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


 
06-12-2012, 05:25 AM   #91
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Hi #2 - I've never heard of DMSO and will ask my doctor about it. Thanks. To update on what's happened recently. I've seen the rheumatologist who has put me on Methotrexate, starting tomorrow. It sounds, from the info., like a horrible drug with awful side effects but let's not be negative, if it helps with the pain, which is much worse, I'll try anything. The gastroenterologist has said it would be ok to take it as its often prescribed for Crohn's anyway. I didn't find out about the position of the obstruction or the narrowing. I did try to find out but she talks so fast that it was overlooked with everything else she was saying. It appears, although they failed to tell me, that I now have gallstones and she wants me to have an ultrasound to find out how many, and then to have my gall bladder removed. Thinks this may have been the cause of the blockage and the nausea. The saga continues!!
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06-15-2012, 08:08 PM   #92
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Cavatina, Your Doc most likely will not know of DMSO. If you do an internet search for DMSO it will come right up. I was skeptical, but I gave it several days and it worked.
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06-15-2012, 09:27 PM   #93
David
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Cavatina,

We have a wiki entry on DMSO and at the bottom of it you will find threads on the forum where it has been discussed. Some of it is quite interesting.
06-17-2012, 07:34 AM   #94
skippy111
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The thing with the DMSO that bothers me is that it treats the pain but doesn't treat the underlying cause.. like throwing water on the fire...

Pain is the body's way of telling you something is wrong. If you are treating the pain without addressing the root cause of the pain, all you are doing is allowing whatever the problem is to get worse and worse even tho you may be pain free ..

The big question I think is What is causing MY joint pain? the source of mine could be different from someone else's ...

What works for one person may not always work for another so where it comes to drug interactions, do not rely on verbal advice however well meaning it may be unless it is from a pharmacist, or a liscensed health care practitioner..

This post is a bit long because I have a theory on joint pain.. in order to treat it we need to identify the source.

I think the one thing we can agree on is that it is a muscular skeletal pain..

Usually for me, when my right knee starts aching I know that means my chron's is flareing and time to call my GI.. Usually he would put me on Prednisone because we pretty much know that there is inflamation somewhere. He would schedule a Colonoscopy to find out what is going on.

That was how it was back in the early 90's when I was first diagnosed with chrons.

with this latest eppisode, I was started with 60 mg of prednizone right in the er based on my history, and the fact that it had been nearly 15 years since my last colonoscopy.

So from this, we can speculate that the root cause of my joint pain would be the lack of nutrients neccecary for strong bones due to malabsorption caused by inflamation ...

Between the pain meds, the Prednizone, the Cypro/Flagyl combo etc... I was in no pain. The prednizone was preventing inflamation and the cypro and flagyl were attacking the bacteria... then the zofran was preventing Nausea.

the pain meds are great, but they are meant to provide relief from pain.. the pain meds do not treat the underlying cause... Dont get me wrong, when it was time, the nurse brought my meds in and I took em... I was not about to lay there and suffer needlessly..

Now that I am down to 50 mg of prednizone, My legs get stiff if I am on my feet too long and my knees ache. My Colon is disconected from my intestines to give them a chance to heal with the prednizone...

for my joints to be hurting at 50 mg of prednizone that would tell me that my inflamation was really bad...

In addition to watching to make sure I am getting the right nutrients and taking my prednizone, I take my pain meds for relief of the pain..

As far as my colon goes, the surgeon thinks it may need to come out but we won't know untill they are able to do the colonoscopy. The hope is that between now and Aug/Sept, the prednizone will have cleared the inflamation in my intestines and by some miracle if the colon is ok then I wont need to have it taken out... I am keeping the bag tho, simply because I feel that a reconnection would only put me back to where I was before my flare up... and i will need to have a colonoscopy every year or so..

Prednizone is one of those medications that while they do what they are supposed to do, you don't want to be on it for too long because it can cause problems.

The pain meds are great, but prolonged use of them is not safe for me because of the Psych meds I take,

my own experience would lead me to speculate that joint pain occurs when there is a deficency of the vitamins and minerals needed for strong healthy joints.. in other words, something is preventing proper absorption of those nutrients... Inflamation is one of many causes possible, sometimes medications will react with each other and cause problems... also, even taking vitamins together that should not be taken together can cause a reaction..

It is important that you use only one pharmacy if possible and in addition to your prescriptions, let the pharmacist know about any over the counter products you take.

most pharmacies now have a system where when you turn in your perscriptions, if there is a danger of an interaction an alert will come up.

