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.

[marykay48]

My husband was told today that he has RA. He has been having muscle pain and his hands swells so much. He is in alot of pain .He was taking ultram and ibuprofen.The doctor now are taking him off the ibuprofen. Will he become crippled? He is so afraid of this.He bought a Harley and wants to ride it this summer. Will they be able to find the right medcine that he can? He is 53 yrs old

[MegsMom]

I'm sorry other people have the same issue with family understanding the fatigue but on the other hand I'm relieved to hear it's not just us! My husband doesn't understand at all and thinks I'm lazy.
I have a daughter who is almost four and I can barely keep up with her. We used to go to the park and go for walks all the time but between pain and just being too tired we hardly do anything anymore. He travels for work every week and I'm so it's just me and Megan. I don't get a break!

Duncan, I'm clinging to the hope that after finding the right combo of meds I'll be able to feel better and function and she will too. I've tried 7 different ones over the last 11 months and they all make me sick in one way or another. I've finally been counseled by other RA patients to try to push through for a month or two and hope the side effects go away.

I'm also hoping "remission" is something I'll actually feel and it will last for a long time. It's scary, being young (I'm 27) and thinking this is going to be my life... but hopefully it will have more up's then down.

One thing that's helped me very recently is I've started blogging. It sounds weird, my hands hurt constantly and I have no free time but just for the last week just having a place to write what I feel uncensored is great. She can check me out- although it's a very early work in progress. http://bealemonhead.blogspot.com/

[Fritz24]

Hello - new here...but living with RA for over six years now. I find the most effective way to describe my overall fatigue and general body-wide discomfort is to liken it to either having the Flu, or a nasty hangover - neither of which ever go away! For me, that is the closest thing I had experienced in life prior to the RA diagnosis that I can relate it to.

During especially bad episodes, I really feel like I'm coming off a weekend bender complete with total fatigue, head and body-aches, some nausea, and malasie.(this is all beyond the normal, constant joint pain)

Most folks seem to be able to relate to one descrption or the other.(especially those that have occasionally partied a bit too much in the past like myself:D)

[Azalea]

Hi. I'm new here, too. Fritz, I also felt like I had the flu for months--tired, achey, and like I was about to get a fever. My skin even hurt. That was in addition to the agonizing pain and tingling in my hands and wrists, but the pain would jump around to other parts of my body as well--shoulder, foot, hip, even jaw. It's taken 4 months of visits to the rheumatologist and trying adding medications, but thank God I now feel as though I'm back among the living. Just a little stiffness in my hands, and some wrist and finger pain first thing in the morning. I started out with naproxen and plaquinal, but it took about a month before I felt any improvement. Then I went on 4 tablets of methotrexate once a week, which helped a little more. The dr. increased the dose to 5, and that has made a big difference. I also got a cortisone shot in the right wrist, and I'm going to get one in the left wrist on my next visit. In addition, I changed my diet by eliminating all sweets, tomato sauce, and anything white (rice, potatioes, pasta). Not sure if this helped my RA, but I lost 15 lbs so far!

[Bandito]

Hi Elaine,
I have RA in my hands not as bad as some so I shouldn't complain. I wanted to respond to your post. I started taking Methotrexate 3 weeks ago and have had the worst nausea for 4 days even taking folic acid then they gave me leucovoirum (Spelling) it is calcium medication and that has fixed that problem. The fatigue is from Methotrexate for me and it has totally worn me down. I was the energizer bunny before I took it even with RA but now I am like a turtle totally wiped out. I am now going off it for other reasons. I do not know if the fatigue from the med every adjusts to your body or not. Right now I would rather deal with sore hands than be totally exhausted every day from the meds. I will try something else.

[Bandito]

duncan254,
I am so sorry for your young family to be dealing with this. What I have found is they have to keep trying different meds until they get one that works really well with the body. Some meds take a while before they start working fully. You have to understand that RA itself is very tiring and can be depressing for that person because they are struggling with not being able to do the things they once were able to do. The pain and total fatigue is part of RA and maybe part of the meds too. I find this is really hard for family members to understand what is going on with a person with RA and be as supportive as you can be. Some days are good days and some are bad. Keep posting and reading about other peoples experiences.

[uplana]

My uncle is suffering with RA and i even can't image the extent of his pain in winter. He always keeps some pain killers with him and always in search of sunlight during winter season to apply his massage oil to relieve his pain. I hope he will become well soon.

[vlada]

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.

I'm sure that it is absolutely impossible to explain the pain to the people who don't feel it. I am very thankful to my parents who try to understand my situation and my condition. I feel the support from them all the time and I don't know what would be if I wouldn't have their support.

