What Causes Rheumatoid Arthritis Fatigue?
What Causes Rheumatoid Arthritis Fatigue? (UPDATED 2016)
Rheumatoid Arthritis fatigue is a weariness that rest cannot cure. It is tiredness without the benefit of the pleasure of activity. Over 90% of RA patients report fatigue as a symptom. It is counted second only to pain as the greatest difficulty of living with RA.
“Unlike normal fatigue, pathological fatigue does not improve with rest. This kind of fatigue is seen in most acute and chronic inflammatory diseases, including arthritis” (Louati and Berenbaum in Arthritis Research & Therapy, below)
Where does this weariness come from? What causes us to feel precisely like Superman with Kryptonite pushed in his face? Does anybody know?
Cytokines and Rheumatoid Arthritis Fatigue
Likely, there are multiple contributing factors. Most suspicious-sounding to me are the cytokines. These are chemicals which some scientists believe cause the fatigue of colds and flu. They are the chemical messengers of the immune system. There are over 150 different kinds of these protein-based molecules.
These chemicals are used by cells as a means of communication. Cells can talk to each other through cytokines, but in people with Rheumatoid Arthritis, excess amounts of them are produced and dumped off into the bloodstream. Some theorize that cytokines cause several RA symptoms, including fatigue, anemia, sleep problems, and skeletal muscle shrinkage (Conquering Rheumatoid Arthritis by Thomas Lee, Ph.D., p.47).
One reason that I’m willing to blame the cytokines is that they are reduced by TNF blocking medications (like Enbrel). And guess what results? Yes, usually fatigue is lessened. This is one of the reasons that fatigue is said by some to mirror disease activity or reflect inflammation levels: when medications slow inflammation, fatigue tends to improve.
The fatigue of Rheumatoid Arthritis is not caused by exertion. However, activity can aggravate it. It sounds like “heads I win; tails you lose.” Rest is critical to surviving life with Rheumatoid Arthritis, but it will not necessarily prevent fatigue.
Funny thing about Rheumatoid arthritis fatigue
I have read as many times that depression causes Rheumatoid Arthritis fatigue as I have read that fatigue causes depression. This is not a fair fight. We have to fight the fatigue while we are in a state of chemically-induced tiredness.
And we must fight back depression from an exhausted state. And how could we be anything BUT fatigued when managing such extreme pain levels over an extended time?
Other legitimate theories for explaining the fatigue of RA include anemia and nutritional deficiencies. Red blood cells can be reduced by both the disease and some of its treatments. Similarly, both Rheumatoid Arthritis and many of the medicines prescribed for it tend to curb normal appetite so nutrition may suffer. The impact of diet and nutrition in RA is being studied, including Vitamin D and potassium.
Rheumatoid Arthritis fatigue is related to rheumatoid disease activity
In 2009, I read several abstracts and medical journals to see if anything new was being uncovered about the fatigue of RA. One experiment was done with mice to show how inflammation impacts the brain. Immune cells infiltrate the brain which, according to one reporter, causes the proverbial brain fog. More recent studies, reviewed in Fatigue in chronic inflammation – a link to pain pathways, confirm that inflammatory activity is a likely source of fatigue symptoms in Rheumatoid Arthritis. Specifically, IL-1, IL-6, and TNFα have been studied.
Evidence shows “fatigue is clearly a symptom included in rheumatic diseases: in rheumatoid arthritis (RA), it is an important outcome to evaluate according to OMERACT, and it has been associated with the Disease Activity Score in 28 joints (DAS28) and the Clinical Disease Activity Index.”
I don’t know how the mice are coping, but I’m sure hoping for answers – because I am tired being tired. How did Superman ever solve his Kryptonite problem, by the way? It was blue Kryptonite.
More on Rheumatoid Arthritis fatigue: 25 Tips to Manage
Recommended reading:
- Helpful RA book: Book review: What to Do When the Doctor Says Its R A
- Recognizing RA: What Is the First symptom of Rheumatoid Arthritis?
- Living with RA every day: 24 for Rheumatoid Arthritis Warriors
I'd love to wash those moncytes right out of my hair! Thanks for this. Going for a little lie down now 🙂
BWHAHAHAHA!!
So glad you stopped by, Synovial!
That is my kind of funny!
Hey,
instead of Selsun blue,
we could sell Krytonite blue shampoo.
