• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohns and joint pain?

robbo87

robbo87

Hi guys, just wondering if anyone has any experience with joint pain? at the moment my knee's and feet are in absolutle agony and especially in a mornin i can barely walk at all. it can ease off a bit during the day but at the moment its terrible and really getting me down, could it possibly be arthiritis or something else?

also any tips on how i can ease it?
Regards
Martin
 
Jennjenn

Jennjenn

I am experiencing the same thing. It is terrible. Some days are bearable where I just try to go on and ignore it. I feel like I mask very well a lot of my pain infront of others. Then other days I just want to cry and feel like I cannot move. I am not sure if its from the Remicade but the last 2 months seems to be a lot worse when I got the increase in the dosage. I wish I could give advice on how to ease up the pain but I am wondering the same thing of what to do.
 
farm

farm

Captain Insaneo
Joint pain and Crohns have went hand-in-hand with me. NSAID's are good for joint pain (Advil, Naproxen, etc) but are bad for Crohns. So it's a catch 22.
 
N

NatalieMT

I have the same joint problems, for me it's mainly elbows, wrists, shoulders though. I can't sleep anymore with all the pain. I'll try to turn over, not be able to, then try to get back into the position I was in but find that too painful. Most of the time I end up getting up!

My consultant told me he has patients who do take ibuprofen without adverse affect. He said if I wanted to try it to go ahead but stop immediately if I did feel my intestines getting worse.
 
B

beth

I think I have found the answer, at least for me... My joint pains are fading into the background now. It's injuries to my back and I believe my shoulder that are currently playing up most.

Initial revelation was pain relief patches. I have a 5mcg/h buprenorphine patch, which is low enough not to cause me any side effects, like constipation - which is what tab's did to me horribly. But has enough oomph to take the edge of the pains to I can get on with my life, well, at least enabled me to be able to tie my own shoe laces - it got kind of embarrasing to ask hubby.

Second line of attack seems to be gabapentin - maybe called neurontin ins the US? . It's early days so far, only two days in, but it's promising. General aches seem down and acute pain from back is less aggravating. Hoping it;s not just placebo effect of Doing Something!
 
G

Guest1

Joint pain is an ugly "side effect" of Crohn's. A lot of us get it, myself included. Mine just started a few months ago and when my right side of my lower abdomen flares, my right knee and elbows with "flare" along with it to a rhythm! Way freaky and uncomfortable.
 
DanSJVDavis

DanSJVDavis

Try a regimen of Tylenol Arthritis. Tylenol's one of the pain meds that's not bad for Crohn's and if you take it as directed on the bottle it'll build up in the system eventually (i.e. every 8 hours, IIRC). Might at least take some of the edge off. I have a lot of joint pain issues with my shoulders, knees, hips, neck and lower back, so I know where you're coming from. You also might try taking some Glucosamine. I've heard it's good for the joints and possibly not bad for Crohn's. I've been taking it for a couple weeks for my neck, but I ran out.
 
T

twob

Msm

The vitamin C energy boost packets with MSM is good for joint pain. Powder you mix with water, tea whatever and works pretty quick. Be sure to get the one with MSM. Many people with Crohsn do not produce enough MSM and this helps. Dr. told my son to take one everyday.
 
robbo87

robbo87

thanks guys, well ive been to the docs today and hes told me to take ibuprofen, it has eased off a bit but im unsure about the ibuprofen as ive heard it can make crohns worse? and im having enough problems with feeling sick and stuff as it is at the moment! lol
 
B

beth

Both my surgeon and gastroenterologist are very against any nsaids or even the cox-2 inhibitors. Before I got the buprenorphine patch I was downing codeine as that was the only thing that would keep the pain at bay without too many side effects.
 
P

pb4

Joint pain is one of the many extraintestinal manifestations from having an IBD (CD or UC), NSAIDs are hard on IBDers as it promotes bleeding in the bowels and that's why we're told to avoid it (with the exception of special circumstances under your GI's approval) what about trying Humira or Remicade, they are designed for arthritis and are used as cross-over meds for IBD as well, so if your insurance doesn't cover it for your IBD then they may cover it for your arthritis.

:)
 
pewpewlasers

pewpewlasers

twob said:
The vitamin C energy boost packets with MSM is good for joint pain. Powder you mix with water, tea whatever and works pretty quick. Be sure to get the one with MSM. Many people with Crohsn do not produce enough MSM and this helps. Dr. told my son to take one everyday.
Click to expand...
I don't know what it was but I had one of those Emergen-C packets, some Acai flavor and a few minutes later it gave me horrible poops.
 
R

raclob

Boy, this thread hits home with me. Supposedly Crohn's and pain go hand in hand. I recently went to a rheumatologist to be tested for RA. Still waiting for the bloodwork to come back, & they've also scheduled an ultrasound on my hand. My rheumatologist said that even if it isn't RA, many Crohn's patients have something called "reactive" arthritis. With our autoimmune systems screwed up in the first place, some degree of joint pain & arthritis is probably to be expected.

My issues are compounded by the fact that I had a very messed up back before I was diagnosed with Crohn's. I've got 8 - yes, count them, 8 - herniated disks in my back & neck. So I have probably been on just about every pain medication that can be prescribed. Someone mentioned Neurontin...that's a pretty good medication in my opinion. I'm on 400mg three times a day. I also take 200mg of Celebrex daily. And percocet when needed.
 
teeny5

teeny5

I get joint pain mostly in my hips and knees. My GI said never to take anything but Tylenol. Never tried the one for arthritis though.
 
