Muscle Pain Fatigue

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James04

Joined
Sep 27, 2010
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Hi,

My name is James. I was diagnosed with Crohns about 12yrs ago. However I have had some symptoms since about 18yoa.

My disease is fairly mild and typically manages well with Asacol. However since being diagnosed I have had a slowly progressing muscle fatigue. This is typically any muscle I use. So daily is feet, legs and back. But if I am doing physical work or exercise it can be any muscle in my body. Something as light as holding down the gas pedal on a long trip or holding a phone to my ear for more than a few minutes can leave me sore and in pain to varying degrees. This is usually accompanied by a general sense of fatigue and will vary with the amount of muscle in fatigue.
 
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It looks like I am limited to a small amount of text.

This muscle fatigue had me thinking I had poly-arthritis. However I have never had a swollen joint in my life and all blood work shows no inflammation. Recently a month of 10mg of prednisone in the morning showed no improvement. I think the muscle pain is making me feel like my knees, elbows, foot joints hurt but it is like when you have a tooth ache and you are not sure exactly which tooth is the culprit (transference?).

Has anyone else experienced this? It is taking the quality of my life way down. Since i a formerly a carpenter and am trying to get a custom built furniture businesses going. But I feel like crap all the time and am having trouble with getting motivated to do the physical work that needs to get done. Could this be a side affect from Asacol? It started after starting asacal but if I recall I was switched to sulfasalazine to rule that out. However this was for a short time with no improvement. So back to Asacol and persuing treatment for lyme.
 
Hi James,

Reading your description of the pain and the fatigue my first thought was Fibromyalgia. Has this been ruled out ? Fibromyalgia often seems to be comorbid with other diseases.

However, I myself do have muscle problems with Crohn's, though they do not sound as severe as yours. The problem was so bad a few years ago I was tested for Myasthenia Gravis, an autoimmune disease which causes progressive weakness in the muscles. At the time my eye muscles in particular were quite badly affected and I was having difficulty seeing well enough to drive my car. Fortunately, the result of the MG test was negative.

What I have found is my muscle pain and weakness have decreased dramatically in the past year since I began following the LOFFLEX diet, and as a result my GI doctor thinks the muscle problems were due to certain food intolerances. I still have severe painful muscle cramp occasionally in both my legs or both feet at night, but find I can deal with this by gently massaging plenty of Arnica gel into the affected area.

best wishes,
 
Have you been tested for anaemia? Also vitamin and mineral deficiencies can cause problems like this, particularly b12 sodium and potassium. Do you take any supplements at the moment? And where is your disease located?
 
I have had issues, but not as bad as what you describe. They have actually started me on physical therapy due to it tho. My was due to my potassium being too low (2.3), and being dehydrated, along with being very anemic (7.1 i think it was...i'd have to grab the paper and look at it to be for sure, but i do know it was very low, and low enough for blood transfusions).
 
Hi All,
Sorry I haven't responded yet. I wanted to be able to look at my blood work. It was all normal. RBC, WBC,ESR=14 (0-15normal).No testing was done for vitamin or mineral deficiency. However I have taken b-12 injections and they made no difference.Which doc should I ask for this? GI or Reumetologist.They seem not to like patients who "know to much" and ask for tests. They always say stuff like. "You seem well versed in medical terminology". In other words if you don't sound like an idiot. You must be a hypochondriac! But when you have been trying to find out what the heck is wrong with you for so many years. You tend to learn some stuff.

The rheumatologist wants to put me on Humera. He thinks I may have Ankelosing Spondelitis. However I am negative for the HLA-B27 and my xrays only show mild arthritis in my sacral joints. But I have an old back injury! Rheumatoid factor is 7 (<14=normal) C reactive protein <.03 (0.0-.49=normal).

I am afraid of going on Humera. Since crohns patients have a predisposition to colon cancer. It scares the heck out of me. If I start humera and then stop if it makes no change to the muscle skeletal stuff. Will I get a major flare of my crohns?

What are the tests for fibromyalgia?

