Limb and back pain -To the touch

[Snice]

My 16 year old daughter contracted a severe case of Mono in September 2007.  She experienced a 30 lbs weight loss (115 to 86 lbs.), extreme body pain, and extreme fatigue.  Her doctor identified it as the worse case she had ever seen.  Her symptoms were subsiding by the end of December 2007, when she was involved in a motor vehicle accident. Approximately two to three weeks after the accident, all of the symptoms we had associated with the Mono had returned.  She currently experiences severe pain to the touch in her arms legs back and neck, as well as, a return of the fatigue. This pain has reach a level now where if her arm is held, it actually results in an injury type pain which lasts for days.  She has been retested for EBV and has normal levels.  She has been through a battery of blood tests, CT scans of the brain, and MRI's of the brain and cervical spine.  The C-Spine MRI showed muscle spasms had caused the neck to lose its curve.  The only abnormality in the extensive blood work run (all unusual viruses have been tested for) was an elevated level of Reactive C Protein of approx. 20.She has been undergoing chiropractic treatments to relax the neck and upper shoulder tension.  She has received no relief from the pain.
Recently, after having blood drawn, she passed out and stuck her head causing a concussion. The doctors we have been seeing are at a lost.  She has received some relief from Vicodin, but no other pain relievers help...we have tried them all.  She has been put on Effexor ER because of the depression that has resulted from the extended illness. She is asthmatic and has been treated with inhaled and oral steroid since age two.  Have you experienced any similar cases?  Does anyone have any suggestions?  I have research neurological diseases such as CIPD, but none of them seem to fit all the symptoms.  I would appreciate any help you can offer.

[MLWTR]

With the high C-reactive protein, severe fatigue, muscle and joint pains, and dramatic weight loss, I wonder about the possibility of inflammatory bowel disease, in particular Crohn's disease. I'd also want to rule out celiac disease. Has she had an upper endoscopy or any GI consult?

[admom]

My 12 yr old daughter has nearly the same thing.  She had a bad case of Mono in Sept followed by strep.  She had not quite recovered her stamina when she started basketball practice in Jan.  She only made 3 practices and she could barely walk, she would come home afterschool and go to sleep until the next day.  (except for us waking her up to test blood sugar & treat it)  She is a type 1 diabetic and has had fairly normal blood sugars but moderate to small keytones daily since this began.  She hasn't lost any more weight since this began though so the ketones don't seem to be related to that.  She is also achy, dizzy, having trouble concentrating, frequently confused and has nausea.  Her fatigue is extreme and she also has the type of muscle pain you described.  Tender to touch, very easily hurt with no visible swelling.  My daughter doesn't seem to be as severe as yours, but it's keeping her out of school and unable to keep up with the home assignments.  Her Dr.s are continuing to test, but nothing significant has shown up except the ketones.  Please let me know if you find anything out.  I'll keep watching the postings too.

[Snice]

I thought you might find this article interesting.  http://www.rsds.org/4/youth/pdf/AMP_RNDparentHandout.pdf

[Snice]

Hi, have you ever heard of CRPS/RSD I have located a forum with a lot of other children with similar symptoms.  Respond and I'll send you the info.

[Snice]

Hi there,

Has your daughter been seen by a neurologist?  After having screened her for viruses, physical injury and a psych evaluation, they have suggested a neurologist.  I did some research on EBV and peripheral neuropathy...which I believe is what they are suffering from.  The main causes appear to be viruses, injury, and diseases of the nerve..such as CIDP.(This ones kind of scary, but at least its treatable) I was surprised to find that there were many cases of this type of pain following Mono considering I took my daughter to a very expensive infectious disease specialist who told me this was not a result of EBV (the virus that causes Mono).  Just thought I would check back with you.  My daughter's spirits have improved.  She gained 3 lbs last month, but her pain has continued and is harder to relieve. Hope yours is improving.

[admom]

My daughter was tested for Celiac in Jan. and it was negative.  Same with all the other GI testing.  We make sure she eats and drinks small amounts at regular intervals to keep her blood sugar stable.  She rarely has an appetite, is nauseas and feels overly full when she does eat.  We manage the GI problems with medication to keep her eating & keep it down when that part gets bad.  (phenagrine)  That med makes her drowsy but it seems to let her relax through the pain better too.  
She was also a straight A student w/lots of extra curricular.  She puts a lot of pressure on herself but was a very happy bouncy kid before this hit.  She takes focalin for ADD and YAZ for homone control (to help with glucose swings).  Taking her off focalin makes no difference.  
Her normal Diabetes/Endocrine team couldn't figure it out and we are scheduled to see a pediatric endocrinologist.  We were told to follow-up with an autoimmune specialist if that didn't help.  
We are managing the pain with Aleve (dulls it but certainly doesn't kill it)  Other over the counters had no effect.  We very gently massage in sportscreme a couple times a day and do light massage on any areas that aren't too sensitive to touch.  We've worked on relaxation techniques which seem to help.  She changes position often to keep from putting too much pressure in one area.  Very mild stretching and short walks are all the exercise she is doing to keep from getting stiff but not aggravate the pain.  If she does too much on a good day, she'll relapse and be worse for a few days.  Electronics bother her so we keep that to a minimum.  She reads quite a bit and we have her do puzzles and easy games to keep her entertained but not excited.  We keep the house calm, lights dimmed some.  Light heat helps with back & limb pain.  When the pain and frustration get to her, we just sit with her and let her cry it out.  It's a lousy way for a kid to live!  Hope this gives you some ideas.  If the Dr.s come up with something else I'll let you know.  Thanks

[Snice]

Thank you very much.  She has been screened for Crohn's Disease and it was negative.  She has no intestinal problems, although she has developed lactose intolerance. However, after reading about celiac she does appear to have a majority of the symptoms.  Thanks again.

[Snice]

Yes, my daughter has all those same symptoms as well.  I just couldn't list all her symptoms. She is a sophomore in college and had to withdraw from school this semester.  

We thought that stress may be playing a role in her illness.They have put her anti-depressants and, although I had serious concerns about this, it has improved her appetite and her mood.  I'm wondering whether there isn't some sort of post Mono pain syndrome or some nerve disorder brought on by the extreme weight loss.  

We have looked at this from a physical injury, illness, and psychological perspective.  I'm a little frustrated because they don't seem to take the pain seriously.  But, I know she's in severe pain.  I'll let you know if I find anything.