T

Tan

Can totally relate I have extreme back pain and joint pain in my knees, ankles & sometimes my elbows. Joys of having Crohns, I try not to take anything until I get to the point were Im in too much pain to be able to concentrate on anything else but the pain! Im hoping once my flare is under control that it will subside a bit but have read that is not always the case. Good luck.
 
B

beth

Having just looked up "Tylenol Arthritis" it just looks like a controlled release acetaminephrin formulation. IME I'd go for tylenol and codeine as it seems to do a much better job. YMMV.
 
mwb3779

mwb3779

Kitchenhawk
I have been having a lot of hip and knee pain recently. I was told the same thing to only take Tylenol also. Joint pain is certainly not fun. The more I walk and "stretch it out" it helps. Usually not more than 10 mins at a time. After that, it gets very tight and painful. I was having shoulder pains, but I used an icy hot patch for a couple days and that helped.
 
R

RANDYSINGH

Hey buddy i have the same problem in the morning as soon as i role out of bed every step is aganizing my ankles my achilles tendons and the worst part is turning the door nob to opent the bedroom door and than walking down the stairs usually as the day goes on the pain goes away but returns close to bed time and again in the morning i dont know what the heck is going on
 
C

chunky

i find these flare ups usually last 2 to 3 weeks but since i started taking arnica tablets they only last 2 to 3 days a big difference! i dont know if this will help anyone else but its certainly helped me and the fact that i dont have any side affects is brilliant good luck
 
M

Mozart

Back in April after almost a year on Remicade, I developed what I would call roving joint pain. One day it would be in my knee, next day my wrist, next day my finger and on and on. I felt like I was a constant complainer. I finally went to the dr. she prescribed sulfasalazine it took a few weeks but the it really helped the pain.
 
Bob Rose

Bob Rose

I just joined this group and it's very painful to see what so many are going thru. I nearly died twice from crohns and it's taken 20 years but I'm drug free and my symptoms are so much better. Diet, stress reduction, careful during high allergen times outside did it. You'll never get better permanently using drugs to repress immune system reaction, it will just come back worse.
 
zazasnana

zazasnana

Location
Kansas USA
I had fistula plug surgery a week ago. 3 days ago i woke up and every joint in my body hurt. I could hardly get out of bed. I thought it had something to do with the surgery, but after reading these comments it sounds like this is yet another problem with crohns. Im recently diagnosed and learning more and more. Sounds like this journey in life isnt going to be much fun. But i will deal, i know it could be so much worse.
 
L

lola99

I had joint pain when i was at my worst. It could have been the prednisone too. I don't have joint pain anymore since my symptoms have toned down. I would never recommend taking nsaids ever. Thats what landed me in the hospital and gave me an ulcer too. I was given nsaids after my 2nd son's birth and i ended up going to the er and getting diagnosed with crohns. Since nsaids make crohns worse.
 
tek254

tek254

I was having joint pain, usually in conjunction with a flare. Referred to rheumatologist who diagnosed with AS (Ankylosing Spondylitis) which is more common to those with IBD than those without. Now instead of dealing with one problem( several) I know how the luxury of dealing with two diseases. Talk to your GI or primary care physician. Turns out I have had this for approx 15 years. I chalked it up to rigors of work(firefighter/medic).
 
nogutsnoglory

nogutsnoglory

Moderator
My joints hurt too and I find I can't walk as fast as I used to. Climbing stairs really hurts.

I started eating chicken cartlige to help. They say the collagen is helpful for supporting the joints.
 
L

lola99

nogutsnoglory said:
My joints hurt too and I find I can't walk as fast as I used to. Climbing stairs really hurts.

I started eating chicken cartlige to help. They say the collagen is helpful for supporting the joints.
Click to expand...
Aloe vera juice is another thing you can try that is supposed to help with crohns and joint problems.
 
C

CorvusCorax

Location
North Vancouver, BC Canada
robbo87 said:
Hi guys, just wondering if anyone has any experience with joint pain? at the moment my knee's and feet are in absolutle agony and especially in a mornin i can barely walk at all. it can ease off a bit during the day but at the moment its terrible and really getting me down, could it possibly be arthiritis or something else?

also any tips on how i can ease it?
Regards
Martin
Click to expand...
A non-medicinal remedy I find works great for me is to soak twice a day in EPSOM SALTS - they work wonders for sore muscles and joints and hydration helps also with sore muscles and joints as that is one of the signs of dehydration.
 
R

Rachdonn7

Two years or so ago, 2 years into being diagnosed with crohns, i had a horrible pinch in my right hip. I as literally crying and couldnt stand or walk. Had mom tske me to the er. They said tey had no idea what it was from.. Maybe some sort of sciatica or back problem. Two years later, and a few more hopeless er visits, my gastroenterologist did a ct scan for a trial i was doing and diagnosed me with sacroilitis.. Veryyyy common with crohns disease. Inflamation cause the joints and bones in your ack and hps to basically squeeze things gether, they get stand ause this horrible pan. It gets so bad, when im having a flare up especially, that i cant even walk. Awful! But my doctor put me on lortbs when need them and suggedted cortizone shots.very nervous about that. But i ache allllll the time. Woke up feeling like a bus hit me.. Shoulders, lower back, knees, hips killing me. Sort of elieviates during the day, as i get busy and active, and now the pinch has come back. I have an awful time sleeping because of it all. And another thing. My feet killlll me, even when i havent been on them much at all during the day.

