Coping with the Chronic Fatigue of RA for 10 years.

By wenegade Wednesday, October 08, 2008

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I am so tired of always being so TIRED! With the chronic fatigue of the RA and the side affect fatigue from the drugs I always feel like I'm 10 steps behind all the time. Pain I can learn to tolerate but when you're always feeling TOO TIRED to do anything it gets disheartening. I retired from a very physical job that I held for 32 years so I don't have that to drain me anymore, but I still have to hold back on the things I try to tackle because I know I'll pay for it physically for the next couple of days. I have an extremely "healthy" husband who, I feel, just doesn't understand RA and is frankly frustrated with my inability to just set my mind on things and do them. Does anyone else feel like this as well?

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leeniekat

10/ 9/08 12:55pm

I was just diagnosed @ 6 weeks ago. For YEARS I have wondered what is wrong with me...I never had the energy to do half of what everyone else does. There are days that getting up and making my kids a sandwich seems a Herculean effort. I am 36 y.o and have congenital joint issues and degenerative arthritis alos, so I have been mis-diagnosed for years...everyone always chalked it up to the other stuff and no one would listen to me when I said THERE IS SOMETHING WRONG!!! Its more than this or taht. I finally went to a Rheumy, against others recomendation, hoping for an answer, and scared to death I would get one.

I agree, I'll deal with the pain, but please let me find a med regimen that will give me some normalcy in terms of energy. I just started MTX and will start Enbrel in 3-6 months. I hope it helps.

wenegade

10/ 9/08 2:15pm

The biggest trouble with our particular disease is that the existing meds that we take also have chronic fatigue as a possible side affect. Double whammy! My husband Rick, can't understand when I can't even bring myself to stand long enough for a shower! I hear you about making sandwiches...Rick thinks I'm just trying to get out of making him his lunch every night. It's like a headache. Try explaining what it's like to someone who's never had one!

Good luck on your meds. I am now on Methotrexate & Enbrel after being on Methotrexate & Plaquenil for 8 years. I also am on Naproxen & Oxycontin for pain. I hate being on so many drugs, but every time we try to withdraw one the whole balance gets thrown off. The theraputic balance is a really fine line.

mkmac4

10/ 9/08 2:30pm

I know just how you feel. It takes most of my energy just to get out of bed let alone do thing around the house. I do what I can but I'm soooooooooo tired. If they could only find something to give us some of our energy back-what a blessing that would be.

MonicaJo

10/14/08 11:47am

I understand...am the manager of a retail store and I am finding it harder and harder to go to work. My house is a mess all the time even with my kids helping me...sometimes when I get home from work I can't even make dinner! I want to wake up one morning, (after sleeping all night of course) jump out of bed, feel refreshed and ready to go, and run around like I did 15 years ago. Can't they make a drug that gives us some of that back! I'd inject myself anywhere on my body for that :) Maybe...someday...

wenegade

10/15/08 3:29pm

I know. With everything they know nowadays you'd think they could invent a drug that makes you feel great, doesn't add weight and makes your hair grow lush and shiny!! Is that asking too much? If I had had to suffer with this disease in my early days when I had young kids I don't know what I would have done!

Judy

3/17/09 1:24pm

Being tired is my #1 complaint to my Rheumatologist. She never has a comment or suggestion (for now maybe there isnt one). After reading your entry I feel better- sort of. I am glad to know I am not alone. The pain I can handle but I was an energetic person before this and thought it would always be that way. I hate feeling like people think I am lazy because my house is not like it used to be. Maybe they understand but how can they when very few people know what I am going through. I have unfinished projects all over the place. I start things and can't muster up the energy to get through them. I have always been the kind of person who does not ask for help. I need to learn to get over that. My GP says go for walks- but then I am exhausted and good for nothing after them. I know I should be grateful I don't have any number of the other chronic and disabling diseases out there and I don't mean to sound so pathetic. It is just so nice to read about others who are feeling the same way I am and can really understand what I am going through. At times I think maybe I needed to be slowed down for a reason- to stop and really enjoy all the small accomplishments and not push myself so hard on the overwelming tasks I set up for myself. Hopefully help is on the way and the drugs we take will improve and really help with the fatigue as well as the pain and degenerative problems of this disease.

jane

3/30/09 10:03am

Wow, this is me all the way. I have managed to still work everyday. I teach high school. But, the fatigue is absolutely the worst. I spent my weekend either napping in bed or napping on a chair in the living room. I hate feeling this way. My mind is always wanting to do this or that. I love working in the garden or doing projects and there was a talk I really wanted to hear yesterday. I did absolutely nothing except to make a meal that I was then too tired to eat. This disease sucks. Like you all said, the pain is bad enough but the fatigue is just not fair. I have tried so many meds. Right now I am on MTX, enbrel, lyrica, prednisone and all the other normal meds that go along with them. I am sure that I could feel worse if it weren't for these meds but if this is the best it gets, I am not happy. Jane

wenegade

3/30/09 8:15pm

I guess the trick to this is to realise that it isn't our fault that things don't get done and that our houses aren't as clean as they should be. I used to love to garden as well. Trouble is...as you said Jane, in your head you still want to do all the stuff you did, but the body just isn't willing. It frustrates me so much to plan all kinds of stuff and if I manage to get them started...I never finish them. I truly believe if I was given the choice of giving up either the pain or the fatigue...I would actually pick the fatigue! That's just not right!

Coping with the Chronic Fatigue of RA for 10 years.

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