# Back pain---Muscle or Joint???



## JenS

My back was in so much pain this month.  Doctor said "myalgia" which means muscle, but I think it could be joint pain.  Xray was clear, showed no problems.  What does your Crohn's-related back pain feel like???


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## my little penguin

Have you seen a Rheumo ?
Xray won't show anything until there is damage done
An mri would show if it's related 
Check out SpA
It's common with crohns
https://www.rheumatology.org/Practi...itions/Spondylarthritis_(Spondylarthropathy)/


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## JenS

I guess it's time I see a Rheumo.  My general doctor is a DO so has been doing back adjustments but they are no longer helping me. 

I have had major backpain for 2 or 3 weeks...and the diarrhea and bleeding started five days ago.  I feel horrible.


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## samman

Your probably starting a flare and my back hurts a month before I get any gastro issues. I don't even get diarrhea that severe but my intestines are severely swollen. Treat he flare and your back will stop hurting. I had a disc and thought it was from that. Then I thought it was from sitting and not moving.  If you move and it gets better and you get it around gastro issues. Get treatment if you are not as fast as possible. Mine spread to my ankles, knees as well.  Once flare subsided so did everything else.  Prednisone worked and now I will go for 6mp and/or biologics soon. I never want to get the problems I had again.  The combination was debilitating.


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## POTTYTIME!

JenS said:


> My back was in so much pain this month.  Doctor said "myalgia" which means muscle, but I think it could be joint pain.  Xray was clear, showed no problems.  What does your Crohn's-related back pain feel like???


just seen a spine doctor today due to this same problem.  My GI feared the crohn's disease has moved into my back.  I have 2 disk with arthritis in them due to crohn's disease.   I dont know the medical term it is called but, I have severe Crohn's Disease and just a short time I have:  Gallbladder removed,   fistula surgery,   out of work for over 6 months now.  Now I have to have a two step procedure done on my back,  that will take over a month to do, with only an 80% success rate.


You do need an mir to tell anything.  Xray will show nothing


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## goldiejohnson26

JenS said:


> My back was in so much pain this month.  Doctor said "myalgia" which means muscle, but I think it could be joint pain.  Xray was clear, showed no problems.  What does your Crohn's-related back pain feel like???


Honestly, I don’t know because I haven’t experienced it yet. But did you have your MRI? What does the result show?


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## EvieBaby

I have terrible hip and back pain but I'm waiting for an MRI scan to see what's going on. It's getting where I can't even stand up straight and being on my own with a 7yo is making life very difficult!


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## samman

Does this come with your flares "EvieBaby"? I had back pain with my first flare and second flare and both times it went away after getting treated. I did not know I had Crohns both times and you would never believe that back pain so severe could be related. Also you should check for Ankylosing Spondylitis a condition associated with people with Crohns.


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## POTTYTIME!

EvieBaby said:


> I have terrible hip and back pain but I'm waiting for an MRI scan to see what's going on. It's getting where I can't even stand up straight and being on my own with a 7yo is making life very difficult!


I had the same problem.   MRI showed two degenerated disk with arthritis in them.  Crohn's related.   I am now in recovery from disk replacement/fusion surgery.   Praying yours does not turn out this way.


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## samman

PottyTime I hope you get relief from your surgery. I would love to know what happens with your results. I may end up needing surgery if my discs get worse or start impinging my nerves. 

I have two degenerated disks but did not need surgery. It actually no longer hurts.  Please keep in mind some people require surgery and some do not.  I get some periodic pain if I sit too long.  I read a book by a spinal surgeon who says that a large part of the population actually has issues in their spinal MRIs (lower back degenerated disks etc as you age) but not all the issues actually manifest into pain and go unnoticed.  When I got my MRIs I had degenerated disks and I did not know I had Crohns.  It was inflammation on top of the degenerated disks.  So I purely thought I had back pain due to the discs. MRIs showed degenerated discs then 6 months later my flare came.  This is supposedly very common that Crohns symptoms occur after months of back pain and sometimes years later.  In short what I'm trying to say to anyone looking at their back pain as purely a disc related, make sure you know what is causing the pain.  The book I was reading clearly stated that in many cases that spinal surgery is very tricky and sometimes does not relieve the issues because sometimes nerves are abutting the discs but that is not the actual cause of pain (my case).  In my case the disc degeneration issue may have been caused by Crohns.  I almost began talking about surgery with my Dr. because the pain was unbearable. The first week on prednisone and my back pain went away immediately. So my guess is that the disc issue is being exasperated by the inflammation. Thank god I gave it a chance. Make sure your spinal Dr. knows about your Crohns.