You're not alone. Arthritis and sacroilitis are very commo with rohn.
 
E

ellie

Location
Sydney Australia
I'm another joint pain "Chronie" - I used to take slow release NSAIDs daily for years before being diagnosed with CD. My GI has said I can try them again, but my colon is fairly quiet at present, so I'm reluctant to revisit them.
Main problem is sacroileitis that wakes me up if I'm silly enough to lie on my side
I take one paracetamol plus a paracetamol/codeine at bedtime, and 10mg amitriptyline to enhance the analgesics, and apply topical Voltaren gel 1-3 time a day to SI region, plus costochondral joints which also grumble now and then.
The SI joints tend to wake me up at 5am, but I apply some more Voltaren gel and often manage to doze off again.
Nor "perfect", and not a cure, but seems to manage the problem reasonably, keeps me functioning, and doesn't generate too many side effects!


HD
 
A

Adr321

I too am having extreme joint pain. I was told by my digestive specialist to take turmeric for joint pain and inflammation. I am going to give it a go and I will let you all know how it works for me.

Alicia
 
J

JKLT

RANDYSINGH said:
Hey buddy i have the same problem in the morning as soon as i role out of bed every step is aganizing my ankles my achilles tendons and the worst part is turning the door nob to opent the bedroom door and than walking down the stairs usually as the day goes on the pain goes away but returns close to bed time and again in the morning i dont know what the heck is going on
Click to expand...
You should probably get tested for ankylosing spondylitis (AS). That is one of the many symptoms of it. But in the meantime, one thing that really helps is to go to Academy or any sports store and purchase some athletic tape and tape your feet (an X across the bottom is the easiest way). Go on You Tube and watch videos of taping for plantar fasciitis. This may also be what you have but I learned it is also a symptom of AS.
(By the way, all of this, is really relevent if you have crohn's. It is related to the crohn's. They say those with crohn's are most suseptable to getting joint issues.)
About the taping: Even though you have pain in the achilles tendons, you would be surprised how taping an X across the bottom of your feet will relieve this. That is what worked for me. I was like you, I could hardly walk in the mornings and had the same cycle of pain you described in your post. I went through this for a few weeks and then I learned this little remedy. I did this taping for about 3 days and it cleared up. I hoped this helps you or someone else whose going through this pain. I know how miserable it can be. Good luck!!
 
D

djp69

My first post so here goes.

I was diagnosed with either Crohn's or Ulcerative Colitis around 3-5 years ago. I don't think the pathology report could categorically say which one.

My bowel movements since then don't seem too abnormal.

About 9 months ago I started to get pain in both my big toes. I didn't think anything of it & it went away.

Around 4 months ago I started to get tingling in my hands, some cracking in my neck & back, now also getting the big toe pain again & pain in my knees. Also have bad pain in the back of my right hand, playing tennis is making it worse.

I pretty much had to diagnose myself as doctor was useless.

I asked him to do blood tests for RA, the Rheumatoid factor came back as borderline. All else they tested was negative.

I didn't realise there were other medical problems associated with crohn's, the specialist never advised me about other issues.

I now have a Rheumatologist appointment in 5 weeks ( the wait is driving me nuts ).

Is the rheumatologist best equiped to deal with the arthritis & crohn's together OR should I also be going back to Gastroenterology specialist as well.
 
M

MrsGuts

Hello everyone this is my first post. I am 35 yrs old diagnosed with Crohn's back in Aug 2012. To date it has been pretty crazy trying to get the treatment. I started Imuran about 4 months ago. Over the past few months I have been experiencing extreme lower back pain. It would come and go over the past 10 days I have had it 24 hrs per day. I went to the Dr and was put on celebrex but this aggravates Crohn's as well. Does anyone know of a natural remedy?
 
A

araceli

Hi everybody. What you may have is called Enteropathic Arthritis. RA usually comes negative. Just my opinion. go to a rheumatologist. Hope you all feel good.
 
A

araceli

MrsGuts said:
Hello everyone this is my first post. I am 35 yrs old diagnosed with Crohn's back in Aug 2012. To date it has been pretty crazy trying to get the treatment. I started Imuran about 4 months ago. Over the past few months I have been experiencing extreme lower back pain. It would come and go over the past 10 days I have had it 24 hrs per day. I went to the Dr and was put on celebrex but this aggravates Crohn's as well. Does anyone know of a natural remedy?
Click to expand...
Tumeric with black pepper. is very good to reduce inflammation but you have to make sure it does not interact with your meds. Also try the hot and cold packs.
 
A

araceli

djp69 said:
My first post so here goes.

I was diagnosed with either Crohn's or Ulcerative Colitis around 3-5 years ago. I don't think the pathology report could categorically say which one.

My bowel movements since then don't seem too abnormal.

About 9 months ago I started to get pain in both my big toes. I didn't think anything of it & it went away.

Around 4 months ago I started to get tingling in my hands, some cracking in my neck & back, now also getting the big toe pain again & pain in my knees. Also have bad pain in the back of my right hand, playing tennis is making it worse.

I pretty much had to diagnose myself as doctor was useless.

