Yes I got overwhelmingly tired a lot but found it was down to methotrexate. I was even falling asleep on the back of my husbands motorbike (he would slap my leg when he felt me droop). Since coming off methotrexate this doesn't happen any more. I honestly just couldn't stay awake and dragged myself upstairs after work every day. Even fell asleep at work sometimes. Someone else mentioned Vit D3, I take that now along with a lot of other supplements - most of which are anti-inflammatory. I threw the methotrexate 5 months ago and haven't had a flare up or nearly so much pain since. I can walk - in fact I now walk between one and two miles a night with my dog - I couldn't do that while on that drug because the swelling and pain was so bad. I was on methotrexate for about 5 years and the specialist just kept on increasing the dose in the last year. I couldn't think, concentrate on anything or stay awake. And I was still in pain - so I thought "That's it" and the drugs went in the bin and I continued with the new anti-inflam diet that I'd started the month before and, touch wood, I'm 100% better now mentally and physically. There'll be more rants about all this later and some really interesting stuff I've discovered about methotrexate and PsA - how methotrexate doesn't work at all for PsA - you're actually better off with a pineapple.
I also get ridiculously tired all the time. It doesn't help that I have fibromyaligia, sleep apnea, chronic vitamin D deficiency, and anemia. Plus not sleeping well at night due to pain. When I started MTX I was literally sleeping 16-18 hours a day. It has improved over time. I was even falling asleep when watching my kids which really freaked me out. Lack of sleep takes its toll on your psychological health and your ability to cope with pain. I have had been taking high amounts of vitamin D, iron, and trying to go to sleep at the same time each day. I can't help but need naps about 3 times a week. Unfortunately I think it is the nature of the beast. I wish you the best, and hope this improves with time and TLC. I find friends and family don't understand how tiring this disease is.
On another note, I also have been reading about the benefits of pineappple. Have to start eating more!!
Good luck,
Carly
Has your doctor checked to see if you are low in Vitamin D? I was and he started me on prescription strength vitamin D, he then checked my levels again and it was high enough to just take an over the counter dose. I would check with my doc.
Hi
Could you tell me what dosage your Vit D is please? And whether it's vitamin D3 or not? I'm curious as to what prescription strength is.
taximom said:
Has your doctor checked to see if you are low in Vitamin D? I was and he started me on prescription strength vitamin D, he then checked my levels again and it was high enough to just take an over the counter dose. I would check with my doc.
I know the feeling! I thought it was me getting older, but my doc said that 21 year olds don't usually need naps lol. My meds sometimes would make me tired if it was changed up. Personally my body responds to weather changes very poorly. Its getting colder every day and my body feels every degree change. If it is the season change I would start changing up your diet. Google :how to eat for cold weather.. and the sites will give you great info. I hope it gives you that extra boost of energy....In the winter i will out eat most men and out sleep any baby(kinda like a bear) good luck
Yup! Know that feeling, it can be very difficult to get throught the day when we feel that way. Sometimes you come home from a day of work and nothing functions anymore, your brain dead, idealess, and just want to hit that couch, and when you do, oh! boy! try getting up from there, like getting up from a train reck!!!!!!!!!
I still try to figure out the why's and hows, my limits and what I can do! All I can say is have courage and do the best that you can. Most importantly get the support when needed, just like we do here!
Hugs !
Colleen Ann
Hi Paula,
Now I take 1 vitamin D 3 (1000 i.u.) I would check with your doc you might need more:)
Paula said:
Hi
Could you tell me what dosage your Vit D is please? And whether it's vitamin D3 or not? I'm curious as to what prescription strength is.
taximom said:Has your doctor checked to see if you are low in Vitamin D? I was and he started me on prescription strength vitamin D, he then checked my levels again and it was high enough to just take an over the counter dose. I would check with my doc.
Over the last 12 weeks I have gone from enbrel to humira and now prednisone. While on enbrel i was fatigued that increased as it lost its efficacy; while on no medication before humira I was super fatigued; while on humiraI had reduced fatigue and while on the cortisone I have had an immediate and almost complete absence of fatigue. Seems to me the better the medication controls the inflammation the less fatigue or in other words if your fatigue is high your medication is not working well.
Hi Taximom
Oops - 8000 i.u. a day - I'd best go google what an optimum dose is. Mind you the one's I'm getting are 4000 i.u per capsule and it does say 2 daily.
It's OK-ish - though I should maybe take one per day. This is a really good site for health info (though I generally check other sites too to find consensus) http://www.naturalnews.com/027345_Vitamin_D_exposure_sun.html
I'm 120 pounds and, according to that site, I should take 4800 i.u. per day. Are you taking 1000 i.u. per 25 lb body weight or just the 1000 i.u.'s? (Yes it's a problem knowing who to believe - the doctor or the consensus of numerous studies and reports). Here in the UK we don't get tests so easily - if I ask for all the tests I should have for all the supplements I'm taking - the doctor would freak out. But then again the values gained from a test would only tell you what you were that day - all those values will vary due to stress levels and depending on what you'd ingested that day anyway. I'm just kind of experimenting on myself and seeing how I feel - there isn't another way of doing it really. At the moment I feel pretty good though there's a band of steel wanting to crush my right foot building up at the moment so I'm not doing so well with my diet right now :(. Complacency is the big undo-er of all good intentions :(.
taximom said:
Hi Paula,
Now I take 1 vitamin D 3 (1000 i.u.) I would check with your doc you might need more:)
Paula said:Hi
Could you tell me what dosage your Vit D is please? And whether it's vitamin D3 or not? I'm curious as to what prescription strength is.
taximom said:Has your doctor checked to see if you are low in Vitamin D? I was and he started me on prescription strength vitamin D, he then checked my levels again and it was high enough to just take an over the counter dose. I would check with my doc.