There are things we can do to reduce the risk of interactions. Awareness is one of the most effective measures we as patients can do. So being aware that drug interactions do exist and that Nutrients, Vitamins, along with food and vitamins must be included in the equation.

Second, always read the product labels carefully on both your prescription drugs and any over the counter products you buy. Learn about any warnings that may apply. The warnings are available in the drug packaging and also on the internet.


there are programs online where you can enter in your medications and vitamins to check for any possible interactions..
Prescription for nutritional healing by Phyllys A, Balch, CNC

the link provided in the book did not work but if you type Drug interactions database you will get many sites,

this one works
http://www.drugs.com/drug_interactions.html

no need to register, just click the I agree button on the page to test it out.

just to test it out, I just checked remicade and 286 possible interactions popped up!

the classifications of interactions are either Major,Moderate or minor

right away two major interactions pop up even before you click the show all medications link..

Prednisone is one of them, and Methotrexate...

Flagyl came up under Moderate,

if you scroll down the list of major interactions, some of the common over teh counter meds show up too,
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Check to see if any of the meds you are taking can intereact with another, just go to the Drug interaction section, it is free! http://www.drugs.com/

Crohn's /Anemia DX in 1991
Aspbergers/Depression/ADHD DX 2001

Past meds for crohn's
Prednisone/Azulfadine

Recent Meds While in Hosp for Crohn's/Depression
Flagyl/Cypro,Zofran Protonix, Prednisone, Lovenox
Celexa,Kolonopin, Ritalin
Current meds:
Prednisone,Celexa,Adderall,Kolonopin,Percocet
06-17-2012, 07:37 AM   #95
skippy111
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Cavatina,

We have a wiki entry on DMSO and at the bottom of it you will find threads on the forum where it has been discussed. Some of it is quite interesting.
When I type in DMSO in the interaction checker, DMSC casanthranol/docusate comes up, and that interacts with my celexa, not sure if the DMSO is marketed under another name or not but I DID find the DMSO article very interesting;
06-19-2012, 08:31 AM   #96
skippy111
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Yesterday I was talking to one of my neighbors and he told me that he was trying that Joint Juice stuff, that Joe Montana is advertising..

He told me that it seems to work pretty good... he gets the 4 packs in the supermarket for like $6, I am going to give it a try and report back...

this is the link to what Im talking about in case anyone else has tried it.

http://jointjuice.com/
06-14-2013, 12:24 PM   #97
723crossroads
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The thing with the DMSO that bothers me is that it treats the pain but doesn't treat the underlying cause.. like throwing water on the fire...

Pain is the body's way of telling you something is wrong. If you are treating the pain without addressing the root cause of the pain, all you are doing is allowing whatever the problem is to get worse and worse even tho you may be pain free ..

The big question I think is What is causing MY joint pain? the source of mine could be different from someone else's ...

What works for one person may not always work for another so where it comes to drug interactions, do not rely on verbal advice however well meaning it may be unless it is from a pharmacist, or a liscensed health care practitioner..

This post is a bit long because I have a theory on joint pain.. in order to treat it we need to identify the source.

I think the one thing we can agree on is that it is a muscular skeletal pain..

Usually for me, when my right knee starts aching I know that means my Crohn's is flareing and time to call my GI.. Usually he would put me on Prednisone because we pretty much know that there is inflamation somewhere. He would schedule a Colonoscopy to find out what is going on.

That was how it was back in the early 90's when I was first diagnosed with Crohn's.

with this latest eppisode, I was started with 60 mg of prednizone right in the er based on my history, and the fact that it had been nearly 15 years since my last colonoscopy.

So from this, we can speculate that the root cause of my joint pain would be the lack of nutrients neccecary for strong bones due to malabsorption caused by inflamation ...

Between the pain meds, the Prednizone, the Cypro/Flagyl combo etc... I was in no pain. The prednizone was preventing inflamation and the cypro and flagyl were attacking the bacteria... then the zofran was preventing Nausea.

the pain meds are great, but they are meant to provide relief from pain.. the pain meds do not treat the underlying cause... Dont get me wrong, when it was time, the nurse brought my meds in and I took em... I was not about to lay there and suffer needlessly..

Now that I am down to 50 mg of prednizone, My legs get stiff if I am on my feet too long and my knees ache. My Colon is disconected from my intestines to give them a chance to heal with the prednizone...

for my joints to be hurting at 50 mg of prednizone that would tell me that my inflamation was really bad...

In addition to watching to make sure I am getting the right nutrients and taking my prednizone, I take my pain meds for relief of the pain..