I asked him to do blood tests for RA, the Rheumatoid factor came back as borderline. All else they tested was negative.

I didn't realise there were other medical problems associated with crohn's, the specialist never advised me about other issues.

I now have a Rheumatologist appointment in 5 weeks ( the wait is driving me nuts ).

Is the rheumatologist best equiped to deal with the arthritis & crohn's together OR should I also be going back to Gastroenterology specialist as well.
Click to expand...
With crohn's you may develop arthritis, enterophatic arthritis, ankylosing spondalitis. Or may be just plain joint pain due to inflammation or due to your meds. Sorry I know its to much on top of everything else.
 
T

tmclaren

Arthralgias are a result of cytokine release such as IL-1, which also acts as Osteoclast Activating Factor. If you get lab results during a flare, look at your Alkaline Phosphatase and see if its slightly elevated. If you have no underlying liver pathology, it explains the lab finding due to high bone turnover due to the IL-1 secretion.
 
suzette

suzette

Location
Eastbourne,
Hi 💐 I can't do any ibuprofen type meds. I even tried the creams on the joint area but it still upset 'my tubes' ( crohns - ' my tubes ' is what I mainly call it.- feels less real some days not to give it the power of its own name lol ) I've had it over 20 years. Some times in remission 😃yippee !!! some times hitting me with a sledge hammer. 😔 It's only in the last 2 years that I've been able to find a pain killers that work for me. Tramadol & cocodamol. Down side is I won't drive or make important decisions on them. As I feel a bit spaced/relaxed. So some days i struggle through the day (hiding the pain - as crohns suffers tend to do) until I can stop & take pain relief . Guess its my way of not giving in !!! I hope you find one that helps you🌹
 
J

James of LinHood

Location
Minneapolis, MN
Leading up to my Crohn's diagnosis, I suffered from extreme back pain as well as joint pain in my knees and feet. Climbing stairs and getting in out of my car/chairs/bed was pure torture.

My doctor originally loaded me up on Codine but that had zero impact. Pain relief patches were not much more help.

It was only after I was diagnosed with Crohn's and my doctor put me on Prednisone that my joint pain faded away. Perhaps it was just a coincidence. Either way, that was seven years ago and the joint pain has never returned.

On a side note, I just want to say what a relief it is to finally know that the joint pain was indeed linked to my Crohn's and that I wasn't alone in that. Over the years I've always wondered about it since the doctors I've asked have always had the attitude of "Well, it certainly could be linked" rather than, "Yep, it definitely is linked."

Although, I suppose I shouldn't be too happy about that as I suppose the joint pain could come roaring back anytime. But, here's hoping it doesn't.
 
Su-bee

Su-bee

I rely on pillow placements for sleep. Either almost propped to a point of sitting up, or on my side with a pillow between my knees, a pillow under my waist (that doesn't touch the bed while laying on my side), and one of those special pillows that gives support under my neck. And this is the best I've felt in 2 years! No meds seemed to help entirely (tried humira, amitriptyline, trammadol), only some that took an edge off enough to get 6 hours of sleep a night.

I also thought I was having back problems, but after doing research found arthritis goes with crohn's. I always had joint problems even as a child, and now wonder if it was early signs of inflammation and a precursor to my crohn's diagnosis.
 
D

djp69

James of LinHood said:
Leading up to my Crohn's diagnosis, I suffered from extreme back pain as well as joint pain in my knees and feet. Climbing stairs and getting in out of my car/chairs/bed was pure torture.

My doctor originally loaded me up on Codine but that had zero impact. Pain relief patches were not much more help.

It was only after I was diagnosed with Crohn's and my doctor put me on Prednisone that my joint pain faded away. Perhaps it was just a coincidence. Either way, that was seven years ago and the joint pain has never returned.

On a side note, I just want to say what a relief it is to finally know that the joint pain was indeed linked to my Crohn's and that I wasn't alone in that. Over the years I've always wondered about it since the doctors I've asked have always had the attitude of "Well, it certainly could be linked" rather than, "Yep, it definitely is linked."

Although, I suppose I shouldn't be too happy about that as I suppose the joint pain could come roaring back anytime. But, here's hoping it doesn't.
Click to expand...
I have just finished my 2nd Rheumatologist app, the results of my x-ray & gene test for possible ankylosing spondylitis (AS) were negative. Does this definitely exclude I have AS?

The doctor still thinks I have Psoriatic Arthritis & has prescribed Prednisone.

Hopefully I get same result & joint pain disappears.

My main issues are still big toe pain, knee pain, jaw pain, chest pain, skin issue on scalp.

I think I have TMJ & my jaw/face seems to be tilted slightly. No one else would notice so I'm not too worried about this.
 
Jim Gonsler

Jim Gonsler

I have joint pain and was told by a physician that it was due to the unusually high amount of uric acid in my blood. This is supposed to be absorbed into the kidneys and out of the body, but not always. Uric acid crystals are like little pieces of glass that rub up against the joints causing inflammation, whether it be in the knees, elbows, wrists, fingers, anywhere. Reduce the Uric acid and you begin to get rid of the joint pain. I'd like to know if my Crohn's has anything to do with this. Most of my ailments I've found are in someway Crohn's related.
 