[jenstot]

I'm sure that it is absolutely impossible to explain the pain to the people who don't feel it. I am very thankful to my parents who try to understand my situation and my condition. I feel the support from them all the time and I don't know what would be if I wouldn't have their support.

Living with Rheumatoid arthritis can be difficult. It can mean living with fatigue, joint stiffness and fatigue. You are lucky to have parents that support you and understand your condition.

[Mockingbird]

I tried very hard to function even though I had quite a bit of fatique, I would drink tea, and anything with caffein trying to be productive at work. It is hard. I try and then sleep up as much as possible. Diet and strict sleep schedule helps any dviation an I am sunk. People don't get it unless they have lived it. Winter is worse, the cold compounds it for me. When I have days that I feel well rested I am grateful

[westtexasgirlatheart]

I did not know until recently that my ra was probably the cause of my fatigue. So glad to know its not in my head! My adrenals are also shot because of stress and I attributed most of my fatigue to that, but now think it is my ra also. I have had ra for about 4 years and have managed to control it naturally and with diet and exercise. Any suggestions to help with my energy levels???

[naturelover]

Away from all the medicines that are available to reduce the pain for any mild or severe RA, I would just want to put one simple remedy to drive away fatigue. Me and my family, including my wife having mild RA take Green tea regularly for briskness and weight loss. But I don't know whether this may one of the reason for briskness. Come with suggestions.

[Mockingbird]

well naturelover I have to admit I reach for the caffein when I know that I will have a day that I need to stay sharp and be able to keep moving. It is at best a temporary solution. The caffein will make you retain water and swell you up, but since life is what it is sometimes you just need to push on thru it

[DaisyGirl]

Caffine helps me a lot as well, but what works the best for me in the long run is my B12 injections. The doctor prescribed them because of my blood condition, but they make all of the difference in the world. I take 100cc every 2 weeks in my arms or legs. When I don't take them I feel so tired all of the time that I want to basically live in bed, but if I take them regularly I find they give me the strength to get more of the little things done I need to do. Perhaps just taking B vitamin supplements would help. My husband takes the B6 and B12 pills when he goes to play sports and they give him a great boost of energy.

[Azalea]

I avoid caffeine, stay away from sweets, and try to stick with whole grains. These things have helped, but it wasn't until I took medication that the overwhelming fatigue went away. I take naproxen, plaquenil, and methotrexate, but the doctor just decreased the last two.

[Fritz24]

I haven't honestly found any realrelief from the fatigue - neither from meds or diet change, etc. There may be some sleight difference, but I don't honestly think it is the diet or the drugs, but just the "fickle" nature of this disease. On days that I wake feeling able to function at all - at least insofar as "function" is meaningful to me - I can usually go for a couple hours, but even then the fatigue begins to creep back. I always feel tired - but not "sleepy-tired," just as if I had worked hard all day physically and mentally.

It's all still hard to explain and harder to deal wth. It's been almost seven years now, and never gets any better - and I've been on most meds mentioned in this thread. Some hep in the short term - some I have had to go off because of liver complications(methotrexate), etc.

I've learned to live with the fatigue along side the pan as best I can - but i is altogether debilitating, no matter what I do.

Sorry, for all that complaining!!

[naturelover]

My wife is diagnosed with mild RA and she is getting developed of foot pain. She is already having pain around her neck and shoulder. But the foot pain is severe. She is consulting the doctor for the past few months and being undertaking NSAIDs like you were talking of Aspirin. Does this develop any stomach problem or acidity problem. Because she is a asthma patient too.

[Mockingbird]

I do take the viatmin B supplements, Vit B12 and Vitamin B with C complex, yet despie taking them my blood levels are still very low, I heard the shots are painful, is this true? I figure it would be about the same as the blood draws they do so whats the difference?

[DaisyGirl]

It's actually not that bad, I give them to myself in my upper arm or thigh. It pricks a little, but nothing too bad. My MTX shots are so easy I rarely feel them. I've gotten used to the B12 now, so it's not too bad. I've had much worse shots and it's not near as bad as and IV or blood draw.

[prasanth5]

Fatigue is caused by too much of involvement in any form of work even say writing. Mental fatigue is cause by too much of writing. Any kind of work for that matter should be done with a limited involvement for the day. After all we are human beings and we are certainly conditioned.

[kageyd]

Fatigue is also caused by dull, persistent pain - as well as by persistent sharp pain - and the come-and-go presence of pain of all kinds is the major source of fatigue for RA sufferers. I've had osteoarthritis for 40 years, and the persistent dull pain in my knees and hip (had one replaced 7 years ago) led me to fatigue that caused me to retire early from my career and to lead an active but physically less demanding life. Pain is a pain!!