Arthritis and Fatique

Hey Y'all...

I wish I *knew* some good tips for fighting fatigue - after reading all the responses to this fatigue question, I want to try Arava, Ritalin, B-Complex with zinc, and bromelain. &lT;not necessarily together&gT; &lT;G&gT;

I have SLE, and have been on Remicade for a little over 2 years, plus Methotrexate, plus prednisone, plus the other 12 odd pills I have to take to counteract the side effects from the first three.

I have learned one really important thing about Lupus. You *have* to sleep. I sleep at *least* 10 hours a night, and 12 is even better. Even so, I never really feel "energetic".

I don't have children, and I'm not married, so I only have to take care of me - You would think this would be a great advantage, and, I'm sure it probably is. I just don't feel like it is. &lT;sigh>

I pay a *wonderful* person to clean my house twice a week - she also does my grocery shopping and pharmacy runs.

I *have* to work - not so much because of the salary, but because of the medical benefits. I'm extremely fortunate in that my insurance pays for Remicade 100%, and a huge chunk of the other drugs as well.

Here's the rub, though.... I have NO social life. I sleep so that I can work. I have to work so that I can have good medical benefits.

I love my job, but I also have a big family and many dear friends who miss me.

Before the Lupus really slammed me, I was sort of the "social organizer" in my circle of friends and in my family - maybe because I'm the oldest child, maybe because I just *LOVE* to throw a good party. :)

I constantly feel saddened and a little ashamed because I can't "suck it up" any more and run what used to be my normal social calendar.

I'm really grateful for all of this info, and I sure hope that something mentioned here can be my "magic bullet". As many others have said before me, I'd take all the pain if I could exchange it for fatigue elimination. -Laura

After being diagnosed with RA 19yrs ago i have found that much of time the fatigue is harder has been harder to get passed. i worked for 22yrs as a nurse have 4 children and i remain married to the same man for 23yrs. It would seem that despite the RA i was doing well. Then i turned 40 and i feel like i have been trying to wake up ever since. i could longer work do mainly to the exhaustion, and trying to keep up with my husband and family was not only painful but depression. Well i knew that i needed to get my life back to some sort of normalcy or i was going to loose my mind.-----These are some of the things that helped me.
1-i talked to my Dr. and he put me on a mild anti- depressant and Elivil to help me sleep at night.
2 i took the money that i used for babysitting while i was working and i used it for house work. Now i know there are people that feel like this is way to extravent, believe me at first i did too--but it has been a real lifesaver.
3 i stay in contact with at least 1 friend every day.
For me dealing with pn, depression, and the overwhelming sense of isolation eased the fatigue factor greatly. -teriann

A lot of great tips here--ones I will incorporate, especially adding more B-12. Thanks, everyone! I'd sooner put up with the joint pain than the fatigue...it's awful. :-(

I found that bromelain, which is a pineapple enzyme (I think), is an anti-inflammatory if taken on an empty stomach. (If taken with food, it's a digestive aid....go figure!) I've found if I take one tablet as soon as I wake up (about 15 mins. before breakfast) and another mid-afternoon, it really gives me back the energy that PA seems to leach out of me. (The recent heat wave in the North East hasn't helped!) It's made a huge difference for me, even in the humid summertime. I would guess most health food stores carry bromelain (pronounced "brom-a-leen").

Also, it's helpful for folks with asthma because of its anti-inflammatory qualities. I don't have asthma but do take it if I have too much dairy or before I go for a wintertime walk. It helps prevent or stop the wheezing I sometimes get under those conditions. -Bryna

Hi.I've been diagnosed as a sufferer of AS and chronic fatigue for 6 years. I find what works best for me is to pace myself and not to say 'yes' when I mean 'no'.
My energy levels fluctuate so much that life at times is a mammoth challenge.
My benchmark is no processed foods, lots of fruit and vegetables, as much water as I can take in a day and stay away from the caffeine and alcohol. I take a multivit and B complex and try to have some time each day when I can be quiet and away from the rat race. -lynne

Hi! I have found the fatigue fighting tips here very useful. I have had RA for the last couple of years and fatigue hit me hard last spring (2001). I would sleep 10-13 hrs a day if I would let myself, whcih I usually did on the weekends. During the week, I tried for 8-9 a night. Unfortunately my job does not allow a nap during the day, but I have used the bathroom trick mentioned by DeeTee.