J

josephd

Location
pennsylvania
I am currently undiagnosed. waiting to see the gastroenterologist on Monday. I have severe joint and muscle pain. my rheumatologist started me on sulfasalazine a few weeks ago without any noticeable improvements as of yet. nor has it taken away a any of the severe right upper quadrant pain that I was told was do to intestinal erosions. however I belong to our local ymca and luckily they have two heated pools a hot tube sauna and steam room. I have found that doing easy stretching and other exercises in the heated pool. and a little bit of time in the hot tube helps with the muscle pains as well.
 
kimar

kimar

I finally have found a group that is suffering from arthritis. Mine migrates. At least twice, it was so bad that I couldn't even move in the bed in the morning, much less get up and out. Fortunately, my GI doc and Rheumatologist are in the same building and keep in touch. They upped my Remicade, which helped until I had a reaction to my last infusion. We'll try another biological that treats both (I also have UC). I think the sulfasalazine I'm on helps as much as anything. It made me extremely fatigued but am building it back up. Tylenol arthritis helps, but at times it doesn't even take the edge off. It's just so hard to feel bad because it is really hard to break free and start to get back to "normal." Du courage!
 
Jim Gonsler

Jim Gonsler

Hi,
My brother was on Remicade, he has Crohn's too. He's off it now. While he said it helped, it had to be administered interveniously and over a period of hours and was very expensive. Remicade has it's share of side effects too. I'd ask if there are any healthier alternatives or find a doctor that would consider more holistic treatment alternatives. I take Asacol when I have a flare-up, but my doctor doesn't encourage I use it at any other time. Drugs have side effects I've learned that can be damaging to other organs and cause osteporosis, depleting natural calcium from the bones and joints and actually causing inflammation and pain. Just a thought,
Jim
 
Traumanurse

Traumanurse

Location
Colorado
Arnica salve is and baths are about the only thing that helped my knees and it didn't affect the Crohns. I keep it around for the roving joint pain.
 
RunningDownIBD

RunningDownIBD

I have it in my heel, too. It's a bear to deal with, quite painful. I've had lots of significant pain in both my hands and my right hip and knee along with the painful enthesitis in my left heel. I take great care to rotate it in a circle and stretch it real good before I try to get up and stand on it...that seems to help. I wish him the best with his!
 
Chally2

Chally2

Hi, after reading all these posts I'm glad to see I'm not alone. I'm having severe roving joint pain and on a lot of different pain killers. 100mcg Fentanyl patch, 300 mg Pregabalin twice daily and OxyContin when required. I also do a really heavy job and the thought of facing it each day along with the pain is making me really depressed. How are you all coping?
 
Jim Gonsler

Jim Gonsler

You might try taking a pine bark extract called Pycnogenol. I saw a video on Fox News about it. Fox Sunday morning house calls by Isadore Rosenfeld. It has really helped me. It's a very powerful antioxidant 20 times more powerful than vitamin c. I'ts available in different forms, but I take it in powder form. It's marketed as Isotonix. What's good is it dissolves in water which means it is absorbed right into the stomach lining and goes right into the blood stream in just a few minutes. Due to a past surgery I'm missing a lot of my small bowel, ileum and intestines so quick absorption is important. I take two cap fulls a day for bad knee pain I was suffering. For the past 3 years I've been pain free. It's good too, because you can skip some days and the effect still lasts. Call me if you want more information, or e-mail me. jwgonso10@gmail.com
 
S

SoOoO CoNfuSeD

Hey, when my crohn's was at it's worst i definitely had arthritic pain in my hands and forearms...it sucked! That was prior to my taking any medications whatsoever... Thankfully it went away when i was put on prednisone. I have since been on imuran and remicade and have rarely felt the same symptoms since. Very rarely during a RARE flare-up, i feel the same pain, but doesn't last long. I agree that it goes hand in hand with crohn's. P.s. One of the first things my doc advised me to avoid was ibuprofen. To add to her advice, i recently read a book on crohn's that also advised against it. Hope you find treatment for both your gut and your joints. Good luck
 
Careyearl

Careyearl

I too suffer from joint pain which moves around but mainly in my hip joints. I'm getting acupuncture and it is helping with the joint pain. May be something to try.
 
Chally2

Chally2

Is anyone haveing skin problems when their joints flare? Generally a few days before I get a bad flare up the warning is skin starts to peel off my feet really badly, then my hands, this time it's moved up my right leg. I think there is an element of stress related to this was wondering if anyone else had the same symptoms?


- now Free
 
J

Jison0612

Joint pain and sleeping

So I'm gonna try the Tylenol arthritis Forsure but what can I do about sleep? It seems like my shoulder neck and back pain keep me up at night what can I take otc at night to aid in sleep and joint pains
 
Sparkle2012

Sparkle2012

raclob said:
Boy, this thread hits home with me. Supposedly Crohn's and pain go hand in hand. I recently went to a rheumatologist to be tested for RA. Still waiting for the bloodwork to come back, & they've also scheduled an ultrasound on my hand. My rheumatologist said that even if it isn't RA, many Crohn's patients have something called "reactive" arthritis. With our autoimmune systems screwed up in the first place, some degree of joint pain & arthritis is probably to be expected.

