Boyfriend thinks I'm "faking" fatigue from RA

[jenlap76]

Hi. I am 28 years old, and I have been experiencing extreme fatigue for the last two or three months. I finally went to the doctor after a scary episode with my daughter not being able to get in the house after getting off the bus. I went into such a deep sleep during the day that I slept through her ringing the doorbell repeatedly for about 20 minutes, and her screaming for me. She finally found an unlocked window and came through it to get in the house. When she came up to my room and woke me up, I was completely confused. I thought that it was morning and she was late for school.
I promptly called the doctor and made an appointment. He did a physical exam (I had swollen lymph nodes), 4 blood tests, and a urine test. Everything came back clean, and the blood tests indicated that I had already had mononucleosis at some point in my life. He said it was "probably just a viral infection", and to call him if I didn't feel better in a couple of weeks.
Meanwhile, I began to get backed up on my household chores, because the fatigue was so severe that I couldn't even function normally after a full night's sleep. I would have maybe 1-2 hours a day where I felt okay, then my eyes would just start shutting on me. My loving boyfriend at this point said, "I think someone's been playing the sick card a little too long".
That prompted me to call the doctor again, because I had to "prove" to him that something was wrong with me. I told him that something deep down inside was telling me that this was something serious, which he didn't believe either. This time they sent me to the hospital for 5 blood tests and a couple of X-rays, and low and behold, I was right after all. My doctor called me to talk about my results the following Monday, and diagnosed me with Rheumatoid Arthritis. I didn't think it was any big deal at first. The doctor told me to take Ecotrin three times a day and come back in four weeks.
After I got home, I looked it up on the internet and found out just how awful and potentially fatal it is. I printed up seven pages for my loving boyfriend to read, hoping he would better understand the way I'm feeling. His reaction was basically, "You'll be fine. My mom has arthritis". I explained to him that this wasn't the kind of arthritis he was thinking of, that it affects your entire body. He stuck with the story of I'll be fine.
That was about two weeks ago. I am basically tired all of the time now and I am miserable. My once spotless house is now a dump, and he is yelling at me for it saying he can't do it all. I told him when I do get a small burst of energy, I do as much as I possibly can. I have been sleeping my life away and it feels like it has lost all meaning. I'm not even a good mother anymore. To top it off, the person I NEED the most support from is accusing me of being a drama queen. I asked him why he thinks I would WANT to spend my life this way, which he had no answer for. I feel so alone in this. The kids care, but they don't fully understand either. I have been laying in bed all day on a Sunday napping and crying. It's like he hates me now for getting this disease. He is supposed to be supportive and understanding and he's not. If he had something bad happen to him, I would wipe his a__ for him if I had to. That's love. What I'm getting isn't.
Has anybody been in a similar situation, or have any advice for me as far as the fatigue goes? I still don't know too much about the disease, but I know I can't live like this. I know everyone is going to say I should leave him, but I have three kids and nowhere else to live but my car. I'm just hoping someone can relate with me. Jen

[Angel77]

Hi Jen...It's been a long time since I've posted anything on these boards and just recently found out that's it's compliments to RA.

I haven't had the technical diagnosis, as I can't afford more blood work and what not, but it started last summer with my knee swelling and staying painful for several months, followed by crushing fatigue and what finally got my attention was the fact that after several months of feeling like I slept funny on my hands, I realized that I hadn't gone a single day without them hurting....then the redness started, the swelling and now my legs are a lovely shade of purple/cadaverish looking thing.

I understand all too well what you're going through and wish I had an answer, but I'm still trying to pick myself up off the floor.

I started on plaquenil, and for the first few weeks just kept puking, then the swelling went away and so did that blah feeling...felt good for the first time in years....but reality tends to hit regularly and it's all back, but not to the same extent. But, I also have compounding health problems...narcolepsy, grave's disease (post RAI) and a brain injury, to name just a few....lovely, huh?

Well, I will try to post again in a few, but my office is a little chilly and my hands are locking up, so gotta wait for the heat to kick up....TTFN, hang in there....Angel

[MomwithMS]

Jen,

I wish I had words of wisdom or comfort. . but sadly, I do not. However, I can let you know that you are not alone in relationship difficulties due to illness.

About 8 years ago, I was diangosed with MS. For the first several years, I was in pretty good remissions. I was able to work full time, attend college, and even graduate.