One thing that did help was changing my meds. I was on 5 mg prednisone, 20 mg methotrexate and Celebrex. My Rhuemy put me on 20 mg Arava and reduced the meth to 15 mg. This combination has gotten my disease action under better control and I have been able to reduce my prednisone to 1 mg.

I also have experienced the nodding when driving and the eyelids becoming lead. What helps me the most is to chew a piece of spearmint gum. Hope this helps someone else. - Jan

I am going through the Lupus diagnosis process. I have read that I am not alone with the fatigue! I am so tired all the time! I work from 3:30 to midnight so getting to bed early is impossible. I usually wake when the rest of the family does around 7 am. My husband doesn't understand why I can't function on 6 hrs. of sleep like I used to just 6 months ago. I nap for an hr. or more in the morning and another hr. before going to work. Someone mentioned taking the Calcium +D before bed and not in the morning. What a wonderful idea! Thank you. One think I find helps is to make my meals smaller. The more I eat at a meal, the more sleepy and tired I feel within a 1/2 hr. or so. I may have an additional snack of fruit or veggies but it has helped a lot! -Kim

I've found that taking Chyawanprash very helpful. I've even found energy to paint my bathroom!Amla fruit is the one of the main ingredients in Chyawanprash.
How to take it:
1 level teaspoonful swallowed 3 times daily, followed by a drink of warm milk or water, for 15 days. Then 2 times a day. -Nat

Hi! I am taking Provigil now for about 10 days. Honestly I cannot say if it is helping or not. I do notice that I am a bit more anxious since taking it. I am going back to the Md. who prescribed on Tuesday and I will mention it to him.-Andrea.

I am 53 and have been Dx. with PA when I was 25. I guess you could say I am moderately severe and ,at present, find that most of my daily activities are limited by pain and fatigue.

I am a patient at the GBMC,hospital, Pain Center. They have had me on Oxycontin now going on 18 months and I must say my pain has been mitigated but I still fight the effects of debilitating fatigue.I would suppose you trade off pain control for fatigue or at least it seems that way with me..

I found that giving myself permission to take the two, naps I need to get through the day very difficult...I am very well supported at home and the acceptance of this new napping that I now require was all on my part...It was I suppose the reality of having to continuously stop my day and lay down for an hour or so further defined me as a person who had a significant disease...

I do so detest the limitations placed on me by PA but on the off side when i do raise from my nap I am relatively pain free for some time and can get back to doing what I want, with in reason...

If any disease deserves defining as "orphan" for sure it is arthritis..There are millions of us, all suffering to varing degrees of pain and fatigue out there and yet there is so little public awareness or for that matter concern about arthritis...

It is still defined as "The old persons' disease" or as simply sore joints, something to be tolerated, and quietly too... How wrong this notion about arthritis is and how needed is more public awareness is needed...

OK I am off my high horse, but I feel better knowing that I am talking to people who know all to well what I am saying here...I have been at this disease survival thing for a long time and I find that it mostly comes down to doing whatever it is that gets you through the rough places...Don't get me wrong the Docs help and the meds that are comming down the road show promise but most of us learn early on that, that visit to the Docs' is a crap shoot...They all try to help but one gets the feeling that they are shooting in the dark when it comes to treatment plans and symptom mannagement...It is mostly up to us to seek a healt care provider who is sympathetic to our pain and fatigue and depression that so often profoundly affect us.

