Lots of Unexplained Symptoms + Confusing Blood Tests

[yikes]

I've been having a flare-up for about a month now. It started off pretty mild, got worse in the middle, and is getting better again now. My digestive problems are getting taken care of, however I have lots of other strange symptoms and I don't know if they are related or not.
I have mentioned this in a previous post of mine, but joint pain. It's getting better now along with my flare up, but at times it got so bad I could barely walk. I still cant walk up or down stairs without hobbling and having pain. I am hoping to see a pediatric GI soon (I'm only 15 and the regular GI where I live won't see me) however the closest one to me, which is in a different city, and booked until June. My family is going to see if I can get in to the one the next city over, and from there get referred to a rheumatologist. Is it possible I have something other than Crohn's that's causing the pain, or if Crohn's has lead me to develop some other problem?
I also have a very high resting heart rate for my age. It seems to be above 100 beats per minute most of the time. The highest I've seen it in the recent past is 108, the lowest is 85. I also at times have a sharp pain in my chest, right where my heart is located. It's not bad but it concerns me lol. My family and I thought I might have anemia, which would explain this. But, I got blood tests done and apparently apart from the Crohn's flare up there is nothing abnormal going on with my body, which was confusing to hear considering all of these strange symptoms. The doctors also said my inflammation levels were normal, however I've been having eye pain and, as I before mentioned, severe joint pain. The doctors did not seem at all concerned about the heart rate, and did not offer any explanation. It makes me very jittery along with causing some concentration problems, (though I'll get more into that later) and insomnia. What could cause this?
Concentration, memory, executive functioning, and comprehension problems. I've been having them for a while now, but I defiantly didn't have them growing up. This has lead my family to believe they have a physical cause. They thought it could be anemia, but as I said the blood tests say I'm completely healthy. My therapist thinks I could have ADD or a comprehension learning disability, but my family doesn't agree. The fact that I've only had these problems recently in my life is confusing; could their be any physical cause, perhaps related to or caused by Crohn's?
Fatigue. I have been just so tired, weak, and dizzy lately. Any slight exertion leaves me out of breath, I've fallen down multiple times in this week, I can't take showers because I get to light headed, etc.
All of this and my doctors say I'm fine. I feel like there is more going on. Any help or insight would be appreciated. Thank you! :heart:

 

[ktburo]

Unfortunately, these are all symptoms (except the heart rate) that I have when flairing and Im 31. One of my flairs I had diarrhea, extreme joint pain or as Im figuring out now is Enthesitis, (Inflammation at ligaments and tendon insertion points) both types of skin conditions associated with crohns and uveitis. I hope you feel better soon. You and your parents follow your gut (no pun intended) and keep fighting until you find someone who you are comfortable with and listens to you

 

[Maya142]

I have mentioned this in a previous post of mine, but joint pain. It's getting better now along with my flare up, but at times it got so bad I could barely walk. I still cant walk up or down stairs without hobbling and having pain. I am hoping to see a pediatric GI soon (I'm only 15 and the regular GI where I live won't see me) however the closest one to me, which is in a different city, and booked until June. My family is going to see if I can get in to the one the next city over, and from there get referred to a rheumatologist. Is it possible I have something other than Crohn's that's causing the pain, or if Crohn's has lead me to develop some other problem?
I also have a very high resting heart rate for my age. It seems to be above 100 beats per minute most of the time. The highest I've seen it in the recent past is 108, the lowest is 85. I also at times have a sharp pain in my chest, right where my heart is located. It's not bad but it concerns me lol. My family and I thought I might have anemia, which would explain this. But, I got blood tests done and apparently apart from the Crohn's flare up there is nothing abnormal going on with my body, which was confusing to hear considering all of these strange symptoms. The doctors also said my inflammation levels were normal, however I've been having eye pain and, as I before mentioned, severe joint pain. The doctors did not seem at all concerned about the heart rate, and did not offer any explanation. It makes me very jittery along with causing some concentration problems, (though I'll get more into that later) and insomnia. What could cause this?

So two things - it could be arthritis or enthesitis as mentioned about. Arthritis is inflammation of the joints, enthesitis is inflammation where the tendons and ligaments meet the bone. Both are associated with Crohn's.

There are several types of arthritis that are associated with Crohn's. CCFA has a great explanation for the types: http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

Sometimes arthritis flares when the Crohn's flares and other times it flares independently. It may also get better as the Crohn's is treated.

What medication are you on for your Crohn's? Usually if there is arthritis, they will use something like Methotrexate or biologics like Remicade or Humira.

Arthralgia (joint pain but no inflammation) is also common with Crohn's. That will also get better as the Crohn's is treated.

The other thing is your heart rate - pain can make it higher. 100 beats per minute is high, but it's not terrible. My daughter had the same issue - she is followed by a cardiologist for her heart rate (which went up to 140 when she was very sick) but it was determined that it was just the stress of chronic illness on her body - she does not have a separate heart condition.

Getting your Crohn's and the joint pain under control should help, if that is the case.

The eye pain needs to be looked at - do you see an ophthalmologist regularly? People with IBD (including kids and teenagers) are at risk for inflammation in their eyes (called uveitis). This is serious and can lead to loss of sight, so it's important that you see an eye doctor soon to get it checked. If there is inflammation, it needs to be treated quickly.

Have your parents call and ask to be put on the cancellation list for the GI. That sometimes works well.

Good luck!!

 

[Sophabulous]

I would reiterate what the others have said, except I also had a very high heart rate when diagnosed. It hovered around 120 bpm although I was quite severely anaemic and I've also had low blood pressure in the past. I did post here not so long ago about the heart rate thing, if you can find that then there are some interesting replies

As my anaemia has been treated it has come down to just under 100 bpm but this is still too high for my liking. I mentioned it to my IBD nurse who said it's something for my GP to look into so who knows!

Best of luck, I hope you get some answers

 

[yikes]

So two things - it could be arthritis or enthesitis as mentioned about. Arthritis is inflammation of the joints, enthesitis is inflammation where the tendons and ligaments meet the bone. Both are associated with Crohn's.

There are several types of arthritis that are associated with Crohn's. CCFA has a great explanation for the types: http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

Sometimes arthritis flares when the Crohn's flares and other times it flares independently. It may also get better as the Crohn's is treated.

What medication are you on for your Crohn's? Usually if there is arthritis, they will use something like Methotrexate or biologics like Remicade or Humira.

Arthralgia (joint pain but no inflammation) is also common with Crohn's. That will also get better as the Crohn's is treated.

The other thing is your heart rate - pain can make it higher. 100 beats per minute is high, but it's not terrible. My daughter had the same issue - she is followed by a cardiologist for her heart rate (which went up to 140 when she was very sick) but it was determined that it was just the stress of chronic illness on her body - she does not have a separate heart condition.

Getting your Crohn's and the joint pain under control should help, if that is the case.

The eye pain needs to be looked at - do you see an ophthalmologist regularly? People with IBD (including kids and teenagers) are at risk for inflammation in their eyes (called uveitis). This is serious and can lead to loss of sight, so it's important that you see an eye doctor soon to get it checked. If there is inflammation, it needs to be treated quickly.

Have your parents call and ask to be put on the cancellation list for the GI. That sometimes works well.

Good luck!!

I am currently on apriso, and I took prednisone for a week earlier during my flare. I don't see an ophthalmologis, I've had the eye pain ever since I was diagnosed and no one thought too much of it. I will be sure to ask about it when I get into the GI. Thank you!