Joint pain

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gconner

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I was diagnoised recently with sjogren's disease. i have had crohn's for 37 yrs. and sjogren's is a new auto-immune disease for me. I am told once you have one, it is easy to have another. Now I don't know if the joint pains are from sjogren's or crohn's . Does anyone else have both? My crohn's is flared with nausea and lots of diarrhea and I am on Pentasa and 20 mgs. prednisone. It seems to thre Pred. took care of the joint pains, not hurting at all now, but was terrible previously on 10 mgs. Pred. I also take a nausea pill that helps quite a bit. Now to get rid of the nausea and diarrhea!
 
Hi gconner! How are you doing now?

I don't have sjogren's but do have joint pain. Mine is arthritis. Have you had an x-ray done to see if you have arthritis? So far what I read is that if you have Sjogren's syndrome then you are more likely to have other immune disorders (you've got two now, hope there isn't another lurking). http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147

Steroids helped with my joint pain as well. Maybe an x-ray will help shed some light on what the real cause is for the joint pain. Sorry I'm not much help here. :(
 
Hi, I am a bit better, but not much. The crohn's seems to be taking its sweet time getting any better - so many trips to the bathroom. I have lost weight, but could still lose more w/o being too thin. I was a little bit heavy. I had breast cancer lump in 2008 and had a whole body bone scan. The only arthritis was in my ankles and a bit in my shoulder and low back, nothing in the knees, wrist etc. I understand low back pain is common with crohn's and I have had some this time. Ice works better than heat for me. Do you get nausea with your crohn's I start the day that way and by dinner am hungry. I remember I had the same issues years ago, but have been well for so long this is all new to me now. Then the doc told me just to eat when I could, later in the day.
I am eating no roughage or spice at this time, trying to give it a rest. My last colonscopy last Sept. shows I have crohn's only in one spot. I had the ileum removed and where it was reattached is where the crohn's returned - only one surgery back in 1975 so have been lucky. Take care.

Gconner
 
Hi Crabby, see you take Klonopiin. I have had a couple of panic attacks in the last few mos. and the doc gave me Klonopin yesterday. Does it work for you, any side effects. I was taking just 10 mgs. of Paxil, he told me to stop and take this one. I saw all the side effects and have not tried it as yet.
Have you had any side effects and what was it given to you for?
Thx a lot, g conner
 
Hi gconner! I take it for panic attacks since I have a panic disorder. Hmm, been taking it for a while now so trying to remember the side effects I used to get. I know I started with .5mg but it didn't do much so I was given 1mg instead. The 1mg made me feel a little sleepy and slightly loopy (like you had a few alcoholic drinks) at first but those kind of died down and now it mainly gives me a slightly tired feeling. Its meant to relax you so with any of those you'll likely feel a little tired. They take about 15-20 min to start working for me.

Other than that I haven't noticed any other side effects. I don't even take it everyday anymore (was taking it twice a day to help with anxiety) but after a while just knowing that I had the pills on my person and I could take them anytime was enough. Its a feeling of being a little more in control that also helps with panic attacks.

I also used the distraction method to help with the panic attacks so I always had a little toy or smooth rock on my person (worry stones are great and mini koosh balls) to play with/distract me from the symptoms I was having.
 
gconner said:
Hi, I am a bit better, but not much. The crohn's seems to be taking its sweet time getting any better - so many trips to the bathroom. I have lost weight, but could still lose more w/o being too thin. I was a little bit heavy. I had breast cancer lump in 2008 and had a whole body bone scan. The only arthritis was in my ankles and a bit in my shoulder and low back, nothing in the knees, wrist etc. I understand low back pain is common with crohn's and I have had some this time. Ice works better than heat for me. Do you get nausea with your crohn's I start the day that way and by dinner am hungry. I remember I had the same issues years ago, but have been well for so long this is all new to me now. Then the doc told me just to eat when I could, later in the day.
I am eating no roughage or spice at this time, trying to give it a rest. My last colonscopy last Sept. shows I have crohn's only in one spot. I had the ileum removed and where it was reattached is where the crohn's returned - only one surgery back in 1975 so have been lucky. Take care.