Boy was your statement like a light bulb going on for me. I often have to fight to stay awake. It happens at work, driving, riding in a car of sometimes just when I sit down. I don't seem to be able to rest instead I fall asleep. This has been going on for years.It was a relief to hear that others have experienced the same thing. Friends and family don't seem to understand and it can be embarrasing with people I don't know well. Had a sleep study, mild apnea but probably due to weight gain. I often hear, you're sleeping too much and when you do it only makes you more tired. What do you do to combat this- I drive an hour each way to work and am worried I may really fall asleep one time?
I have the same feelings! I get almost 12 hours of sleep at night and 2 hours after I wake up I am sleepy again! and then about 3 hours after that I am so tired that I can barely keep my eyes open, so I am now taking naps which are almost impossible to wake up from but I force myself to get up and start moving to help and keep me up, I am trying vitamins and omega 3 oils and im trying to eat healthier and exersice but honestly nothing seems to be helping me!
I hope we all find something to help
Just this evening on the way home from work I was telling my sister who is a Nurse Practitioner that my exhaustion was taking my life over....no matter how much I rest it never seems enough....she said that I should discuss getting medicine to ward off the rheumatoid syndrome...it is not enbrel but some other preventative medicine that I can take....I am going to someday check it out but not too soon since I can't wait to get home to rest these days,,,,,
Tired, what we feel everyday 24 /7 , yup , I know that feeling, I also know the feeling of looking at the clock all night because I keep waking up every few minutes, I have basically gotten use to it. But, with work and tavel it can be hard, I have to go to South Carolina for Training, and when I travel it is sooooo much harder. I do not want to take anything to sleep because I feel awful in the morning!!!
I know what you mean. Some days I just can't function and end up sleeping most of the time. I have found that using a b-complex vitamin has helped a little bit at least :/ (and caffeine, I love coffee lol!)
In a discussion group this evening the discussion leader asked if any of us have ever felt just completely exhausted, and all I could think was, when have I not felt completely exhausted??? And then, of course, I thought - I bet he doesn't even know what being BEYOND exhausted feels like ... like there is nothing you care capable of doing other than collapsing on the spot. There have been days when plans have been cancelled because I knew as soon as I got myself and my kids home safely from whatever activity we were at, I'd pass out for a couple hours because I was just that exhausted.
Oh my gosh Lainee, it is so exhasting at times. Yesterday was an exremely hard one for me at work. Fortunately I have my own office , so nobody saw my eyes closing and my head bobbing. What a site!! I have to keep telling myself only a few more hours and you'll be home and able to rest. The drive home from work is also a challenge. I have a forty minute commute. I don't think I could manage if it was any longer. I usually nod off around 7:00 PM and then wake up again around nine. Then it's off to bed. I think I will try the Vitiamin D reccommendation. My sister has Rheumatoid and her recent blood work showed a severe Vitamin D definciency. It surely can't hurt and quite possibly will have some good results. I'm so glad we all have each other to sympathize and share advice. Hugs.
Lainee B.
This was a great topic to bring up. I was worried that the constant fatigue was the meds but it sounds like it is a symptom of the PSA. I think the biggest issue that I'm dealing with now is the total exhaustion I feel everyday. I think I have had 4 job offers in the last few months (I'm in sales for factory automation) and I have passed on every one of them because I feel like I don't have the energy to go through the whole process of interviewing and then starting all over at a new position where I would have to prove myself and be energetic all the time. I'm doing ok at my job right now but know I'm coasting alot because it offers me the freedom to make my own schedule every week and I can schedule my calls when I feel the best. My pain has subsided quite a bit and I have only periodic inflamation. I understand your frustration in dealing with doctors and friends. I hope you get your meds worked out so you aren't in as much pain. Hang in there, don't ever feel you are "ranting", that is what this site is for. It just amazes me when I try to explain to one of my friends what PSA is and how I feel, they don't understand and you can tell by the look on their face that they think it is "just arthritis, take some glucosamine and quit your whining!".
nym
just wanted to say thanks for the "gift" on my b-day! Hope you're doing well. I also liked your comment to the discussion. I can't believe how many times I've had to take an impromptu nap in the middle of the day or even pull over on the side of the road to close my eyes for a few minutes. My family is starting to understand that sometimes I have to change my plans because of this disease, hope they can deal with it.
nym said:
In a discussion group this evening the discussion leader asked if any of us have ever felt just completely exhausted, and all I could think was, when have I not felt completely exhausted??? And then, of course, I thought - I bet he doesn't even know what being BEYOND exhausted feels like ... like there is nothing you care capable of doing other than collapsing on the spot. There have been days when plans have been cancelled because I knew as soon as I got myself and my kids home safely from whatever activity we were at, I'd pass out for a couple hours because I was just that exhausted.
Wow! It all makes sense now. I didn't know why I'd started feeling so overwhelmingly tired all day, even if I got a good night's sleep. I fall asleep at my desk when I think I'm blinking, 3 minutes has gone by! Lol. I didn't know that the PsA could be the contributing factor. I'm only on Enbrel and Sulfasalazine at the moment and Aleve for pain, though I try not to take it during the day because I thought it was making me sleepy. I'll take any suggestions anyone's got. :)
I was awake for at most 7 hours today. I did some valentines with the kids then passed out again. I slept last night. I
Can not stay awake for longer than a couple of
hours at a time. Is this the inflammation or is there something
else wrong with me?? Help very freaked!