As far as my colon goes, the surgeon thinks it may need to come out but we won't know untill they are able to do the colonoscopy. The hope is that between now and Aug/Sept, the prednizone will have cleared the inflamation in my intestines and by some miracle if the colon is ok then I wont need to have it taken out... I am keeping the bag tho, simply because I feel that a reconnection would only put me back to where I was before my flare up... and i will need to have a colonoscopy every year or so..

Prednizone is one of those medications that while they do what they are supposed to do, you don't want to be on it for too long because it can cause problems.

The pain meds are great, but prolonged use of them is not safe for me because of the Psych meds I take,

my own experience would lead me to speculate that joint pain occurs when there is a deficency of the vitamins and minerals needed for strong healthy joints.. in other words, something is preventing proper absorption of those nutrients... Inflamation is one of many causes possible, sometimes medications will react with each other and cause problems... also, even taking vitamins together that should not be taken together can cause a reaction..

It is important that you use only one pharmacy if possible and in addition to your prescriptions, let the pharmacist know about any over the counter products you take.

most pharmacies now have a system where when you turn in your perscriptions, if there is a danger of an interaction an alert will come up.



Prescription for nutritional healing by Phyllys A, Balch, CNC

the link provided in the book did not work but if you type Drug interactions database you will get many sites,

this one works
http://www.drugs.com/drug_interactions.html

no need to register, just click the I agree button on the page to test it out.

just to test it out, I just checked remicade and 286 possible interactions popped up!

the classifications of interactions are either Major,Moderate or minor

right away two major interactions pop up even before you click the show all medications link..

Prednisone is one of them, and Methotrexate...

Flagyl came up under Moderate,

if you scroll down the list of major interactions, some of the common over teh counter meds show up too,
If your problem is arthritis, there isn't mcuh you can do about it anyway once the damage is done. May as well use whatever works to treat the pain.
06-15-2013, 03:01 AM   #98
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My doc looked at my joints and said 'there is nothing we can do for arthritis' he offered stronger painkillers. the joints are still excruciating.
06-17-2013, 01:11 PM   #99
723crossroads
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Sorry spooky1, I know how you feel. I can get away with going till about 5pm on tylenol some days, then I can't take it anymore and have to resort to my oxycodone. Otherwise ,I sit and don't do anything the rest of the day,.pain is too much!I am afraid of what it will be like in ten yrs!!!
06-17-2013, 01:28 PM   #100
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yes, I do despair at what is to come. its almost best not to think about what is to come really. just cope with the day we are in
06-17-2013, 03:08 PM   #101
723crossroads
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Maybe we can still be on this forum and say,"Remember when?"
08-05-2014, 01:42 AM   #102
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Try eliminating sugars / Doing so saved my joints

I'm in my 30's and I've had moderate / sever ocerative colitis for 9 years and about 2 or 3 years after my first symptoms I started experiencing severe joint pain that would migrate from joint to joint (knees, knuckles, shoulders, toes, ankles, inner hip/groin, as well as in my back and chest muscles. The pain would last severely in one joint/area for a 1-4 days often being debilitating (sleepless nights, extreme pain, inability to use joint) then would travel to another joint usually then travel to the other or go dormant for a time then flair up again.

After almost giving up on trying to fix the problem I saw a pattern (a few days after gorging on Halloween candy) that the flairs were directly associated with my consumption of processed sugars. It was amazing after cutting candy, soda, and high fructose corn syrup and other processed sugars out of my diet for about a month the joint pain stopped completely.

I found can eat natural sugars no problem such as in fruit and juice and have no problem. Once again the pain literally stopped after about a month and hasn't returned for now years.

However, if I stray and start to each too much processed sugars I can feel it creeping in once in full force for a time after straying from my strict no sugar rule). Those little reminders and one large reminder have allowed me to stay "bad" sugar free and pain free. Before when I had the pain I used high and low doses of prednizone but even prednizone didn't completely help me. It wasn't until I stopped the sugar and stayed off it that I found relief. Also, I've been able to stay predizone free as well). Although my colitis is still an issue (mostly managed by Asocal / Asathiaprine) the joint pain is past.

I hope this helps and I highly recommend you try this as it saved me so much pain. On a related note I also try to stay away from too much fake sugars (diet drinks, etc) as I have found that these have caused me some trouble although not nearly as much as processed sugars.

Good luck!!!
09-11-2014, 12:57 PM   #103
mnsun
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After a couple years of taking many supplements, specifically to remedy my worsening SI joint, I've finally narrowed it down to a few factors: 5,000 iu D3 daily, 1-2 grams Black Cumin Seed, and 8 hours of sleep daily. The Black Cumin seed oil was the missing link for me which I discovered a few months ago.