Gconner
Click to expand...

Yes I would get nauseated during a flare. My Crohn's was also in my ileum and I had a narrowing so chances are that had a fair amount to do with the nausea. I never ate breakfast and still sometimes don't. The other day though I had to get my wedding dress fitted and had to eat something but felt a little nauseous (usually do after drinking water first thing but my mouth was dry) so instead of eating, I drank an Ensure and it made me feel so much better. So I know for me that if foods bother me, I at least go for Ensure or something along those lines so I get the nutrients I need without the pain or nausea plus I wont feel dizzy or tired later from not having anything. If you haven't tried Ensure or something similar yet, I'd highly suggest it!

I know ice is better but my arthritis hurts my back and hips the most and the ice never seems to get deep enough. Or maybe I'm too fat. D: Heat is very very temporary for me. As in it feels better only when the heat is on but as soon as I'm away from it, it hurts again.

I also had a resection. Waiting to have a pill cam to make sure I don't have Crohn's coming back in that same spot (or anywhere else for that matter but the resection site is most common).
 
HI, we have a lot in common. I have had crohn's 37 yrs. I have had a resection of the ileum with some on each side. Mine returned there pretty quick, but this surgery was in 1975 and I have had no more. Right now just the nausea and a lot of headaches, which the doc thinks is due to dehydration. Yes I know all about ensure, but had atrial fibrillation the first part of this month, am on blood thinners for another 3 or 4 weeks and can't have Ensure as it has vit. K in it and that thins your blood more. I had the therapy where they shock the heart back into rhythm. It is doing good so far. The doc was a bit scared of puttng me on the thinner, but had no choice as anything such as a crohn's ulcer could bleed. So far ok and I have on them a month. When I get off I hav e to take an aspirin a day, have no choice It helps in preventing strokes. I am taking 20 mgs. Prednisone and Pentasa and hoping the raised dose of Pred. will get the crohn's back in shape. Glad to know that is the kind of crohn's that gets nausea. There are lots of types of crohn's and some do not cause nausea but I thought this was the one. IN the am I can make a cup of decaf and some dryish toast. Later in A.M. I have some fruit (banana or peach) and then by lunch I can usually eat something small and by five I am pretty hungry. It's just a real fatigue maker and if I sleep during the day for 2 or 3 hrs. it's then hard to sleep all nite. If you have any quest. for me, just ask.
Ths, Gconner
 
Forgot, my back pain radiates around to my hips. I use ice too, but the Prednisone stopped it, I don't have it any more, it was really bad for a few days. I drink Propel mostly now.
Are you sure they will do a pill cam. My doc won't, he is scared it will get stuck in the narrowed spot. Gconner
 
How about gatorade or something like that to help with the dehydration a bit? I know my grandpa (who had a stroke and takes Warfarin) drinks Power Aid (the sugar free one since he also has diabetes). I'm not sure if it helps him much since he has some slight brain damage from the stroke but I know it helps me (I try to stay away from certain colors/flavors like the red and purple cause they give me diarrhea, blue works ok with me though).
 
I drink Propel, similar to other power drinks. I like Strawberry kiwi, has potassium etc. in it and tastes good. It is not really colored much, mostly lie water with a little flavor and vitamins.
Warfarin made me so sick, I swelled up and when he tooke me off, I lost ten lbs. in five days. My feet were like little pillows and I was very nauseated. never want it again. He put me on a new pill - that thins the blood, Xarelto.
It is temprary and hope to get off of it middle August. GC
 
Joint Pain
Hi I'm wondering if anyone has had any similar pain experiences. I have had joint pain for around a year now in various parts of my body from knees to shoulders.
I got up this morning to find I had severe pain in my heels, both of them. I have found it very hard to walk at all and haven't injured them at any time either. I can just get by if I walk on my tip toes but I can't go on like that. Any ideas would be really helpful

Thanks
 
Joint Pain,

Yes, I have Crohn's Arthritis. My Crohn's actually started as joint pain. But, after 2 months of Motrin, my colon finally gave way. It was at that point I was diagnosed with Crohn's. Prednisone always works for me. I tried all the arthritis meds when they would come out with a new one, but no luck, just made my Crohn's flare.