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## JenS

Sorry for the (really) late reply but I haven't been on the forum in a while.  My hip and back pain were getting bad so I got a cortisone injection about 5 or 6 weeks ago.  It really helped....and then, I've started having a flare in the past 2 weeks.  Colonoscopy on Thursday, so we'll see what's going on.


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## samman

JenS don't let doctors convince you to do cortisone shots. They love to get rid of your immediate pain. I can understand if you are in severe pain and can not wait for your flare to be treated. If you keep getting shots vs treating the underlying problem it has many bad side effects long term for your spine.  

I would focus on treating your Crohn's and it will subside and you'll be shocked how good you'll feel overall.  I feel sorry for anyone that starts running to Drs for back pain.  I actually have a desiccated disk and thought my pain was from that but then realized that not all disk issues that show up on MRIs are actually going to cause pain.  In fact a very popular spine surgeon said many people surely associate back issues that show up on the MRI with the actual pain.  He says it is not always true.  I am sure that the cortisone worked for you because it reduces inflammation locally. Please remember like in my case I have a disk and Crohn's related back pain.  The disk pain is different than the Crohn's pain.  Once I got rid of my flare the disk pain I get is only when I sit for very long periods.  The Crohns pain was very broad and constant and would never go away until I treated my flare.  Not everything that happened to me will be the same for you but my point is treat your Crohn's flare first (prednisone, humira, etc or whatever your Dr. recommends) but do not treat side effects of Crohn's locally till you have tried to treat the flare itself. 

I was almost one hundred percent sure that my back pain was from the disc and I was wrong.  Once I took prednisone and my flare was under control I have zero back pain unless I sit for hours (my disc issue comes and goes but Crohn's back pain would not go away). 

I hope you solve your flare and I hope I'm right about not doing the cortisone shots.  I know how hard it is with the back pain it was worse than the flare.


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## my little penguin

Not all arthritis associated with crohns will go away if you treat the crohns flare 
Axial arthritis tends to be independent of Gi flares 
Peripheral arthritis tends to flare at the same time as Gi flares in most individuals known as type I
Type II which Ds has runs an Independant course of Gi flares 

There is also I high percentage of folks with crohns who also have ankylosing spondyloarthritis . 

Tagging Maya142

http://www.spondylitis.org/Learn-About-Spondylitis/Enteropathic-Arthritis
http://www.spondylitis.org/Learn-About-Spondylitis/Ankylosing-Spondylitis


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## Maya142

Seeing a rheumatologist is a good idea. Ankylosing Spondylitis or Spondyloarthritis (SpA) is usually independent of Crohn's activity. SI joint, lower back and hip pain are very common in SpA. Pain that increases with rest and gets better with movement is also a symptom. Morning stiffness and nocturnal pain are also common. 

Typically a rheumatologist will be able to diagnose you based on clinical signs and symptoms and possibly with x-rays or MRIs. X-rays tend to show joint damage but if you don't have joint damage (erosion, fusion etc.) yet then they would be clear. That is why for early disease, an MRI is necessary because it shows inflammation. It takes 7-10 years before damage shows up on an x-ray.

Certain drugs that are used for Crohn's are also used for SpA -- such as Sulfasalazine, MTX, Humira/Remicade/Cimzia etc.

CCFA has a good guide to the kinds of arthritis associated with Crohn's: http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Good luck!


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## samman

I agree with maya and my little penguin. I would like to emphasize that she should look into the underlying reason for her back pain and not treat it directly with cortisone shots.  There can be many reasons why she may have the back pain. Cortisone shots are not a permanent solution and they do affect the bone and tissue surrounding the area of pain.  My two siblings keep taking them and the pain keeps coming back. I try to convince them as well to check for other conditions that can produce back pain.  Ankylosing Spondylitis can be checked for with a genetic test.

"Although the exact cause of AS is unknown, we do know that genetics play a key role in AS. Most individuals who have AS also have a gene that produces a "genetic marker" - in this case, a protein - called HLA-B27. This marker is found in over 95% of people in the Caucasian population with AS (the association between ankylosing spondylitis " from

http://www.spondylitis.org/Learn-About-Spondylitis/Ankylosing-Spondylitis

So my point was to have people check for the underlying problem and not take ibuprofen and cortisone. *Please remember that she got her pain exactly before her flare by a couple of weeks.*  This is very common with Crohns related flares.  It can sometimes happen months before.  I don't believe it was a coincidence but she should get her HLA-B27 checked. I did and it came back negative.  If it is positive for her then she should obviously address that with a rheumatologist. I would ask her gastro to do the genetic test for HLA-b27 first as referrals nowadays take weeks sometimes depending on where you live and what type of insurance you have.  If she has a flare it would make sense to treat that first. That's what I would do if I were her Dr.  If the pain persists then move on. I also think that the first time one has a problem they should rule out one thing at a time. Next time she gets it again she will know what its from.  If you takes cortisone shots she will not know if it is Crohns related.