My issues are compounded by the fact that I had a very messed up back before I was diagnosed with Crohn's. I've got 8 - yes, count them, 8 - herniated disks in my back & neck. So I have probably been on just about every pain medication that can be prescribed. Someone mentioned Neurontin...that's a pretty good medication in my opinion. I'm on 400mg three times a day. I also take 200mg of Celebrex daily. And percocet when needed.
Click to expand...
HI! I had bowel block surgery a year ago and DX with Crohns although no symptoms now. However, I woke up one day after a series of Entacort for 3 months and hurt all over like a bad flu. The joint pain has never gone away and it is mostly in my hands and ankles. I'm being tested by a rheum and he's xraying my hands. Everyone wants to put me on Humira and seriously, I'm weighing out the disfigurement from the RA vs the side effects. I am trying to find more people who have been on Humira long term but the group is just a bunch of people either asking about it or complaining about the pain of the shots. I want to know is it SAFE....and I'd love to hear if anyone is taking it. The doctor said an alternative for joint is sulfa something drug but he likes humira better. These doctors don't seem to have concerns about it. Why? Have you been taking it for your joints?
 
Chally2

Chally2

Hi
I have had Crohns for 16 years and been on Humira for the last 3 years. I also have severe joint pain associated with my Crohns. It's not Rheumatoid Arthritis the doc calls it Crohns Arthritis as I get no swelling and it can appear in any joint on different days. The Humira is for the Crohns and seems to keep it under control but has no effect on the arthritis or the skin that peels from my hands and feet when I have a flare up, I don't have any side effects from it either and the pain from the injection is nothing more than a mild sting that lasts seconds. I hope that this reassures you about the injections a bit.


Sent from my iPad using Tapatalk
 
Careyearl

Careyearl

Hi sparkle2012:

I have been on humira for 5 months now. I had joint pain up until mid October. It was in the hips, wrists and ankles but did move around. It took quite a while for the Humira to work, had to have Mtx and a round of prednisone but I think the flare is under control. I don't seem to have had any side effects from the Humira, more from the Mtx and victoza. So no more joint pain. I'm back at the gym so life is getting back in order. I also had acupuncture so I think that helped with the joint pain as well. I find taking any meds scary but we have to out weight the risks vs the benefits and have a really positive attitude. I now feel good about being on Humira. I feel I have gotten my life back.
 
Sparkle2012

Sparkle2012

Thanks guys - appreciate the positive reports. I don't even like to take headache medicine so it's a big leap for me to wrap my head around Humira. I wish you both the best of luck.
 
Sparkle2012

Sparkle2012

Adr321 said:
I too am having extreme joint pain. I was told by my digestive specialist to take turmeric for joint pain and inflammation. I am going to give it a go and I will let you all know how it works for me.

Alicia
Click to expand...
I am taking tumeric (circumin) - it helps me. I notice it when I do not take it.
 
Sparkle2012

Sparkle2012

Jison0612 said:
So I'm gonna try the Tylenol arthritis Forsure but what can I do about sleep? It seems like my shoulder neck and back pain keep me up at night what can I take otc at night to aid in sleep and joint pains
Click to expand...
Can't hurt to try Curcumin (Turmeric). It helps my joints and others.
 
Sparkle2012

Sparkle2012

I don't know if it is related but I have been struggling with chronic asthma for several months. Could this be a Crohn's enhanced issue? Before all this, it was only mild and occasional during the fall months. Could it be part of the autoimmune attack? My Crohns symptoms are gone but the arthritis and asthma have ramped up.
 
rrhood1

rrhood1

Location
Alberta, Canada
I'm the same as Mozart. Had horrendous joint pain & stiffness all the time. Rheumatologist put me on Sulfasalazine. NO pain now for the first time in 5 years!!!
 
Sparkle2012

Sparkle2012

That is the drug my rheum offered instead of Humira. Do you know if we develop immunity for that drug as they do with Humira? so happy you are feeling better. :)
 
rrhood1

rrhood1

Location
Alberta, Canada
I couldn't take Humira because it caused so much joint pain so my GI put me on Remicade and Methotrexate. My gut has been good with these but the joint pain lingered. So my rheumatologist put me on the Sulfasalazine. I don't know if you can develop an immunity to it but right now, I'm just enjoying the freedom from the joint pain. I'm hoping not - I'd like this to work forever.
 
Ratty

Ratty

Location
Wigan, UK.
I've had joint pain, mainly lower limbs which I was told was enteropathic arthritis directly linked to cd. My right knee became so swollen, I was admitted to hospital to have my knee drained and then had this followed up by a cortisone injection. I was prescribed naproxen but they gave me a gastric ulcer.

I get knee flare ups every now and then but I find that using ibuprofen gel topically and sparingly does the trick. Could be worth a try?? Failing that, comfrey oil works quite well but it's greasy and can smell quite bad depending on where you get it from.
 
Sparkle2012

Sparkle2012

RATTY: The Rheumy thinks mine is enteropathic as well. My right knee is in a continual state of swell. Did you get relief from the cortisone injection? I don't believe I've seen ibuprophen gel here in the states. Sounds like you guys are a little ahead of us medically in some ways. I also heard that UK gives a pre-pillcam that dissolves to see if the actual pillcam will be able to get through without blockages. They aren't doing that here - at least not with my last 3 GIs.
 
Sparkle2012

Sparkle2012

Jison0612 said:
So I'm gonna try the Tylenol arthritis Forsure but what can I do about sleep? It seems like my shoulder neck and back pain keep me up at night what can I take otc at night to aid in sleep and joint pains
Click to expand...
I'm no doctor but I've been taking Curcumin and it helps me a lot. When I don't take it, I feel worse. It has anti-inflammatory properties. It's derived from a spice so can't hurt to try and see. It's a little pricey but was worth it for me. I feel better joint-wise when I take it.
 