Sorry you are having this symptom. I have had it for 30 years. Never goes away, and moves through the body. I always got relief with prednisone, but they pulled it from me and I take Budesidide and Tramadol, along with Omeprozole now. I was told as long as I have joint pain my Crohns is active. And it is true. I can only take the tramadol for several days at a time, if I take it for a continued period I start getting gutt pain and eventually have trouble passing.

And, yes, it seems you can get other auto immune diseases. I have some issues with Fybromialga. Basically the same treatment as the crohns. It seems they treat most auto immune disease very similar. And prednisone is always on the top of the list of drugs to take..

I have learned to go easy on my body. I also learned that this arthritis in not like other arthritis. It is good to try and loosen up the joints a bit if possible, but I have found the more you use them and the more you work them, the worse they get. Over the years I have learned to rest the affected areas, and use the parts of the body that are not effected, until the affected area moves or goes away. Yes, easier said than done, especially when it settles into an area for years at a time, but I have found that it works best for me.

I have pain in my pelvis, and hips, as I see you are experiencing now. Sucks when just turning over in the bed becomes a chore. It can be very painful, very debilitating, and very hard for others to understand. One minute you're gliding along and everything is great, and the next minute you can barely put one foot in front of the other. And when it gets to aching...ouch. When it is in your hips and shoulders they feel like they just want to fall off. it just sucks.

Rest and diet are all I have found to work. Along with meds. of course. I don't smoke, barely drink (tried it, doesn't work) and it has made a great improvement. But, I still have never been in remission. That doesn't mean I have not had some great moments over the years. The active times just don't last as long as most people. Moderation means something totally different for someone with a chronic illness.

I came to this determination some time ago " there are some pains that can only be cured with unconsciousness" As bad as it gets, I have known other with much worse pain.

Hope you start feeling better.

Peace and love.
 
Hi, thanks for getting back to me that is some great advice. I was only told last week that the joint pain was Crohns arthritis although I have had Crohns for 13 years the pain has been more prevalent in the last 12 months. I'm currently taking OxyContin & Oxynorm, I can't take prednisolone any more as I have Cushing's syndrome because I have been on them for around 8 years now. They used to work wonders and after a few days I felt as though there was nothing at all wrong with me, but the effects stopped working 4 or 5 months ago.
My job is very physical as well so I was hoping for a better solution than just pain relief and rest.

Thanks again for the advice any more would be greatly appreciated.
 
Thanks so much Higbonzo and all! I thought my terrible joint pain was yet something ELSE I had to deal with. I live with my heating pad :) my new best friend.
I have always been anti-pain relievers, but I just started with Tylenol. I have severe hip pain (can barely walk). Wrists, knees, feet, etc too. I am using as many anti-inflammatory foods as I can, including turmeric, and oil of oregano. I have books on the way for a diet for that. My doctor (Tufts, Mt. Sinai, Harvard Med) says it doesn't matter what I eat. But I am going to try.
Thanks to everyone! I am learning so much here...mostly that I am not alone in this.
 
Chally2 said:
Hi, thanks for getting back to me that is some great advice. I was only told last week that the joint pain was Crohns arthritis although I have had Crohns for 13 years the pain has been more prevalent in the last 12 months. I'm currently taking OxyContin & Oxynorm, I can't take prednisolone any more as I have Cushing's syndrome because I have been on them for around 8 years now. They used to work wonders and after a few days I felt as though there was nothing at all wrong with me, but the effects stopped working 4 or 5 months ago.
My job is very physical as well so I was hoping for a better solution than just pain relief and rest.

Thanks again for the advice any more would be greatly appreciated.
Click to expand...

I wish I could give you something else. I would be doing it myself.

Take it easy.

