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Crohn's Disease Forum » Extra Intestinal Manifestations » Arthritis » Joint pain, what will make it stop?


 
10-17-2011, 09:11 PM   #1
dahlfacepoet
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Joint pain, what will make it stop?

I have no official dx, but GI thinks early CD. I just started on Budesonide to see if I respond. I've been having awful joint pain, which I know is not uncommon, but I don't know how to cope with it. The tramodol I take for my abd pain does not even touch my joint pain.
I have a rheumy appt in late November.
My pain is very erratic though. One day my hand will hurt too much to use, then the next day my hip will hurt, but it's tolerable, then my hand will hurt again a day after that. Right now I'm dealing with awful right shoulder pain that limits my range of motion more and more as the day passes. I also experience pain in my back and knees quite often.

Is there anything I can do to help it? Anything at all?
I'm also confused on what will happen at my Rheumy appt. What is arthritis and does it occur all over the body like that, or am I experiencing pain associated with my illness? Sorry if these are stupid questions and thanks for any replies.
10-18-2011, 12:11 PM   #2
Chris_
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Hello!I was on prednisone and budesonide for 3-4 months.I had awful joint pain as well.Ankles,knees,hips and shoulders.Some days my shoulder pain was so bad that i couldn't lift my arms to take my shirt off.Now its about 2 months after i stopped taking them and i have no pain at all.

You should see your rheumy of course but dont worry too much.Its probably just a sideffect and you will be ok after you stop.
10-18-2011, 01:02 PM   #3
tiloah
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Prednisone got rid of my joint pain but while I was tapering off of it it became excruciating. I now have a prescription for Celebrex for the joint pain, but I haven't used it yet. I have been off of the Prednisone for a while now and the joint pain is much better. The pain initially started when my gut symptoms were out of control (I had surgery). Just like you my joint pain moved around a lot. Sometimes turning door handles or putting the gas cap back on my car was near impossible.

Hopefully the rheumatologist will have an answer for you. Celebrex is an NSAID (although it's supposedly engineered to not damage your gut), so I am wary of using it. It's definitely not an ideal treatment. I hope you find something that works for you and you get that pain under control. In the mean time I'd recommend a hot tub or warm baths if you can.
10-19-2011, 04:07 PM   #4
Cat-a-Tonic
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Dahl, I've got chronic pain in my hip which was initially diagnosed as arthritis (the diagnosis was just changed to bursitis). Physical therapy helped quite a bit - my GP was the one who initially wrote me a referral to PT, and the orthopedic surgeon I just saw said that he can write me another referral if I feel that I need to do more PT in light of the change in my diagnosis.

Long story short, it can't hurt to try physical therapy. It sounds like you've got a bit of a wait until that rheumy appointment, so you might want to talk to your GP in the meantime and see if he/she can give you a referral. (Make sure your insurance covers it too - I was told that not all insurance will cover PT, but fortunately mine does.)
10-19-2011, 10:20 PM   #5
Gue33
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I have the same stupid questions, so they can't be stupid. It made no sense to me either. My pain has subsided, but from June to October, it did the same thing to me as you are experiencing. I took 10 mg of Ketorelac and Tylenol Arthritis and it took the edge off. That was the best I could find. After the last Remicade infusion it has gotten much better. I cringe to think what I will do when it comes back.
10-20-2011, 07:33 PM   #6
dahlfacepoet
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I wish I could take a hot bath, but heat makes my symptoms go crazy, I've come close to passing out in the shower, I just feel awful afterwards. Which causes me to either wake up hours early to take a shower or shower at night.

Cat, I've had bad experiences with PT. A few years ago I was electrocuted and received nerve damage in my right hand. I had to go to PT in order to get movement back to my fingers and shoulder. My PT was very upset with me and believed I was faking. He paid no attention to me while I was there and I eventually stopped going to my appointments and just did the exercises at home. But I was also going through some pretty rough depression since my injury put me out of work and I never got my worker's comp. Maybe that had something to do with it.
But I don't have a GP (another long story), so I guess I'll have to wait for a rheumy appointment or complain again at my GI appt in a couple of weeks.
Though you did give me the idea to contact my cousin, he works as a PT, and actually helped me more during one christmas visit than my other PT did in 6 weeks.
10-20-2011, 07:40 PM   #7
tiloah
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The same thing used to happen to me! I absolutely hate bathing for that reason but it has improved a lot (I dunno why). Showering used to make my face become extremely red and itchy. Bleh!

