I am tried of having this disease, it has interfere with my every day acrivities, my husband does not understand, he thinks I just don't want to do things, it is not that I don't want to, it is because when I attempt to I suffer later with so much pain. I am at my wits end.
What kind of meds are you taking? I felt the same way until I started Humira. i have no pain now (occasionally some soreness in humid weather) and can do pretty much everything. Such a big difference from before. I put off taking the injectable but it is worth it a million times over.
hello, and thank you for writing, I am currently taking Methotreate this medcation comes in a vial that I have to draw up in a syringe and take it with orange juice. I am on Plaquenil and Medrol I was on Humira but that was not helping me so the dr. put me on Embrel I was on this medication for 6 months until it cease to help in the begining it did wonders. Now I will be starting Orencia. I am so glad that Humira is helping you, yes I do understand about humid weather and when it rains and the cold. Take care. Barbara
hi, im mia and i suffer from r.a. i inherrited this illness from my mother who spent the yrs age 43 to 74 bedridden and crippled with bent and crooked limbs and deteriorated bones. and pain. and then one day she died. my mother was a very brave woman, and strong because she had to be. my father caused her much grief over her illness. he always belittled her because she wouldnt get up and do something untill her bones finally bend and stuck. it was too late then and yrs later he was sorry. he did love her but did not understand her pain and suffering. there wasnt humaira then or anything like it. the dr. just dosed her up with pain pills till one day they just didnt work. the only relief she got was when the pain was so bad it actually made her body numb to the pain it caused her. at this time, i do not use prescription drugs. i use ibuprofin. daily. just 3 or 4. and ya im in pain. i go to work because at 44 yrs old i want my life to be complete. i have grandkids and feel that ive had enough pain to last forever, but alas! i want it all. so, i pray everyday that i can get up the next and do all the things i do for a long time. please let your family read this as we know it could be worse, you take it easy and do what you can and you will suffer but it will be only you who can controll it not your friends and family.the pain will be less if you move around as they say, but alas! where is the strenghth to do it? i hope this will help your family understand more, thanks for listening, mia, an r.a. friend.
Barbara Ann-
I am sorry to hear about your frustrating situation. Any chance your hubby could go to a doctor appointment with you? Then perhaps the doc could set him straight on a few things. Be patient with him. If he loves you he will eventually come around. We men can be pretty slow and dumb at times as you well know. Better days ahead!
Steve
Hi Steve, try that what he tells me is he knows all about the disease, I truly believe he does not, I have always been a mother hen to my husband and now that I can't anymore I feel as though that he expects me to do the same things as I always did. When my work day is done I am so tired and my body is just not cooperating with me all I want to do is lay down, when he comes home from work he will go straight into the parlor to watch TV and is waiting to see what I am going to make for dinner, believe me there are times I don't even want to move so no dinner is cook, he does not know how to cook. Any suggestions?????? Thanks for your input. God Bless Barbara
Barbara- So in a way you have created a bit of a monster by being such a good wife in the past. Now you have to try to break a long established pattern which won't be easy.
The first obligation you have is to take care of yourself. This will be hard and there will be grumbling, but your rest is important and managing your pain and fatigue is crucial to your well-being. Unfortunately your husband is being selfish right now. We men are like little boys at times. Maybe on days when you are feeling better, or for that matter any day you cook, make extra batches and freeze them so he can heat them up. Maybe somehow he can help you a little in the preparation part or in cleanup. Sit him down and tell him that you love him and want to cook for him but things have to change. Try to find a day(s) and ways you can make him feel special when he helps out.
That is all I can think of right now, except to say that I will pray for you.
Steve
Hi Steve, you hit the nail on the head, my husband is so spoil he does not like left overs, so for me to cook extra and freeze, it is out of the question. Yes I can say it is my fault that I created this little monster, I work at times a 50hr week so by the time I get home I am completely exhausted, I do have some good days that I can manage to tolerate the pain in my arms and legs and I try to do my best on those days. But as you well know we have those days just to lift a finger is a killer. I am glad that you understand how man can act like little boys, I try to relax on the weekend as much as I can before Monday rolls around again. Steve thank you ever so much for your input. God bless you always. Barbara
Barbara- You also need a new mind set. Don't call them leftovers. Leftovers are what you throw away after a meal is over. Even if you have to heat them up yourself at first, it will still be easier on you. If he doesn't eat them, then so be it, you prepared the meal. If he acts like a 2nd grader, treat him like one. Be patient but firm. You can do this and you gotta start somewhere and over time change can take place.
I am fortunate to be retired now, but when I was working I would come home and spend the entire weekend just trying to rest up and get ready to go to work again on Monday. I had no life at all, but fortunately my wonderful wife understood and helped me get through it. I know how tough it is to hold down a job with RA. Hang in there!!
