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

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

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. :(

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!!!!!!

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

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.

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

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

This is a bit long and I had to edit parts of it due to it's length. I hope it helps.

The Spoon Theory

My best friend and I were in the diner talking. Like normal girls our age, we spent a lot of time in the diner while in college, We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.



I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

That was an awesome story thanks for sharing that with us! :)

If you would like to read the full article, do a ****** search for spoon theory. It isn't my personal story; just one that fit the situation. :-)

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.

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!