Hi, I am one of the new ones here.
Some background: 27, symptoms for 5 years, diagnosed now (a nodule on my finger). Diagnosis took so long because I never tested positive on any of the blood tests, am pretty tender and delicate looking, so this is what I have been told. You are too delicate. Inflammation has sometimes been severe, was always symmetric. Low grade fever was and is an everyday phenomenon. I could not bend my fingers, my toes changed shape. I know it sounds very familiar...
My doctor did not classify me, but I am probably a mild case. Pain in some joints is constant, but not severe and it is just feet, hands and ankles. My bigger problem though is fatigue. I just don't feel like the same person. I want to go to bed right after breakfast, drag myself through the rest of the day and feel like I am half asleep.
So my question is do any of the drugs improve the fatigue side of your arthitis? I know pain killers exist and help, but how about energy boosters?
Wish you all the best in whatever you are struggling with. And want to help and be an active member of the forum.
Welcome to our world! Fatigue is part of this darned
disease. If anyone has any 'magic' cures to increasing the
energy... please, please let us know!
Did the doctor put you on any meds yet? Hang in there, you will
get more education from this web site than you ever imagined, I have!
My doctor has not decided on medication yet. And I am not really looking for miracle drugs, but just wanted to know, whether once you start the medication only pain is supposed to improve or you get more energy
well, if you have it and it's changing the shape of your toes and stuff, I'd say you have some joint damage going on and your doctor NEEDS to put you on something NOW to stop that damage. Or at least slow it down a whole lot. As far as the fatigue. I dunno.
I should have called myself Draggin'Lady
Is your doctor a Rheumy? If not he should be giving you a referral. Or if he is, he shuld be prescribing.I know that I am not as tired when my meds are working. I have less swelling, inflammation, and less pain. The pain tends to make me very tired and drag around all day. Once all that is controlled I feel much better and have some more energy. Being pain just drains you. Physically and spiritually.
I would check with your rheumy before adding any supplements to whatever it is they are going to prescribe for you and what you can do for exercise which can really help with your energy level. Did your doc tell you why they haven't decided what to put you on? It seems with the physiological changes that you shouldn't wait too long before starting something. When is your next doc appointment?
I have some bloodwork that still needs completion (I think lyme disease). I will be going again end of next week. If your fatigue is caused by your RA, and you get on say for example Enbrel, then it should improve....but for me the Humira was the only thing that improved the fatigue. Since I started the Remicade...I have not noticed any improvement in the level of energy I have. I drank enery drinks and coffee...and I put away alot of tea..trying to wake up more and it just doesnt do anything at all. I am battleing it now...but not as bad as when I was first diagnosed. I am at least able to stay up all day now...where as back then I had to sleep during the day in addition to sleeping in late and passing out early in the evening.[QUOTE=ekgekg]. . . I want to go to bed right after breakfast, drag myself through the rest of the day and feel like I am half asleep. . .
So my question is do any of the drugs improve the fatigue side of your arthitis? I know pain killers exist and help, but how about energy boosters? [/QUOTE]
It drives me batty that there's no treatment (or even acknowledgement!
Your immune system is attacking your joints just as it would attack the influenza virus if you had it. The fatigue is from your body pouring it's energy into this misguided "war effort". I've heard fatigue from autoimmune disease described as "having the flu permanently". The only drug that will end the fatigue is the DMARD that works for you. (Disease Modifying AntiRheumatic Drug) http://en.wikipedia.org/wiki/Disease-modifying_antirheumatic _drug
http://www.aarda.org/coping_with_autoimmunity.php This has some advice on how to deal with fatigue. I've seen it, and heard it, a million times before, so I'm not impressed. Ooo, I'm so jaded.
Since there doesn't seem to be much that will help the fatigue in a big way (unless you hit upon a drug that just helps you wonderfully all over), I try to concentrate on the things that help a little. And they really do add up and make a difference for me.
The fatigue is still a big problem and I guess it always will be, but I do have a better time of it when I'm doing those boring right things, and worse time of it when I'm not doing the boring right things.
It's a pain that the fatigue itself goes against doing the little things that help. Being really tired means I'm too tired to exercise, to reach into the fridge for fruits or veggies (but I can reach the M&Ms). Too tired to get on my feet and do something that gives me a mental boost because I enjoy it or it makes me feel productive.