Stay strong. know you are not alone and that you have a right to be as pain free as possible...If your present Doc is now addressing your needs change there are some crackin good Docs out there that care... H. Ellsworth Bichy

Hello! I was very surprised to here of someone else sho is taking ritalin with RA. Originally I too was diagnosed with narcolepsy. It was 3 years before I diagnosed with RA. The fatigue was so bad at first I would sleep 18 hours a day I couldn't get out of bed. There are still days where I have fatigue and I still need a nap most days. I am just glad to here I am not the only one.-H

I am 53 and have been diagnosed with psoriatic arthritis for 20 years,,Lately fatigue has been more in the picture of debilitating aspects of PA. One thing that helped with me was acceptance, that being accepting fatigue as just another aspect of my disease pattern...

Napping has become for me kind of a treatment for PA..Most of the time after my nap I feel better and have a period of time when I can do what I want without pain..I do not if this is the best action that one can take for fatigue but it works for me and one thing I know and that is that arthritis becomes one big compromise...Trading one thing for another...You take a med for pain and you have to put up with fatigue or whatever...Arthritics are in every sense of the word survivors, we have to be -Harry

hi everybody!!! I'm new to this websight but while clicking through the screens something caught my eye, FATIGUE!!! I am 22 years old, and I was recently diagnosed with RA. I knew something was wrong with me, and many of the stories I read were about me, about all of us. Little things were different, the time the place, the degree but it was all the same, it was FATIGUE. I have never been one for drugs and I'm currently taking prednisone, and plaquenil, and nortriptiline and i can barely make it during the day. i drag on like a "slug" as the day goes on, but then I decided to pep up. the first thing that helped me was to learn all that i could about RA, about my meds. Then I found a doctor who practices more of an inner and outer body medicine. I am now involved in an Aquatic program, and a Pace program both which are designed for Arthritis suffers, I also layer my clothes, keeping warm seems to help my fatigue and my pain. I also frequently have massages (from someone who deals w/ people wth some form of arthritis) and I practice Tai Chi, which teaches you how to read your body , its signals, and that inner peace that you get seems to make everything go away. In essence, I think for me a combination of meds, and spiritual wellbeing makes all the difference in the world!!! -Lildell

I find for Fatigue the B-Complex with zinc works so well once in the morning and once at night only if you have a night job, otherwise just in the morning

Also if you take Calcium/vitamin D in the Mornings is a no no as this ?causes? fatigue .It must be taken at night only when you really want to sleep and when the calcium works best.

Napping is good if time permits and lots of water is great also to keep your muscles from cramping. Calcium works well for night cramping as well. Hope this helps someone. -Hurting02

I have inflammatory arthritis in my knees and wrist and there are times when I am so tired that I just know I cannot take another step if my life depeneded on it,so I decided that since I am an 'outdoors' type of person and enjoy being outside doing a lot of gardening, fishing, bird watching and the like that I was not willing to let go of that.I started to take a little stroll every day..just a few minutes at a time, and now I am up to half an hour !! I feel much better and don't get so tired as I used to and I noticed I can go a lot longer during the day without getting so tired.Our local mall has a 'mall walkers club' where all sorts of folks get together and walk around the floors of the mall, its a great club and fun to be in.When I joined ,I huffed and puffed and could not make one floor let alone, 3 !!!! Now I can walk around the outside of the mall with little effort..its about a mile and a half if you walk around outside and a little less if you walk the 3 floors inside. So I would suggest just strolling around a little here and there,you'd be surprised how much better you will feel if you do.I would love to hear from other people who walk for the fun of it.Maybe you could form a mall walkers club in your area malls -Kaye

