Hello everyone. I am very confused. At my last visit to my Rheumy which my husband went with me (finally!) I asked the Dr. if the 4 mg/Prednisone that I take each day could have anything to do with mood swings. I put it this way because hubby swears that this is what has turned me into such a monster these past 2 years. He said no, but what he did suggest was to see a psychiatrist - that maybe that would help. I agreed only because I thought maybe my hubby would realize that maybe it's not me that is such a monster - maybe he would realize what Lupus does to you! Well, we went and this quack had the nerve to suggest I get on stronger anti-depressants! I point blank asked him if he knew what Lupus was. He said he had heard of it. I told both of them that unless you know what it's like, no one has any business telling us that we just need to try and get along with everyone else. At the end of the session, I told my husband - "this past month you have been having horrible sleep apnea and anxiety attacks. I have stayed up with you, done everything I could and have bent over backwards to help you haven't I." He said yes and that he appreciated that. I then said "well, as far as I'm concerned, you need to try a little harder when I don't feel well!" I thought that would make him realize but once again, I have learned that it just isn't going to change! Yesterday I told him not once but twice that my hands hurt. After dinner I asked him if he would just rub them a bit. I got a whole two minutes before he said "is that better?" I then reminded him that I spend more time cutting his hair for him - couldn't he try a little harder? I then went to bed - best to just walk away I've learned. This morning he had attitude and said well, I'm the one that went to bed mad. REALLY! I told him that I am worried about if I really get sick and am not able to do things - who can I depend on? I then proceeded to take down my tree (absolutely no help from him by the way!) and now that I chose to not talk anymore, he got dressed and left. He never has been able to deal with me being sick in the 39 years we've been married - he shuts me out instead of helps because I've always been the one to take care of everyone - mostly him! I reall am worried and finding myself thinking I'd rather be alone! Thanks for listening whoever is out there - just don't know what to do anymore!
Hi Jan,
I can relate to your condition. I have serious mood swings also now that i am taking 20mg pred for my lupus. The difference is I am single. I only experience difficulty dealing with people at work. They are not aware that i am sick because i look and act normal despite pain and fatigue inside. Oh I can be a real monster at times especially when someone nags at me at work because i am not able to meet deadlines as i tend to work slowly these days after my flare. Sometimes I could not really help it and just shut my mouth and walk away. I try to avoid the person until my moods are ok again. I guess we just need to learn how to cope at times like this. We cant expect everyone to understand. Yes it is very disappointing but we can choose how to react… Keep smiiling! Love begets love! I wish your hubby would be able to do the same for you… Habg in there! Enjoy the holidays! ^___^
I just had this conversation with my soon to be husband the other day. We have known each other since we were very young and lived next door to each other. It's been 17yrs since we started dating. We have 3 kids together. When I got pregnant with our 3rd kid he completely turned his back on me. I did not know much about Lupus. Even though I knew I had it I had no idea it could make you so sick. At that time I was told it was only going to effect my skin. I had never been so sick in my life. I was put on bed rest. Seems almost as though if I'm just a little sick, and I'm only sick for maybe 1 to 2 days he is okay. As soon as I'm down for more then that he turns into an idiot and starts to get angry with me. He also avoids me too. He acts like I have something to apologize for, like I'm a burden. I finally said that's it. If I'm going to have to get myself through all of this by myself then I would rather just do it alone. It hurts far more to have him there and be ignored then it would to just be single and deal with this alone. I told him this is not going to go away. I'm not going to get any better. I know there will probably be other things that will go wrong, not only because of Lupus but I'm getting older. What am I going to do if I get really sick. I need to know that he is there for ME, not there to help take care of the kids, or to cook or clean. I need to know that if all I need is him to lay in the bed with me and watch tv that he will and I won't be made to feel guilty for something I have no control over. How can you be angry with someone for something they are not doing on purpose.
