Fatigue

[elaine]

How do you try to explain this fatigue to other members of your family? I just can't seem to get across how tired I am all the time. I am still able to work outside the home, but when I come home I am so tired I can hardly move. They are building a gym nearby and my husband is so excited because he thinks I should stop there and swim on my way home from work. I leave work and all I can think of is how I hope I can make it to my car, I'm certainly not thinking about swimming laps! I feel like I am looked on like I am lazy or just need to push myself, but it is just fatigue I can't describe. How are the rest of you dealing with it, and helping others to understand? Thanks.

[scarlet]

I'm not sure what to tell you about getting others to understand the pain. I have a six year old daughter to keep up with. The days when I'm very fatigued I just take a couple of pain pills and try to keep going. Hopefully in June I will get some relief from my RA. I have my first appointment June 17. Hope you get to feeling better soon.

[loneil]

Elaine,
Welcome to the forum... I think we all have a hard time trying to explain the kind of fatigue that we experience. For a long time I tried to pretend that I was okay... I just drug myself out of bed in the mornings and went to work and by noon I was just so tired I could hardly manage. I was really lucky to have a boss that understood what it was like with people with RA. I did finally have to retire before I wanted to, but it was that or continue to get worse. You have to understand that you can't do the things you use to do as fast as or as long as you had before. Most of my family members are now educated to the condition of RA and I also have fibromyalgia which also contributes to fatigue. They couldn't understand why at family get togethers I would have to lie down for a while. They do now... Maybe getting them the information about RA will help them understand. But you have to realize that it isn't a crime to have to rest... It only gets worse if you don't. Good luck and don't try to push yourself to hard... I will be thinking of you... Been there, done that! Linda

[MNmom]

I don't have any advice really but wanted to say I have the same problem with no one really understanding...I KNOW my husband thinks I am just being lazy... my problem is not fatigue but pain. have you talked to your Rheumatologist about the fatique? Could it be a med side effect?

[elaine]

Thanks for your responses, it's nice to know I'm not the only person experiencing this. I am currently on methotrexate and enbrel. The enbrel worked great for me. I am a long way from "pain free", but this keeps the pain at a tolerable level. I'm sure the fatigue is partly the meds and partly the disease itself, so not really much I can do about either right now that I'm not already doing. It is discouraging to not be able to do things like before. I can't do my job as well as I would like anymore, and when I get home I'm so exhausted I can't do much around home/with family anymore, either. I feel like I have to pick one or the other, and I'm not in a position to do that right now. Luckily my kids are teenagers, so that is a big help. Thanks again!

[dipstick]

Elaine, just how well is the Enbrel working for you? It seems like it isn't doing as well as I had heard. I will be receiving my first injection of Enbrel on the 25th of this month. (August) From bedtime to late afternoons, my pain is excruciating. My fingers are curled into my palms every morning and I cannot begin to "work" them open until I take the Prednisone and Morphine----then wait. I feel so bad for you,Elaine. I have fibromyalgia also. Add to that: Asthma, Left Bundle Branch Block, Breast Cancer, Bowel Obstruction, and IBS. Out of all of those, the pain and fatigue are the worst. That's why I can relate to what you are suffering. I truly hope that you find something that will help you more.

[elaine]

The Enbrel really has worked well for me for the pain, swelling, and heat in my joints. Hasn't touched the fatigue, though. I noticed results within 2-3 weeks with the Enbrel. I have been on it for almost 2 years now. My fear now it that it will stop working. Seems from the threads I read and the people I talk to that is stops working after on average about 2 years, so I'm holding my breath and waiting for the other shoe to drop. Hopefully it will work well for you. It really did make such a significant improvement rather quickly with the pain and swelling. I wish you the best - the way I see it, even if it only works for a couple years, who cares! For me, to have such a decrease in pain for a couple years is worth the risk. My main problem is still fatigue, which I know you all understand! Let us know how the Enbrel works for you. I wish you the best, and I'll keep my fingers crossed for you!
Elaine

[dipstick]

Thanks for your kind words, Elaine. I truly hope the same for you. Please keep me posted as to if the Enbrel keeps working for you, as I sincerely hope it does! Have a good day.
Rose ( Dipstick)

