I have been reading through the various discussions and have found so much great information and advice. I’m wondering if anyone has suggestions for dealing with fatigue.
I work full time as a medical technologist at a small hospital. I am on my feet for most of my shift. I am stiff in the mornings but once I get up and going I usually feel fine while I’m actively moving and working. However, on my 45 minute drive home my body seems to just go into shut down mode. Some days I can barely get out of my car when I get home. I have no energy left and after sitting in my car for 45 minutes, I am so stiff and all my joints ache. I just can’t make myself do hardly anything at home. My husband and kids don’t seem to understand how wiped out I am from work. It takes all weekend for me to rest up for the next work week.
I have psoriasis in my fingernails and elbows only (for 23yrs pre-PsA). I was diagnosed by my rheumatologist with PsA 6/14. (It just hit me in almost all of my joints suddenly.) I was referred & actually tentatively diagnosed by a FNP during an a visit to the after hours clinic. A friend manages the lab for a rheumatologist so I was able to get an appointment quickly with her help!
I take 15mg methotrexate by injection weekly, folic acid 1mg 2x a day, lecovorin calcium 8hrs after injection, Nexium, mobic 15mg ( PRN only, I have a sensitive stomach), propranolol 60mg, Cymbalta 60mg and Ambein 5 mg every night. I have tramadol for pain but rarely take it. I just don’t like the way it makes me feel and it keeps me awake at night. I started on Cymbalta my last visit 8/14 & discussed that he thinks that I might have fibromyalgia as well as PsA. I’m not sold on the fibro dx.
I just know that I have about 50% of my previous energy level and I just feel so tired all the time.
The ambien alone will cause you to be tired …also. read the side effects on the others. I have both fibromyalgia and PsA… not just the diseases but the prescriptions to take just to get by cause both drowsiness and fatigue. .try to browse through sites with your family. .it may help them understand. Good luck hon…
Meds and disease both cause your fatigue - working full time can be hard. You need to make the BEST choices in your diet and rest. Your family needs to step up. You have a disease that is not going away. My kids put it best years ago when they were little - "Why are you wasting your energy on the house?" I now save my strength and energy, (when possible) for them and things I LOVE to do. I don't do anything at home after work - unless I want to. They cook most nights, carry all laundry baskets and dishes for me. I don't even carry the groceries in anymore. I am also in bed by 9 pm most nights. I need every minute of sleep I can get. BLAST THE MUSIC IN THE CAR AND DANCE! Moving helps - who cares what people around you think. I have to keep moving all day or my joints get bad - so i am always rocking in my chair or car - even if I am reading in bed.
Fibro is common with PsA. Don't disagree - and the Dr will recognize it based on where the pain is.
Leuvocorin is folic acid, in a stronger dose. But it does not stay in your system and needed more often. Maybe take folic acid on the other days. I know you skip a day on MTX with folic acid, but it has been a while for me, so check on that.
aberry, I hadn’t thought about that fatigue for a long time. I was a classroom teacher. I would push push push myself and manage to stay upright and functional until I sat down. So I didn’t. But at the end of the day, I’d be at my desk finishing off papework, and then it would hit me. There were days that I didn’t think I’d make it to the car. And then it took every ounce of determination that I had to get there. The half hour drive was so difficult that I found it hard to raise my arms to hang onto the wheel. It’s awful, isn’t it?
In the mornings, I would lie in bed, feeling as if I was trapped in a dead shell of a body. Again, I would have to push myself to get upright. Shampooing my hair was agony: I had to raise my arms and move them.
All I can say is that, with effective treatment, you will very likely feel better. In fact, when I finally started Enbrel, the lifting of the fatigue and depression was one of the first things that happened. The pain was still there, but not overlaid with the crushing fatigue, so it was more tolerable.
Here’s an article from our Newbies’ Guide. Or have you seen it already?
I think a lot of us here have blamed ourselves for what ails us. Back in those days, though, I was undiagnosed. (I think you were as well, Sybil, right?) When the bloodwork came back back showing no problems, who else was I to blame for my exhaustion? The doctor said to eat better, lose some weight, exercise more … I ate a very healthy diet, but course I couldn’t do the other two. So then whose fault was it that I felt like a bag o’ dirt? And what was the point of asking the doctor about something that was clearly my own fault, because I was weak, the next time I went? As Sybil says, wouldn’t want anyone else to waste time thinking like that. But it’s hard not to.
Aberry, you have a diagnosis. Tell yourself that you are amazing (AMAZING, do you hear that?) for managing to do what you do, despite this disease. And as Karen and Nic.Pat suggest, your family needs to be educated about what you are dealing with. Knowing that you have arthritis is not good enough: they are likely to think of their friend’s Dad who has arthritis in his thumb and how it wrecked his golf swing. They need to be clear that what you have is a seriously debilitating disease that isn’t going away, and that they need to step up to the plate.
sybil said:
I was a teacher too, and although I’ve compared notes with Seenie before it still gives me the strangest feeling reading this - the experiences are so very similar. And there I was at the time, seriously beating myself up for being ‘weak’. Wouldn’t want anyone else to waste time thinking like that.
Seenie said:
aberry, I hadn’t thought about that fatigue for a long time. I was a classroom teacher. I would push push push myself and manage to stay upright and functional until I sat down. So I didn’t. But at the end of the day, I’d be at my desk finishing off papework, and then it would hit me. There were days that I didn’t think I’d make it to the car. And then it took every ounce of determination that I had to get there. The half hour drive was so difficult that I found it hard to raise my arms to hang onto the wheel. It’s awful, isn’t it? In the mornings, I would lie in bed, feeling as if I was trapped in a dead shell of a body. Again, I would have to push myself to get upright.