I just HAVE to say that all of those references to falling asleep at the computer, while you are in the middle of a conversation, etc., have been happening to me for quite a while. (On the day before Thanksgiving this year I was diagnosed with RA after 2 1/2 years of extreme foot pain unexplained.) Until this very second I had no idea that my tiredness and the unusual fatigue I have been experiencing had anything to do with a medical diagnosis -- and of all things, I am a working RN!!! My level of fatigue had been steadily becoming worse and worse and the more fatigued I became the more I would get depressed over being tired and fatigued, and I am such a go getter type. Thank you everyone for enlightening me so much ... I feel like I am learning so much, and it is all such a relief for me to know that all of these things are not just something that is just happening to me all by myself. I love you all. My first rheumy visit is DEC 13th and I feel I have learned more since discovering this site in the past few days than ever before in my life. What a life saver you all are!!!!!!!! -Lynn

My dr has found that the Dhea-S level in my blood was way too low, something that seems to be quite common in RA /SLE patients, it is supposed to be somewhere between 0.9 and 11.0 (depending on age) and mine was 0.56 !! So that was even below minimum! After starting on a higher dose (it takes some time to find out what dose works best for you, so you'll need to have your blood tested every month for the Dhea-S level when taking Dhea as too high a dose causes acne etc) I have found that for me 12,5 mg a day works best and on working days I take 25mg. Just to find out if it really worked I have tried to go without it for a week, and experienced that taking the Dhea is making all the difference in the world! My average Dhea-level is now between 7.0 and 8.0 which is okay.
I think some of the other tips on fatigue are very useful too! -Nikki

I used to take two 2 hour naps each day last year plus sleep 6-7 hours at night. I'm no longer taking naps as much. Although I might need to lay down to rest for an hour during each day, I consider that to be a good thing.

A couple of things have changed for me: one is that I'm eating much better this year than I was last year cutting out stuff like MSG preservative from my diet and increasing my organic fruits and veggies. Also I changed my attitude a little bit...I wasn't going to let fibromyalgia get the better of me. I do have my times where no matter what I do I ache constantly but I've maintained my positive outlook on my life. I lost my job a month before getting diagnosed with fibro but my new job is much better-I support others with fibro and endometriosis (two of the diseases/syndromes that plague me). I'm busier these days at times than I was when I was actually working. -Jen

One of the e-mails you got concerning fatigue mentioned breads as a cause. I find that high fat meals like pizza or cheeseburgers make me too tired to move. My family knows...one trip to Pizza Hut means an afternoon nap for mom! I find if I stay on a high protein, low carb, low fat diet I have a lot less fatigue.-Dee

I usually wash my face in cold water many times a day. If I feel really tired I put on soft back ground music and have a nap only takes 1/2hr then I feel great. ~RJ

While driving I'd get so my eyelids couldn't stay open. I'd bite my cheek, stop and run around the car slapping myself, pour water over my head and the shock of each quit in a short time and I absolutely fogged out of function. I tried to figure what I had eaten when and how much and found that carbohydrates like bread made me sluggish but cutting it didn't help. I found never have a donut or roll with my coffee. It wasn't narcolepsy either. I was young when it started. I never knew when it would hit me or how often weekly, daily, several times a day or longer periods of months. I even went to sleep while playing cards with friends at the card table. The only thing that helped me function was when I felt it starting I immediately pulled over in my car and put the blinkers on, locked the doors and laid down till I woke up with a start and was fine. Later in life is was less. ~Joyce

I found that Cod Liver Oil, 3 times a day really helped my fatigue level. Also B-12 shots. My doctor wrote an RX and I had my neighbor who was a nurse give me one each week! It's an IM shot so if you are brave you might be able to give it to yourself. With MS that 4:00 crash is called "Hitting the Wall." I know exactly what you mean. My neuro suggested laying down every day just prior to the time it happens. Get horizontal is how she puts it. Put your feet up and take off binding clothes. I do this regularly and even if I don't dose off, laying down for 45 minutes in combo with the above supplements has really helped me fight the fatigue. Hope this helps! ~DianeW

I have RA and OA and pace myself every day.
I have a story that is delightful about a tiny litle blonde wife/mom friend of mine from years ago and how she kept up with 8 kids, a giantic mansion and a husband with a VP job of a huge retail company. She told me that when no one was around she would take 15 naps to regroup and recoup. She had little secrets to keep herself refreshed to
handle him and the kids. I take a nap each day and all I do that works is rest when I need it and it feels so good. Another thing we did was get a new TV for our bedroom and we climb up in bed at 8 or 9 and cuddle and rest and laugh and talk.

