Ok experts, here's a question for you about how you manage the fatigue and 'smouldering' flares. Sometimes I get so suddenly tired I feel brain dead and HAVE to lay down. I try getting up and walking around, doing something physical, etc. to keep from getting sleepy, but haven't had much luck in fighting it -- until I zonk out for a while, I am no good for anything. Does this happen to anyone else? Also, when the pain is bubbling just under the radar but it isn't bad enough to make you stop, should you stop anyway, or push through it? I suppose it is different for everyone, but I am interested in learning strategies for dealing with my 'crashes' or facing up to just accepting them...hope this makes sense! thanks.
Don't push through it unless you have no other choice. Every time I do, I end up being sorry for it. My kids will watch me and say, "Mom, you're doing too much." When I've pushed it, I've ended up in the hospital or being pulled off work for awhile.
When you go ahead and overdo it, I believe you are actually pushing that overactive immune system into overdrive. When we put them into stress, I think it only makes the disease more active. If you rest, I think it turns the volume down.
The rest is very important. You don't want to rest all the time, because you quickly lose muscle tone, gain weight, etc. etc. But if you are really feeling the fatigue, take a nap. Then, when you feel a bit refreshed, go back to your normal routine. Having some kind of exercise is important. But on these off days, you either need to skip it or do less.
And yes, this happens to me all the time. If it is really interferring constantly with your days, then it's time to discuss it with your doctor as your meds may not be right for what you need.
Deanna, you actually answered my question too. I think we are all stubborn with RA, trying to hold onto who we used to be. I apprecate your insight from experience. RA really does help us to look at life differently and see what's important. I designed a t-shirt that says "RA Sucks" my friends were surprized because that's "not like me" but you know what; it does suck and it feels pretty good to get it out there. Now, I just take things one day at a time and enjoy as much as I can, thanks again, Rain
I am learning to listen to my body. hugs
I have to agree Pup. RA is not a disease that you should be "Brave" about and tough it out. Eventually you'll learn to gauge the warning signs and learn to take time out.
I work part time for an event planner. I have one event every year where I know I'll push myself way past my limits. It's a three day event working 10 to 12 long hard hours on my feet....lifting and carrying things I know I shouldn't. It's not something I look forward to....but I count on the extra money every year to put a down payment on my car insurance so I can get my payments to a manageable amount every month. It's that one time during the year where I know for a fact that I'll be over doing it. I think this year I'm going to plan to take an extra day off from my regular job to recoup. A three day event will totally take me out for two days. By the time it's over I can barely stand on my fett they hurt so bad. It's hard work....but once a year (for the money) I get through it.
The rest of the year.....I've learned that I can't work like that anymore. It's just not worth the hell I have to go through.
Hello to all!
This is an excellent question! I also think it's a question some, if not all, of us will never stop aking ourselves!
If one is not depressed, one wil still desire to do many things! The desire does not disappear just because the ability to do things seems to fade.
After 22 years, I still have to struggle with "trade-offs." The way my condition is... I just cannot do much. It upsets me tremendously.
Yet, I feel like I don't have a choice. I am so limited in what I can do, I have to accept the "beating" I take (the relapse) or I would never be able to leave my house! Yet, after reading quite a bit here, I am wondering why I am so very limited. I am wondering if I am being treated as well as I could be...as far a meds, etc. I am going to look into that immediately!
Great topic... I think that we all take our rests when needed. Although, like many of you I hear my kids all the time saying you are doing too much mom rest, leave it. It's very difficult for us type A personalities to leave things. It has taken me 5 years to over come some of the type A things. Now I take my 20 minute naps and I am good to go for a bit. Otherwise like many I am down for a day or two from pushing too hard. I know too much rest isn't a good thing, either, and want to avoid being a lazy bum. It's hard to tell if it's needed rest or just that I get tired from being lazy. Hi Aerpup! You don't sound like you are a "lazy bum." Do other people tell you that you are? Or are you afrais you will be perceived that way by others? Gotta get that "tape" out of your head! It's just going to
It's okay to allow yourself to rest. I have realized that many people have a jusgment about the fact that anyone must take a nap, etc. Yet, they aren't the ones who need th nap(s)/rest right now. Try to "educate" them when you are not too tired. Try to forgive them for their ignorance! Most importantly, and this is not easily done, let yourself off of the "hook!" Forgive yourself for having an illness (one or more). Not that you need to forgive yourself because you have somehoew "transgressed." It's more something like: forgive yourself because you feel you have let yourself and others down. The very best thing you can do for yourself is to learn to love and to accept yourself no matter what! These illnesses often stop us from doing some of the things in life that helped our self-esteem. We've also had to stop doing some sctivites in life that we had loved and were very much a part of who we are as individuals! This can all be difficult. So..the sooner you get started, the better!
It's all easier said (or written) than done! Please do not let the "lazy bum" idea even enter into your head! If you find it there, boot it out! Tell those types of thoughts that they cannot rent any space in you head!
Best Wishes!
