Maybe we can still be on this forum and say,"Remember when?"
Joint pain, what will make it stop?
- Thread starter dahlfacepoet
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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!!!
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!!!
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:doi/10.1371/journal.pone.0039841
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:doi/10.1371/journal.pone.0039841
David
Co-Founder
Here are the nutrients found in cumin seed. Your extract probably has substantially more than is listed here: http://www.whfoods.com/genpage.php?tname=foodspice&dbid=91
Spooky1
Well-known member
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.
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.
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- Apr 15, 2012
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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.
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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- Apr 15, 2012
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- 14,792
http://www.spondylitis.org/about/as.aspx
For anklyosing spondylitis
For
http://www.spondylitis.org/about/
For anklyosing spondylitis
For
http://www.spondylitis.org/about/
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/article/pii/S1567576905001578
"Immunomodulatory and therapeutic properties of the Nigella sativa L. seed"
International Immunopharmacology
Volume 5, Issues 13–14, December 2005, Pages 1749–1770
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.
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- Jul 23, 2014
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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!
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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.