I'm not sure how to classify the type of reoccuring sacroiliac joint pain I get, but I have found something that works for me if I take it daily, in the morning, on an empty stomach (I have had digestive issues when taken with foods and when taken within 3 hours of LDN). If you do research on Black Cumin Seed oil and IBD, or BCS oil's scientific botanical name which isn't actually related to cumin spice at all, you will find that this stuff works locally on the gut's opiate/endorphin system--kinda sorta related to LDN's rebound effect. However, this means you do not want to mix LDN and BCS oil or you will feel nausea. However, while taking BCS oil, I now can have coffee like its water and I no longer am dependent on quality probiotics for solid BMs--this is a significant indicator for me since I've depended on them for 7+ years.

It is a 500 mg black cumin seed extract, called Thymocid, which I take in a supplement by Life Extension called Black Cumin Seed Oil. I previously tried their product with curcumin mixed in, but the single supplement works just as well. I haven't tried any other brands, but this can be found reasonably priced, around $15 per month if taking 2 a day, online at some mega-warehouse websites.

I did not test positive for HLA-B27 and my SI joint pain occurs independent of any digestive flairs, but is directly related to not enough sleep and D3. I only get joint pain in the sacroiliac joint, nowhere else. My useless doctor suggested I start taking Pentasa (or maybe Asascol) daily for this axial joint pain--in my opinion, Pentasa is an expensive placebo, which may have limited efficacy for those with colitis symptoms and maybe peripheral joint pain, foisted onto crohn's patients with generally mild cases.

If I take 2 capsules of Life Extension Black Cumin Seed Oil daily, I don't get my si joint pain. I've been upping my dose occasionally (to 1.5 or 2 grams) if I go days without reaching my 8 hour per night sleep goal and start feeling joint issues arise--I am a hopeless procrastinator when it comes to getting to sleep at a decent time.

Do a scholar.google.com search for "The Joint-Gut Axis in Inflammatory Bowel Diseases" and maybe do another for Black Cumin Seed and inflammation or ibd to see why this might work. I still haven't parsed through that first article...

Please let me/others know if you try this. It might take a couple weeks for the oil to work, maybe not. I didn't take it daily until I gradually noticed the days I didn't take it, due to aforementioned effects. This is actually very worth trying in my personal experience.

Nigella sativa (Black Cumin) Seed Extract Alleviates Symptoms of Allergic Diarrhea in Mice, Involving Opioid Receptors Swantje C. Duncker, David Philippe, Christine Martin-Paschoud, Mireille Moser, Annick Mercenier, Sophie NuttenResearch Article | published 29 Jun 2012 | PLOS ONE 10.1371/journal.pone.0039841
http://www.plosone.org/article/info%...l.pone.0039841
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09-11-2014, 02:53 PM   #104
David
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Here are the nutrients found in cumin seed. Your extract probably has substantially more than is listed here: http://www.whfoods.com/genpage.php?t...dspice&dbid=91
09-11-2014, 04:35 PM   #105
Spooky1
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Does this help with any other joint issues? My ankles, knees, hips, elbows wrists, and hands are painful. My feet are a disaster. I am having to suffer agonies when on them. I simply cannot bear any shoes or socks at the moment. the pain is too much.
I haven't heard of this before but I'm willing to try as now the arthritis pain in my neck is just starting up and causing me major issues both day and night. 8 Hours sleep seems a huge amount. I'm afraid I'm off to the loo plenty at night too.
Can black cumin seed be bought off ebay or amazon? I really am pro giving these more natural remedies a go. I seem to have failed entirely on big pharma stuff.
09-11-2014, 05:12 PM   #106
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If you are having joint pain - you should try to see a rheumatologist since joints and muscles are their thing . Joint pain can happen during a Gi flare or independant of Gi activity.
SpA is common in those that have Ibd. It can involve the lower large joints as well as the SI.
SpA can progress to AS so it is very important to stay on top of joint pain with a Rheumotologist who can work with the Gi to reduce the joint aspect of things.