I will try to answer your question about my meds! Current Med List : Synthroid, prednisone (5mg.), Plaquenil, Coumadin/warfarin, morphine 180mg./day, dilaudid 4-8mg./day, Soma (prn), citalopram, Wellbutrun SR, clonazepam (at bedtime), dextroamphetamine (prn, as directed), albuterol, Flovent, promethazine (for nausea as needed for pain med side-effect), Migrazone/Midrin, can also take lorazepam (prn). Those are the most of the meds. I cannot take NSAIDs at all. Have GI bleeds with them.. Had my first GI bleed with Vioxx! (It had helped me so much with pain!) So..about 6 months ago, my rheumy had gone to a world rheumy "meet" and she had learned about the "compounding" of "topical NSAID meds. They are usually combined with bupivicaine, which is an analgesic. They are both put throughj a "mill" of some type and are mixed into a "PLO Gel Base." The docs can prescribe varying percentages of various ingredients. The thought about these topical meds, backed up by some studies, is that very little of the NSAID gets into your bloodstream, if used as directed. It does help. My joints are even worse off without this cream. So.. currently mine is a ketoprofen 15% bupivicaine 1% gel. (If anyone tries this, do not accept the compounded mixture if it is "gritty" at all! The "grit" is medication that will never absorb into your skin!) The gel quickly absorbs into the skin, leaving no residue (not even oil on your skin!) I have been told other meds can be administered this way. It is great for people having difficulties with any med might have on their entire system; yet, they may be able to tolerate the med in a very small amount, topically, and applied right on the site of pain, inflammation! Another one commonly used is compunding a muscle relaxant this way. If they make you too sleepy or whatever difficulty you may have with them, the cream can be lightly rubbed into your neck, shoulders, back or anywhere you might have muscle spasms!
Lovie, my current diagnoses are: too many!
Truly: Severe OA; CFS/CFIDS/ME; fibromyalgia; myofascial pain syndrome; carpal tunnel; peripheral neuropathies; hypothyroidism; chronic and severe migraines; 2 cervical ruptured discs--- one has an osteophyte growing inward and is not far from the spinal cord. I have asthmas and multiple allergies in many different categories. I also have an "Acquired Adult ADD," (not an ADHD, for sure, there is no "hyper" in my illness, except "hyper- immunity!"); Anti-phospholipid antibody syndrome; crepitus ("crunchy"); chronic tendinitis; chronic bursitis; some yet unidentified demyelination of my CNS and PNS. The demylenation is not in the areas "struck" by M.S.; currently two neurologists give the opinion that they think the brain demylenation areas are from severe migraine. (Likely most accurately, these areas are demylenated by anti-phospholipid antibodies, as the nerve sheaths missing are made up pf phospholipids, I believe.) I have taken Plaquenil for two years now at 400mg./day. When I discontinue it...and I did once... for a month (against my rheumie's advice)...I turn into even a worse mess! Really bad! So..we do not yet know which medical/rheumatological "conditon(s)" are "hiding behind the Plaquenil! Nothing to look forward to, I am sure!
Lovie, does this information help? I think I've covered th major info. I was an avid athlete. No medical problems in high school and colege. Suddenly was very ill with the whole "mono' that never went away story. Then diagnosed with the CFS/CFIDS/myalgic encephalomyelitis "syndrome. I was dx'd and followed by one of the world's top CFS/CFIDS/ME researchers for 20 years. (I was a "case number" in his many published journal articles.) And so it goes! It has been a very long time! Does this help to answer some of your questions? I hope it does!
My best to all!
Years ago I was on plaquinel when I got the bright idea that I'd stop my meds; against doctors advise. It didn't take me long to figure out I was wrong.....and yes; my doctor was right. A life time of pills and now injections is my future. No getting around it. So you didn't list RA in that (LARGE) bunch? If they are treating you currently with Plaquinel; would a biologic work for your Circumstances? Bless your heart....I can see what a struggle you are facing. I hope you don't thinking I was prying. You just mentioned that you didn't think your current treatment was working and I was curious as to what that treatment was. I quit when I get tired. I don't care what anyone things about it. But I don't have a husband to complain (one of the luxuries). In the beginning though, I couldn't give myself permission to rest. So, I would call up my best friend and she'd tell me go take a nap. Now, I can do this myself. I've always been terrible about taking care of myself. I had to learn, and I'm still learning as most of you know, that I have to take care of me. Otherwise me won't be around for those people who really do love me, like my kids. Don't feel guilty about resting. When I'm feeling better, I'm the busiest thing. I love doing things. But Deanna must take her naps. I really feel the pain sometimes when I nap. I will wake up in terrible pain and all my main joints will be hot. That tells me that it is the disease. I think this is a good topic because it is something that alot of us will probably never get really used to. Having to plan your activities around your down times. It is sort of like when you have a toddler in your care. You know there are things that they have to do like meals and bathing and dressing, then there has to be play time, and you have to allow for nap time and down time or they are just impossible to deal with. Our RA bodies are the same way. If I have to work, I dont do much of anything else that day. On my days off, I plan for some housework or chores, some family time, and some rest time. I dont do a full day of any of those. If I decide that I am going to spend the whole day cleaning house, I am wiped out for 2 days after. If I decide to lay on the couch all day long with the idea of resting up for the rest of the week, it doesnt work and I am bummed out 'cause I didnt get anything done. So I think each person has to find the formula that works for them, and then be willing to tweak it when need be. When I am flaring, my rest time increases...on good days it may just mean a 15 min break with a coke and a book and my feet propped up. But everyday, I know that at some point I will need a break. I used to go for marathon shopping trips at the mall, then hit the grocery store, come home and cook dinner and clean the kitchen and not even be tired. Real hard to believe now. Now when I get the mall bug, I go to a handful of my favorite stores, eat in a resturant, and go home and kick back on the couch or on the porch for the rest of the day. Grocery shopping days, that is the only thing I do that day.
Copyright ArthritisInsight.com