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Crohn's Disease Forum » General IBD Discussion » Question for those of you diagnosed with Fibromyalgia


03-21-2015, 07:37 PM   #1
crohniekid
 
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Question for those of you diagnosed with Fibromyalgia

So I have a few questions for you:
1) were you diagnosed before or after you were diagnosed with crohn's? how were you diagnosed?
2) what are your main symptoms?
3) how can you tell if you are flaring from the fibro or CD?

R has been flaring since December. His GI put him on a course of flagyl and Zithromax in January to try to calm things down while we waited for the results of his Imuran levels (which were way out of therapeutic range). R's main symptoms have always been mild (diarrhea 1-3 times/day, growth delay, mild fatigue) and suddenly he started to experience abdominal pain and stinging/numbness in his index and middle fingers that came and went. We discontinued the antibiotics Feb 12/14 and R had his scopes Feb 13/14 which revealed severe inflammation and ulceration in his TI. We started MTX and Remicade Feb 15/15 and iron infusions Feb 18/15. After 2 loading doses of remicade R's pain has only gotten worse. The stinging/numbness is now in all of his fingers and varies in severity but never goes away. His skin is super sensitive to the touch and he says that his toes burn and feel like they are blowing up but has no visible swelling. He has occasional low grade fevers and complains daily of headaches, that his joints and muscles ache on the inside and literally says he hurts everywhere. His diarrhea has disappeared to a stool pattern that is all over the place (one day he will go 3 times ranging from firm to loose, and then he will go 5 days between the next, and then once every 2 days). The pain in his stomach (umbilical region) is always his top pain which he describes as someone pulling and tearing his guts. It is always worse in the morning, late afternoon/evening and R says it is actually a little worse right after a BM. We added 40mg of prednisone and had 0 effect after 10 days so we met with GI again and decided to taper. GI is no longer convinced that we are dealing with 'just' a CD flare and thinks there might be something more going on. R's bloodwork is perfect and his energy has actually picked up a little since the iron infusions which makes him all the more unhappy that he doesn't feel up to much.
He has seen a neurologist and know that it is not a result of any nerve damage that they could find. We have a referral into a rheumatologist.
03-21-2015, 09:24 PM   #2
Clash
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Did the muscle and joint pain start after the remicade? I'm going to tag my little penguin and maya142 as well as Dusty as the can lend their experiences with their kids as well.

For my son, he has joint flares and it is a result of juvenile spondyloarthropathy or JSpA. It was dx'ed by a rheumatologist and his joints flares can be really bad.

If all of his symptoms(outside of his bowels) intensified and spread and new symptoms arose then I would also wonder about the remicade being the culprit. Has he had a remicade Evelyn test or been tested for antibodies?
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-21-2015, 09:35 PM   #3
Maya142
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The stinging/numbness sounds like a nerve issue while the all over joint and muscle pain could be fibromyalgia or some sort of arthritis. Juvenile Spondyloarthritis which is associated with IBD does not necessarily cause swelling in joints and it also wouldn't necessarily be evident in bloodwork. The low grade fever could be caused by JSpA or by his Crohn's flare.

My daughter was diagnosed at 13 with JSpA. In her case, the arthritis preceded the IBD and her arthritis flares and IBD flares do not always overlap but sometimes do.

he stinging/numbness is now in all of his fingers and varies in severity but never goes away. His skin is super sensitive to the touch and he says that his toes burn and feel like they are blowing up but has no visible swelling.
Another thing to research based on your description is pain amplification. My daughter was diagnosed with this recently and what it means is that her nerves are so used to pain signals from inflammation in her joints, that they are continuing to send pain signals even though the inflammation is now better.
Pediatric CRPS and fibromyalgia are now generally classified under pain amplification.
Pain amplification can be caused by inflammation or triggered by a virus or illness or even by a minor trauma such as an injury.

Has anyone checked his vitamin B12 lately? I believe low B12 could cause numbness.

