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View Full Version : RA peeps...Having a moment...and a question



myvanya
Mar. 11, 2010, 10:34 AM
The last couple weeks have been tough for me RA-wise so I admit my frame of mind is not the best. I'm trying to stay positive so I am coming with a question....

For those with RA...

I really struggle a lot with fatigue. When my pain is worse obviously I am more tired. But it is literally like sometimes I hit a wall. I feel like I should be able to work through it but I haven't been very succesful in that. Does anyone have any good ideas for how they maintain energy and/or work through really bad episodes of pain or fatigue? I am trying really hard to not give in to this...I hate not being able to do what I want and two days this week I ended up at home in bed after work instead of at the barn because I just couldn't make myself go (and I love the barn...it breaks my heart when I can't go).

I guess mentally I still think back to when I was better and could run on 5 hours of sleep, ride four horses, take 21 credits in college,work, and dance and it is really driving me nuts now that I can't even ride my horse on the schedule I have established and get to the gym 3 days a week after work in addition to that (because really I was mostly fine only a few years ago). I can't believe in some ways how quickly things got worse. I have of course been working with my rheumatologist to try to find the right meds and such but I am having a moment of frustration...any help or ideas?

TIA....:)

Doberpei
Mar. 11, 2010, 12:45 PM
What meds are you on and how long has this been going on? It took me about three months and a couple of return visits to the land of prednisone to get back to "me".

TrueGrit
Mar. 11, 2010, 03:07 PM
With my arthritis, pain and fatigue are constant, and while meds help with the pain, nothing helps with fatigue - especially a post riding day slump. My Rheumy says that unfortunately it's the nature of the disease... if you're active one day, it'll take you a couple of days to recover. I try not to dwell on what I used to be able to do, but it's a tough road. I remind myself to be grateful that I'm still mobile. :(

summerhorse
Mar. 12, 2010, 04:16 PM
Lots of naps, even power naps help.

myvanya
Mar. 12, 2010, 04:32 PM
Thanks.

Doberpei- I'm currently on oral MTX, humira, folic acid, and piroxicam for the RA; I have done a couple courses of corticosteroids (predisone and predisolone I think). I was on enbrel and it was great...until it stopped working after about 7 months. When it worked it was amazing. When it failed it was miserable. My MTX dose keeps going up and the piroxicam is new. I also take large doses of Tylenol with the piroxicam on bad days. I was on Vicodin for a while but that isn't good for long term and after a few months started making me sick. I am on some other things for other issues too but they shouldn't contribute to the fatigue at all...if anything they should help.

I was doing better on the enbrel when it was working. I am not sure the Humira is really working and will be talking with my rheumatologist about it. It kind of stinks as I will have to go to one of the IV drugs if the humira doesn't work and my RA doc is over an hour away from me. Should be interesting. I see him next week though.

Thanks for the thoughts and info though it helps and I appreciate it. I am loading up on caffeine and had my extra vitamins last night...will get to sleep in a little tomorrow hopefully and get some extra rides in :D I know I shouldn't complain as I am still pretty capable and able and have lots of opportunities....just have to stay focused on the good stuff.

rockfordbuckeye
Mar. 25, 2010, 11:44 PM
Make sure you have a CBC checked and iron/ferritin levels. Inflammatory diseaes can cause your body to not be able to use iron correctly which causes anemia and symptoms of fatigue. An iron supplement may help if your stomach can tolerate it. Iron supplementation should be started only at the advice of your PCP/rheumatologist though.

Jay-N-Jete'
Mar. 31, 2010, 10:21 AM
I'm kind of in the same place...my life kind of just ground to a halt in the past year. I was barely making it through work, going right to bed after, and haven't ridden since December.

Enbrel worked GREAT for me, too! But, then stopped...
Humira didn't seem to do much for me.

I went back on Methotrexate and started leukovorin....its been 9 weeks and its starting to work! The MTX seems to be working backward for me i.e. take shot Sat night...Sunday-Tues are a complete waste, Thurs better, Fri pretty good, and Sat good. Hoping I can get more "good" days...

I've been able to take over feeding and grooming toward the end of the week (not hay or water)

I can zip my coat again! Sounds so silly, but SO frustrating to not be able to grasp the zippers to zip. I changed to a button coat for work!

I think I'm ready to ride again, but, since she wasn't ridden for 3mths, my mare's saddle is gone to be refit...

Hang in there - hope you and your rheumatologist can find your best med combination!

Doberpei
Mar. 31, 2010, 10:47 AM
Myvanya -

I am so sorry you are still having troubles. I am on the highest oral dose of MTX that the docs prescribe (yippie!). I was involved in a study for an experimental DMARD, but eventually it was found that the drug wasn't that great for the joint issues, so I went on the Humira, which has really been a good one for me.

I have found that arthritis strength Tylenol was the best OTC med for pain, even when I was self medicating with a friend's percocet (didn't work as well as the Tylenol.) I also found that while there wasn't much to do about the tiredness, the joint pain was helped by staying active. The pain was much worse when I had been still for long periods of time. So I forced myself to keep the dog walked, or go and find the horse in the field (though like Jay-N-Jete', my fingers were so swollen I couldn't buckle his halter or hold the lead rope, so zipping up a coat is a big deal).