Yes the steroids do cause mood swings. You need to see another Dr. I can't believe someone would even tell you that it's not a side effect. My sister took the same steroid when she was still alive, she had cancer. The way her moods would swing was out of hand. She could cry and laugh and be mad all with in just a half an hour. Long term use of the drugs can have the same effect. Yes being on other meds can help those side effects but you are going to experience mood swings. Hell just being sick all the time or being in pain is enough of a reason to feel upset or over whelmed or any other emotion you may feel. You have been married a very long time. I can not imagine what it feels like to know that he is not coming through for you when you need him, especially after all these years. I do know that you are right for feeling the way that you do. Do not let anyone tell you how you should be feeling. They don't go through what you do and there is not one person in this world that feels things the same exact way. You cope the way you need to. If your angry then you have a right to be. If you are upset or sad then you have that right to feel that way. I would like to know what your husband means by monster. So you may not be Susie sunshine all the time, maybe you are a bit moody at times. How is that being a monster. I would love for someone to feel the way we all do for one day and then tell me me how I'm supposed to feel and react. You know if you hold someone to unrealistic expectations then you are only going to be let down. If you don't expect anything from someone they can't let you down. I refuse to waste time trying to make someone into something I wish they could be. Way too time consuming. Rather I am online and researching and trying to find other ways to cope so that I don't feel such a need to depend on someone else. I'm not going to let anyone make me feel like I'm a basket case.
I know I just rambled on. I get worked about this topic because it hits so close to home.
I'm here if you ever need to talk!!
You know... it amazes me how much doctors that are supposed to be able to help us really do not know about Lupus and the medications they give us. I completely understand where you are at because I had a husband like that for many years but now I have a wonderful man as a husband. However, he is not perfect. He still gets completely wrapped up in his computer and ignores me when I am sick. He does not lift a finger to cook or clean until I get so angry with the situation. He is the best thing out there and I try not to complain. I am tired of hurting and no one understanding what is going on with my moods which I blame on the dragon called Lupus.
Know that we are here for you if you need to talk. btw.... my name is Jan too.
Hi Jan
I see a counselor, and he not only knows about lupus - his wife has lupus and is in remission. I can only tell you from my own experience - I'm not a really moody person although I do get sad at times. I think I'm perimenopausal, but my mother had a very difficult time with mood swings and she went undiagnosed with lupus. Look for another professional who understands, and of course you always have us : ) Trisha
Thank you so much everyone for your wonderful words and support! You don't know how much I needed to hear that I'm not alone and I'm not crazy! I guess I'm just not sure what I'm going to do at this point - I forgot to mention that last year I did leave him (for 5 weeks) and then moved back home because I didn't want to just give up after spending over half my life with this man. This morning I told him that I guess I can't expect him to change after so many years so I guess we just move on - again! He is also the type of person that can not and will not admit that he is wrong - and on the rare occassion that he does - it's never an "I'm sorry" - he'll call me up during the day and try and talk nicey nicey. For the most part - as long as I'm not sick and don't complain we get along fabulously - he's my best friend! Guess I'll just have to keep "sucking it up" and hope that I never get too sick....................I'm just grateful that I now have all of you to vent to and help me with your kind words and thoughtfulness. Maybe I can do this with your help! Love you all!
hi, jan. you are not crazy. Prednisone can, and most often does, cause mood swings. When i was first started on it back in 1990, one of my mentors in school who had much life experience with it said it can do a Jekyll/Hyde number on you. And my 20+ years on it bears that out. My cousin, who has had to be on steroids for her asthma all her life has also struggled with the mood swings.
I am having a lupus day today. fatigue, cold, hurting, and just feeling yucky........ Hope everyone else is having a better day.
Hey Jan,
No your are not crazy…but therapy would help…not necessarily more antidepressants. Try to see a Neuropsychologist or even just a psychologist…and preferably a woman…for yourself. Go by yourself …for yourself for few times…my husband and I have been in therapy for many years…we both have different illnesses. The thing about lupus is that your body and mood responses to it are always changing. So getting help once or twice a month on how to live with the constant changing is not bad. Our therapist has been able to give us many great ideas about how to help ourselves manage and how we can work together to manage.
