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    Old 01-30-2005, 02:45 PM   #1
    jenlap76
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    Unhappy Boyfriend thinks I'm "faking" fatigue from RA

    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

     
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    Old 01-30-2005, 06:07 PM   #2
    Angel77
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    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
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    Old 01-31-2005, 05:44 PM   #3
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    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.

     
    Old 01-31-2005, 08:15 PM   #4
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    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!!!!!!

     
    Old 02-02-2005, 12:32 PM   #5
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    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

    Last edited by tjcarst; 02-02-2005 at 05:56 PM.

     
    Old 02-04-2005, 03:14 PM   #6
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    To Jenlap: Your first priority right now is your health. Second, is your kids. I have RA for 8 yrs now. My husband is pretty good but men have a hard time with other's illness. I take enbrel and am close to normal now. I still have a little fatigue but not much. And I am a lot older than you so maybe its that. Sorry to hear you have nowhre else to go. I am serious. You need good, serious medical care and dont wait for someone else to tell you, Just go to a rheumatologist. You need to be well for your kids. Let the housework go for a while. If your insurance doesnt cover enbrel you might be able to get remicade which is similar. If I have to stay in bed for a day I do so and I dont give a damn who likes it. You MUST take care of yourself, you have young children. The boyfriend better learn to live with it. Remember, your kids come first.

     
    Old 02-09-2005, 07:14 PM   #7
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    I am really sorry that you are having such a hard time. It is a very hard disease for others to understand. Most people are really clueless about it. I have had RA for 4 yrs. In the beginning I was extremely tired like you describe. You really need to see a good Rhuem and get started on a medical plan. I currently take Plaquenil, Lodine and MTX injections. I am doing far better and the fatigue is far better. It is still common but kind of rolling instead of steady. In the beginning you do tend to feel worse until you get used to the meds. My husband had a hard time in the beginning and he is really a great guy - but it shook him to the core when I would cry from pain or when I would get scard. Get help, you will feel better and than you will feel like you are back in control. I wil pray for you and your family. You are not alone and you can beat this disease!! Cindy

    Last edited by cindygre; 02-09-2005 at 07:15 PM.

     
    Old 02-19-2005, 09:57 AM   #8
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    i had horrible fatigue but i used antibiotics to cure it. The inflammatory arthritis is going away slowly. ask your rheumatologist about antibiotic therapy.

     
    Old 04-01-2005, 09:30 AM   #9
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    I was diagnosed with Ra a few months ago and then through blood tests for medication possibilities also tested positive for Hepititis C. Many of the symptoms are similar. Fatigue is a huge problem.

    My husband is an "older" body builder and I was in the gyms and in great shape for years. I've always worked full time and brought in very good money. I have always had high energy and been a little hyper. Not now.

    Thank God, over the last year, I moved my office home. I process loan files for loan officers. That has been a really helpful. I can even take my phones with me and lie down if I need to.

    My husband and I have had difficult times over the years. He is bi-polar but is now on a natural supplement that has been like a miracle.

    Much to my surprise he has been wonderful through all of this.

    I don't know what to tell you, but I don't know if I could hang with someone who treated me like your boyfriend does. It is extremely important for you to be positive and have positive people around you.

    You will be in my prayers.

     
    Old 04-01-2005, 01:30 PM   #10
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    Hi there! I really understand how you are feeling. I am also 28 and had the same problem with my boyfriend. You will probably find that the hardest part of the whole illness is people understanding exactly what you are going through. I hear alot of " OH I know I have arthritis in my knees!" It definitely goes beyond Arthritis! The diagnosis of an autoimmune disease is very hard to get. It took me 2 years to get the right diagnosis and who knows if it's still the right one. Hang in there and dont let it get you down. Your boyfriend will come around when he understands more about it. Just keep reading and get as informed as you can on autoimmune diseases. Everything will start to make sense. Good Luck!

     
    Old 03-03-2010, 12:51 PM   #11
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    Definitely take him with you to the doctor. He needs to understand that you have an auto-immune disease and your body is literally attacking itself. I can't relate to the RA, but I've had countless conversations trying to explain to my husband that I have depression- I'm not just sad, and it doesn't just go away easily. He knows all about it now, knows that I have a chemical imbalance of seratonin, yet every once in a while he still asks, "why are you so upset?" And I have to tell him, "I don't know why I'm upset... I'm just depressed." and he kind of goes, "oh, right, I forgot." And we laugh together about it. The main problem is that he overlooks it most of the time and just sees me as a person. He doesn't look at me and see a depressed person; most of all he doesn't want to admit that there's anything wrong with me. Hopefully, deep down, he's really worried about you, but keeps saying you'll be fine because he truly wants you to be fine. Men sometimes have a hard time accepting the fact that they cannot be a superhero and fix everything for the people they love.

