Crohn's Disease Forum » Extra Intestinal Manifestations » Is it just Crohn's? Lots of other Symptoms

11-28-2014, 11:15 AM   #1
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Is it just Crohn's? Lots of other Symptoms

For about 3 months solid I've been having problems with fatigue, joint aches (especially knees), tingling sensations (mostly face, sometimes my feet, or left shoulder/arm), brain fog (not as much mental stamina/concentration, poor short-term memory, can't recall words or mix things up when speaking), and some other things that are just sometimes annoyances (like occasional ringing in the ear).

A lot of the symptoms go back farther, into the spring, but were intermittent, or were clearly caused by Lyme disease. I was treated, twice, and things cleared up. I have been tested multiple times since, including by a specialist who used the more reliable tests out there, everything negative. I've also been tested for Lupus, Sjorgensen's, and I think one or two other things by a rheumatologist...he said that this might all be due to the Crohn's and maybe some med side-effects.

I don't have any visible swelling in my joints. I'm not sure if Crohn's joint problems would include swelling or not. I know fatigue could fit in. I seem to be having some nerve and neurological problems which I don't think would have anything to do with Crohn's, though. My GI is booked until the end of December. (And of course my bowels have been acting up in the past couple of weeks, including bleeding. Yes, I told them that, but they can't get me in.)

I'm waiting on more bloodwork, usual CBC and some other vitamin levels and such, but that stuff has all been ok along the way, with the exception back in the spring of vitamin D, for which I take a big supplement.

My feeling is that something more as at work here. Chronic fatigue, multiple sclerosis, or maybe fibromyalgia (but I don't seem to have the tender points).

I'm really stumped, it's frustrating and depressing, and I'm also not quite sure what to say to my doctors (GP, neuro, GI, rheumatologist) at this point, or if I should be seeking out additional sorts of specialists.

Oh, also of note: I have bad migraines (weekly currently, I believe they've been worse lately due to work stress) since 2012, glaucoma in my left eye (optic nerve is deformed, which is how it was found)diagnosed this summer.
Crohn's dx in 2012, 19 days hospital
Winter 2015 Flare, 5 days hospital March, meds adjusted
(unDx flare 2009 caused by Zyrtec; suspect mild disease in 1990, age 6, followed by remission)

depression 2000, migraines 2012, glaucoma 2014

Humira (40mg/week)
Asacol (800mg 3x/day)
Prednisone when flaring
assorted supplements

Topamax (migraine)
Sumatriptan/Sumaval (as needed, migraine)
Latanaprost (glaucoma)
Viibryd (depression)
11-29-2014, 07:51 AM   #2
my little penguin
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Ds has juvenile spondyloarthritis associated with Ibd
It took a long time to get to that dx (1-2 years).
He saw the Rheumo for arthralgia and myalgia associated with crohns at first until his crohns was under control.
He does not have swelling of his joints but did have stiffness and shortening of tendons the Rheumo could feel.
You may want to look into

Since most things are simply related to crohns -but that has to be under control first before you can figure out if there is any other stuff (btw Ds gets chronic migraines as well when he is not under crohns control )
Good luck
DS - -Crohn's -Stelara -mtx
11-29-2014, 08:16 AM   #3
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Hmm, that's definitely a direction for me to look into. I need to call the rheumatologist about something anyway, so I might see about getting another appointment if I can get in there sooner than my GI (which I am still aggravated about 2-3 weeks ago I started what I think is a flare, called for an appointment, and the first available was December 30th).

My Crohn's has been pretty well controlled (until very recently), but it hasn't gone into remission. I always have to be careful with what I eat, and even then had to get used to a "new normal" with my bowels with additional irregularities from time to time. My migraines may be related to the Humira, but they can have an inflammatory cause, too, and my mother had migraines, so I can only guess.
12-11-2014, 02:14 AM   #4
gracestrong's Avatar
Join Date: Nov 2014
Location: Atlanta, Georgia
I'm dealing with similar symptoms and wonder the same thing. My mother has Multiple Sclerosis. I need to get in for a test, but honestly I'm scared to. Knowing that about me, I encourage you to get tested for what you think you need to. Some of the drugs Crohn's people can take also can cause neurological reactions. That's why they wanted me to have that MS test before I started them. My remicade nurse is on to me about it.
Crohn's with extra-intestinal RA like arthritis.
My Crohn's is systemic and located in my small intestine. Diagnosed via a pill cam.

ER Visits: 4, Pill Cam: 1, Colonoscopies: 4, Endoscopies: 4, Gastric Ulcers: 3, CT Scans: 2, Barium Fluoroscopy: 1, Contrast CT Scans: 2, Diet Trends: 5, Different Meds Tried: 14

Current and shortest med list yet:
OTC Antacids
(Off 6MP but probably going back on it.)

Crohn's Disease Forum » Extra Intestinal Manifestations » Is it just Crohn's? Lots of other Symptoms
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