Later...
 
Higbonzo, you sound just like me. There comes a time with crohn's it seems that the joints just go. I have had crohn's for 37 years and just in the last four years my pains started in my bones (as I say). My left hip gives me heck as well as my kness and sometimes my ankles and toes. It's hard to wash the bottom of my feet. I am just like you, when I get into bed, my hip hurts when it hits the bed or sometimes when i turn over. I have not even mentioned it yet to the doc as I know what it is - crohn's arthritis. I went to a rheumatologist and he was not at all interested in me (I think because I just got medicare). Once he read my form and found out I had crohn's he just said oh that's what it is from, see you in 3 mos. No advice given so needless to say I never went back. I have been on Prednisone forever and recently had to go to 20 mgs. because of treatment for atrial fibrillation. Do you know not one joint hurt while I was on 20 mgs. When I got back down to about 14, it all started again. I am gradually going back to my normal 10 mgs. a day which seems to do nothing. Like you, my crohn's never seems to be under control. every time I have a colonoscopy I have an ulcer near the area where the ileum was (I had surgery in 1975 with ileum and part of colon and part of small intestine removed, total about 18 inches). I have had no further surgery but it of course re-occurred in the same spot and has been pretty active at all times. Mostly I am tired, have the horrid joint pains and lots of going to the bathroom. I always says I know where every store has their bathroom, ha! I have learned to live with it, except for the joints, they hurt. I only take Tylenol as I don't want to take pain meds. I take Prednisone 10 mgs. and Pentasa 3 pills twice a day. My PCP wants me to get completely off the Pred. but I don't know if I can now, it has been too long. I am going to discuss it with my gastro. who is a wonderful doctor (about to retire, boo hoo). I have been seeing him for 31 years and don't know what to do without him. I am semi-retired so that is good. I go into work about 2 days a week and that's great.
BTW my bone density (recent and sev. times before) is above normal. The Rheum. could not believe it being on Pred. for so long, but I had a big-boned dad, ha! And I am tall 5'9" for a lady with fairly large bones. We need to start a "Joint Pain Club" and call it JPC. I bet we would find tons of crohn's patients have these issues.
 
Chally2 said:
Hi, thanks for getting back to me that is some great advice. I was only told last week that the joint pain was Crohns arthritis although I have had Crohns for 13 years the pain has been more prevalent in the last 12 months. I'm currently taking OxyContin & Oxynorm, I can't take prednisolone any more as I have Cushing's syndrome because I have been on them for around 8 years now. They used to work wonders and after a few days I felt as though there was nothing at all wrong with me, but the effects stopped working 4 or 5 months ago.
My job is very physical as well so I was hoping for a better solution than just pain relief and rest.

Thanks again for the advice any more would be greatly appreciated.
Click to expand...


You might be able to get Cortisone Shots. I got them in my shoulder for a few years. Not sure it was one of my brighter moves, but I was able push my body just that much harder. I think you can get them in the hips.

Later...
 
gmcconner said:
BTW my bone density (recent and sev. times before) is above normal. The Rheum. could not believe it being on Pred. for so long, but I had a big-boned dad, ha! And I am tall 5'9" for a lady with fairly large bones. We need to start a "Joint Pain Club" and call it JPC. I bet we would find tons of crohn's patients have these issues.
Click to expand...

My bone density tests always come up fine. I don't take prednisone anymore. I take budesidide, it is a steroidal used for sinus inflammation. And I take tramedal for pain. But, I can only take it for short periods of time (3-5 days) then it starts getting to my gut. I have not been scoped in 10 years, top or bottom, because we are all afraid it will kick me back up into a major flare. Which is fine with me. If it ain't broke don't fix it. My Dr. tries to talk into all the new meds, but I told them I am not going down that rabbit hole ever again. I am sick, I accept it. Everytime they try to make me feel normal they put me in the hospital. Spent 20 years in and out hospitals, lost my colon and rectum, and never felt normal but maybe 3 years out of the hole time. Now I feel like I have Crohn's, live with the pain, don't work, just around the yard when I can, and try to ride my motorcycle a few times a year and go to all my children's events, and I am fine with that. But, I don't spend any time in the hospital anymore. It is manageable from home, and I am just fine living this way. You are right, the prednisone is some good stuff. I think once my youngest child is out of the house I may give a shot at the 2 drugs I have not tried, Remicade, and Humara. I am lucky when it comes to treatment because I get to use Shands UF Doctors. But, there is only so much any doctor can do, I have even been with doctors' that were doing research and trials and, Like I said, I was in and out of the hospital most the time.