[Bonemeal]

hi elaine.. i see you are taking mtx i wonderd if you are taking folic acid as well..
low folic acid can be a cause of anemia.. mtx can bring on fatigue allso..
has your doc tested for b12.. iron.. folate

hope you feel better.. Bonemeal

[duncan254]

could someone please help me. my wife is 25 years old and has severe ra. we have a six year old and a 5 mo. old. she currently has a home daycare but she probably will have to quit soon because of fatigue/pain. she wakes up crying and goes to bed crying. she feels helpless because she cannot really help with the kids or housework and consequently puts a load on me also. she has been on enbrel for about 3 mos. and started methotrexate about 2 mos. ago. these have not helped her out. she takes about 4500 mg of aspirin a day just to take the edge off and that's not a guarantee. her ra specialist doesn't seem to care about her amount of pain. she is suffering right in front of me and frankly im tired of it. i understand she will always have ra, but i know there are drugs that she can take to help. please can someone help. she was diagnosed probably about 6-8 mos ago or so.

[DaisyGirl]

Hi Elaine,

I have huge issues with fatigue as well. My husband coudn't understand why I could get a plate of food and not take it to the sink and wash it when I finished eating. I finally reached him when I said, "Because sometimes it takes all I have just to get that plate of food and eat it. Sometimes, there is just nothing left." I have given family and friends information about the disease, and it doesn't really seem to help them understand what it's like to live with this. I can tell you that switching my MTX from pills to injections has helped. I used to spend all day in bed on my MTX days and now I don't have to do that anymore. So perhaps that could help, if you aren't already doing it. Otherwise, I'm not sure there is anyway you can make them understand the way this disease makes you feel. But those of us here know just what you are going through and I'm sure I speak for everyone when I say, "Feel free to turn to us when you are frustrated or down. We understand and are ready to listen." Best wishes for a lot of great days!

Sandi

[dipstick]

Elaine, I recently talked to two people who have RA. One of them was on Enbrel for nine years before it stopped working. The other one was taking Enbrel for seven years before it stopped working. so---you have hope! Both of them now take Humira. I guess the changing around works, as the body gets used to one thing, then it builds a tolerance to it. But, by going off for a while, one may be able to go back on at a later time. Hope this brings you hope.
Rose

[dipstick]

Does your wife inject the Enbrel into her stomach or thigh? (top of thighs) She must be sure to wash her hands with soap and water, and clean the area that she plans to inject with the Enbrel, with an alcohol swab. (In a circular motion.)
Could she have gotten an infection? Does she see a Rheumatologist? I hope she finds what works for her because RA has put many people in a wheelchair, unable to take care of themselves at all. It is a disease that is progressive and is so painful that it is unbearable at times. Has she tried the Arava & Methotrexate combination? Has she tried Humira?

[dipstick]

A person who has Rheumatoid Arthritis and the pain, stiffness, and fatigue that goes with it, cannot care for children. ESPECIALLY DAY CARE!! My sister died at 49 from RA complications. She was physically unable to care for her children and had to have relatives and her spouse care for them. They could not afford a live-in "nanny" and neither of them would even consider putting them outside the home in a daycare. The kids are the most to be affected and it will last thru all of their adult years. I hope your wife can find the right medicine that she will respond to. I wish you all the best.

[dipstick]

GET A DIFFERENT RHEUMATOLOGIST! HE SEEMS LIKE HE IS AN INSENSITIVE JERK! 4500 mgs of Aspirin is WAY too much. That can cause excessive bleeding in her stomach. Perhaps something else is causing her pain----besides the RA? (such as an infection?) It is so easy to pick up an infection when you deal with kids. Enbrel, Humira, and all of the anti TNF's leave you wide open to infections. Has she gotten checked lately for infections?

[imacajun]

RUN : don't walk to another Dr. There are meds that can help her tolerate this horrible disease. If her Dr. is not trying to help her please find another one. Most Dr.'s care about their patients;she just happened to get a lemon.
She is way too young to be feeling this way and it's not fair to you or the children so tell her to please find a compassionate dr. who cares about how she feels. It is really wonderful that you to care enough to write and try to help her. You are a special person and I hope she finds a dr. soon to make her feel better and learn to live with this so ya'll can go on with your life. You are a gem and I hope you don't give up on her. She needs you more now more than ever and so do the children.
I also have a special husband who understands my disease and I don't know what I would've done without him to help me for the last 20 years but not all of us are that lucky. Your wife is very lucky to have you. Best of luck to all of you.