I hope your joints feel better soon though.
10-20-2011, 09:00 PM   #8
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Remicade - I didn't even know I had arthritis - until i lapsed on a treatment due to financial situation. Was so bad I couldn't walk - it was in the bottom of my feet, my ankles, my knees, my elbows, my wrists, my fingers, and my hips. BRUTAL
I would not wish it on anyone and so can totally understand your plea for some relief. Remicade keeps mine at bay - but I wonder if while it's working on that - its not working so effectively on my crohn's.

Best Wishes
10-29-2011, 06:11 AM   #9
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My pain is very erratic though. One day my hand will hurt too much to use, then the next day my hip will hurt, but it's tolerable, then my hand will hurt again a day after that.
This has also started happening to me. At first I thought I was getting arthritis, now I am not so sure. I started getting pain in my knees, elbows and fingers, but now it is in different places at different times. Sometimes the area that is painful is red, but that is not for all places. It is in the joints and also in other places. I have gone through thinking I have arthritis to gout now fibromyalgia. The pain killers I am taking barely even dull the pain. Hopefully will have dr appt next week to start getting some answers.
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10-29-2011, 10:06 PM   #10
scifi-enthusiast
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Started to happen to me these past couple of months on Humira. But it didn't become excruciating until the weather started to change down here. It barely started to go from 104F to 93F. I now have to walk with a cane because of the pain. But whatever, it makes me look more mature...

I went to go see a Rheumatologist and saw X-rays of my fingers. It was amazing, even an uneducated hillbilly would be able to see the inflammation clearly. She put me on Sulfasalazine which doesn't seem to help much. Though I'd rather be in pain than have the feeling the pain killers give me (nausea, vomiting, etc). We're still waiting on the results for R.A., gout, and degenerative arthritis (my dad has all three). These tests do take time so you need to be patient.
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11-06-2011, 05:44 AM   #11
Spooky1
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i have this too, and have had it on and off since teenage. i know how the joints do their magic too. one day one hand is totally red and flared, next its moved to a knee. when it all happens together there is no getting out of bed without help.

i also experience nausea in hot water.

you have my understanding and sympathy
11-09-2011, 03:17 AM   #12
JohnnyRottenAppleseed
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Started to happen to me these past couple of months on Humira. But it didn't become excruciating until the weather started to change down here. It barely started to go from 104F to 93F. I now have to walk with a cane because of the pain. But whatever, it makes me look more mature...

I went to go see a Rheumatologist and saw X-rays of my fingers. It was amazing, even an uneducated hillbilly would be able to see the inflammation clearly. She put me on Sulfasalazine which doesn't seem to help much. Though I'd rather be in pain than have the feeling the pain killers give me (nausea, vomiting, etc). We're still waiting on the results for R.A., gout, and degenerative arthritis (my dad has all three). These tests do take time so you need to be patient.
is the arthritis a side effect of the Crohn's medications?
11-09-2011, 07:37 AM   #13
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I went to the dr this week, said that I might have glandular fever as the very intense pain I am having started after I had a flu. He said that it might also be an auto-immune response to the flu, but could also be rhuemetoid arthritis (possibly caused by crohns). Had some blood tests, so have to wait and see. Don't think there is going to be any quick fix to whatever is going on with me at the moment! On the plus side my belly is behaving itself! Have to be thankful for something!
Johnny O - as far as I am aware the medications for Crohns can cause arthritis (the warnings for humira say to make your dr aware of any new joint pain), but I think as crohns and arthritis are both auto-immune diseases, sufferers of Crohns often get arthritis. I am not sure of the stats or the rates tho.
11-09-2011, 01:26 PM   #14
Gue33
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My pain is back with a vengeance. I had two weeks of reprieve after my Remicade infusion and that's all. I've had exrays for arthritis and swelling of my joints, nothing showed. It's like it's taking every little pain I had and amplified it. What is the most troubling is the pain in my chest, my heart pounds when I really hurt bad. My blood pressure measures normal. I started and excel spread sheet and set the pain level, meds, BM's even period to numbers. I took pictures of the swelling when I could catch it as well. It really helped my Dr to see what was happening. No solutions yet, but we are working on it. Mean while I am using Ketorelac (Toradol) and extra strength tylenol for the pain and Elavil to try and get some sleep. My honey has to help me put shirts and socks on and help me lay down and get up. If that hurts to much I try and get some rest in the recliner. Works somewhat, I am exhausted most of the time. I have a real appreciation for the handicap toilets with the bar on the wall. Nothing like being stuck in a bathroom stall, because you can't get off the john.
11-09-2011, 01:59 PM   #15
Spooky1
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hey, i know how difficult it is to 'fling' yourself backwards onto loo, and then get off again. and then fling yourself backwards onto the bed and try and swivel around. someone else like me then. yaaay.
11-09-2011, 11:55 PM   #16
sunflower
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Here is a very helpful article on IBD and arthropathies!
http://www.medscape.com/viewarticle/750045
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11-10-2011, 05:33 AM   #17
beth
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Johnny O - as far as I am aware the medications for Crohns can cause arthritis (the warnings for humira say to make your dr aware of any new joint pain), but I think as crohns and arthritis are both auto-immune diseases, sufferers of Crohns often get arthritis. I am not sure of the stats or the rates tho.
Joint pains correlated with Crohn's medications can be a sign of an allergic reaction, not that they cause arthritis. Crohn's itself can cause arthritis as in Crohn's Related Arthritis and other extra-intestinal manifestations.
11-11-2011, 12:55 AM   #18
Mountaingem
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I have enteropathic arthritis, which is almost always a precursor to a flare, and reactive arthritis, in addition to enthesopathy of the left knee and hip. It's really important to see a Rheumatologist to figure it all out.