That must be why my rhuemy was very happy when I told him that my energy level was back up since taking Enbrel.
Glad to hear the good report.
I'm think mine has me up to second gear agsin, too. 🙂
Thanks for writing about fatigue. I don't think anyone without ailments that cause such awful exhaustion understands it. I have had friends on chemo that suffer from fatigue and they say no one can understand that either.
I also want to thank-you for explaining all this in easy to understand terms. What is your background, education? MD, medical degree? Whatever, you sure are excellent in research and writing.
(Blushing.)
Thank you Dazey. Your RA Warrior is a humble teacher. And a really hard worker. ;D
Thank you very much. I was diagnosed with RA at the ripe young age of 16. You mentioned Brain fog and that is just what I tried to explain to my rheumy on my last visit. I thought I was going crazy. Do you have any more readings on brain fogs because it really bothers me
Ive gotton really bad brain fog and its hard to explain thats for sure.. the word finding mission I often have to come on.. I know the word, i can explain fifty other words like it but yet nothing comes to me about that ONE word i was looking for.. happens to me tons everyday and its irritating.. the word could be dish…apple.. simple things I KNOW I KNOW….
Fatigue is less well understood than pain or erosions in RA. Even the tools to measure fatigue are lacking consense, but that’s already on the way to get better.
We see patients who complain about more fatigue after the inflammation has been treated. My hypothesis is – less inflammation, less pain, less stress – leading to more fatigue.
Some TNF-inhibitors may cause fatigue.
That leaves us at a span of 180° – fatigue might get better with a biologic or worse.
OT: off for a coffee before I see my last patient, still patiently receiving her Rituxan.
CU Lothar
Hello, I was just dx about 1 month ago. However I am pretty sure I have had RA for over 3 years. I had an RF result of 16 back then and the Rheumy laughed in my face and asked me why my doctor sent me to him with such a “low positive”. Well, if you ask me that is an oxymoron. A positive, is a positive, is a positive. After all we have all heard “You cant be a “little bit” pregnant” Well I dont care how many “normal” people in the world have RF factor, the FACT is that a very high percentage of RA people have RF present in their blood. Therefore ANY amount should be followed up. A GOOD doctor would do so as to head off the worst possible to come. Anyway, I will jump off my soap box now. This time around I got a RF of 10 and my NEW doctor retested and I doubled to a 20. So I am “officially” dx. I am taking MX at 10mg every Wed. I also take Folic Acid and at night Hydrocodone. While the pain med does make me a bit drowsy it has always worn off before I awaken because the pain comes back and causes me to wake up early.
I have been experiencing SEVERE fatigue over the last two days. I have had EXHAUSTION for many years nows but nothing like this. This is completely debilitating stuff. Like I am afraid to drive. I had to ask my husband to give me my meds because I was afraid I would take the wrong ones and the energy expended on gathering my meds was an intolerable thought.
Anyway, I was directed to this site by a friend at Daily Strengths where they have a RA support board. I truly enjoyed the article and see the perfect logic about the cytokines. Having said that I also see the perfect logic about taking meds == less pain, less stress, less inflamation == more fatigue. Kind of like the “Flight or Fight” deal. When you are facing an intensely dramatic or traumatic time in your life you have all these energy and can become like a super hero. Then when the trauma drama goes away and it is back to average days again, the “Fight or flight” adrenaline leaves you and your body naturally falls into an intense exhaustion. Its like your body understands that you need a break now, after the physical, mental and emotional stress you put it through. This has happened to me several times.
So maybe it is both of these reasons. Cytokines representing the scientific viewpoint and “Fight or Flight” representing the practical viewpoints. However, I must add that I just received a phone call from my doctor telling me that I should quit taking the Methotrexate I have been taking for 4 weeks. He wants me to call on Monday or Tuesday next week to let him know how I am feeling–any fatigue. He said he will probably put me on something else. Maybe, if I am lucky, the fatigue will only last a few days. Good luck! :cat:
Tamye,
Wow, what a story. I am so sorry that you have been going through this. I experienced a few weeks of severe fatigue like you mention last spring when I had to forego methotrexate because of a kidney infection. I know exactly what you are describing. I hope it doesn’t last too long.
I hope the doctor can explain why the change and what the next step should be. Can I recommendthis post that might help you with that.
Good luck to you too! 😎
Fatigue and brain fog…..