Curl up and do some self-talk "I am very special and need to lay my little head down to rest and feel good" Hang in there and thanks for helping so many...balance it with rest.~Judy

Good morning! You're looking for fatigue busters. Well every day (let me make that clear - EVERY DAY) take a 15-20 minute break. Since I am at a job, I go into the ladies' room and just sit on the john, lean my head against the wall and close my eyes. When the weather is nice, I go out to my car, lower the passenger side seat, put on eye shades and rest there. Doctors have long said that a 15-20 minute nap in the middle of the day is as beneficial as several hours of sleep at night. If you have to, set an alarm clock, but don't let yourself sleep for more than 30 minutes max. You'll be surprised how much more energy you have at the end of the day and it should beat those 4 o'clock blues. ~DeeTee

I hope you're doing well. I understand fatigue all too well. I know vitamins have helped me, as has going on Weight Watchers -- not as much due to losing weight (which does help some) but more due to eating so many fresh fruits and veggies, and generally being very healthy in my eating. Been trying to stay a bit higher protein and a bit lower on processed carbs. Keeping the carbs to fruit/veggies and whole grains as much as I can is a good thing. And drinking TONS of water. Take your body weight, divide in half, that's how many ounces of water you are supposed to drink in a day. Urine should be a pale straw color, unless you are taking vitamin B, then it should be a pale *fluorescent* straw color. ;-) Most of us don't drink nearly enough. Anyway those are my tricks for helping the fatigue. Also getting out in sunshine when I can, and getting some form of exercise -- usually a slow walk -- as often as my body will allow. And last but certainly not least, if your insurance pays for medical equipment, for about $200 you can get a good quality full-spectrum light box, and that helps a TON if you sit in front of it 30 minutes once or twice a day (put it on your desk or by a chair where you read) If the fatigue is being made worse by seasonal affective disorder it will make a big big difference. ~Aim

Tina this could not come at a better time. I am sitting here at the computer and actually falling asleep. I just dont know what else to do and what else to take. I am so glad I can share this with someone because its really having a tremendous effect on my life right now and its scaring me. I start having to really panic, and its just me. Thanks again Tina. I cant wait to hear what your doctor has to say. ~Rachel

Hi Tina,
About your extreme tiredness. You were telling my story. the day i fell asleep driving and woke up staring a terrified man in the face, I knew I had to do something about it. I fell asleep several times before that while on an empty (thank God) road. It had been increasing with time.....My doc thought it was narcolepsy. I fell asleep one evening while answering a question from Jim- midsentence. anyway, the doc tried me phentermine and it helped a bit, but then he tried me on ritalin....after some dose adjustment, it helped a great deal....Lately, I've had to take more to stay awake while driving.....last time it was 40 mgs.
Even though I've had a poor sleep pattern most of my life, I still think it is more related to the RA and fibro.....Tina, can you just stop and think about how much energy, physical and psychic, it take for us to work past our pain and illness???????? Just the meds alone are a constant drain on our systems. I know your workaholic tendencies...just like mine. I used to juggle lots of balls in the air, like you do. I try to use the ritalin only when I must....and I really do hate the oppressive feeling of being like a piece of roadkill. the ritalin has been an answer of sorts for me. At least I can drive all these miles by myself, since we live where the earth drops off. Hope this in some small way helps you. love, Dorothy


Also, two people wrote about a drug called Provigil. For some reason I don't have those emails, could you write me again and tell me about it?

Share your Fatigue Fighting Tips, please!