Ratty

Ratty

Location
Wigan, UK.
Sparkle2012 said:
RATTY: The Rheumy thinks mine is enteropathic as well. My right knee is in a continual state of swell. Did you get relief from the cortisone injection? I don't believe I've seen ibuprophen gel here in the states. Sounds like you guys are a little ahead of us medically in some ways. I also heard that UK gives a pre-pillcam that dissolves to see if the actual pillcam will be able to get through without blockages. They aren't doing that here - at least not with my last 3 GIs.
Click to expand...
The cortisone injection worked brilliantly but I needed another a couple of years later. The ibuprofen gel is just from the pharmacy and isn't prescribed by a doctor but I don't think ibuprofen is a drug that is available in USA. Maybe a diclofenac based gel would work if you can take use bit. You still have to be careful with external use anti-inflammatories because either can still affect you.

In terms of the pillcam, I'm afraid I don't have enough experience to comment on that.
 
Sparkle2012

Sparkle2012

We can get ibuprohen pills only here I believe. Never heard of that other one. Nice to know about that injection, I think I'm going to request it. Good thing you don't have pillcam experience; mine was stuck for 6 weeks, caused me a horrible weekend out of town and they were threatening surgery. People who have that done should use the pre-pillcam and avoid a needless surgery.
thanks for sharing!

PS: My husband just looked over my computer and said "that guy looks like your brother!" And I had thought so too! haha We are Dixon/Dickson descendants from the UK -- Scottish/English border folk. Have any of those folks in your family history?
 
Ratty

Ratty

Location
Wigan, UK.
Sparkle2012 said:
We can get ibuprohen pills only here I believe. Never heard of that other one. Nice to know about that injection, I think I'm going to request it. Good thing you don't have pillcam experience; mine was stuck for 6 weeks, caused me a horrible weekend out of town and they were threatening surgery. People who have that done should use the pre-pillcam and avoid a needless surgery.
thanks for sharing!

PS: My husband just looked over my computer and said "that guy looks like your brother!" And I had thought so too! haha We are Dixon/Dickson descendants from the UK -- Scottish/English border folk. Have any of those folks in your family history?
Click to expand...
Hope the cortisone fixes you up. I'm from between Liverpool and Manchester, no relatives in that area.
 
P

Poppapiz

For the last 6 months I've have chronic neck and chest pain. All started after 8 classed of hard core cross fit work out. Cardiac work up neg, MRI she herniations in c levels and t levels. Pain management doc says not that bad of a herniations. Have had crohns for over 25 years, been thru it all. Colonoscopy last shows no active disease. Blood work other then high iron level is good. On remicade 6mp and Prilosec. Aniexty making things worse. Pain is aching and burning sensations. Going to see rhumo next week...thoughts?
 
Dackelmann

Dackelmann

U/C and joint pain. You bet. Arthritic joints in fingers and knees hurt when flaring. Also two busted collarbones get that bad I can hardly move. An icepack on my backside and heat pads on my shoulders. Balls of feet sometimes ache and also worn out joints in the elbows. Consolation prize- the busted nose has remained a constant but much better to breathe after having rhinoplasty. Can't grumble too much, my father had pretty bad polio.
 
bozzylozzy

bozzylozzy

Location
Sheffield, UK
Hi sparkle.. hopefully you can get some joint relief soon!
I dont have rheumatoid arthritis... but do have bad joint pain. I had steroid injection in my left knee and worked brilliantly!! And I have been on sulfasalazine ever since. The sulfasalazine works great.but I do know when I have missed a couple of doses and I get some breakthrough pain :(

Good luck!
 
Sparkle2012

Sparkle2012

Hi Bozzy - thanks so much for addressing the joint thing. My Crohns symptoms are gone but this joint thing...ugh. Today is really bad because of this cold wave that started today. My hands stay slightly swollen. I'm still in testing phase. One of my bad doctors mentioned "if he were treating me" would give me a steroid injection. I may pursue that for my right knee. When they determine if this is Crohns related arthritis or RA they will propose a medicine I'm sure. My Rheum has already mentioned the sulfasalazine. Do you know if there are scary side effects like Humira?
 
Sparkle2012

Sparkle2012

Dackelmann said:
U/C and joint pain. You bet. Arthritic joints in fingers and knees hurt when flaring. Also two busted collarbones get that bad I can hardly move. An icepack on my backside and heat pads on my shoulders. Balls of feet sometimes ache and also worn out joints in the elbows. Consolation prize- the busted nose has remained a constant but much better to breathe after having rhinoplasty. Can't grumble too much, my father had pretty bad polio.
Click to expand...
Mine in hands and knees also but today -- a cold snap --- it's in my back and neck. Happy happy joy joy. :lol2::yrolleyes:
 
T

they call it a come back

tmclaren said:
Arthralgias are a result of cytokine release such as IL-1, which also acts as Osteoclast Activating Factor. If you get lab results during a flare, look at your Alkaline Phosphatase and see if its slightly elevated. If you have no underlying liver pathology, it explains the lab finding due to high bone turnover due to the IL-1 secretion.
Click to expand...
Hi you sound very knowledgeable, I am in the middle of a long, long flare and my hips are hurting so bad it is hard to walk, I am going to t:stinks:he doctor both my gi and regular, what should I ask for test and med wise any advice
 