Fatigue has been and is right now a problem for me. Rest when I can and then coffee is something I truly enjoy and the added benefit of helping to keep me going when necessary. Something that tastes good and helps you feel better too 🙂
Brain fog has in the past been a major issue for me. Three things have been the cause of my brain fog issues. #1. Vitamin B12 deficiencies happen to people of all ages, and if you are on RA drugs, then that can become a major issue. Mine is from the inability to absorb it properly. Everyone should have this checked because most people think of it as an old age issue, but the deficiency of this vitamin can eventually kill you and is relatively inexpensive to treat. Memory loss, brain fog, and other physical problems such as nerve damage, peripheral neuropathy, etc… I spent a year falling down and having short term memory loss. It was pretty scary!
#2. Low blood sugar…I have reactive hypoglycemia and if I do not eat enough protein my blood sugar drops causing brain fog, irritability and eventually shaking and crying uncontrollably. I am not diabetic but have a mother who is. Cheese of all kinds or nuts or peanut butter are my favorite foods to keep up my blood sugar level. It is something which can be harder to deal with when you are already tired, to remember to eat. Your muscles NEED protein to function properly and to heal.
#3. Chronic sinusitis: Having allergies tends to keep my sinuses aggravated and having this can lead to infection of the sinuses. Twice a year I usually have this problem, and brain fog certainly can accompany it. Lot of fluids, and decongestants along with an antibiotic when you are unable to fight the infection by yourself. I only use antibiotics when absolutely necessary because otherwise the germs which cause my infection could mutate and become immune to them. This can be a debilitating condition when you are so congested that you literally cannot think properly. Take care of yourself because you are your best defense. 😀
For as much as the carriage pulls the horses around here, it sure is good to hear a why ,hypothetically. And I tell ya it makes perfect sense to me when you type it..
My Sed Rate is 2.0 and my CRP is 5.3 and all other blood tests are normal. I STILL get tired very easily! I asked the Rheumy whether I could try biologics, but he said I really don’t meet the criteria!
That’s interesting. I am sero-negative, but meet all the other signs and symptoms for RA. It hasn’t gone into remission yet with Metho and steroids did nothing to help the inlammation. I am allergic to Plaquenil and Sulfa, so this limits me. We are going to talk about a biologic at my next visit in 4 weeks. I would take the biologic if it would just help with the fatigue!!! That is one of my biggest complaints. I feel like I am too young to feel this exhausted and nobody but others with RA like you all, understand what it feels like.
Very informative. When the overwhelming tiredness sets is when I can tell my Rituxan is wearing off. It’s like clock work.
I am thinking the fatique is much worse than the pain. With just pain, I can still go about my life, it is the extreme ‘cement blocks tied to your ankles’ fatique that is so hard to deal with.
I very much agree with you. I feel like at this point I can deal with the pain, but the fatigue is just so difficult when you are trying to do things in your life like take care of your children, work…everyday life! Uggh. My RA hasn’t gone into remission since dx and I am so tired of being tired!
sometimes its the Fatigue that’s worse, sometimes its the pain. I wish there was a med. that would lessen the fatigue like the pain pills so I could get something done when I’m not in a painful flare.
I very much appreciated the post. I definately feel the exhaustion every day. This symptom is higher on my list than the pain. I feel that I can live with the pain, but the fatigue is so much more difficult. I have 4 children and by the time they are home from school I am exhausted and many days it is difficult to do the things that I want to do with them and then I feel really guilty about it. My husband’s answer has always been “you need to exercise more”. This frustrates me. I understand that walking and stretching/yoga exercises are important, but he makes me feel like I am just being lazy and that my fatigue is only caused by my lack of daily exercise. (I do yoga as often as I can, but when the weather is cold like it always is in Wyoming, I hate to be outside!)
I sent my husband a copy of your information. Thanks for listening!
Caitlin
Hey, are we married to the same guy? 😉
Hi Caitlin,
My name is Pat and I have been diagnosed with RA for about 3 years now. I was diagnosed first with Fibromyalgia (years ago) but I believe that was just the beginning of my RA problem. I have tried the meds my doctor ordered but I have a great fear of them. I took the methatrexate, folic acid, prednisone, vitamins (D)etc. etc. Allthough I think my doctor is tops in her field, I got scared to take the meds because I didn’t feel good, even with them. I was going to take my first shot but chickened out. I know how bad they are and I really was (am)afraid to take it.