A rheumatologist is a really good idea. Keep us updated if you can, will be thinking of you and your son.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
03-21-2015, 09:43 PM   #4
my little penguin
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Second the Rheumotologist as to what is going on..
Could be JSpA or other things???
DS is currently a puzzle as well
Wishing you the best

Please join us in the parents forum

http://www.crohnsforum.com/forumdisplay.php?f=49
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DS - -Crohn's -Stelara -mtx-IVIG
03-21-2015, 09:44 PM   #5
Maya142
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Pain amplification:
http://www.chop.edu/conditions-disea...t#.VQ4q0ylYHlI
03-21-2015, 11:24 PM   #6
Lady Organic
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209093/

results from the above 2014 article on 20 Fibromyalgia patients (non-CD) fallowing a gluten-free diet:
''The level of widespread chronic pain improved dramatically for all patients; for 15 patients, chronic widespread pain was no longer present, indicating remission of FM. Fifteen patients returned to work or normal life. In three patients who had been previously treated in pain units with opioids, these drugs were discontinued. Fatigue, gastrointestinal symptoms, migraine, and depression also improved together with pain. Patients #2 and #3, both with oral aphthae, went into complete remission for psoriatic arthritis and undifferentiated spondyloarthritis.

For some patients, the clinical improvement after starting the gluten-free diet was striking and observed after only a few months; for other patients, improvement was very slow and was gradually observed over many months of follow-up. For eight patients (# 2, 3, 8, 9, 12, 14, 17, 19, and 20), the intake of gluten was followed by clinical worsening, which subsided after returning to a strict gluten-free diet.''

this may be an avenue to try. best wishes.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
03-22-2015, 10:33 AM   #7
crohniekid
 
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Location: Edmonton, Alberta
Thanks for the replies guys! I've thought about arthritis but most of the new meds he's tried (MTX, remicade and prednisone) are also used to treat arthritis as well and he's only gotten worse on them (although he seems to have plateaued now). JSpA usually starts in the big joints and back though right? R's back hurts but I'd say it's more the muscles than the joint. Both the GI and neurologist have asked me if I think it's the remicade but I just don't see it. Most of the symptoms started to some degree before the remicade and they don't seem to get better the further from the infusions we get. If anything I'd blame the antibiotics...all the extra manifestations started on those.
All of his vitamins have been checked. B12 is good. Thyroid and glucose as well.
Maya...how are they treating your daughter now that she has been diagnosed with pain amplification? Hers is more in conjunction with her arthritis, not CD, right? It's so hard to find info on kids with CD experiencing pain amplification. I just wonder how to separate the two.
MLP...I am on the kids site too. I've been following you guys for a year but I've been quiet. For the most part R's symptoms have been so mild/vague and my experiences so few that I leave most of the advice to you more seasoned parents. But I've gotten some excellent advice there!!!!
03-22-2015, 12:13 PM   #8
Maya142
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My daughter is going to do a pediatric pain rehabilitation program over the summer. In the mean time, she is on Tramadol and Gabapentin (the Tramadol helps, the Gabapentin doesn't seem to do much).

There are plenty of kids with all sorts of diagnoses at the pain program - I remember meeting the mother of a kid with abdominal migraines, which I didn't even know was a condition!

In M's case, she has just been switched to a new medication for her arthritis, so we are going to wait for that to work and then see if she needs to do the program. Both her rheumatologist and pain management doctor think she will. Her arthritis has been so out of control for 2 years that we do think it caused the pain amplification.

JSpA does tend to start in the big joints (knee for one daughter, ankles for the other) but there have been cases where it starts in the small joints - my little penguin's son is one. It's just rarer.

You could also look up pediatric CRPS/RSD (which are also considered pain amplification) - it generally starts in a limb and is very painful.

I hope you get him to a rheumatologist soon.
03-22-2015, 01:14 PM   #9
my little penguin
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DS had symptoms start in his hands -both of them and ran independant of GI flare ( rare)
While on Humira which is also used to treat JSpA
In his case he needed a higher frequency of Humira and higher dose of Mtx to take care of both

Highly recommend the Rheumo
03-22-2015, 05:06 PM   #10
nogutsnoglory
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Location: New York

My Support Groups:
1) were you diagnosed before or after you were diagnosed with crohn's? how were you diagnosed?

After by a rheumatologist.

2) what are your main symptoms?

Severe exhaustion, neuropathy, dizziness, muscle aches And neuropathy.

3) how can you tell if you are flaring from the fibro or CD?

If it's GI related I assume CD anything else I assume fibro or chronic fatigue syndrome.
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