Crohn's Fatigue is Over the Top Bad

[Nuclearfueled]

Hello Friends,

My first post here. I had UC in the 80's then J-Pouch surgery in the early 90's and just in the last couple of years I was Dx'd with Crohn's Disease. I'm taking Humira with a low dose Imuran chaser.

I just completed another Prednisone taper a couple of weeks ago and now this unreal Fatigue and Joint Pain have settled in.... I've truly never felt anything like this before, it's over the top painful. Every cell in my body is screaming in pain and I can hardly move I'm so tired. Climbing stairs? Only if being chased by some hideous beast could I manage more than a flight of stairs.

What remedies are available for Fatigue and Joint pain in Crohn's patients?


Many Thanks,

Nuc~ :eek2:

I should add that I also seem to have acquired Restless Leg Syndrome which for me is Restless Body Syndrome. It is so creepy it can't be described accurately. It feels like you need to squirm and move constantly; in bed I contort in my sleep and thrash wildly and eventually I have to leap out of bed because I can't stand it anymore.

Now I'm having a sort of waking RLS too, I can feel it at all times.... And I'm so exhausted that I can't escape it.... If I was paralyzed and had this set of symptoms I would need to have someone pull the plug because this just is crazy!

 

[Jennifer]

Hi Nuclearfueled and welcome to the forum!

How long have you been on Humira and Imuran? Back when I took Humira it made me extremely tired the first few months. Yet you may be dealing with dehydration and vitamin deficiencies. You can try increasing your fluids and if you haven't had your vitamin levels tested recently like B12, Iron, vit D, Magnesium, Potassium, folic acid, Calcium, Zinc etc, I highly suggest you get them checked out so you can begin supplementing if you're low or deficient in anything (even being low can bring on symptoms of a deficiency, being low in vit D can be linked to chronic pain http://www.webmd.com/pain-management/features/vitamin-d-deficiency-and-chronic-pain-link).

As for the joint pain I highly suggest seeing a Rheumatologist if you aren't already even if you don't have RA or any form of arthritis.

As for the RLS, I'm going to tag Afidz in here as she's dealt with that before and may have some suggestions for you.

Again welcome to the forum. Please keep us posted on how you're doing.

 

[Nuclearfueled]

Jennifer,

Thank You. My blood panels always come back normal, no deficiencies. I am taking extra Vit-D, and Mirapex for the RLS (Doesn't Work).

I've also concluded that Narcotics are a loser with Crohn's. Dosing keeps escalating and the relief hasn't followed. I've been tearing through 200mg of Oxycodone a day, and can't feel a thing from it but pain. Next week I start 50mg Dilaudid a day just to switch up and hopefully get some pain relief. However, I suspect the gig is up for Narcotics.

I ran across an article about Narcotic Bowel Disease and the features seemed to match mine pretty closely -which is escalating pain and more dysfunction.

Oddly, I'm having very little bowel discomfort at the moment, it's all about this fatigue and joint pain and the Restless Body thing. I dread going to sleep tonight, well, every night I dread but I can feel that tonight will be awful. Ugghhh, I'm soooo tired...

Nuc~

 

[plantluvr]

hiya. sorry you are having such a hard time. fatigue is horrible. im suffering it too with joint muscle pain. i heard klonipin can be good for rls. i quit pain meds over a year and a half ago and noticed i was actually in less pain. best thing i ever did. try moving around some. stretching increases blood flow. even 5-10 mins a day. its so hard but if you push through it it might get better. the days i sit lay around makes me feel worse. i have a 4 yr old to chase after with no help from husband or my friends i live with. they dont care how much i hurt and cant feel what im going so i still have to do everything i was before. im tired. sorry for the little rant. anyways i hope you get relief soon. hugs!

 

[Jison0612]

I battle through fatigue that's a big stmptom for me. I find with this disease and any other I'm sure the best remedy to deal with any of the symptoms is to stay busy and just expect it and try ur hardest to not think about it it really makes a huge difference. Also the more u go without pain meds the more u will appreciate them and feel there effects when u absolutely need them like at nights.

 

[Nuclearfueled]

Hello Friends,

Thank you for your support. No easy answers for the fatigue I gather.... Yes, I try to take mini-walks which look more like an old man taking his final stroll. Just a flesh and bone bag of pains...

Last night was horrific, the RLS was so high I was crawling out of my skin from the second I hit the pillow. I just left my night table lamp lit since I knew that sleep was going to be impossible. I could only pull out my drug supplies and take one of each, Klonopin, Seroquel, Mirapex, Narcotic, Aspirin, Tylenol PM, Hydroxyzine, geez anything else.... A normal person would be out in 10 minutes from that load but I just thrashed around until 3am and had to get up. I ended falling asleep ON THE TOILET! No way I can this every night. GI Docs of no help, PCP of no help. This disease is a solo battle, and a lonely one - :ybatty:

Nuc~

 

[afidz]

Hello Nuclearfueled
you could have RLS from either the prednisone or the narcotics. I had very bad RLS when I was on hydrocodon, and it was a lot worse for me when I was withdrawling from dilauded. THe joint pain could also be from prednisone. I remeber Crohnschicago saying that she gets bad hip pain when she is on Prednisone or tapering off of it.

 

[Justanothercp]

Nuc,
I've had RLS (I call it crazy legs), oddly it just mostly went away, no idea why. Now only gets me 1-2 x/mo. I find stretching before going to bed helped a little. The only change in my med regimen is Niacin, no idea if that has helped?

**this too shall pass**

 

[Tesscorm]

RLS is horrible!!! I dont have crohns but had a different problem that left me quite anemic. Do you know if you are Low in iron? RLS is often a side effect of low iron as is fatigue. When i was low in iron, the RLS was daily and almost immediate as soon as I stopped moving - bed, sitting at work, etc.!! And as far as the fatigue, walking up a hill almost killed me! Once my problem was resolved and I was able to improve my iron levels, both the RLS and fatigue disappeared.

Magnesium deficiency can also contribute to RLS.

One thing that I found that helped the RLS a bit, when laying in bed, try elevating your legs with a couple of pillows. Didn't completely alleviate the RLS but did help a bit.

Hope you find some relief soon.