I intend to go back and start the shots – I have no choice since I feel like I’m getting worse. Most men have NO IDEA about what you’re going through. My husband is wonderful but every once in a while he’ll tell me that I need to walk more or exercise more. It hurts my feelings since he knows I do more than I should within our house and outside in the gardens. I think he just doesn’t know what else to say.
So, just to let you know, you are doing a great job. Maybe you should bring your husband into the doctor with you the next time you go. It might help.
Take care,
Pat
HELLO THERE, I GET THIS EXTREME TIREDNESS IF I DO TOO MUCH!!!!! I THEN HAVE TO HAVE A COUPLE OF DAYS IN BED TO GET OVER IT. IT HAPPENS ON A REGULAR BASIS IT GETS ME DOWN TOO .
Hi Rhian! I smiled to see your comment. Thanks for stopping by. Too true… I often plan 1 day up and out and the next day sitting still writing.
he fatigue has been debilitating.it has been there for 38 years before my arthritis was diagnosed.i managed by napping and or meditating(with eyes closed and tried to look for silent places).also took Arcalion 200 which is sulbutiamine for energy,almost every day.i drank,and drink lots of coffee,which is supposed to be bad for arthritis,now i’ll try to switch to black and green tea.i think the article makes sense.nina
Nina, That is a long time to be tired! What kind of treatment are you on? Have you tried a Biologic medicine like Enbrel?
I have had RA since my teens. At the age of 50 , on the nose, it started getting worse and worse. Now at 56 there are days that life is just too much to deal with. Can’t find the energy to work, can’t afford to not work. Is there any good way to get my energy back. I have been dealing with the pain for most of my life and it is only impossible when my RA decides that my teeth need to go. But my fatigue is getting harder and harder to deal with. The drugs for RA have way too many side effects for me. I prefer all natural things that will not kill me to make me feel better.
thanks for this piece. This is one of the hardest aspects of RA for people to understand.
agreed. Thanks, Beth.
Thank you for the information, it is difficult to find people who really understand what you are going through. This is a helpful page.
This article was so helpful and I would like to thank you. I emailed this to myself to keep and share with my family.
This ‘RA’ is new to me and frankly, I’m overwhelmed. I’ve been in bed for 6 days straight and needless to say, I am very depressed. I have an injury in my neck which I deal with … This just makes issues worst.
Thank you for this site, it is so informative.
My first thought in reading your title was that with all the pain I have and everything I try to hide, because I don’t want to be a burden on everyone, it’s probably a given that I will suffer from fatigue. But reading what you wrote, I’m also inclined to notice that my fatigue is greater when my pain is beyond my threshold.
Of course, my fatigue problems seem to pre-exist before my RA diagnosis/pain. But, it doesn’t pre-exist before my horrible back pain.
I suffer from depression. It sort of runs in the family. But I don’t think the depression is what’s causing the fatigue or the RA.
I remember a doctor talking to me about the cytokines once when my daughter was really sick and just wanted to sleep. She explained that it’s the body’s way of saying, “Hey! I need rest to make myself better.” And reading your article a light bulb came on above my head. If they are there because of a real attack on the immune system, I wouldn’t doubt that when we are flaring, they would be in abundance, giving us the same message.
I have also found that during my flares, if I increase my vit D intake (for some reason, I don’t absorb it really well) to 2 pills a day instead of 1, that the fatigue is not AS bad. But then, it could also be psychological.
In any rate, I don’t think we can pinpoint any ONE thing as to why the fatigue is great in RA patients, because there are so many factors to consider (just like you wrote).
Hi Kat, Thanks for adding to the discussion points. Yes, if we were considered “sick” with flu or other virus, resting & feeling fatigued would be EXPECTEd. Well, we often ARE.
I’d just like to add while that I’ve never had clinical depression, but I’ve had horrendous fatigue. So, I’d never blame a patient’s depression for the RA fatigue that I know is a physical condition. Much of it was before dx and it did make me feel guilty that I could not move… I agree there are many factors. But it’s also amazing how if a patient finds just the right treatment, BaM! They go back to their old routine pretty quickly.
Thank you for this website.
I am new to RA (at least in diagnose) and while the meds are reducing my joint pain the fatigue is getting the upper hand.