I'm trying to learn this delicate balance. There are levels of fatigue in which exercising (or getting out to do things that help my mental mood and energy) is just impossible, and definitely if there is a lot of pain going on too. That means I have to be extra careful to get some exercise when I can, knowing when pushing myself to do it is a good thing and not a stupid thing. Some days that means the most I can do is some gentle range of motion stuff. Most days, it's just a matter of timing--jumping (hah) at the chance to exercise in whatever times I'm less stiff and achy but before I get a total energy crash, or pushing myself into some exercise during an energy slump when part of me says I can't go on but another part says I know I can do it and will be better off for it.
I'm having to listen closer to my body than ever. But making the effort to do this really has been helping the fatigue, and even the aching, overall.
Resting whenever I can helps some days--though not all days, even though it's hard to give up the pride or the things I want or need to do in order to rest.
That's part of the struggle with exercise too. I don't hate exercise, but with fatigue the big problem that it is, I'll resent using what energy I have to exercise when there are other things that energy could/should be spent on. I'm successful when I can convince myself that for my health and quality of life, there is no other better thing that energy could be spent on right now than some exercise, because I really believe that's true even when I don't feel it. I want to keep as much functioning as I can. I mean I really, really want it, and I can only prove that to myself by exercising when I don't want to.
Keeping the sugar and heavy foods very low and the healthy foods very high makes a real difference day to day too. Some days that's so hard to do. The only thing I can actually be proud of myself in all this is that I'm paying attention, keeping a diary about it, and being honest with myself that I'm either contributing to feeling better or contributing to feeling worse, and trying to be kind to myself. I see this as part of the mind management like Katie talked about.
I've been on Remicade and MXT for 6 months and I've had an incredible leap in energy. I flared for 2 years before this most recent cocktail and the worst part of the flare was the fatigue.
There are pain pills and steroids for the pain but nothing for the fatigue. The fatigue will attack you emotionally and physically. You know you need to rest and sleep but you feel guilty about it. The house is a mess and you can barely crawl from room to room to get to the bed, times u don't make it to bed. The first available chair will do. I couldn't drive for 15 minutes or longer because I would fall asleep behindthe wheel. I drove to Reno to pick my son up at the airport and I had to pull over to a rest stop and sleep. I've fallen asleep at the dinner table, in meetings, at the RD's office, standing up, sitting down, you name it I've fallen asleep there.
Now I have my energy back or almost all of it. I can walk a mile, clean house, paint and tile my outdoor kitchen, go shopping. I still nap but that's called a siesta here in Mexico and is most acceptable. Maybe that's the answer accept the fatigue, hire a housekeeper, and sleep when you need to. A housekeeper is an extra added expense but you have to decide what is best for you. If you're still working then find the money to hire someone to help out. A clean house will help you emotionally. Clutter around you causes clutter emotionally. I know been through it and for the time being I'm on the other side. I don't know how long it will last but I sure to hell am enjoying it while it does. Find a DMARD and Biologic that works, that's the answer.
Just came across this thread on page 2, so I'm late again. In Feb. I was diagnosed with ACD, Anemia of Chronic Disease, in my 2nd month of a terrible 4 month flare. You're anemic because your body is fighting itself so bad, it can't use the iron you're eating. I could barely walk up the stairs. Started Enbrel and now Remicade, upped the MTX and started Pred., and my fatigue is greatly improved. My reg. Dr. had been saying I was borderline anemic for 2 years, but never suggested I do anything about it and with ACD, all you can do is get the chronic disease under control, it doesn't matter how much iron you eat. The RA was probably slowly getting worse all that time and I was too busy to pay attention, yah I felt like sh**, but I always felt like sh**. I've had RA for 20 years, and this was the 1st major flare I'd had. You might want to ask for anemia bloodwork. The Dr I see for the RA now insists all the drugs are working because my anemmia is better, I have more energy than I've had in years, but I wouldn't call the medicene a silver bullet, not even an iron bullet.Hi ekgekg and welcome
Well you pretty much have it all above, and RKGal has some great advice. Hopefully when you get onto a DMARD and I urge you to welcome the medication which the doctors, and you should be seeing a rheumy, should get you onto immediately.
The fatigue is very trying!
Take care, Wendy sorry about the bold, sumthings happening with my fonts here
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