Does anyone else out there get so tired you can't keep your eyes open? I get so super fatigued, I can barely function after working all day. I came home, sat down to read the paper and fell sound asleep two nights this week. Sometimes it hits me in the middle of the day at work, just awful yawning and fighting to stay awake. I did read on some of the websites about PsA that general fatigue is a symptom. This is almost like "knock me out" tiredness, down in my bones. Comments?
Deffinately!! Hard to say if it’s from not getting good quality sleep due to pain or if it’s just a symptom in itself. Either way…some days an afternoon nap is the best thing in the world!! I don’t know how I could cope if I had a real job (I do my husbands bookwork for his company from home). I couldn’t imagine having to deal with that aspect and my heart goes out to all of you guys coping in the “real” workforce.
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Deffinately!! Hard to say if it’s from not getting good quality sleep due to pain or if it’s just a symptom in itself. Either way…some days an afternoon nap is the best thing in the world!! I don’t know how I could cope if I had a real job (I do my husbands bookwork for his company from home). I couldn’t imagine having to deal with that aspect and my heart goes out to all of you guys coping in the “real” workforce.
I am always exhausted. I often find myself nodding off at my computer and have to get up and walk around to try and wake up. I wish I could take a nap at work!
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Ditto!!! I also get quite exhausted, its awfull, its now only 8pm here in ireland and Im in bed, cant stay up late anymore, just too tired, I also am quite lucky in that Im able to take rest during the day as Im not working, thank God my husband has a good job, as I dont know how I would cope with work, at the moment, so yes I think it is for sure a symptom of PSA x
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where in ireland are you at last another person on ben friends ijust told today that i have p.a. after an a.v.m. also bulges on my spine its tough to keep going on but there is people worse off than me they have cancer so look on the bright side its only pain and tienedness talk to t soon margaret
sjg said:
Ditto!!! I also get quite exhausted, its awfull, its now only 8pm here in ireland and Im in bed, cant stay up late anymore, just too tired, I also am quite lucky in that Im able to take rest during the day as Im not working, thank God my husband has a good job, as I dont know how I would cope with work, at the moment, so yes I think it is for sure a symptom of PSA x
I don't know if it's a coincidence or not, but when I started taking 50,000 units of Vitamin D twice a week, my fatigue seemed to lessen.
Yes, I do get fatigue like that--every day. I keep trying to blame my meds (MTX, plaquenil, BP meds, pain meds). But the doc says it's PSA. I know the feeling you are talking about--I call them emergency naps. When I feel that way, I'm not only overwhelmingly sleepy, I feel like another step is impossible. I almost feel like I have flu or something and it's clear that I need to sit or lay down. Probably just another of those gifts from Uncle Arthur.
I'm sorry to hear so many others are feeling this, too. Hope you are having a good day today and are enjoying Thanksgiving week!
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Lainee, I use to work 50-60 hours per week and still have energy to go out in the evenings but once the PsA started to manifest even before I had a diagnosis (which took 3-4 years) I began to have terrible bouts of fatigue. I just told myself I was getting older and I needed to try harder. But no matter how hard I tried I just could not overcome the feeling that someone had connected a big hose to my back and sucked all my energy out. The last two years I have been hit hard with a variety of episodes of illness which since my diagnosis all make sense, and throughout the fatigue has been my constant companion. I no longer work any overtime, I work from home on Fridays and in the evenings and on weekends I rest all I can. I could sleep 10-12 hours a day if I was able. The fatigue is the hardest part for me...
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Hi Mags, Im in Co.Limerick, where are you, haha, great, there are not that many I think on here from Ireland, What medication are you being put on Mags, You must be very sore, I have it mainly on all small joint,s fingers, feet, elbows, SI joint, Back can be very sore, especially in bed, trying to turn, or just move at times is a killer, in a very bad flare at the minute, I tried Metoxtrate but it didnt agree with my liver, so have humira in fridge, but waiting for a nurse to show me how to use it, but rhumy says i can do it myself but i would prefer to be shown so i will have to find some one to show me, You are right to look on the positive side, but at times it can be so debilitating people need to vent and I think this forum is such a great place to do it as they all have similar issues and can totaly understand where everyone is coming from, glad to meet you, talk to you soon, x
mags4711 said:
where in ireland are you at last another person on ben friends ijust told today that i have p.a. after an a.v.m. also bulges on my spine its tough to keep going on but there is people worse off than me they have cancer so look on the bright side its only pain and tienedness talk to t soon margaret
I know that feeling and hate it so you have my empathy and sympathy. I have read that fatigue can be caused by inflammation or daily stresses related to having the disease. Fatigue due to inflammation is often more easily corrected than fatigue that results from stress. The inflammatory cytokines (protein molecules) that are released in PsA are the same chemicals that are released if you have a severe cold or flu. As you are aware your doctor can treat this type of fatigue by prescribing higher doses of your drugs or another drug to control the body’s inflammatory process. Once inflammation is under control, fatigue usually lessens. The fatigue you describe is most likely related to inflammation in my experience and therefore it would seem to me that perhaps your inflammation is not under control at the moment. Are you still only on nasiads and painkillers?