Jens please post back if your flare is over with and this did resolve your problem.  I felt that my gastro did not really have the time to look into my back pain and I wanted to help anyone on this forum that went through the back pain. Your solution may help someone who went through this.  Until my flare became severe I faced 7 months of hell from the back pain.  To the point I would cry as a grown man.  It was unrelenting and my primary was clueless she said get up and walk around. She did MRIs and referred me to a spine Dr instead of knowing gastro-back pain related issues.  When I complained of both she as a Dr. should of suspected something was not normal.  What stumped everyone was my disc issue.  That coincidence would not exist in most peoples cases and hopefully Jens will help someone else. I'm basically trying to get a tally of how much people who went through a flare went through back pain that was directly related to it. 

*I would also like to add that in later stages of the flare getting severe ( no idea I had Crohn's) I started getting knee and ankle inflammation.  That is not Ankylosing Spondylitis. This is definitely a Crohn's related arthritis. I would love to help someone with these problems as they are paralyzing. *


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## tots

Pottytime-

How did they determine the back issue was from your CD?

I have two discs in the area of my back pain, my finger are crooked ( like RA) mu GI and GP both say my hands look like RA. MY ANA is only slightly high. MY GP says with Remicade it shouldnt be high at all. 


Very overwhelmed!

Lauren


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## Charlotte.

JenS said:


> My back was in so much pain this month.  Doctor said "myalgia" which means muscle, but I think it could be joint pain.  Xray was clear, showed no problems.  What does your Crohn's-related back pain feel like???


X-Ray will only show joint damage which is a result of long and ongoing aggressive joint inflammation (arthritis). Arthritis can not be diagnosed with X-Ray. MRI would be an option, best option is ultrasound for smaller joints and knees etc. (MRI for back).
When joints are inflamed, tendisitis is very likely as well, so all the tissue around, including muscle can get very tight and trigger points are sensitive.
Severity would be dependent on joint inflammation for most of the patients.

When my joints are super inflamed - like now - my whole body aches kind of, I feel like being super heavy, legs feel heavy, muscles feel weak and heavy (I can still swim and exercise on a lighter level but I just feel like being 120 years old, as if my body isn't strong enough for my weight, which makes no sense because I'm slightly underweight...).

Would recommend to see a rheumatologist and ask for ultrasound and / or MRI.


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## my little penguin

Tots Ana doesn't have to be positive to have SpA
If you have crohns and develop arthritis then it's automatically SpA unless they can prove its RA

Are they treating your arthritis with a rheumotologist as the lead ???


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## Maya142

My girls have SpA and both have had positive ANAs. A weakly positive ANA can be caused by biologics -- your rheumatologist would probably know more than your GI about that. It's not unusual to have a weakly positive ANA caused by being on Remicade.

However, generally you do NOT need to have a positive ANA for AS -- in fact, one of the features is that it is "seronegative". It is much more common to have a normal ANA. 

HLA B27 is the main gene associated with AS/SpA. Something like 90% of caucasians with AS have the HLA B27 gene. The likelihood of being HLA B27+ with Axial SpA (the earlier form of the disease) is lower -- something like 60% if I remember correctly.

Any joint can be involved in SpA/AS -- including the hands and knees. In some people, joints flare when the Crohn's flares and in others, it is completely independent and has to be treated as such. My daughter is one of those people -- her Crohn's responds beautifully to Anti-TNFs but her AS definitely does not.

Charlotte is right -- MRIs are a much better tool for diagnosing SpA. Damage can take 8-10 years to develop (though it can certainly happen faster) and until then, x-rays would look normal. 

Disc issues are unlikely to be related to SpA.


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## JenS

I haven't been on in a few weeks, my apologizes.  THANK YOU ALL for the replies.  I haven't been a good patient.  I've been ignoring my symptoms in hopes they would go away.  But, no luck.  I took today off work in fact--due to Back pain, bleeding and now dizziness/vertigo.  I know, I know---bad girl! I will call GI on Monday and make an appointment.


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