Feeling super out of it, tired and detached?

[Ships]

I don't know what's going on, but lately I have been feeling super out of it, it's hard to concentrate on anything and I can barley hold a conversation, I'm tired from when I wake up until I go to sleep even though I'm getting over 8 hours a night. And I feel detached from myself if that makes any since, like I'm just going through the motions but I'm not not really all there? I don't know if I'm making much since because it's hard to explain. I have also been dropping and spilling almost everything!

I haven't even finished my full starting dose of remicade, I'm between the 2 and 4 weeks, and I've been on imuran 50mg since late February.

Has anyone else ever felt this way? Any ideas? I don't know how to talk to my doctor about it because I have so much trouble describing it.

 

[Cat-a-Tonic]

How are your vitamin levels? I had similar exhaustion when my iron dropped really low. I felt like a zombie, just sort of shuffling along and completely exhausted all the time (I would sometimes take 4+ hour naps but wake up feeling like I hadn't slept at all, still utterly shattered from exhaustion). Things improved greatly when the iron deficiency was corrected with infusions. You should definitely go get some bloodwork done to figure out the cause of the exhaustion. Hopefully it's something that's relatively easily corrected.

 

[Ships]

Thank you, I will email the nurse at my GIs office and see if I can get some bloodwork. I asked him awhile ago (before I started remicade) about testing my vitamin levels, I've never had it done and was worried about potassium levels because I was waking up once every couple days with calf cramps and my muscles were sore all the time, but he seemed to think it wasn't important which frustrated me. But I never thought about that being the cause of this, thank you!

 

[Cat-a-Tonic]

Checking your vitamin levels is definitely something that should be done periodically - that's worrying that you've never had them done! If your GI's office won't do it, check with your GP. Good luck!

 

[Ally1234]

Your description makes perfect sense because sometimes i feel the same way. I am currently on prednisolone and feel like this whenever I drop the dosage too low. I also felt like it before I went into hospital. I also feel hot and cold all at the same time and sometimes I just sit and rock back and forth. It's like my body is fighting the crohns so hard that it doesn't have enough energy to deal with the outside world so my brain stops working fully. For me I think it's just something that happens in a bad flare as i get my bloods checked regularly and they dont seem concerned about anemia at the moment but they did give me iron infusion when I was first diagnosed. Also I get terrible calf cramps quite frequently aswell sometimes several times a night, i used to wake up screaming because the pain was so intense but I have since learned how to stop panicking and ease them quickly. Since being diagnosed I also get toe cramps. It's hard to know if they are related or if I am just trying to find an explanation. Definitely get some blood done if you can but hopefully things will improve as your medicine starts to work

 

[Ships]

Thank you! I emailed my doctors office about it and his nurse called me back and told me it could just be dehydration and I need to work a little harder to stay hydrated with the heat, so I guess I'll try more water. I have an appointment with him on Friday so if it hasn't eased up we will talk about it. It hasn't so far, but fingers crossed!

The calf cramps are awful, I don't get them as often now, about once every few weeks, but waking up in pain like that is awful! The mental toll this flare has taken is unreal, so hopefully he'll be able to find something to help on Friday.

 

[Charlotte.]

I have been feeling that way anytime when my disease became more active and there could not been found another reason (iron levels fine, blood work all right, but more inflammation in my body, as my rheumatologist could see via ultrasound of my joints).
Apart from that, the loading dose of biologics can cause some temporary side effects util the body adopts to the new drug in some way.

Hope you feel better already by making sure you stay hydrated.

 

[Eridon2002]

How you are feeling makes total sense. I've definitely feel that way when my Crohn's is not under control. I second Cat-a-Tonic in that you should get your vitamin levels tested. I think this should be done regularly for everyone with Crohn's. Don't let your doctor push it off as dehydration. Keep track of how many ounces per day you drink so you can tell them-Look, I've been drinking X ounces a day and I still feel like this. They listen to concrete numbers. Aim for 96oz of water. I try to get that every day. Hope you feel better soon, I hate the brain fog...

 

[Beach]

That is something I've recently been seeing relief from, tiredness, fatigue, being in a fog, and muscle cramps.

What has helped me is making a diet change. I theorized that possibly an allergen fed to animals might show up in the dairy, egg, or meat. That has left me with eating wild caught fish, along with a bunch of fruits, and vegetables, Kerry Gold cheese from Ireland, etc. So far so good. Energy has improved, muscle cramping gone (knock on wood) and overall doing better with my health.

Hope you find answers that work for you.

 

[Ships]

Im not sure what's going on with me honestly. I have a hard time believing it's dehydration mainly because I'm drinking more water than I normally do, but still not as much as I should be. I just feel awful.

When it started I had pain in my left side under my ribs and down, but now I have pain in my lower right abdomen through to my back, and I'm just so tired.

Thank you for your replies! I'm just trying to tough it out until my appointment on Friday!

 

[cdnrose]

I feel pretty much the same. I agree with others on getting your blood work done but they might not find anything there either. Last round for me checked my B12, Ferritin, TSH and whatever else they look for that may relate to the tiredness. My B12 actually came back high and everything else was low but within normal range. Good luck on your appointment Friday, hopefully they will do the labs just to rule that out.

 

[hcrum87hc]

Definitely get your levels checked. A CBC (complete blood count) and vitamin level count are in order. When my iron levels get a bit low, I feel fatigued and out of energy. I can usually counteract it with over the counter iron supplements. Low B12 levels are also very common in Crohn's and present similar symptoms.