Like Sci-fi, I have flares directly related to hot weather, and often use a cane in the summertime.

Just a thought, but I noticed you are on Entocort, which is a steroid; have your calcium, magnesium and vitamin d levels checked. When I took it, my joints and bones hurt so bad and I found out it was due to extremely low levels of these vitamins.
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11-11-2011, 01:24 AM   #19
JohnnyRottenAppleseed
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I like your Michael J Fox quote :-)
11-11-2011, 06:34 AM   #20
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Well I have a diagnosis of what is wrong with me at the moment (apart from the obvious!) - I have dengue fever! I still think I have some arthritis as well, but the majority of the pain that I am having in my joints and muscles is from dengue. SO relieved to have a diagnosis.
11-11-2011, 08:57 AM   #21
Crohn's 35
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Well I have a diagnosis of what is wrong with me at the moment (apart from the obvious!) - I have dengue fever! I still think I have some arthritis as well, but the majority of the pain that I am having in my joints and muscles is from dengue. SO relieved to have a diagnosis.
I have been on this forum for many years and I still learn something new...never heard of Dengue fever, so I Googled it and just wondering how did you contract it?
11-12-2011, 02:22 AM   #22
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I have no official dx, but GI thinks early CD. I just started on Budesonide to see if I respond. I've been having awful joint pain, which I know is not uncommon, but I don't know how to cope with it. The tramodol I take for my abd pain does not even touch my joint pain.
I have a rheumy appt in late November.
My pain is very erratic though. One day my hand will hurt too much to use, then the next day my hip will hurt, but it's tolerable, then my hand will hurt again a day after that. Right now I'm dealing with awful right shoulder pain that limits my range of motion more and more as the day passes. I also experience pain in my back and knees quite often.