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Yes Allan, I am only on Nsaids and painkillers. I see my pain specialist the end of this month for spinal injections/block. (I have a failed spinal fusion, and that is what I see the pain doc for.) I am going to ask for a referral to a Rheumy. I tried to make an appt. myself, but without a doc referral, they wouldn't get me in. I am very frustrated with my GP, he really was unaware and didn't want to touch me because I already see a pain specialist. I don't want more PAIN medicine, I want something to make it stop in the first place. I just keep seeing my symptoms get worse and worse. And, even though my skin finally just cleared up for the time, the PsA is getting worse every day. I am a little afraid of the biologics because my brother got non-hodgkin's lymphoma from Remicade. It is a rare side effect, but with my family history, do I want to risk it? Sorry, I don't mean to rant. I am tired of being treated like a hypochondriac or worse yet a drug seeker. I drag myself to work 45+ hours each week, but am so tired I can barely get my work at home done. I am so fatigued at times, I cannot keep my eyes open. Even though I love my family to death, Thanksgiving dinner is a lot of work and I will be miserable to be on my feet for so long. But I will do my best with a smile on my face. The main thing is I do not want to quit and give into this disease! The Chronic pain I have lived with for years is one thing, but PsA is kicking my BUTT. Nobody wants to be around someone in chronic pain, who can't keep their eyes open, who can't do what they use to do and they just don't get it. I am NOT LAZY - have never been lazy or a complainer. I want to work, I want to contribute, I want to do everything I've always done at break neck speed. My body just will not cooperate!!! How do you get people to understand that I am having trouble barely functioning some days!!! Thanks for listening...this group has finally given me a place to get it off my chest. Thank you all for being "there".
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Thank you LJ, I feel EXACTLY this way!!! People in my life don't understand why I am not "the old me", not as energenic. I was the one out playing soccer with the grandkids, keeping a huge garden and flower bed, working 50+ a week, volunteering my time at church, etc. It's like I am a different person! I like the "hose that sucks all your energy" analogy!! PERFECT way to describe what I am feeling! This disease is sucking away my life, and I am getting ANGRY at that!!!
LJ said:
Lainee, I use to work 50-60 hours per week and still have energy to go out in the evenings but once the PsA started to manifest even before I had a diagnosis (which took 3-4 years) I began to have terrible bouts of fatigue. I just told myself I was getting older and I needed to try harder. But no matter how hard I tried I just could not overcome the feeling that someone had connected a big hose to my back and sucked all my energy out. The last two years I have been hit hard with a variety of episodes of illness which since my diagnosis all make sense, and throughout the fatigue has been my constant companion. I no longer work any overtime, I work from home on Fridays and in the evenings and on weekends I rest all I can. I could sleep 10-12 hours a day if I was able. The fatigue is the hardest part for me...
I a
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I've gotten VERY good advice out here, thank you all of you for your input.This disease is making me a totally different person than the one I've always been. I am a busy person, and don't have time for PsA!!! I don't want to give up my life! But, I am facing reality that this is becoming the NEW NORMAL. SIGH.
Lainee B.
LJ said:
Lainee, I use to work 50-60 hours per week and still have energy to go out in the evenings but once the PsA started to manifest even before I had a diagnosis (which took 3-4 years) I began to have terrible bouts of fatigue. I just told myself I was getting older and I needed to try harder. But no matter how hard I tried I just could not overcome the feeling that someone had connected a big hose to my back and sucked all my energy out. The last two years I have been hit hard with a variety of episodes of illness which since my diagnosis all make sense, and throughout the fatigue has been my constant companion. I no longer work any overtime, I work from home on Fridays and in the evenings and on weekends I rest all I can. I could sleep 10-12 hours a day if I was able. The fatigue is the hardest part for me...