Steve
A suggestion that I have for you is to explain to him how the pain feels. When people say to me I'm so young to be suffering with Fibromyalgia and some don't believe. I ask them if they ever had a charlie horse or slam a door on their finger or had something dropped on their foot. When they say yes, I tell them that my pain is 3 times as worse. Another suggest is to let him go with you to the doctor and let the doctor explain what is going on with you.
I was diagnosed with JRA at the age of 5, and one thing that I can tell you is that attitude is EVERYTHING. You may be tired of having the disease, but it's not going anywhere! It really is up to you to learn to live with it. When dealing with any disease and developing mental control mechanisms really do help. Also, a caring partner should willingly do everything possible to learn about your illness and how best to care for and support you.
Everyone that knows me is aware that I have arthritis and they also know my attitude and outlook on life have kept me going for the 42 years that I've had arthritis. I do what I want, though I know my limitations. I don't let pain prevent me from enjoying this wondereful life that I've been given. A defeatist attitude means that the disease wins and there is no way that I will lose. I will stay in the fight until I no longer can and so should you. Be more positive!
I do understand what you mean. As positive as I try to remain, I do allow myself what I call 'sympathy days'. On those days I allow myself to wallow in self pity for a few hours.
I only allow around 1 or 2 days per year because I cannot afford to stay in that mode. You really should question why your life has changed, give in to the pain for an hour or two and get really MAD about the hand that you have been dealt. On the otherhand, learn alternate ways to do those things that you love, thank God for each morning that you are allowed to see another day and get out, have a marvelous day and kick butt!!! Girl, you're going to be ok....I just know that you will be.
Let me know if there is anything that I can do for you!
You are such a sweetheart, I don't even allow myself to have those days, if I did I will be down for the count, I try to fight this as best as I can, and believe me every morning that I am able to get out of bed I do thank God with all my heart that he allow me to have another day and thank you for your possitive out look on this. God bless. Barbara
Hi. I totally agree with you about being sick and tired of R.A. because it literally makes you sick and tired. I just talked my dr. into letting me try to manage without methotrexate for the next 6 weeks. I think the meth. is part of the problem of being so tired, achy and depressed.
Good luck to you!
HI Barbara Ann,
The most difficult part of having RA is getting people to understand how limited we are in doing things. I like to cook, but if I chop up too many things or stir too much I pay with total loss of my wrist or hand for a couple of days. My family is very caring, but most time make believe I don't have anything wrong. Usually they don't even ask how i'm feeling. My mom suffered with RA for many years. Even though I was healthy then, I had the utmost caring for her. I didn't wait for her to ask for help, I just knew when she needed it. I wish I had her back for just one day so I could ask her so many things. Try not to stress out over your husband's lack of caring. The stress makes RA worse. Maybe he will come around. People are who they are, and nothing really changes them. Just do the best you can (for me somedays I can't even do that) I understand what you're going through, and you are in my thoughts and prayers.
I'm right there with you Barbara Ann and am contemplating divorce because of it. My husband thinks that when he leaves for work in the morning and says "hey let's go out tonight" that when he gets home that night, I should be dressed up and ready to go. Well, dear... the 2 dogs ran away, I moved the fridge out and caught 100 dust bunnies, I did 4 loads of laundry, went up and down the stairs 10 times, I steam cleaned the tile floors in the house, ran the dishwasher and emptied it and after bending over, using my hands, etc over 100 times today - damn I hurt. I already wear the Fentanyl patch 100 mcg/hr, take OxyContin 80 mg twice daily, on Humira and just stopped Enbrel after 4 years of that, had a neurostimulator implant put in. But after all of this going on during the day, NOW I have to go back up the stairs to shower and he doesn't understand that the showering process alone is a feat, especially bending over to read body parts, shaving legs, blow drying hair, putting on make up, etc. That alone is a day's work for me. So... here he comes home and gets all mad because we are not going out tonight. Although I feel bad for him, because he wants to spend time with his wife and go out on the town - the two life styles just don't match anymore. Perhaps that is the realization that you need to make. I don't want to pull him down; and medically there is no way he can help me - so essentially we have a round peg and a square hole. It never will work. They can read everything, hear everything but never, never understand. If there was a way that they could walk in our shoes for just one week, maybe just then they could comprehend but I don't think that is long enough. After being in pain for this many years, you are fragile and you are allowed to be. Do your best and realize that is all that you can do. You have to let go of your "old lifestyle" and you can't beat yourself up about the things you can't do anymore; just enjoy things that you can do now. This disease does progress we all know that - so every day that we can still do something is a blessing because one day we will not be able to. Enough is enough - when you hit your limit - that's it. Ask your doctor for Valium and relaxing will help you. Stress does not help you at all as it tenses up the muscles which causes more pain in the joints. If you want to chat, realize that we are all walking in your shoes and we are all here to support you. Hang in there. We can't change who we are anymore, but you can change one thing - him!
on the days your husband wants to go out why don't you let some of the other things slide for that day and rest up a little so you can enjoy time with him ? And yes i do have RA and yes i am just as tired and in pain same as you but so what if the floor dosen't get swept or the dishes done. they will still be there tomorrow. I have been divorced and the reason was because we didn't do ANYTHING TOGETHER so i learned what was important was my family. i also work about 45- 50 hours a week but am one of the lucky ones my boss and new husband understand when i can,t do anymore. I am allergic to many meds but methotrexate and predizone is a good combo for me.