I have cruised the internet to read anything about RA and fatigue or get a testimony from other RA patients who is suffering from it severely, but I find that the focus is more on living with the pain rather than with the fatigue. It is mentioned, but I need to hear that the fatigue I feel is similar to other individuals with RA. And have it confirmed that its not just in my head. And get some serious advise on how to cope, cuz its truly doing a number on me.
While I know that fatigue is a part of RA; your post is is the first thing I read describing exactly what I feel. Its not just in my head. 🙂 Thank you.
I have suffered from sever RA exhaustion and weakness since 2004, it gets so bad that it makes me collapse. It starts with feeling weak in my arms, disorientation, followed by increased ringing in my ears, followed by cold sweats, resulting in a total collapse of my body with the inability to move or speak. I am aware of my surrounding but can not respond to anyone or thing, because I am overcome with such extreme weakness, I can’t move.
This happens to me every time I exert myself by just doing every day tasks, such as grocery shopping, washing dishes, cooking, going to the bathroom, etc. When I feel weakness in my arms or legs and disorientation coming on, followed by the ringing in my ears getting louder, I have about 30 seconds to get down in a prone position or I will collapse. In any case I will be unable to move for about 10-15 minutes. The first time this happen I thought I was dying, but because it happens on average of once per month for the past 10 years I have learn to live with it, but it is embarrassing when I’m out in public and this happens, people look at me and treat me like a drunk homeless person.
I am writing this post because I am an Army Veteran, and the Denver V.A. doesn’t believe me, they told me that RA. Does not cause exhaustion or weakness it only causes joint pain. I glad I found all these post cause I intend to copy all of them and send them to
Denver S4 Arthritis Ullrich, 6 South, Specialty 4
Department of Veteran’s Affairs
Eastern Colo, Health Care System
1056 Clermont Street
Denver, CO 80220-3808
I also suffer from shortness of breath and clicking/poping in my knees, but the exhaustion and weakness allows me to walk on average only about 100 steps at a time, but when my arms start getting tired it time to start heading home
As an RA sufferer for 30 years, thisarticlereally helps me by describing my symptoms in detail!
JF Jones
I was on disability for about six years, had bilateral knee replacements and returned to teaching high school math 3 years ago. FATIGUE. I never knew about brain fog but I’m experiencing THAT too, now. Thank you all so very much. You get it. You get me.
How can you tell when the fatigue/malaise/brain fog is induced by RA, or by the methotrexate?
–Mike
Thank you very much for the hard work that goes into this blog!
I am 38 years old, 16 years with psoriasis, and 9 years RA-type arthritis. Could you all here tell me about (or point me to a post/article/etc. about) tracking the exhaustion day(s) vis-a-vis the day of dosing the biologic?
New theory I am working on: I have two types of exhaustion. One is when my compromised immune-system is trying to fight something real off (this can last days). The other might be related to when I take my biologic (and seems to only last about 12-16 hours). Has anyone noticed exhaustion on the day after (or for some hours following) a biologic dose?
Thanks for any information you can provide!
I had RA. Humira worked, Enbrel worked. Methotrexate, not so much. Certain foods worsened flares. X-rays showed inflammation. I was accumulating tools to help me to turn knobs, and get dressed. I felt I was dying, and I cried regularly. I was in so much pain. Even lying still.
A kook doctor put me on thyroid meds. I didn’t show a need for it, no evidence. But this doc thought I could use a small boost. This set off a chain reaction of needing more. I was scared to death, because the studies show that thyroid meds are linked to bone loss, and my DEXA’s had already shown steady bone loss. I was osteopenic and borderline osteoporotic.
I found a thyroid hormone board which advocated the natural dessicated hormone. Among other things, they talked about optimal thyroid levels, how some people have pain and fatigue, and pointed to doctor advocates for ridding those symptoms. I never believed that would be me. I was just trying to understand the lab tests. I used the knowledge I gained from them to find a good doctor. It was not an endo.
I took enough thyroid meds to get my ft3 to above the midpoint of the lab’s reference range. My pain vanished. Like it had never been there. Then I found some other web sites that claimed thyroid meds cures fibromyalgia. But I didn’t have fibro. My rheummy doesn’t understand what happened or where the pain went to. She herself injected cortisol in my wrist joint to help with my pain. She says my RA markers were extremely strong. She wanted me to continue on an immune suppressant, because this could affect any of my organs, my lungs, etc.