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Hi . Treating PsA with nasids is liking fighting a forest fire with a water pistol and treating the pain is treating the sympton and not the cause and allows the cause to worsen while you cover up the pain. I wouldn't have it so I could really explain how bad I am. You need a different GP! You can see from these pages how pain levels vary tremendously for individuals depending on whether their anti inflammatory medication is working. I can understand your worry about biologics but there are other drugs and methotrexate is used to stop cancer. If you don't slow the progression of PsA you will soon not be able to function. Be really honest with the rheumo when you get see one.
Get really assertive with the doc's and good luck
Lainee B. said:
Yes Allan, I am only on Nsaids and painkillers. I see my pain specialist the end of this month for spinal injections/block. (I have a failed spinal fusion, and that is what I see the pain doc for.) I am going to ask for a referral to a Rheumy. I tried to make an appt. myself, but without a doc referral, they wouldn't get me in. I am very frustrated with my GP, he really was unaware and didn't want to touch me because I already see a pain specialist. I don't want more PAIN medicine, I want something to make it stop in the first place. I just keep seeing my symptoms get worse and worse. And, even though my skin finally just cleared up for the time, the PsA is getting worse every day. I am a little afraid of the biologics because my brother got non-hodgkin's lymphoma from Remicade. It is a rare side effect, but with my family history, do I want to risk it? Sorry, I don't mean to rant. I am tired of being treated like a hypochondriac or worse yet a drug seeker. I drag myself to work 45+ hours each week, but am so tired I can barely get my work at home done. I am so fatigued at times, I cannot keep my eyes open. Even though I love my family to death, Thanksgiving dinner is a lot of work and I will be miserable to be on my feet for so long. But I will do my best with a smile on my face. The main thing is I do not want to quit and give into this disease! The Chronic pain I have lived with for years is one thing, but PsA is kicking my BUTT. Nobody wants to be around someone in chronic pain, who can't keep their eyes open, who can't do what they use to do and they just don't get it. I am NOT LAZY - have never been lazy or a complainer. I want to work, I want to contribute, I want to do everything I've always done at break neck speed. My body just will not cooperate!!! How do you get people to understand that I am having trouble barely functioning some days!!! Thanks for listening...this group has finally given me a place to get it off my chest. Thank you all for being "there".
Lainee B., I know exactly what you are going through. I had to go home yesterday and sleep for about 2.5 hours, I just couldn't keep my eyes open and was feeling cold. I ended up curling up with my puppy dog for warmth! I just had my methotrexate dosage upped to 8 - 2.5mg tablets per week and take meloxicam and folic acid daily. I know before I was diagnosed, I would come home from work and be so tired I would fall asleep on the couch. So I don't think its just a side effect of the meds. I think it is one of the symptoms of PSA. I'm concerned about my work, I am in outside sales and pretty much make my own schedule (which is a blessing), but I am finding it harder and harder to stay motivated to make sales calls.
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yes i am the same but my situation is different as i am in a wheelchair does anyone out there have exercises to combat the tireness as also i had an a.v.m. looking forward to your replies margaret
Thanks for your note Bluesky...I know EXACTLY what you are feeling. I have got to get to a rhuemetologist! I am hoping I can afford the medication. I have to pay for my treatments out of pocket. My insurance is an HSA with a huge deductible, and I am already on a super tight budget. I hope it isn't too expensive. I can't take the pain much longer, I had the worse night ever last night of sleep. I hope you are feeling better too, and had a good holiday.
Bluesky said:
Lainee B., I know exactly what you are going through. I had to go home yesterday and sleep for about 2.5 hours, I just couldn't keep my eyes open and was feeling cold. I ended up curling up with my puppy dog for warmth! I just had my methotrexate dosage upped to 8 - 2.5mg tablets per week and take meloxicam and folic acid daily. I know before I was diagnosed, I would come home from work and be so tired I would fall asleep on the couch. So I don't think its just a side effect of the meds. I think it is one of the symptoms of PSA. I'm concerned about my work, I am in outside sales and pretty much make my own schedule (which is a blessing), but I am finding it harder and harder to stay motivated to make sales calls.
Yes so tired and so frustrated with myself as I need to do so much in a day. I eventually found that I needed to give up work and just concentrate on looking after my 3 children and myself as after I’d done a days work I was finding I couldn’t even stand to make dinner and it was too much pressure on my eldest son that is studying for his gcse’s. Since giving up work I try to get an hours sleep between 2-3 in the afternoon but still dropping off by 9 ish in eve. Hate having to give in and sign on sick but my kids had to come first.