Therapy has been good for me…as I have many things I want to vent about that my husband does not need to hear. I have my own emotional needs, having been “re-rerouted” from my career with this condition at 50 yrs. old. Way too early for me to be sidelined. Your husband definitely needs help, because he is not used to you being down…and him feeling so helpless. Our culture puts way to much pressure on men to think they have to and can control everything. He is now confronted something he can never control. He must learn to live with it and you, or give up. He is just as confused as you are. I am not taking sides here…I just know that it has taken my husband and I at least five years of small steps and therapy to learn to live with our illnesses. You have 39 years of experiences together…make them work for you. Make the disease the enemy not each other.
It has been helpful to me to hav this forum and others to talk with and read about their experiences. Thank you to you all. I pray we all have a better New Year!
Cindy
Thank you for the information. Sounds like therapy has helped you. I guess that's what I'm having such a hard time with - I don't understand how therapy can help. I will make the choice this year to find one that may be able to help - I'll try anything at this point.
I also at 55 am not ready to be sidelined!
Good grief, I am tired of doctors trying to send everyone to a shrink. My friend had tongue cancer. First they removed 1/3 of the tongue. Then they gave the tongue so much radiation that it's a miracle she has any left. She cannot eat yet and they want to send her to a psychologist. Really?? Geeze why can't she eat? Of course the meds give yout mood swings! But mixing that with more/and or stronger anti-depressants will not help.
Sometimes those who are very close to us do not understand us. We expect them to understand us and help us. My son really hurt my feelings last night. Each night I have been going through withdrawal pains kicking the Tramadol. Last night the pains were a lot less due to a natural sleeping pill that I am on. Nonetheless, I had some twitching and uneasiness and grouchiness! My son wanted to clown around and pretend to box with me. We usually play around with me acting like the female version of Chuck Norris. At any rate, I said , "Son, please don't, my pains are back and I am grouchy and nervous." He said something to the effect of , "Whatever!" Often he downplays the withdrawal pain. Sometimes he will come in my bedroom and pray with me and ask how I am. I think males cannot cope as much as females sometimes. I think they get over loaded quick and shut down. The mama/wife is supposed to be strong and running the house. When she shuts down, males have a hard time. I went to bed with hurt feelings last night. But in the morning light, I realize he is a YOUNG male who has a lot to learn.
My husband used to get very upset with me until he realized I was doing everything I could do to not be sick. He has come to realize that this life is a vapor-it does not last long. Eternity lasts LONG, not this life with its troubles. He says if he didn't have faith in Christ, he would have left me a long time ago. Now, do I get a lot of help from the guys in my home? Not as much as I want. But, when I feel up to it, I do what I can and I am thankful for the small steps of housework that I can do.
So very well said - and so very helpful! See, I knew all of you could help me! THANK YOU EVERYONE!
Hi Jan,
Too bad you and I are women, Jan....because I'd say, "Divorce your husband and let's get married". lol. Don't take that the wrong way..... I LOVE men, it's just that women think more alike. If we could marry our best friends and just not have the sex thing, there would be little divorces. lol. But seriously, prednisone can absolutely cause aggression, depression and wild mood swings. It's related to anabolic steroids, the ones body builders use. And they get aggressive sometimes too because of it. Is there a different drug your Doctor could give you that would help your pain/inflammation but without the aggressive side effect? Maybe you could discuss it with him/her. My daughter has had to take them off and on and she becomes such a little monster that I always can tell when she's taking them and I always tell her she can come by for a visit sometime AFTER she's finished with them. Now as far as your husband goes, I think he should reciprocate but many men aren't nurturers by nature. That's not to say they can't learn how to be. Since you have been the one providing the TLC to the family, he's not used to you now asking him to share that role. Deep down men are little boys and want their wives to take care of them like mommy did. Not all are like that but many are....they just may not admit it. Is there any way he would agree to go with you to therapy? That might help. If you guys still love each other then there is always hope. If he won't go to therapy, then just sit him down and explain your feelings. Tell him you need more from him than what you're getting and ask him if he is up for that. You have to find out WHY he doesn't seem to want to provide what you need. I hope this helps. :)
Oh you are so right my friend! I know exactly what you mean! I think my new years resolution to myself is to quit procrastinating and get myself an appointment with the Northern NM Arthritis Center that my acupuncturist keeps telling me I should do. My current rheumy is VERY old (I mean probably in his 80's) and is very old school. I know hubby will go with me - he went to the last quack we went to and says he will do anything to "help me". Just wish he'd help more than just that. Oh well, I have an acupuncture and massage next Tuesday so that will be heaven!
