kept informed & encouraged. I do understand your position(s), though, as it is equally important as well to know that others care enough to take the time to respond sometimes too. Be blessed.View Thread
Sorry, I don't have any insight to offer you except that a few years back, that is what I experienced and a trip to the rheumatologist is when I was finally diagnosed. My neurologist referred me (had a T.I.A. = mini-stroke). My body underwent trauma as a result of complications during an abdominal hysterectomy. I pray that you get a diagnosis real soon and any treatment that you need. One of the hardest things I've dealt with is the change in my physical state. I was highly athletic all of my life and now, outside of aquatic therapy, I can barely do anything because of all of my other symptoms. I am just happy for the days that I can walk around and get through my 10 hr shift at work. Best wishes for you.View Thread
I really liked the Biotene products & their mouthwash worked pretty well also, as far as keeping your breath fresh. I also used the their spray intermittently throughout the day. While I was struggling with the dry mouth thing due to Sjorgren's, it (Biotene mouthwash) helped me in the area of keeping good breath. While these products can be purchased over the counter, it was cheaper to just get a script from my dentist, who also first started me off with a sample package that had a variety of Biotene products in it. He was very liberal and I appreciated that.View Thread
I bid you God's speed & pray that all things go well for you and is as painless as possible. I also pray for much success in your procedure and that the Lord continues to provide His wisdom to the doctors, guiding their hands as they minister to you through their profession in medicine. In Jesus' Name... Amen.View Thread