James
 
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Welocme James. When I was having severe joint and muscle aches my GI sent me to see the Rheumatologist. He ran every test he could think of. My vit D was low and he started me on prescription Vit D, he has me on Vit's without iron, and Calcium Citrate. My feet and ankles would hurt so bad I could barely walk. Ther are other things that can cause the pain ask your GI if you can see a Rheumatologist. If your worried about going on Humira there is a thread here for those of us on it. I have been on it for almost 2 years now and no regrets so far. I still have issues, but I'm better than I was. I hope you can get some relief soon. Let us know how it goes.
Lucy
 
Hi James
I also have crohn's and have problems with pains around my body,I have osteoarthritis in certain places,but if someone just touches my arm or any part of me the pain is terrible it feels just like I have been punched in that area, like if you where touching a bruised area very hard, but I have found in the past dificult to explain to my rhuematoligist.he also cannot find any inflamation and have had mri scans blood tests.
He did mention fibromyalgia.I take methotrexate but it still hurts.Hope you find out soon .xx
 
James04 said:
Hi All,
Sorry I haven't responded yet. I wanted to be able to look at my blood work. It was all normal. RBC, WBC,ESR=14 (0-15normal).No testing was done for vitamin or mineral deficiency. However I have taken b-12 injections and they made no difference.Which doc should I ask for this? GI or Reumetologist.They seem not to like patients who "know to much" and ask for tests. They always say stuff like. "You seem well versed in medical terminology". In other words if you don't sound like an idiot. You must be a hypochondriac! But when you have been trying to find out what the heck is wrong with you for so many years. You tend to learn some stuff.
Click to expand...

Do you have a primary doc? My pcp is the on who does all the testing. I know usually they don't check potassium levels unless you get a doc that thinks it may be relevant, but for the most part you have to request it.
Sounds like the docs I knew in the state of Indiana. bah, that really suxs too. Are you able to go searching for your own doctor? Or does your insurance dictate who you can and can't see? (if it were me, I would call around and see if I could find another doc that i liked, that didn't make me feel like a hypocondrac. - which btw, i know what you mean by that.. My father even told me i was a hypocondrac once.
But do know that you're not alone. :)
 
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Hi James, I would ask your Gi, or see a dietician for digestive disorders. Sometimes they know more than doctors know. Been there done that. Vitamin D, and calcium, B12, and potassium will cause lots of problems if you are deficient on them. There is a certain tiredness with Crohns and muscle problems, I have had that from time to time. My doctors never say or contradict each other and never say "you know too much from the Internet"... Some doctors lack a bad side manner. If it is Gi issues, they should deal with most of your problems if they realize there are many connected symptoms with Crohns.

The predispostion with Cancer from CD is very rare. It takes years to develope and if you have regular scopes they can catch it if is starting. I have had Crohns over 20 years and have scopes and my Gi and GP (who has colon cancer) says never worry about that, you are fine. I have been on Remicade, Humira, and methotrexate,imuran...many more, and I am still here, not perfect but I am still here :lol:
 
Hi All,

I will answer some of the questions that some of you have asked about.

My CD is in my large intestine. Mostly the descending colon and rectum.

I can go to any doctor with my current plan. Out of network cost more out of pocket though.

Pen,

Thanks for the comforting thoughts regarding risk of cancer. I am still on the fence about humera. Mainly because of being on 10mg of prednisone daily for a month made no difference with the muscle/skeletal issues. This would indicate it is not inflamation. I wonder if the dose was just not enough. I had to stop prednisone since we are trying to get pregnant.

I am waiting on follow up with the ruehmetologist since I am not sure about the humera.

James
 
Hiya James

something else to consider - Amitriptyline
I've been taking this for 2 months now at 25mg at bedtime. I was given it for Occipital Neuralgia originally after 3 sessions with an osteopath, my GP told me it works at low doses as a pain receptor. I have terrible pains in neck and back, I had awful joint pains from the pred withdrawals, physio said I've got spondylitis in my neck, my knees are knackered and so on and so on!
I have no pain whatsoever!
I'm sleeping better than I have for years and years! I'm back at work full time and pain free, even my Crohns is pain free (but I am on Pred tho) so dunno about that!
I'm also calmer than I have been for years!
Oh, and I'm saving the 'big guns' (biologics) as a last resort.
If you try this med, it will give you some relief for a bit whilst you wait for other dx.
xxxx
 

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