My husband and I have been married for twelve years this year (and together for 16 years). We have two children, ages 2 and 4. My husband accuses me of "choosing" to be sick. At present, in addition to the MS, I have also tested ++ for the DNA antibodies of lupus, and my neurologist thinks I have psoriatic arthritis. I have fatigue so bad that some days, taking a shower is more than I can manage.

My husband pulls the "I work and you don't" crap on me all the time. He refuses to help with the children or around the house. He accuses me of "eating bon bons" all day long. My poor fingers are so swollen that on several of them, you can't even see creases in my knuckles. My ankles constantly feel sprained and hurt so bad. Then, my left foot hurts from a constant muscle spasm in the arch. To top it off, I get dizzy spells that last for days from optic neuritis.

I am receiving state disability at this time - awaiting social security disability approval. One would think that my husband - the man who stood in front of all our friends and family and said the vows INCLUDING "in sickness and in health" would realize how sick I am. But nope. . he is selfish and thinks only of himself. In fact, my arthritis medication ate a whole in my stomach, and I was trying to beg him to take me to the ER. I didn't know what was wrong, but I was doubled over in pain and sobbing. He just yelled something about me being lazy and sleeping when I should have been watching our children. I pulled the telephone down off my wall and called my mom. She came and got me and took me to the ER. I was diagnosed with an ulcer and colitis.

anyway, I totally FEEL your pain! I really do, but I have no words of wisdom for either of us. I wish I did. . . . . I truly wish that I felt that I was worthy of a healthy and respectful relationship, and I would DEMAND my partner do the same.

[jenlap76]

I can totally relate with the "lazy" accusation. He told me that he can't do it all, but he's not. The house is a wreck right now, and I am a neat freak and he knows that. If he were "doing it all", wouldn't the house be clean? He wants me to be June Cleaver and have dinner ready AT 6 pm, no later, no matter what. I too, sometimes cannot even manage a shower. I haven't taken one today yet, but I will have to before I go to bed because I feel so gross. Luckily my shower has an area where you can sit down, so when I don't have it in me to stand for 15 minutes I sit and take a shower. I think when I get in to see a rheumatologist, I am going to drag him with me if he's willing and have the doctor tell him how serious this is and how fatigued it can make you. Hopefully he will go and begin to understand. It's like he thinks I'm using this disease as an excuse to get out of housework. The whole thing is, is that the REASON I initially went to the doctor is because of the terrible fatigue, and he knows that. I wish he could feel like I feel for just one day. Aaaarrrggghhhh!!!!!!

[tjcarst]

Hi everyone-

I'm sorry to hear you are all having such a hard time getting your loved ones to understand. I don't have RA, but a very close friend was diagnosed with it about 4 years ago. She was 32 at the time and a very athletic, fit person. She had the joint pains and swelling, significant weight loss, and fatigue.

Before diagnosis, she moved home to care for the heavy housework and yardwork because her parents were getting up there in years. She started to experience the above symptoms. She came to visit one time and was not able to maneuver a half flight of stairs without turning sideways and gingerly lifting first one leg and then the other up or down a step and using the hand rail heavily. She was diagnosed with RA. After a few months, medication helped her significantly. Now, you would never know that she has it.

Her father passed and her mother suffered a stroke last year, so she now has all of the work herself. She visits her mother in a nursing home nearly every day after she gets off from a full-time job (she works at a Walmart where she helps to manually stock shelves in the warehouse area - often operating a fork lift - difficult work for any woman, I'd say). She landscaped her entire yard this year, digging up the grass and planting fabulous plants. Her energy levels are probably greater than mine now and I exercise nearly every day. There is hope for RA sufferers. You really need to get to a RA doctor and see if you can get some relief. And your life back.

Every three months she comes to stay with my husband and me the day before her RA appintments, this way she won't be as fatigued. And this is when she feels good. She wants to be as rested for the strength tests as possible.

I remember reading about RA when she was first diagnosed. I read that many relationships don't last and that surving this disease is a hard thing. I hope things have changed with the introduction of new treatments and medications. I apologize that I don't know more about it.

I just wanted to let you know that I had experienced RA from the other side. I was quick to get out on the internet to learn as much as I could so that I could be supportive of my friend. After hearing how horrible RA can be, I am even more willing to do anything for my friend. Your family and loved ones should be doing the same.

My heart goes out to you all. Hang in there. Get your loved ones to realize what you are experiencing.

tjcarst