For the tiredness, I found that I made sure on weekends I didn't over do things. I volunteer at a lot of horse shows, I quit doing two day shows. They got me for one day only, and I recharged on the other day. Make sure you do take time for yourself, even if it is sitting in the parking lot at the barn looking at the horses in the field.

I went about 4 months without riding, and then asked my doc about it, and he said as long as I felt up to it, it was fine. So my 40th birthday present to myself, my horse and I prepared for and did an elementary level horse trial, and promptly retired upon completion.

Jay-N-Jete'
Apr. 1, 2010, 01:33 PM
Doberpei - for zipping - my OT got me a string/fob thingy to attach to my necessary zipper coats (barn coats)
Now that I can close my fist enough to sort of grasp it/catch it in my fingers - I can zip again!
Takes me a while to get the zipper started (helps if they have the hard tabs next to the parts that go together.

For halters I use those with a snap at the throat - all the ponies are trained to put their faces into the halters and wait, while I work it over their ears. Works really well for me - I can't do the buckles.

I work with special needs kids, so all the staff are great about making adaptations - even for me!!


Isn't it weird (and a shame) how different meds work for different people. Humira and/or Tylenol don't do a THING for me...but Enbrel was great, for a time.

Etodolac TID helps me get through the day, along with the MTX and leukovorin. As my MTX dose has gone up, my hand and foot swelling has gone down a LOT! I used to have to bring 2 different pairs of clogs to work.

Haven's Edge
Apr. 2, 2010, 11:52 PM
I had a friend that went thru this.. and assorted meds. Her doc also had her cut out starches and sugars from her diet.. and that helped her dramatically... she is back riding but also remembers to take time to just chill and rest.

RMJacobs
Apr. 3, 2010, 08:06 PM
It's too bad that every med doesn't work for every person. Humira has been my miracle drug--the first and only so far to really strike a blow at the fatigue. I still am pretty darned tired, but it's been so much better since I started on Humira in '03.

As I said in another thread, my husband does all the home stuff so that I can focus on work and still be able to do some things for fun. If I had to clean house and work, that would be it for me.

I find I do best when I push myself some (but have to find the balance to not push too much). A while ago I was sitting reading and starting to zonk out, so I got up and hopped on the elliptical for a while. For now I'm OK, but it will happen again in a while, and then I'll go groom a horse or something.

But when I really hit the wall, I just have to stop for a while. Hubby and I went to Louisiana last week, and walked a lot in New Orleans (thank you, Vicodin, for making this possible!). Got home Saturday night and did absolutely nothing (well, except for several loads of laundry) Saturday night, all of Sunday and Monday after work. By Tuesday I was able to lunge a horse after work (he was doing all the work anyway).

Maybe the next med will be the magic bullet for those of you who aren't getting enough help from their current meds. I sure hope so.

Rebecca

myvanya
Apr. 8, 2010, 10:11 AM
Sorry I dissapeared for a while- it appears that I may have gotten ulcers too :( I'm a mess! :lol: I do have a really very happy update though.

My RA doc put me back on prednisone for a while. Though I hate the stuff (weight gain and feeling slightly psychotic-:eek:)it does make me feel physically more like me and I desperately needed a break from the pain. The Humira totally wasn't cutting it and actually was making me sick after I took it. That in combination with the higher dose of MTX was just awful. Talk about nasuea. I would miss a day of work every two weeks because I was so dizzy and nauseous and headachy I literally could only stand to go to the bathroom and back.

The good news is, thanks to my awesome RA doc I will be trying a new drug (well, new old drug) Orencia, I have FMLA protection at work (though the time through FMLA is unpaid at least my job is protected and I desperately need my job both for the money such as it is and for the insurance which is amazing....though more on that in a moment), and I feel less worried about my husband leaving for the next six-ish months thanks to feeling generally better and starting to figure out plans while he is gone. (He enlisted in the reserves which will guarantee me insurance coverage. Best husband ever. :D He had been wanting to enlist for ages anyway but it is really wonderful of him to help me out in that way. He will be at BASIC and tech school so nothing too scary just will be far away- and he really does a lot to support me from house work to helping me tack up on bad days).

So really there are many hopeful and good things going on. I am not back to where my RA doc wants me to be yet or where I want to be yet (sadly I will be missing one of my favorite runs this year...I know to many people just walking is amazing but riding and running are my RA doc's goals for me as riding, running, and dancing are my passions). I actually was able to pick up and play my violin last week which I hadn't been able to play in ages (fingers and wrists usually hurt too much) :) Progress. And though ending up in the ER with what now turns out to likely be an ulcer really was quite unpleasant, it forced me to stay home and rest for a while which was wonderful. Nice to sit at home with my cat on my lap and listen to the radio and knit (ha ha I sound so old) or call my family on the east coast and just forget about work for a bit.

I even came up with a way to make my reins more workable for me- I wrapped electrical tape around where I mostly hold them so they are fatter there and it is way easier to hold them without having to grip tightly. A nice and affordable fix. I am hoping for my birthday I might get the thinline reins to try but my far cheaper solution works pretty darn well.

So on the whole I am back to my typical nasueatingly hopeful self :D I still have my moments (wish I could work part time and wish I were less broke :lol:) but am celebrating the somewhat nasty miracle of prednisone and trying my best to stay positive :lol: