Nerve Issues with Crohn's

[DaytOh]

Hello, I have a question.  I'm new here, I'm a 26 year old male and I was recently diagnosed with Crohn's.  I do NOT have diarrhea, blood in my stool, etc but I DO have fatigue, weakness, I think I have some sort of arthritis (joints feel weak), but my MAIN question is something to do with the nervous system.  ALL of this happened suddenly one night when I took a laxative for constipation I had back in October.  The entire night I was in the restroom and I felt this weird pressure/tingling/weakness on the left side of my body, particularly my left head/temple.  Ever since, I've been weak, I've had tingling and stiff sensations in my head, neck, and (sometimes) partial facial paralysis at times (it comes and goes) and it's as if there is something stuck in the left back of my head/temple/ear area.  My neck is stiff, it's difficult to concentrate, memory is getting foggy, my left arm gets weird pressure sensations, my underarm gets this weird pinching sensation, I have slow breathing out of my left nostril (and I personally believe my left lung FEELS weak, though the CAT scan said differently).

I've been through the "oh, you have stress/anxiety, here's a Zoloft" treatment MANY times and trust me, it ain't just stress.  As a matter of fact, I can't even FEEL stress or any sort of emotion.  I don't have the energy to feel "angry" or "happy" or whatever, just blah.  Zoloft doesn't work and it definately isn't helping my pain.  The thing is, all these weird symptoms, I'm NEVER feeling "hurt" (if anything, numbness) except for sometimes sharp pains in my left chest/breast area.  I've had an MRI/MRA, CAT scan of brain, chest, and abs, X-ray, colonscopy, endoscopy, etc and all turned out fine except for my colonoscopy which showed I have Crohn's.  I had a blood test and my thyroid is "fine" so they ruled that out along with TIA, diabetes, etc.  What could all these sensations be?  Are they nervous system related?

How do I treat this?!?!  How do I get energy?  I thought it initially was a blood issue going to my head but they say it's fine (except for something that's "positive" that shows I'm battling an IBD).  I just want energy (and I've been doing the fish oil/colostrum, etc thing), I want to feel "emotions" or whatever chemical goes to my ead to start this, and I want this left side numbness/tingling/stiffness to go away!  Any help would be much appreciated, thanks!

[DaytOh]

I had an MRI/MRA a while ago (back in late November) and they ruled out MS and said my brain was "normal."  But I still believe it has something neurologically wrong with me so I'm definately going to see a neurologist!  I hope I don't have fibromyalgia! Thank you all!

[tjoan910canadian]

How do you know that he does not have fibromyalgia......it would be best if he see a neurologist to decide.......I have both fibro and crohn's and the two often go hand in hand with each other.....and my husband has M.S.....and yes my husband and I are very similar in having the same symptoms but I would not want to have M.S.

[coughting]

One of the reasons people often don't think that people with chrons are sick is that they appear to be healthy.  One of the symptoms is fatigue and weekness.  This can cause lots of other symptoms including a lot that you talk about.

However, I agree you should see a neurologist to see if something else besides chrons is going on.  You need to rule other things out.

Read everything you can about chrons it really helps.  

The fact that you have chrons often depresses people and when you are week and depressed every pain etc seems that much worse.  

It is hard to have a positive attitude when you feel so bad but things will get better.

[tootaloot]

You do not have fibromyalgia...

I've had similar symptoms as you (with the exception of the breathing issue), and it ended up resulting in a 3 month testing binge in which the doctors really could not conclude anything.

Crohn's is an autoimmune disease, and there is increasing evidence that Crohn's patients exhibit neurological symptoms that are similar to those involved in MS (Don't fret, I'm not arguing that you have MS). I highly recommend that you go to a neurologist who will more than likely want to do an MRI.

[DaytOh]

Thank you so much!  I will, definately.  I'll be seeing my doctor in a couple of weeks.

[tjoan910canadian]

Do not be afraid because I do not suffer from all of these symptoms..and actually I feel much better now than I did when I was first diagnosed in the 1980's ..these are just symptoms that others who have fibro may feel at certain times........these symptoms  have not been proven to be part of Fibromyalgia......just gathered data.....the main part to be tested first is to see if you have the any of the eighteen trigger points on your body.....conducted by a rheumatologist......

Low cervical region: (front neck area) at anterior aspect of the interspaces between the transverse processes of C5-C7.
Second rib: (front chest area) at second costochondral junctions.
Occiput: (back of the neck) at suboccipital muscle insertions.
Trapezius muscle: (back shoulder area) at midpoint of the upper border.
Supraspinatus muscle: (shoulder blade area) above the medial border of the scapular spine.
Lateral epicondyle: (elbow area) 2 cm distal to the lateral epicondyle.
Gluteal: (rear end) at upper outer quadrant of the buttocks.
Greater trochanter: (rear hip) posterior to the greater trochanteric prominence.
Knee: (knee area) at the medial fat pad proximal to the joint line

Keep in touch and let us know ...........how you are?

[DaytOh]

I have a question about that.  All those symptoms you named I have (well, most of them) so how do you manage to control them?  Do you feel symptom free?  I'm just very scared.

[DaytOh]

Thank you so much!

[tjoan910canadian]

I have crohn's and I totally lack energy but not because of crohn's disease.....you can function quite well on a daily basis with proper diet and/or medication control of the disease.....BUT I have Fibromyalgia also..........and the two often can go hand in hand with each other.....one being of the stomach and the other being of the brain........Here are some of the symptoms of Fibromyalgia:....However it does affect more women than it does men

Sensitivity to pain
Fatigue
Widespread Pain
Morning Stiffness
Vision Problems  
Nausea
Sleep Disorders
Urinary and Pelvic Problems
Weight Gain
Dizziness
Chronic Headaches
Cold Symptoms
Temperomandibular Joint
Dysfunction Syndrome
Multiple Chemical
Sensitivity Syndromes
"Fibrofog":
Cognitive
or Memory Impairment
Skin Complaints
Chest Symptoms
Anxiety
Depression
Dysmenorrhea
Aggravating Factors
Myofascial Pain
Syndrome Muscle Twitches
Weakness
Memory Loss

These are not to be used in diagnosing Fibromyalgia and you do need to see a doctor who can refer you to a Rheumatologist and/or a Neurologist.

Here is a web site that you can visit:

http://www.fibromyalgia-symptoms.org/

I really hope that you can find some help for yourself very soon and take care

[DaytOh]

Help (?)

[DaytOh]

And lastly, the doctor gave me Pentasa and Entocort for Crohn's.  They seem to be working regarding bowels.  My bowels seem healthy.

[DaytOh]

Also, I feel this stinging sensation in my sternum (sp?) area (middle of chest), particularly if I touch it.  It seems very weak.  That, along with weird sharp sensations from my heart area (which might be my stomach, I dunno).  Thus, I was afraid it was heart related but I've had EKG's, blood tests, etc which show I'm "fine."  Ugh.