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Crohn's Disease
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Posted 9/23/2014 3:49 PM (GMT 0)
I would like to know if others with Crohn's have similar issues as the following- I get what I can only describe as a 'burning pain' in my muslces whenever there is tension in them like holding arms up to type this- in my neck which I have to often rest my head to relieve the tension/burning pain

It is a burning pain like when you over excursive and you get that 'lactic acid burn'- that is exactly what it feels like- and it comes on very quickly, like within a minute or two of typing, or raking leaves, or even walking or whatever- and it is intense enough that I have to stop what I am doing and rest the muscles till the burning pain subsides- then I can continue for a bit longer but it always comes back fairly rapidly- Some days are better than others inthat I can go longer before the pain sets in- for instance, some days I can hike about a 1/4 mile at a slow pace before the burning pain starts, while other days I can only go like 100 yards or so. I have noticed that if I eat anything acidic like tomatoes or vinegar the day before, the burning pain will be worse the next day for some reason-

all my bloodwork looks in normal ranges for everything- the worst pains are in my calves, forearms, and especially the neck and shoulders. I've been to one doc after another, and some suggest firbromyalgia, however, I don't have even a single trigger point (you need like 11 trigger points out of 18 or so to be diagnosed with fibro- I don't even have one tender trigger point)

I've been tested for neurological problems, arthritis, thyroid, parathyroid- practically everything known that could cause such symptoms, but nothing proves out to be the cause-

Is it just the Crohn's causing this? The muscle weakness is bad enough to deal with, but when you throw in this awful burning pain on top- it's almost unbearable- To me it almost seems like the muscles quickly run out of fuel, and build up with lactic acid unnaturally quick- but I've been tested for acid problems (can't remember the name right now) but not found to have it-
Posted 9/23/2014 4:37 PM (GMT 0)
Are you doing any stretching exercises to stay flexible? It sounds like you are really stiff. Your complaints about typing giving you pain in your neck and shoulders sounds like you might need to look at how you are sitting at the keyboard.

It sounds really frustrating to have this kind of muscle pain. I also wonder if you are dehydrated?
Posted 9/23/2014 7:57 PM (GMT 0)
I have something akin to this nonstop with my Crohn's-related arthritis. My tissues are in pain all the time. My muscles and underlying tissues don't stretch in the normal manner; they can tear easily. But it doesn't feel like the lactic acid burn in my case, but a burning/tearing of tissue deep within that radiates from major joints. It's debilitating. It's really the most debilitating part of my disease as I'm never w/o pain. The tests I've had do show that I have active inflammation and arthritis though.

I know mine is related to Crohn's because it didn't do this when I was surgical remission. I've recently read about enthesitis in Crohn's disease and think this may be part of the equation for me. It may be something you can look up.
Posted 9/24/2014 5:47 AM (GMT 0)
Hello kazbern- sorry for the delayed response- I signed up with another email address and forgot to check for responses as I don't use that one much Yes, I exercise daily with walks, stretching, isometrics etc- but them ore I do, the worse the problem gets- I do try to do them daily though- and have to just grit my teeth and do them- not sure iff it's helping or making the issue worse- As for dehydration, I drink plenty of fluids throughout day- at least 6-8 glasses of water- The typing issue was just an example, my arms will hurt even driving, or just even sitting and writing or something- my posture isn't the greatest no doubt, but the pain is all over, not just neck and shoulders/arms-

JaSanne- you said "I know mine is related to Crohn's because it didn't do this when I was surgical remission."

Bingo- neither did mine- I was in remission for about 8 years after my first surgeries- (I don't remember my years before then- whether the muscles burned like this or not), and never had this problem while I was in remission- I was infact almost hyperactive, and would just go and go and go- hardly ever sleeping- just had tons of energy and strength and endurance- then I got sick again, slowly, over time, and the muscle pain just got worse and worse- I didn't even think to link it to when I got sick again- I briefly looked up the enthesitis and it looks like it's mostly affecting to joints? My joints are all fine- it's just my major muscles that seem to be affected by this burning pain- I've been tested for arthritis, and related conditions, and nothing showed up for those conditions-

You said "It's debilitating. It's really the most debilitating part of my disease as I'm never w/o pain." Again, bingo- I've said right along that the pain associated with Crohn's, and the the cruddy feeling I can deal with- but the burning pain on top of it is just too much- it is THE one issue that has debilitated me- I would have been fine had it not been for this- I can vividly recall, 16 years ago, as it began it's progression, as it slowly caused me to miss more and more work until I had to finally go on disability because the combo of the three issues, weakness, burning pain, and regular pain from the crohn's (mostly stomach pain) was just too much- Had I not had the burning pain, I would have continued on with working- but it just slowly robbed me of my ability to work- It just saps me of strength now-

It's been a long journey trying to find the cause- It acts just like fibro would (and yep- I even have the brain fog/mental exhaustion that is typical with fibro too)- but I don't even have a single tender point that is typical of fibro-
Posted 9/24/2014 1:32 PM (GMT 0)
Nazareth, do you feel like your bowel inflammation is in remission? Maybe JaSanne is exactly right and you've got something akin to enthesitis. I recommended to her that she try sulfazine, which has really helped my joint pain. I think she's in the midst of her first month, and I hope it's helping her.

I don't recall what meds you're using but sulfazine might be worth discussing with your GI.
Posted 9/24/2014 7:45 PM (GMT 0)
I just finished my first bottle of sulfasalazine at 1000mg daily (two 500mg pills, but I'm dividing the doses to 250mg 4x a day). It has helped the arthritis, but I'm still having pain though the pain is a bit different. I think my muscles need to relearn how to move without all the swelling, which I'm working on. And I think since I've had nonstop arthritis for 13 years, the nerves may have some damage. I'm already taking baclofen for nerve pain.

With my arthritis, I have radiating pain into my muscles which could be described as burning, and it also causes spasms, but mostly a drawing up of the muscles which don't want to stretch out no matter what I do. When I started reading about enthesitis, I thought that is probably what's going on with me. It doesn't help that I've sustained injuries over the years, but I think the arthritis has been partly to blame that I got the injuries in the first place.

The sulfa med has given me a bit of hope that I can get a handle on the arthritis. I've noticed my fatigue is a little worse than usual, but I hope that will aright itself in time. I had not tried it before because my childhood doctor had put in my medical records that I had a sulfa allergy. Apparently I don't now.
Posted 11/4/2014 4:20 AM (GMT 0)
Did your doctor test your levels of magnesium and potassium? Low levels can cause muscle spasms.
Posted 12/24/2015 5:44 AM (GMT 0)
hey folks, sorry for not responding for so long- I didn't have it set to tell me if someone answered-

DJ Yes, all my tests come out normal

JaSanne- sorry to hear about your pain- The sulfa meds can cause some weakness too-

Kaz, yeah I had been on sulfa at oen point- didn't feel much better- now I'm in remission-
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