Omg here I am again and Seenie and Sybil I thought you were writing my biography. Remember the fatigue getting up in the morning having to hop into the shower–washing my hair was such a chore, too! My shoulders and arms were soooo weak and every inch of my body begged for some sort of relief. At the end of my shower I would switch to cold and let that cold water ‘wake up’ my body. I know that sounds crazy but it made me feel good for a few minutes. I finally went on enbrel about six months ago. There is a day and night difference in how I feel now. Absolutely no fatigue or achiness and stiffness. That’s all gone! And I had a dr once tell me maybe it was fibro. I didn’t believe that, either. PsA has A LOT of symptoms–not just joint stiffness and weird fingernails. I swear by enbrel now, even though I was afraid to start it. The only thing I can advise is once you start feeling better, be cautious and don’t overdo it. My back is damaged from PsA and I’m having horrible back pain (sciatica). It’ll get better. But I think it happened because I was catching up on enjoying my new nimbleness and just gotta be careful. Funny thing–now that I’m not so tired and stiff, when I take my shower I don’t run the cold water on myself anymore!
I am pretty new to this PsA business myself, and I'm still in that fatigue with you. It's awful, some days the fatigue is worse than the pain. I have in fact said to my husband - "I could deal with the pain if I wasn't always so exhausted!" I've gotten 3 doses of Humira in me so far, so I'm hoping one day I can look back like some of these other guys and say - yes! I remember that! - instead of living it every day. For now, I have to go into survival mode to make it through... my advice to you - rest every chance you get, be kind to yourself, and hold on to hope.
Being newly diagnosed as well I can’t offer much advice but I can completely relate! You said exactly what I would, explained exactly how I feel but put it in words much better than I could. My left side rib area, chest and back flare so bad nothing works lately but I have learned how to wash my hair and drive right handed. The fatigue is crazy. They found thyroid probs when labs first came back and treating that means I no longer fall asleep with 15 mins of sitting down but I constantly find myself avoiding it anyway because once I do its over. Either pain, stiffness or exhaustion take over like I have a ball and chain unable to move. The idea of cooking dinner after being on my feet all day seems impossible at times. At least we can read that it can get better than it is now soon we just have to get through. Thanks so much for sharing you are not alone. Best thing I found was to sit and try to just breath.
Rachael, sometimes having other people relate to what you are saying can be better (WAY better!) than advice. And that’s the beauty of this site. We get it!
LOL, now for some advice. We would have either starved to death or eaten far too much takeout without my rolling kitchen stool. On days when I could not contemplate buzzing around from fridge to stove to sink, I found that I could manage to scoot on my stool. The hardwood floor in the kitchen has taken a terrible beating, but hey, that’ s just another cost of PsA. Mine isn’t exactly like this one, but the next one I get will be –
As I said before, my fatigue got much much better when we found the right treatment. Still, I don’t have the stamina that I used to. On days when I’ve done my pool workout, I’m exhausted when I come home. But it is a totally different tired than the “disease” tired. Hard to describe … it’s almost a pleasantly-pooped feeling. I sleep very well, and the next day my energy is back. The “disease” tired we are talking about here, well, there’s nothing quite like it.
I am very new to the disease as well, and all I can tell you is I know exactly what you are talking about! Just like Sianie said, I too have told people the exact same thing - that I could deal with the pain but the fatigue was impossible to deal with! I'm not on any biologic or anything right now, only antiinflammatories that I use when I'm in pain. And they seem to be helping with the fatigue as well, but I still feel tired. It has become a kind of a joke in the house that even when I feel pain free, I still have to sleep 2 hours in the middle of the day so I can function :) So I laugh too. If I have to sleep or lie down for a while, well, then I do it and try not to feel bad about it. But then again, I don't have children so I can imagine how hard it must be for you. What gets me really frustrated is when I walk with people, I realize that I'm walking too slowly. I used to be a really, really fast walker, people would try to catch up with me. And I used to find it really hard to slow down. Now, I feel like I'm running after the people I'm walking with and still have a hard time catching up with them. And that makes me really upset. Not being what I used to be. But on better days, I believe that this too, shall pass. People have gotten better in this forum too, haven't they? So why wouldn't I get better and be who I used to be? :) And even if that doesn't happen, well, then, enough time would have been passed that "being that person" would be a distant memory and will not bother me as much as it used to. A dark thought, but still better than being upset that I'm not that person anymore.
Anyway, what I'm trying to say is, I know what you mean, and I feel the same fatigue that you feel... So hang in there and don't beat yourself up about it.
I get exactly, the not being “sold on the fibro dx”…it wasn’t until I read up so much on the fatigue aspect of fibro and was prodded by fibro sufferers I know to at least think about it did I relent and consider that ok yep it was pretty likely I had secondary fibro as my rheumatologist dx…my PsA can be in remission but my fatigue can leave me unable to get up the stairs to bed, and has meant I’ve had no choice but to reduce my hours at work. But as with PsA its all about finding the balance.
How about printing off some info for the family to read?
I just got a chance to read all the replies this evening. Y’all are awesome. So reassuring and quick to offer encouragement and understanding. It is so wonderful to have such a tremendous network of PsA friends to turn to for advice and support.
A few days ago, I was just feeling so bad and just wondering if I will ever feel good again. I thought well…I just can’t deal with the struggle anymore, I’ll just give in to it (PsA), quit my job and resign myself to just live life in my PJs and stay home. But then I remembered that I’m not a very good quitter!
I started PT this week and I already feel the positive affects on both body & mind!