Is there anything I can do to help it? Anything at all?
I'm also confused on what will happen at my Rheumy appt. What is arthritis and does it occur all over the body like that, or am I experiencing pain associated with my illness? Sorry if these are stupid questions and thanks for any replies.
Hello and I am new on this site. Guess I'll just enter something here.
My crohns is mild and I take pentasa. This certainly sounds familiar. Tried glucosimine, therapy, orthopedics, acupuncture and tested for arthritis. Finally I saw a nutritionist. the best relief is to cut out all processed foods. That's processed meats including breakfast meats. No more processed cheese slices. Read the labels, cut out all additives and preservatives, even store bought bread. Try living on cooked vegetables, meat (no sauces), fruit, eggs, butter. Salt is ok and cheddar seems to be ok. Pickings are slim but I can function. I have a special blender smoothie every morning and would be happy to share the recipe. There is such a thing as leaky gut syndrome. Not sure if this is connected to crohns.
11-12-2011, 05:19 PM   #23
Mountaingem
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OMG Pjmel-that's awful! I have a close friend who contracted Dengue in Puerto Rico from sleeping out overnight on the beach-the mosquitoes that carry it bit him all over. He was extremely ill, and he is a healthy young guy,no autoimmune disease. Please take good care of yourself!
11-12-2011, 10:25 PM   #24
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Thank you for your kind words, Mountaingem. I am just so glad that I have a diagnosis. I was worried I would go to the dr and the blood tests would have come back negative for everything that they tested me for. I have been in so much agony and have been so tired, I said to my dr that I have never been so happy to hear I have dengue fever!
Pen, I live in North Queensland, so we have a fair few mosquitoes here, so could have been bitten just sitting outside, but I did go camping at the end of September so I think I contracted it then.
I am just taking things slowly, getting lots of rest, taking pain-killers if needed - even though the ones I am taking aren't recommended for crohns sufferers I don't think I could cope if I didn't take them.
11-17-2011, 09:27 PM   #25
Regular Joe
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I'm with mountaingem on the enteropathic arthritis. It's a prodrome to my flareups. My rheumy prescribed sulfasalazine, and it's the sulfa, not the 5ASA that helps the arthritis. In fact, I switched back to sulfasalazine after Pentasa. So I take 2G sulfasalazine now. It does help with the joint pain.
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11-17-2011, 11:05 PM   #26
ChattieCathy
 
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Hello Joe. Thanks a lot for the info. I'm still looking for answers and alternatives. It is so hard to give up cheese, milk, and bread. I had it figured that I might be only sensitive to the additives and preservatives. Ate the cheese and bread, had the milk in my tea and I'm in pain again. I have a breakfast smoothie and sometimes go all day without anything because it's just too hard to pack cooked vegetables in a thermos. I will certainly look up sulfasalazine. I am waiting to see a specialist. I'm glad you found a solution and thank you for sharing
12-03-2011, 08:18 AM   #27
jessyy21
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heya guys...
im going through the pain too! right now to the point where if i walk 100ft i get extreme pain in my ankles, shins (the sides) and my hips to where i have tears in my eyes... i always thought it was because i was big... everyone else thinks im just lazy
but now at least i know
i have a rheumatologist app on the 8th and i have my endo and colo on the 6th

i hope i can finally get relief and some treatment.... ive been undiagnosed now for 27 years and im to the point where i cant leave my home
12-08-2011, 12:18 PM   #28
mickey
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I found myself having extreme difficulty and pain a few years back each time I would come home from watching a movie at the theater. I attributed it to sitting a few hours without moving, never thought much of it until I could hardly move my knees. Orthopedic surgeon could feel the stiffness and joint problem and then next week it was the other knee and back and forth. Knuckles did the same thing. Long story short...found out I was allergic to corn (popcorn at theater each time) and my joints would swell. That was the start of my discovery of how foods can adversely affect your body and cause inflammation. Something so simple! Anyway, University blood tests showed much negative and only slight reaction to strawberries , when tested. I knew that was wrong, since I had been in emergency room for anaphylaxic shock twice in past month for supposed tuna allergy. Anyway, NASA developed an allergic test that some docs use (used in Germany hospitals, I'm told) and as soon as they began the test a two page list of items that caused allergic reactions in my body popped up on the screen. It was amazing. The doc said foods are a more powerful drug and tend to have more side effects than meds. As soon as I eliminated corn (and some other foods) I was able to walk around as a normal person and joint swelling went away! Listen to your body and watch what you put into it. It will tell you when something is off!

Glad to hear your problem had a quick diagnosis, but keep the above in mind as well!
12-08-2011, 05:34 PM   #29
tiloah
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Can you find out what tests those are? I would be very interested to know.
12-08-2011, 05:47 PM   #30
mickey
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I have noted below the doc I used. Her office can probably give you the name of the allergy test that is done on the computer and see if someone in your area does this as well. Quite amazing. Also tells you what organs in your body have inflammation, etc... fascinating and definitely works!
Martha H. Howard
MD, Dipl. Ac. NCCAOM
Chicago
(773) 935-6377
[email protected]
www.wellnessofchicago.com
Dr. Howards Blog: Allergies
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