     
    Old 12-03-2010, 09:38 AM   #12
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    Unhappy Re: Boyfriend thinks I'm "faking" fatigue from RA

    This message is a few years old, but I feel like I'm having the same problem. I am not exactly sure what I have just yet but my doctor thinks it's lupus. I have been so out of it and my muscles are always sore just to walk across the room. I have lost most of my hair and have a full body rash including on my face. My face is always swollen and hurts to touch. My mom has had the reaction of talking about me dying all the time. She is going overboard with it because her father died from an autoimmune disorder (well complications due to one). My father and friends are completely opposite. They assume I'm just stressed or lazy. My roommate, a health nut that assumes to know everything about health stuff tells me that I can get over it while I can hardly walk up our apartment stairs without using my arms to pull myself up. It made me feel like she was saying, "why don't you just go to the gym and you'll be fine."

    It really bothers me to feel this way and to know that people just look at you and think you're pathetic or something. I feel so alone. Either it's mom my calling me every day freaking out about my kidneys or liver trying to kill me or it's the rest of my family and friends who don't care and think I don't want to do stuff just because I'm being a lazy recluse or something.

     
    Old 12-03-2010, 01:20 PM   #13
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    Have you been to our Lupus board yet? I bet you'll find others who had the same thing. the tests for lupus are much better now but 50 years ago, it took an average of 12 years to diagnose lupus.

    Keep seeing your doc. Have you seen a rheumatologist yet? they need to keep doing tests. What most people don't realize about auto-immune disorders is that 1 single test does not tell you if you are sick. These diseases are "syndromes", a cluster of symptoms and test results that give the diagnosis and usually, not all the symptoms appear at the same time. And the test results can vary with the severity of the disease.

    Even RA is a cluster and they have a list of criteria and you have to have a certain number of them....and positive blood work is only one of the criteria. I have severe RA but not a single blood test is positive except the generalized ones for inflammation. But they know because I developed rheumatoid anterior uveiitis....it's a kind of eye disorder. It can happen with other auto-immune disorders but it cleared up with an RA drug...one that doesn't help other disorders like lupus.

    Don't listen to the others and don't let your mom scare you. Once you have a diagnosis, then you'll get treatment. But you need to know what is wrong first as best you can. The drugs for lupus are extremely strong and they won't give them unless they are positive that is what you have.

    You have to take care of you and if others push you, just say NO. You have to look after you until you know the answer. They aren't docs so they don't count. Mom will relax once you have answers. Until then, just let her rant. She's scared.

    Let us know how it goes and do talk to the folks on the Lupus board.

    hugs..........Jenny

     
    Old 12-04-2010, 09:44 AM   #14
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    Realistically people either "get it" or they don't, and the ones that don't are usually in the 90%+ range from what I have witnessed personally over the years. As thyroid disease, mono, fibro, full body OA, and now inflammatory arthritis has attacked my body on top of DDD and 2 brain injuries I just am incapable of being athletic or even active. My ex husband too accused me of faking, being lazy, attention seeker, and a bad mother when I first got sick at 24 (17 years ago). Just to live with what we do is hard enough, factor in parenting and ridicule and it makes it horrendous. If your boyfriend does not get with the program that will become your life essentially, then you need to set the boundaries of what you will and will not live with from him. My son later told me years after I divorced his dad that it was harder listening to him berate and belittle me than to see me suffer from the physical side. Don't allow yourself or your child to be emotionally hurt continuously from callous behavior. It is unhealthy for you both and the stress exacerbates your symptoms. Empathy goes a long way in life in making an unbearable situation bearable. You do not want his behavior to influence (if your child is a girl) the type of man your child will one day choose to be with, or (if your child is a boy) the behavior your son may use towards a woman. Our decisions on how we allow ourselves to be treated last a life time for us and our children. My son is graduating high school this year and will enter the adult world with a capacity for empathy and understanding for those that don't choose to suffer as we do. He has a greater appreciation for good health and the life changing fall out from bad health. I lost so many friends after my brain injury and the arthritis that developed within a year of my accident b/c I truly was no longer active and am able to do what I used to. Life changing accident/illness will weed out the supportive and true friends and loved ones from the ones that only want you if you are "normal". Be strong for yourself and your child(ren) as you are so worth it!!
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    Old 12-09-2010, 05:59 AM   #15
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    Re: Boyfriend thinks I'm "faking" fatigue from RA

    I deal with the fatigue from my RA as well. I'm only 15 years old. Both the pain and the fatigue really get in the way of school. Like today, I'm taking ANOTHER day off. Just hang in there hun, I hope things will start to look up for you. Just remember, you're not alone
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