Anyways, it nice to know we are not alone! This arthritis does have a tendency to move around, so try to be patient. Try to keep stretching as much as possible, because you should get your range of motion back when the crohn's move out of that area. It is weird, I couldn't even move my arms much above my shoulders for a few years, it finally moved out of that area and I have full range again, just makes alot of crunching noise now. Fine by me.

Thanks for sharing. Take care.

Later...
 
I got up yesterday and now have incredible pain in my heels of all places, it's very painful to walk and the only way to get round it is to walk on my tiptoes.
Has anyone else experienced this?
 
Chally2 said:
I got up yesterday and now have incredible pain in my heels of all places, it's very painful to walk and the only way to get round it is to walk on my tiptoes.
Has anyone else experienced this?
Click to expand...

Definitely. The first thing I got when I went on 6mp was bad pain in one shoulder, particularly trying to sleep at night. After that cleared up it was the achiles tendon. I felt like I was 95 years old sometimes. But the good news is that passed as my body got used to the meds.
 
Luckily I'm not at work for a couple of weeks as I've just had surgery to replace two seton drains but I hope the heels clear up by then as I'm on my feet all day at work. Even painkillers had a minimal effect.
 
Chally2 said:
I got up yesterday and now have incredible pain in my heels of all places, it's very painful to walk and the only way to get round it is to walk on my tiptoes.
Has anyone else experienced this?
Click to expand...

Yes, I looked up all possibilties for the problem, and after several month it went away. Crohn's Arthritis, isn't just wonderful. I wore running shoes all the time. I would wear them all around the house, and everywhere I went. That is about the extent of my advice, wear super soft souled shoes, where them all the time, and try to rest. Hot water soaks, heating pads, and Pain killer will take you a long ways as well. I don't like walking much without a walking shoe, or running shoe, because my hips get soar after wallking bearfoot for long periods of time.

Sorry you are experiencing this pain. Hurt like hell.

Take it easy.

Later...
 
sneezey said:
Definitely. The first thing I got when I went on 6mp was bad pain in one shoulder, particularly trying to sleep at night. After that cleared up it was the achiles tendon. I felt like I was 95 years old sometimes. But the good news is that passed as my body got used to the meds.
Click to expand...

Feeling like a 95 year old is a great discriptions of what the pain is like.

I also tell people it is like having a tooth ache in your joints and there is nothing that can be done to make it go away.

Later..
 
Hi all I posted earlier about my joint pain, I reduced my steroids to zero over a period of weeks as instructed by my consultant. Over the past two weeks my joint pain has been so severe that all I could do was sit in a chair all day, to top it off both my heels have gotten so painful even to touch over the past three days I can only walk with support and in severe pain. I couldn't get an appointment until Dec 27th and as a last resort have increased my prednisolone for my own sanity and not to spoil Christmas for my family, does Anyone have any experience of this as I am now at my wits end.
 