It’s been 7 yrs now and I am still waiting for the pain to come back. To the shock of everyone, my DEXA’s have showed improvements every year since I got on thyroid. As of last December, I am no longer osteopenic. I take the dessicated stuff. Not the synthcrap.
I haven’t found one endo who believes this, or even who believes I need thyroid meds. You see, the endo’s rely on a TSH test, which is a pituitary test. My TSH did not show a darn thing was amiss for thyroid hormones. Endos don’t know how to read the tests for actual thyroid hormones. Or the free thyroid hormones.
This story is absolutely true. I wish you all the best.
I wonder why more rheumys don’t test for thyroid antibodies. Although I guess they don’t treat unless the tsh levels are off. Then there is the issue of treating “subclinical” thyroid levels.
Regarding the comment about the unfairness of the fight against fatigue caused by depression: there is increasing evidence that excessive amounts of cytokines can be a factor in depression. This lends credence that depression might actually be an inflammatory-based disorder, much like rheumatoid arthritis. By reducing the inflammatory response, and therefore the excessive dumping of cytokines in the bloodstream, might we be able to alleviate rhuematoid arthritis,depression AND associated fatigue??
Interesting theory. Have heard something like that about some other mental illnesses. They still have so much to learn about the inflammatory cascades.
I can tolerate the pain with the help of medicine but the fatique really makes it hard to get through a day of work. Is it possibility go get some social services money instead of going to work? I just can’t make it through another year at school.
Fatigue…for me it’s the worse part of RA. I used to be a very active person that always had projects going on and things to do. I taught water exercise classes and water therapy classes (ironic, isn’t it?) I’ve read many things about it from inflammation to it’s all in the head. I have a very hard time slowing down. If I stop, I can’t get going again, so I keep going and going…
I’ve been told I have moderate RA that could get severe w/o my meds. Fine, I understand that, but my lord, the fatigue really gets to me…
I hear you, dldg. I am lucky enough to be pain free most of the time now. But the fatigue hits like a tsunami at times. It is so hard to describe to people who have not experienced it, since it is not like ordinary super-tired fatigue. It comes unannounced, and always uninvited.
Saying which is worse pretty much depends on the experience. When you have non-stop pain that never drops below a 6 or 7, it’s hard to say the fatigue is worse. But in others, the pain is much less or even those like you said you are actually “pain free” at times – of course the fatigue is worse. It varies by patient and in the same patient over time. Maybe change is some relief. I don’t know though – my pain is constant. At least my fatigue is not.
Kelly…my pain is partially under control because of the meds, and it is SO much better than before I started treatment. I guess pain in one form or another is a constant in our lives, it’s just some days are worse than others. I lived w/ FMS for years before it finally morphed into RA, but it seems like the least effort wears me out so dog gone much. A simple thing like “doing” the Mall with my sister for a couple hours exhausts me! I know one of my problems is the fact that I try to do too much. I’m sure you’re familiar with that particular malady! It seems to me you are a real go getter that pushes through fatigue and pain to do what you need to do. Maybe many of us who have RA are afflicted with that problem. We remember who we “were” and want to keep being that person. But I guess that is for another, more philosophical, discussion!
It is important for me to stick to my Fatigue rules:
* Early to bed an rise at same time daily
* Eat healthy breakfast an hour after rising
* Have a double-shot cappucino between 11am and noon
* Eat protein packed lunch at 1pm (forget being overweight – that’s just a side-effect of having RA
* Take some gentle exercise as outlined by physiotherapist
* Try to get an hours nap after exercise
* Try to get out for a ‘walk’ to get fresh air & vitamin D
* Use Internet to keep in touch with fellow RAers
* Take enough pain-relief (stick to the prescribed doses and ensure I have enough Oral Morphine if needed.
I started taking a med for brain fog about a year ago. My doctor said that he takes it on mornings after being on call. Because I am a shift worker, it was covered by my insurance. I take Nuvigil and one of my colleagues takes Provigil. I only take 1/2 tab before I go to work. (a whole tablet seems to cause a headache) It does seem to help and though they say it doesn’t interfere with sleep, it does with me if I take it too late.
I had no idea they made something for the brain-fog. This is only my second post. I just found the site yesterday and can’t stop reading. It feels so good not to be alone – with the “RAD” Thanks to all of you and your post and May God Bless each of you!