I am very sorry that you have gotten to this point, but I do understand. I was diagnosed at age 28. In just 2 years I already needed a knee replacement. I began doing the chemo because my illness is so progressive. I have been on Remicade for 3 years, Rituxan for 1 year, and now I am on Orencia...talk about being tired. I am taking a multitude of pain pills including the Fentynl. I feel so bad about myself, because I am not "normal". I can't do what others can do, and if I try, I pay for it for weeks later. A couple of years ago I turned down a marriage proposal. I knew that he would never understand what I was experiencing. It is so very hard to convey to someone what you are going through. Yes, you can tell them in words, but words do not concretely express the way that your life is altered in every way. And that is just the physical aspect; I have not even touched upon the mental. I decided that I beat up on myself enough for my limits, I refuse to allow someone else make me feel bad about not being able to do what they feel that I should be capable of doing. Ultimately, you are the one that is going to have to live with the consequences of your decision, so let it be just that...your decision. I would like to offer a couple of suggestions, and a word of encouragement. First, please surround yourself with a strong support system (good doctors, other people with RA, family, and friends) that know what your going through, or at least willing to listen, and try and help you through it. Second, maybe if you were to get your husband some books that thoroughly explain this process that you are going through, and what you may go through. This really helped me, and the people around me to understand. Often it is the not knowing that we are scared of. Lastly, nobody wants this disease, and I would not even wish it on my worst enemy, but the fact is...we have it. As you know, there are good days and bad days. Focus on the good days. You have so many ahead of you. I have been able to do this by redefining what "normal" is, normal for me anyway. I pray that you find the sunshine in this storm, remember that storms don't last forever, and remember that you have a whole online community that is behind you 100%.
Hang in there, You are the only one who can take things in you own hands and have the attitude that I have it ,It dos not have me.I know some times you feel you are at your wits end with your husban not understanding what you are going though, some times it is hard for them because they feel like they are suppose to be able to fix things and this is some thing that he can`t.It`s time you step up and get going it is easy to give up and give in but if you do not keep moveing forwards and take the bull by the horns per say you can do anything. the more you feel sorry for yourself the worse you will feel. Get up and get moveing and get on with life.I have good days and bad but on the bad days i take more breaks during the day to rest but you have to keep going the pain gets worse the more you sit around.
Hey there... chin up! I have this disease, and am also dealing with a husband with severe depression, (which I think I'm so there) who's had three shoulder sugeries among other things... You need to hang in there. Whomever you are, I care because I know what it's like. I go to the grocery store with twenty bucks for two weeks for crying out loud... how many people can live like this? But somehow, we do. My kids know I love them an thats all that matters.
I am so very sorry to hear what you are going through, I know it has to be a very rough road to travel on, May God give you the strength to carry on, Please if you need to talk please I am here as we all are hear on this site to console one another. Take care and May God bless you and your family always. Barbara
I can relate to your frustration. It is not easy to live with RA. I was lucky enough to find an excellent Rheumatoid Specialist who did not give up until we found a treatment that worked for me. Now I can have a normal life and aside from an ocasional flare up, I am OK. Try to develop your own little systems to allow you to do things so that you don't hurt later. For example I changed from using a laundry basket to using a small cloth bag and carried it like a baby so that I wouldn't hurt later. I got wet swifters so that I wouldn't have to stress my wrist squeezing the mop. I invested in a pair of confortable but fashionable shoes to avoid pain in my feet. When I am going through a flare up I switch to paper plates & paper cups and either make meals which don't require pots & pans or ask my husband to wash them for me.
I had to change how I did a lot of things but I thank God I found a treatment that works. I still miss things like playing basketball and volleyball with my boys but I settle for playing board games with them. Good luck! Oh, leave some literature around the house on RA and maybe your husband will pick it up and become aware of the seriousness of living with RA.
