Hi all. I was diagnosed w/RA in May. My dr. initially put me on Methotrexate which I had to stop two weeks later due to an awful reaction (severe stomach cramps, diarreah, no appetite etc). Anyway, he then started me on Enbrel injections (50mg. once a week). I do the shots on Fridays and lately have noticed that by Wednesday afternoon-Thursday I am feeling stiff and sore. Anyone else have this? The pain isn't unbearable but definitely noticeable in my writs, certain fingers and back of my left knee. Also, does anyone attribute some sleep pattern disruptions to RA? Lately I wonder if I'm becoming a hypochondriac. Every little thing that happens I automatically feel is from the RA. I'm so nervous. My dr. said that according to my xrays I had no permanent damage (thank goodness). He's very happy we caught it so early. I am 40 years old. Also wanted to add, my husband and kids are very thoughtful and mindful of my disease and the toll it takes on my energy and body but I still can't help but feel like a "complainer" or a "whiner". But really, if someone asks me "How do you feel?" I usually just lie and say "Fine" when I'm really very unhappy and on the verge of tears. Telling them I'm fine sort of makes me feel worse becasue I'm bottling it all up but on the other hand, I feel why bother burdening them with something they can't change? Anyone?
Honey
My generic response to that question is always "fine" also. I've found that the people who really care and somewhat understand the disease become irritated with all my "fines." My wifes follow up question is always, "Fine, so how do you really feel?" Somehow they don't see, "oh my legs hurt, my knee hurts, my elbows, shoulders and neck hurts," as whining or complaining just as you or I wouldn't think twice about it if we asked someone else with this disease. You'll find that the people who really do care, try hard to understand what you're going through just as you would if the tables were turned. Since this is all new to you, consider that it is new to them also and try to educate them too as you are also learning more and more about this awful crap of a disease. And if you really do want to "whine" or "complain," this is a great place to come. Lots of understanding people here. Hang in there!
My husband is really very good about it all. He has had to drive me home from friend's barbeque's so that I can take a catnap, (and then we go back if I have energy) he comes to all of my doctor appointments with me. I think subconsciously I feel that on the one hand, if I always say I"m fine, they will believe me and maybe not help me as much as I need, but on the other hand, if I am constantly saying how I REALLY feel, i will be a burden. It's a fine line. Anyway, I really am thankful that he's so understanding with it. He has looked up RA on the internet on his own to try and learn more about it. It scares him (and me) but I take one day at a time and just keep trekking onward! Next Rheumatologist appt. is next week. I hope all blood levels are goodI think both of you honeys have a very good way of dealing with it.
And, we just can't get enough honey around here.
Welcome Honey. It is a good place to let it all out. A lot of tears go along with the keystrokes and here you will find that we KNOW what you are going through because we are living it too.
Hi honey, and welcome. The others gave you good advice. The fatigue is a part of the RA as are problems with sleep. They both should improve as your meds get adjusted.I'm on enbrel too as well as prednisone, plaquanil,methetrexate and others. I take enbrel on Wednesday and by the next day I feel somewhat better. By Monday or Tuesday I am often in more pain. Both enbrel and MTX usually make me feel worse initially, then make me feel better a few days later. At least that's what I've put together. It's hard to tell what causes what since I'm on so much medication. I'm glad you found this board. There are great people here and It's a good place to vent.I have a hard time with guilt with my kids. My younger one doesn't really understand what this is all about. I feel so guilty when he wants to have a friend come over and I just can't do it. I have to lay on the couch or in bed. I feel so bad. I have a friend nearby who is suffering with breast cancer and sometimes I think "Who the hell am I to complain?". I've already started to tell him that once the winter comes I really can't be around his class mates too much helping out in school because of the snifflfes and sneezes that I must stay away from. My dr. told me that the Enbrel lowers my immune system. Right now I'm waiting for husband to come home early to play baseball with my son so I can sleep. Does this ever get any better or just worse?Some people do get better, especially if they get on the right combination of meds. That's the real trick.
But you and your family have to learn how to adjust. And, don't think you are not having it bad just because a friend has breast cancer. That does not make your pain any less. It can make you more understanding towards others in medical crisis, but you are having one of your own.
You may have to let your son go over to other's houses (providing you're comfortable with that). You shouldn't hestiate to say that you will not always be able to make it an equal trade because your health varies. That isn't being selfish. That's being realistic.
Just be honest with your son. When you can do things, do them. When you can't, explain why. And, then do them a bit later when you are feeling better. Try and employ your son in being a part of the solution. Even younger children can do this.
As long as you are acting out of love, eventually they will understand. You are giving them strength of character and teaching them compassion. That's rare in this world. So, if you can't do all the "expected" things that you used to, so what. Does your heart still feel with love for your son.
One of the main things children need is someone to listen to. And, you can usually do that no matter how bad you are feeling. You have to adjust your style a bit, but you don't stop being a mother.
Honey,
I've noticed the same occurance - where you always feel worse the day before yuor Enbrel shot. I wonder if taking the 25mg shot twice a week would help even out the rollercoaster? Ask your RD. I will.
Honey,welcome, I take my enbrel every Thurs night, by the following Wed I start felling tired to but I know that after the next gay I will feel better,I understand the guilt,my 6 yr old daughter want my to go out side and play ball or hide and seek,sometimes I can but sometimes I can't and she understands why daddy can't,just talk to your kids and explain to them why mommy can't play right now,they will understand,they are smarter than you think,my family has supported my RA since day 1,my wife goes with me to every appt.( we drive 3 hrs) sits with me in the waiting room,instead of going shopping like I know she would like to do,but she is constantly asking how my day went,if it was a good or bad day,and it is comforting to know that she really is concern about me,she just can't watch me give my self my injection,but its funny cause she is a body piercer at her work,but it will get better.