Most people don’t take medication for it, but some doctors have tried as you see here – also there may be supplements, even vitamin deficiencies that can end up being part of the puzzle – every single little bit can help with fatigue or brain-fog.
And yes fatigue is probably one of the worse symtoms – especially when you have to work. Where do we stand as far as disability goes or getting permission from employers for a nap:)
This was exactly the question I was asking myself today. I agree that this is almost more difficult a symptom to deal with than the pain. It is hard to explain to anyone else this feeling of being “unplugged” from your energy source and how previously simple every day activities take so much out of you that you want to return right to bed after just getting started. And many of the medications used to fight RA, like prednsisone and methotrexate, seem only to make fatigue worse. I certainly hope one day to feel my “get up and go” hasn’t departed for good.
I am a nursing student. I am not positive, but I believe the fatigue experienced by RA patients is due to the fact that the ERP (erythrocyte sedimentation rate) is increased during inflammation. So, during chronic inflammation like that experienced during RA, a lot of red blood cells, or erythrocytes, are lost. This means, among other things, that there are fewer red blood cells available to carry oxygen to the tissues. This results in hypoxia. So it seems to me that the fatigue is actually a symptom of hypoxia due to inadequate oxygen deliver because of anemia caused by the increased destruction of red blood cells by the body.
I was diagnosed with RAD in Aug. of 2010.( My first symptoms began on June 10th 2010) I started Enbrel in Sept. 2010. Relief was almost immediate which was somewhat of a surprise to my Rheumy because my CCP level was over 250 -off the charts.
Because I was having an increase in symptoms she put me on Methotrexate , starting with 3 tabs, then increased to 4. I still was having mild symptoms so she increased them to 5. Thats when my symptoms escalated ESPECIALLY the fatigue –which had been a very mild issue. I went back to three tabs last night.So far today, none of the horrendous exhaustion and fatigue. For me, Methotrexate seems to be the culprit. Of course it could just be the disease, but the fatigue and feeling Really bad starts the day after I take the Methotrexate and eases later in the week.
I just slept 11 hours and woke up feeling as if i had been drugged! Which I hadn’t 🙂 I should have been at work this morning.
I was diagnosed with RA 3 1/2 year ago although I think I have had symptoms since childhood. My RA Tests are always negative. Methatrexate worked like a charm until I got Non-Hodgkin’s Lymphoma last summer- so now I can’t take any immune suppressing meds. I’ve failed a trial of Malaria meds and I can’t tolerate sulphur drugs – UGHHHH!
I’ve always been a very active person and exercised a lot – RA is really cramping my style – I forget things, my memory gets muddled and in my business that’s a real problem. I am 53 and married my husband after my breast cancer was diagnosed in 2010. He’s younger than I am and we’re both very fit and active,(well I was).
I keep blaming the forced menopause that Chemo has thrown me in to and the oppressive sweats I now have – they are really debilitating. That’s what is making me tired and depressed – right?I keep telling myself that I simply don’t have time to be depressed and take meds which I know will only screw up my sex life with my husband even further.
But I also know that the RA is insidiously destroying my life and the Retuxan they gave me last week just didn’t seem to help (in fact it made my fatigue worse). My joints hurt but not as badly as they did before cancer number 2
(I had a frozen shoulder, bi-lateral brusitus in my elbows where they actually bled under the skin? Swollen feet and hands, painful knees and ankles, and an incredibly stiff neck. Then an enlarged heart sack and swollen eyes?)
What do you do if you can’t take anything for the RA? What do you do if you don’t tolerate depression meds well?
What do you do if you sleep until 11.30!
Looking for answers 🙂
Hi Karen, I’m sorry it’s so rough. It’s so much for you to tolerate at once. I hope the Rituxan works to help reduce your RA symptoms too – I know it seems like it knocked you down for now but it can help RA too. Maybe you could tolerate it long term at the RA dose. I know someone else with both diagnoses who is helped by it. I’m not sure about the depression meds but I know there are several types so I hope you can find a dr who will work with you on different types or doses to see if there is anything that will help you with that or maybe a counselor can help you find something else that could help at least a little bit with the depression. I’m sorry that answers are so hard to find & this disease is such a battle.