Hi my name is Kathy and I totally understand where you are coming from. My son is 20 yrs old and has a very rare form of rheumotoid arthritis, it only affects one in 10 million a year. He had a good paying job that he loved and had to give it up because this disease breaks down his muscles to where he has no strength to do anything. He is 6-3 and only weighs 120, he can't seem to gain weight. There is a good chance he could die if he gets any worse. He is tired of family balling him out that he needs to eat and how is he doing all the time. He knows he needs to eat. He was living with me for the last year and a half but didn't feel like much of a man having to live with his mom and was very depressed, so my other son had him move in with him and he lives in Fallon. It was very hard having him move because I think I could take better care of him, afterall I am his mother. I understand too where he is coming from. I just hope that my other son takes proper care of him, because he can't be there all the time as he works, I stay home most the time. I have to leave it in God's hands as he is God's child. You take care of if you need my husband to talk to yours about this disease and how you need to be very understanding he can.
Hi kathy, I am so very sorry to hear about your son, yes I do understand how a mother will feel because I will feel the same way, I would rather have my son home with me to care for besides Mother's do know what best. LOL. I have been trying to explained to my husband the seriousness of this disease I just hope that he fully does understand. Thank you so much for being so kind. My husband has been helping me a little bit more than what he has been Prayers does wonders. Yes I do believe we are all in God gracious hands. Please don't give up hope God is great!!!!! Continue praying, I will pray for your son as well. Take care Kathy and God bless. Barbara
If you have a printer hooked up to your computer, print out the disability that comes from Rheumatoid Arthritis. My sister died at 42 from the RA. It took her heart. She would cry, constantly, from the severe pain. She would suffer just from doing the dishes on what she called a "good day".
I am now in a wheelchair from my RA. The pain keeps me up every night---nothing helps. In the mornings, I cannot get out of bed without help.
Tell your husband he needs to get informed about this terrible disease. As of yet,there is no cure! Show your husband this letter.
Sir, you need to get the facts about what your wife is going thru. My husband is the one who found this site for me. He is the one who cares for me. I wanted to go to the Nursing Home. He wouldn't even consider it. He said: "You took care of me, now it's my turn. Remember our vows---'in sickness and health'? Well, I meant what I vowed!"
He is my Rock! I adore him! He educated himself about the diseae I was diagnosed with.
Please, learn all you can so that you and your wife will be close.
Thank you so much, I never thought of doing that, I will print out that information. So sorry to hear what happen to your sister, none of the medications help her? And what about you, what kind of medication are you on and is any of it helping you at all. So sorry to hear that you are in a W/C. You are very blessed to have a husband like yours. Some of the other women that I ahve been speaking with are going through what I am. I guess some husbands really do care and others are in denial about all of this, why because we look find on the ouitside but in the inside our body is screaming. Yes there are time that I can't even do the dishes let alone clean the house. My husband hepls once in awhile I feel as though he has no compassion as to what I am going through. I had him read a lot of info on this, but I don't know if he really does understand all of this, each and every day I am still learning about this monster that we have. Yes I am going to print out what this disease can do and the harm that it does. Take care and may God always bless
My sister died before Methotrexate or meds like Enbrel were on the market.
I'm om Enbrel. Methotrexate didn't help me.
Since I last e-mailed you, the Enbrel "kicked in", even more! I have been out of a wheelchair for 3 days now!
I still have pain. My hands hurt bad but, thanks to the Enbrel, I still can use them!
How have you been feeling? Have you tried any new meds lately? Did you show your husband my note?
Take care, girl! Keep in touch. I wish you the very best!
Rosella
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One of the most frustrating things about this condition is "OTHER PEOPLE". I find it more annoying than the pain, and that's saying something. I had to give up work 4 years ago, so consequently my whole social outlet collapsed. Now, when I travel or visit people it is so frustrating to have to educate them on every little nuance about my condition. Leave doors open, too many steps are bad, showers are a nightmare without something to stand on, cant sit up straight for too long, yada yada yada. It gets so high maintenance that I don't have the patience anymore. Im glad I am single and not having to explain on a daily basis. However, EDUCATION is the best way to inform anyone around yu, even to the point of taking them to your rheumatologist, and asking him to impart much needed information. This is such a debilitating condition, and I have cried rivers, BUT it's here, and it can be managed. Im here if yu need to talk. Carolyn
Dear Barbara Ann
Until I found this site, I thought I was going insane. The stories are so similar of pain and social problems. I keep getting "Why dont yu get your hands fixed", my hands are terribly deformed, and these questions come from family. I used to feel disconnected and some sort of freak. Ive passed that now, and just feel sadness that these things are the first things they see, and not me as a human being who just drew a short straw. I hardly have any contact with them, as it got just too hard. I have some wonderful friends who get me thru, and I for them in times of pain. I have learnt to not put myself in situations of stress, as Im in a lot of pain soon after, so there is a connection. This whole journey has changed me for the better. Im kinder, more compassionate, and a much nicer person than I ever was. I hope once again, that your world becomes more bearable as time goes by, but if some times it doesnt, just sign into our world, where yu will be knocked over by the stampede of people who are there to help. Lots of hope, Carolyn, Australia.