luvjc77 said:
Hi Jan,
Too bad you and I are women, Jan....because I'd say, "Divorce your husband and let's get married". lol. Don't take that the wrong way..... I LOVE men, it's just that women think more alike. If we could marry our best friends and just not have the sex thing, there would be little divorces. lol. But seriously, prednisone can absolutely cause aggression, depression and wild mood swings. It's related to anabolic steroids, the ones body builders use. And they get aggressive sometimes too because of it. Is there a different drug your Doctor could give you that would help your pain/inflammation but without the aggressive side effect? Maybe you could discuss it with him/her. My daughter has had to take them off and on and she becomes such a little monster that I always can tell when she's taking them and I always tell her she can come by for a visit sometime AFTER she's finished with them. Now as far as your husband goes, I think he should reciprocate but many men aren't nurturers by nature. That's not to say they can't learn how to be. Since you have been the one providing the TLC to the family, he's not used to you now asking him to share that role. Deep down men are little boys and want their wives to take care of them like mommy did. Not all are like that but many are....they just may not admit it. Is there any way he would agree to go with you to therapy? That might help. If you guys still love each other then there is always hope. If he won't go to therapy, then just sit him down and explain your feelings. Tell him you need more from him than what you're getting and ask him if he is up for that. You have to find out WHY he doesn't seem to want to provide what you need. I hope this helps. :)
Jan,
I am sorry that you are having such a difficult time with your husband. I know that this is not going to be popular, but just in the last year my husband and I have had to make several changes within our lives that affect not only me but him as well. When we met I was working, making good money, we would go boating and take trips to Mexico and San Diego...as well as going to shows and visiting the strip with friends.
Well, that now has all changed. What I have to remember that although I have a medical reason for my being cranky and not at rainbows and sunshine, his life has had to change dramatically as well.
He is a wonderful man but I know there are days that it is VERY frustrating for him as when we met neither of us could have predicted this disease would rear it's incredibly ugly head.
I have found several articles and websites on this disease and asked him(nicely) to please read them so that we are both on the same page. This isn't always the case (the being on the same page part) but I do see that he is starting to try.
That he helps you with the kids as such is at least something. Probably not as much as what you like but men are also looking for validation. Let him know you appreciate what he does and he may surprise you by doing more.
Again, not picking sides...believe me when I tell you I was once married to a man that sounds so much like your husband it gives me chills. However, after 39 years I would try. And therapy doesn't always have to include meds, sometimes it's just the ability to open up communication with your significant others. I would contact your local hospitals and see who they recommend for patients of chronic illness.
Stress is a trigger for a flare, so him causing stress turns it into a vicious cycle that has to be broken.
Best of luck and good health in the New Year.
DeAnne
Hi Jan,
Sorry to be late responding, but I have been flared out lately. Some days, trying to get a grasp of air can be a task.
Now, here is my view. We all know about pain. We live it daily. Even those we love so dear, live with us, see us making faces in pain cannot even imagine what we are going through, be male or female. We can try to explain, but words fall short. I try to forgive in the grounds of ignorance.
Remember that men have different genes. They cannot even find water inside a refrigerator some days...while my problem can be trying to get to the refrigerator. See? Different!