While I am sorry so many people have to deal with this, it is still a relief to know it’s not just me. Fatigue has gotten so bad in the last year or so. I know part of it is because I push myself (work, school, family) too far. I was very bad about taking meds, and Enbrel didn’t do it for me. Had a brief period of spontaneous remission but not for long. Now taking Simponi monthly – and doing as much as I can of the things I should. Frustrates me not to be able to convey the feeling of complete exhaustion to others. Afraid they think I’m lazy sometimes. Still get frustrated with myself because while I know I have different limitations, I still want to be “normal” – whatever that is. Feel guilty most of the time for not being as effective at work, or neglecting my family. I just keep hoping it will get better. BTW – didn’t know brain fog was part of RA – just thought I was goofy. Keep up the fight, everyone, and thanks for sharing.
I guess most of us are a little goofy at times, Chris. 🙂
Seriously, I struggle with the same battle about limitations & feeling guilty. I hope it does get better for both of us. You had that one remission, so we know it is possible!
RA fatigue is most frustrating in that it can’t be predicted at all! It’s part of the roller-coaster of RA. I could have a busy day, feel expectedly tired and then have insomnia until 3 or 4am. I could have a quieter, restful day and be so tired I can barely awake the next morning. Sadly, that’s the part that is so hard for others to understand! It makes absolutely no sense for those who aren’t fighting this battle!
One of the biggest difficulty with this fatigue is having to give up activities that I want or need to do, in order to rest. This places a whole different burden on my family. I can’t meet all their needs like I’ve always done and that hurts all of us!
I’ve learned to cope by doing all that I can on a good day and basically laying low on a bad day. Sure wish I could schedule those better! 🙂
I would also like to know what website we can order the “blue kryptonite” from! That would be awesome! Hee-hee!
I too take Nuvigil for debilitating fatigue!!! I am a teacher and could not work without it!!! This is my third school year taking it…I have tried every summer to do without it and end up sleeping 12- 18 hours most days without it!!! It helps me get through the school day and most days I do not need a nap after school like I did without it..It also helps my brain fog…It helps me to concentrate and helps with word-finding issues…I am so pleased that my insurance covers it this year after my doctor appealed the decision! I pay a $60 dollar co-pay for 30 pills…I use the 150 mg tablets and cut them in half…A whole pill makes me nervous and jittery but half does not…I recommend anyone with horrible fatigue and brain fog to at least try this medicine to see if it will work to help you…It does not solve all my fatigue problems but helps tremendously and I can work!
Jewell
I was diagnosed with RA about a year ago after going many doctors for all the symptoms one of which was fatigue. My rumitalagist dosen’t think that it is directly associated with R/A but she dosen’t blow it off she implys that it could be assciated to the medications as well as the body dealing with R/A. I found the important thing is to try an stay active so you don’t let your joints swell and need more pian meds which I have noticed will increse the fatigue.
This article has been of great help.Because i am so tired of being not only tired but literally exhaustd !Acurse for me because i love doing things and being active !!Have had Rh. for over 20 years now and not used to it ever!
I have just found this site and am overwhelmed by all the comments. I was diagnosed with RA in April 2011 after being admitted to hospital with an unexplained swollen right foot that was excrutiatingly painful. I had had psoaeisis for many years prior to this. My rheumie prescribed methotrexate, prednisone. , folic acid and recently arava. My pain has reduced significantly however the fatigue is overwhelming. I recently pushed myself to physically achieve something over a week and ignored the tiredness and when I hit the wall with tiredness I actually saw both hands in the course of half an hour swell and pain before my eyes. A clear message I hadn’t been looking after myself. I have recently had to retire early from a very valued job because I couldn’t do the job because of the fatigue and pain. I was angry for months and then realised it’s better than the alternative and I am living each dayas it comes.
I’m glad you posted this. I am fairly new to this. I go to the Rheumatologist on 12/12-call every day for any cancellations. The fatigue is pretty bad for me. 1. When I can get out of bed and go to work–I can hardly keep my head off my desk. 2. My family understands that I hurt–but can’t understand why I want (need) to sleep.
I was an active non-stop kind of person so it has been an adjustment to go to this slow walking; can’t do as much as I use to do person.
I have a question: Is there a such thing with RA and the fatigue as conserving your energy? Like–resting during the weekend (doing little) to conserve my energy for work during the week? My husband suggested this; this past weekend.
thanks for what you do kelly