Hi Chally2, I have had bad heel pain off and on over the years. My doc suggested freezing a plastic bottle of water (don't fill all the way up or it will burst) and when your heels hurt put it under the foot and roll it. It does help. I am going down from 20 mgs. of Pred. at the moment and having lots of joint pains also, but not heels. Mine are in my knees and left hip. One of my docs calls it "inflammatory arthritis from Crohn's". My PCP wants me to get to zero on the Pred. I am at 12 now from 20. I really don't think I can do that. I will stop at 10 and discuss it with my gastro. Due for a colon check mid-Jan so will see how the crohn's is and what I can and cannot do. I also have sjogren's (another auto-immune disease which causes joint pain) so who knows. BUT I THINK it is from a flare up and reduction the pred. is making it worse. Flare-ups are worse during stressful times like xmas of course. If I were hurting as much as you and could not get an appt. I may be apt to go to the ER and then your doc will come see you. Take care and feel better for xmas. Just start going off after the holiday. I was supposed to be down to 10 by now but didn't make it. How much did you take and where are you now? Crohn's is a bitch and no one understands it unless they have it and I mean doctors too.
 
Hi gmcconner I've been on prednisolone for years on and off the last I met my consultant I was on 25, had put on loads of weight and had Cushing's syndrome so he told me to get off ASAP. The last few weeks I reduced by 2mg per week but after being off them for 5 days was when the real pain started. I've started back with 30mg but I'm giving my doctor an ultimatum next week about getting something positive done about the pain as it is taking over my life.
 
My doc told me to redue about 2.5 mgs. every week or 10 days, but I know my own body and know that does now work for me. was on 20 at approx. end of July and started reducing after about 6 weeks to 1 mg. a week to 10 days. The slower I go down the less pain i have. I am at 12 now, took a long time to get there. I can't do 2 mgs. a week. And yes I have gained weight but so what!! I went thru a stage for about 6 weeks where I was just like you, taking over my life. It has gotten better. Someone I know uses Humira and loves it, it works for them (2 people). have you tried it? Also have you tried Remicade? I have had neither but if I was in so much pain I would ask my doc about those two. I am sorry you are feeling so bad at xmas. Do you have children? I would have to go back to read all the other replies so I will just ask. It is so hard to deal with anyone or anything when in pain. Until I started reading these blogs I thought I had something horrible. Now I know the pain is crohn's as all of you have the same issues. I am sure you will get better, go slow when going off. I don't think Prednisone and Prednisolone are any diff. Would have to look them up, but both are steroids. Hope you have a merry christmas. I would take that big dose with food!!! Take care, GMCConner
 
Chally2,

I have had Crohns Arthritis for 30 years. If you have not you can read my post on this thread. I can only manage it, some days better than other, some years better than others. The Doctors tried to go staight at it with all the new meds but it just makes things worse. I finally told them I could not take it anymore and just put me on prednisone. They said no, but they had found some patient had good results with Budesonide. Now that is all I take with tramadol for pain management. I wish I could tell you I was pain free, but I don't expect to ever have a day without pain. I just expect to stay out of the hospital, because that is where I ended up everytime I went down the "rabbit hole" of no pain. I may give it another efforts some day, but not until my youngest child is out of the house. I would rather be a daddy that has good days and bad days, than a daddy that is constantly in the hospital. But, that is just me.

Happy Holidays.

Later......
 
Hi both and thanks for the replies I've been on Humira for two years and was on Remicade over here it's called Infliximab, the second time I was put on that I had a massive allergic reaction where over a 12 hour period all my joints from my toes to my jaw slowly seized up. I was rushed to hospital and put on IV steroids and that fixed it, but in the small print of the patient information it says the second time you have been prescribed it you can expect that reaction up to 13 days after infusion I seized up on the 13th day and that's also when my joint pain started. On the bright side I got up this morning and my heel pain has completely gone! And about half of my other pain has also gone I have also had the best sleep in months I was usually only getting 4-5 hours last night I had 7. The magic of steroids eh lol prednisolone and prednisone are the same drug.
Thanks again for the advice Merry Christmas
 
Chally,

Glad to hear your pain has subsided. The good thing about crohn's arthritis is it will move around, even it takes years sometimes, and will leave the joints fairly undamaged. It is not like some of the other artrhitis that completely destroys the joints. I have a lot of crunching in my joints, but I still have my range of motion. Although, you will lose range of motion when the crohns is active in a joint. But, like I said it will tend to move on eventually.

This is a great time of year to get some relief. Enjoy your sleep. And your Holidays'.

Later...
 

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