J

jwilgo

I was diagnosed with Crohn's 20 years ago, have had 4 resections and have been on
Humira for the past 2 years, keeping me in remission (or at least with fewer issues than prior to doing the injections) Suddenly this past Friday night I was struck very suddenly with flu like symptoms. I crawled into bed only to wake up in the morning with excruciating joint pain in my hands, feet and shoulders. As I am on Humira, which is a major drug for treating arthritis I am perplexed. I am seeing my gastroenterologist in the am and hope to get some answers and some immedate pain relief as the pain is simply horrible. WONDERING IF ANYONE ELSE ON HUMIRA HAS DEVELOPED SUDDEN JOINT PAIN ?
 
my little penguin

my little penguin

Moderator
Staff member
DS had mild joint /muscle pain prior to humira
Was considered arthralgia /myalgia at the time .
Same thing while on humira but got worse.
After a year on humira he was dx arthritis
So it is very possible
He needed Mtx added to the humira to take care of the arthritis
Recently he had to hold the humira/Mtx due to an infection.
Of course his arthritis flared first ( it's easier to "see" ) than the crohns side of things .
Get to a Rheumotologist
 
J

jwilgo

Thanks so much for the information, I have an appointment with a rheumatologist tomorrow...desperate for some relief!
 
A

Adr321

I experience the same thing. It is debilitating sometimes. I am a massage therapist and there are times where my hands ache for bad that I have a hard time working. My feet get really bad too. I ache all the time. I am unsure of what to do about this. Has anyone found relief with anything?
 
Tubes

Tubes

I've had crohn's since 94(it was misdiagnosed)and every visit to my GI she'd ask me if I had any joint pain and I never had any.Well in 2004 I had a total colectomy due to toxic megacolon and I had 3 surgeries and Finnally a J-pouch after the 3rd surgery I started getting knee pain it was manageable,but about 13 months later the J-pouch burst and I was back with an illeostomy and the knee pain got much worse,over the last 10 years it's spread to my ankles,toes,wrists and fingers as well it's pretty unbearable...Yay 1st post!!!
 
J

jwilgo

Am seeing a rheumatologist who has ordered tons of lab work, positive ANA, borderline for Lupus...still waitIng for other lab results. The doctor put me on a low dose of prednisone, 10 MG am and pm but it has not helped. She also prescribed Vicodin to help with the pain, but it really does not touch the pain much but at least it allows me to sleep at night. She is waiting on the last of the blood work and is leaning to rheumatoid arthritis, even though Humira is the go to drug for rheumatoid arthritis....so many 'catch 22's' with immune diseases! I am unable to work and have had to move my bedroom to the first floor of my house as navigating stairs Is too excrutiating. Today my right hand and forearm are so swollen I look like Popeye! Hoping everyone is able to hang in there and find answers and relief..... my best to you all!
 
S

samman

I had pain in my back first and that was my first clue of crohns. It is followed by a flare. The first time I just thought it was my back and took ibuprofen. Flare went away (did not know it was crohns then). Four years later I got the same thing this time I went to GI after Duodenum and Colon showed crohns. This time I had knee and ankle pain and stiffness I could not walk at all even with braces. My CRP and SED rate and the joint pain correlated and when the numbers went down with prednisone treatment my ankles, knee, and back all went to normal. For me it correlates to flares directly. You also know if you have one joint and not the other side hurting.
 
R

RNGirl

I have had horrible joint and muscle pain associated with my crohns. I was diagnosed with fructose malabsorption a few months ago. If I don't watch what I eat and limit my fructose intake, I have days of horrible joint/muscle pain. For me, it appears my extra intestinal issues are related to my inability to metabolize fructose and fructans. Made sense for me since I have terminal ileum crohns and that's where you would absorb the fructose. Everyone is different, but if you are really struggling, the cure for your joint pain could be right beneath your nose. It doesn't hurt to do a little research and cut out fructose and fructans for a few weeks and see if you get some relief.
 
DEmberton

DEmberton

Location
Stuttgart
RNGirl said:
I have had horrible joint and muscle pain associated with my crohns. I was diagnosed with fructose malabsorption a few months ago. If I don't watch what I eat and limit my fructose intake, I have days of horrible joint/muscle pain. For me, it appears my extra intestinal issues are related to my inability to metabolize fructose and fructans. Made sense for me since I have terminal ileum crohns and that's where you would absorb the fructose. Everyone is different, but if you are really struggling, the cure for your joint pain could be right beneath your nose. It doesn't hurt to do a little research and cut out fructose and fructans for a few weeks and see if you get some relief.
Click to expand...
Are you saying you should eat more fructose or less?
 
DEmberton

DEmberton

Location
Stuttgart
The join pain has crept up on me. I think I've probably had issues for years, but it's been much more consistent the last 6 months or so. I'm finding I mostly have stiffness all over, but not that much pain - does that still count as spondylitis? (I thought that was specifically to do with the back).

More worryingly my hands and lower legs sometimes feel numb, but not actually numb (i.e. no loss of feeling); it's just a vague sensation. The numbness seems to come after the pain, i.e. if I rest then the pain returns; if I use my hands or walk then it can feel numb again.
 
You must log in or register to reply here.
Top