[dipstick]

Dear Duncan 254,
Has there been any improvement in your wife's condition? Has she seen a different Rheumatologist? By the way, I found out that injecting the Embrel in my thighs hurt like hell! I went back to my stomach. No pain at all with the injection there!
What are all the meds she is on now? I also found out that it is suspected that RA is much worse in a younger female, than an older one. (After 60).
How are YOU holding up? It takes a real MAN to be so supportive as you are being! She needs your love and compassion as much as she needs your understanding and support.
You are both wished the very best.

[KLM424]

Thanks for your responses, it's nice to know I'm not the only person experiencing this. I am currently on methotrexate and enbrel. The enbrel worked great for me. I am a long way from "pain free", but this keeps the pain at a tolerable level. I'm sure the fatigue is partly the meds and partly the disease itself, so not really much I can do about either right now that I'm not already doing. It is discouraging to not be able to do things like before. I can't do my job as well as I would like anymore, and when I get home I'm so exhausted I can't do much around home/with family anymore, either. I feel like I have to pick one or the other, and I'm not in a position to do that right now. Luckily my kids are teenagers, so that is a big help. Thanks again!

Elaine, this describes my life completely. I am fortunate enough to be able to work from home. Most days I crawl out of bed just early enough to eat a quick bite and get busy on the computer.

And then by the end of the day, I am completely and totally exhausted. I usually have to nap before I can even consider thinking about fixing dinner. In fact, I rarely cook anymore because I don't have the energy.

Often I have to stop in the middle of the day and take a nap. The fatigue is always there, but sometimes it hits me like a tidal wave and the only way I can cope with it is to just stop and go to bed.

My mother understands what I'm going through because she has RA and lupus. But other family members really don't understand. But, there's only my 15 year old daughter living with me at the moment and she's too into her social life to really think about it. :)

It's mostly my job that I worry about. I did apply for FMLA just to have the protection. But, even when I use FMLA, the work doesn't go away. So, if I miss work, the stress of all I have to do just increases my fatigue.

I was really hoping that the enbrel would help reduce my fatigue. I've heard others say they had great success from it in that regard. I've only had one dose so far, so for me it is too soon to tell. But, I sure hope it makes a difference.

I don't really have arthritis "pain" other than general body aches and some mild pain in the joints of my right hand. My worst problem has always been the fatigue.

I hope you are able to find some way to cope with your own fatigue.

Here's a great article about fatigue:

http://www.hss.edu/conditions_14370.asp

could someone please help me. my wife is 25 years old and has severe ra. we have a six year old and a 5 mo. old. she currently has a home daycare but she probably will have to quit soon because of fatigue/pain. she wakes up crying and goes to bed crying. she feels helpless because she cannot really help with the kids or housework and consequently puts a load on me also. she has been on enbrel for about 3 mos. and started methotrexate about 2 mos. ago. these have not helped her out. she takes about 4500 mg of aspirin a day just to take the edge off and that's not a guarantee. her ra specialist doesn't seem to care about her amount of pain. she is suffering right in front of me and frankly im tired of it. i understand she will always have ra, but i know there are drugs that she can take to help. please can someone help. she was diagnosed probably about 6-8 mos ago or so.

Duncan, I really hope that your wife is doing better. She really sounds like she is very, very ill. She needs your support and understanding and it sounds like she may need to try a different rheumatologist. That level of aspirin each day is way too much for someone to be taking.

Be patient as you can. It's not a disease for which there is a quick fix.

[addiew23]

I am 30 yrs old and was diagnose with RA, carpel tunnel and cubital tunnel in both arms, depression and anxiety (panic attacks), and fibromyalgia a few weeks before my 28th birthday. I previously have been on Ebrel sure click injections. Methotrexate didn't work for me. My doctor also had me on Triamterene HCTZ one a day for swelling. I could literally gain 5 pounds overnight from fluid build up if I wasn't on this. I am currently 7 months pregnant so am not on my meds; however, when I was, I also took Provigil every morning. Provigil is an alertness med that is non narcotic, not addictive and not a caffeine stimulant. Since the fibromyalgia has me taking med to sleep through the night, I would wake up with no energy every morning. The provigil doesn't make you jittery, but just alert. It wakes up your brain and doesn't affect the way your body feels, except that you are capable of staying focused and accomplishing more because you aren't as tired. Please ask your wife's doctor about it. It has done unbelievable wonders for me. I got married a year ago and have 2 previous children and am trying to explain to my husband I'm not lazy. Thank you for supporting your wife.

[dipstick]

High doses of Aspirin can cause severe stomach pain. It is a symptom of bleeding in there! Have her checked out by an internist.
Hang in there.