Article on SpA and AS



DS uses parafin wax baths for his joints as well as meds it makes a world of difference.
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09-11-2014, 05:43 PM   #107
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09-14-2014, 03:36 PM   #108
mnsun
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Here are the nutrients found in cumin seed. Your extract probably has substantially more than is listed here: http://www.whfoods.com/genpage.php?t...dspice&dbid=91
Actually, that article David posted relates to cumin seed (Cuminum cyminum), as in the spice which is NOT related to the Black Cumin Seed (Nigella Sativa) I'm referring to. As always, do research whether this may or may not interact with other drugs/supplements you are taking, LDN particularly.

http://www.sciencedirect.com/science...67576905001578
"Immunomodulatory and therapeutic properties of the Nigella sativa L. seed"
International Immunopharmacology
Volume 5, Issues 1314, December 2005, Pages 17491770

Thymoquinone seems to be the most studied component of Nigella Sativa for its effects on ulcers, liver damage, antimicrobial effects, immunomodulating, cardiovascular, pain blocking, and antioxidant effects... If you type into scholar.google.com thymoquinone and any of the above medicinal effects, you will get many results.
10-03-2014, 02:29 PM   #109
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Here is a very helpful article on IBD and arthropathies!
http://www.medscape.com/viewarticle/750045
So I'm reading through the comments, see this from Sunflower & go to the medscape article. All very good. An interesting read and I'm thinking I've got some ammunition next time I see the Rheumatologist.

I get to the second page of the article and my finger joints start hurting like mad! This is just not fair. C'mon Crohn's, you gotta give me a break somewhere, even if it's just reading an article!
10-03-2014, 02:37 PM   #110
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After a couple years of taking many supplements, specifically to remedy my worsening SI joint, I've finally narrowed it down to a few factors: 5,000 iu D3 daily, 1-2 grams Black Cumin Seed, and 8 hours of sleep daily. The Black Cumin seed oil was the missing link for me which I discovered a few months ago.

I'm not sure how to classify the type of reoccuring sacroiliac joint pain I get, but I have found something that works for me if I take it daily, in the morning, on an empty stomach (I have had digestive issues when taken with foods and when taken within 3 hours of LDN). If you do research on Black Cumin Seed oil and IBD, or BCS oil's scientific botanical name which isn't actually related to cumin spice at all, you will find that this stuff works locally on the gut's opiate/endorphin system--kinda sorta related to LDN's rebound effect. However, this means you do not want to mix LDN and BCS oil or you will feel nausea. However, while taking BCS oil, I now can have coffee like its water and I no longer am dependent on quality probiotics for solid BMs--this is a significant indicator for me since I've depended on them for 7+ years.

It is a 500 mg black cumin seed extract, called Thymocid, which I take in a supplement by Life Extension called Black Cumin Seed Oil. I previously tried their product with curcumin mixed in, but the single supplement works just as well. I haven't tried any other brands, but this can be found reasonably priced, around $15 per month if taking 2 a day, online at some mega-warehouse websites.

I did not test positive for HLA-B27 and my SI joint pain occurs independent of any digestive flairs, but is directly related to not enough sleep and D3. I only get joint pain in the sacroiliac joint, nowhere else. My useless doctor suggested I start taking Pentasa (or maybe Asascol) daily for this axial joint pain--in my opinion, Pentasa is an expensive placebo, which may have limited efficacy for those with colitis symptoms and maybe peripheral joint pain, foisted onto crohn's patients with generally mild cases.

If I take 2 capsules of Life Extension Black Cumin Seed Oil daily, I don't get my si joint pain. I've been upping my dose occasionally (to 1.5 or 2 grams) if I go days without reaching my 8 hour per night sleep goal and start feeling joint issues arise--I am a hopeless procrastinator when it comes to getting to sleep at a decent time.

Do a scholar.google.com search for "The Joint-Gut Axis in Inflammatory Bowel Diseases" and maybe do another for Black Cumin Seed and inflammation or ibd to see why this might work. I still haven't parsed through that first article...

Please let me/others know if you try this. It might take a couple weeks for the oil to work, maybe not. I didn't take it daily until I gradually noticed the days I didn't take it, due to aforementioned effects. This is actually very worth trying in my personal experience.

Nigella sativa (Black Cumin) Seed Extract Alleviates Symptoms of Allergic Diarrhea in Mice, Involving Opioid Receptors Swantje C. Duncker, David Philippe, Christine Martin-Paschoud, Mireille Moser, Annick Mercenier, Sophie NuttenResearch Article | published 29 Jun 2012 | PLOS ONE 10.1371/journal.pone.0039841
http://www.plosone.org/article/info%...l.pone.0039841
Very interesting about the BCS. Definitely worth looking into. My main point is that I'm inclined to agree about the Pentasa. I've now had two Gastro Drs tell me it's 'of little or no value for patients with Crohn's'. From what they said it has (basically) no impact on the small intestine. They were both surprised to see I'd been prescribed it (by a Consultant) & had been on it for nearly 2 years. Coming off it has not affected my symptoms negatively in any way.
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