severe hip and leg pain
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severe hip and leg pain
This is my first post to this board. I was biopsy diagnosed with Celiac 17 years ago. Two years ago, I accidentally ingested gluten. Prior to that accident, my very few accidents seemed to heal up within 4 to 6 weeks. This last time after being really sick for over three months, I finally saw a GI doctor who was very knowledgeable regarding celiac. After an endoscopy, he said my villi were completely healed, but obviously there was something else wrong. A colonoscopy revealed collagenous/microscopic colitis. Not a great thing to hear - bad enough to deal with the celiac, but this was something completely new and difficult to deal with. The doctor recommended Endocort, but I wasn't able to afford it. After some research on line, I found Mayo Clinic's recommendation for 12 to 16 tablets of Pepto-Bismal per day. At a follow up visit with the doctor, he said that the Pepto was a good idea. He also recommended that I take an Align every day and L-Glutamine. The Pepto finally worked and I still take some Pepto every day for a while if I have an episode. My problem is this: when the doctor first told me what I had, he pushed in on my hips on the back and asked me if I was sore there. I winced and said you bet. He told me that aching low back and hips were a side effect of the colitis. I was troubled for a little while, but finally the aching subsided. Then last summer, the low back and hip pain started again - this time so bad I could barely walk. I went to a chiropractor for a few visits, but the treatments didn't help. I finally started taking Tylenol extra strength and go a little relief from that. All winter I had very little problem with my back. Then this summer, about a month ago, I started getting fierce pain in my left hip and all the way down my left leg. This has gone on for nealry two months and I am so miserable - I cannot sleep, can't sit for long, walking is very painful (but I force myself to do it). I'm back on Tylenol extra strength, but to get the relief I need, I'm taking way too many of them - they are harmful to the liver, according to the warnings. Does anyone else have this problem and are there any suggestions? I would appreciate any help. Also, I am thinking of going to a doctor, but I'm not sure what kind of doctor to go to for this problem. Help!! Karen
Hi Karen,
Welcome to our internet family. Have you eliminated any other foods from your diet? Most of us have other food sensitivities besides gluten, especially casein (the primary protein in all dairy products) and soy. Some have additional food sensitivities, but those are the most common.
Even though casein does not cause me to have GI symptoms, I produce antibodies to it (as verified by a stool test sent to EnteroLab in Dallas, TX), and a few months after I removed all dairy products from my diet, my lower back pain and other signs of osteoarthritis completely faded away.
Another possibility is that you might be getting trace amounts of gluten in your diet, because many/most commercial GF products contain trace amounts of gluten. Many non-gluten grains are contaminated with gluten that's undeclared on the label. I found out by experience that if there is any wheat flour in the house, keeping it out of your food 100 % is mission impossible. Every time someone opens a bag of flour, the stuff moves around on air currents and settles out virtually everywhere. And for many of us, even though those trace amounts are not enough to trigger a GI reaction (or villus damage), they are enough to cause osteoarthritis problems.
A third possibility is sciatic nerve issues. I had that problem last spring. I suspected my office chair (an executive type high-backed chair that didn't properly support my lower back), so I replaced it with a manager's-style chair, that offered much better back support (especially my lower back) and viola, my sciatic nerve problems faded away over a period of a few weeks.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Have you eliminated any other foods from your diet? Most of us have other food sensitivities besides gluten, especially casein (the primary protein in all dairy products) and soy. Some have additional food sensitivities, but those are the most common.
Even though casein does not cause me to have GI symptoms, I produce antibodies to it (as verified by a stool test sent to EnteroLab in Dallas, TX), and a few months after I removed all dairy products from my diet, my lower back pain and other signs of osteoarthritis completely faded away.
Another possibility is that you might be getting trace amounts of gluten in your diet, because many/most commercial GF products contain trace amounts of gluten. Many non-gluten grains are contaminated with gluten that's undeclared on the label. I found out by experience that if there is any wheat flour in the house, keeping it out of your food 100 % is mission impossible. Every time someone opens a bag of flour, the stuff moves around on air currents and settles out virtually everywhere. And for many of us, even though those trace amounts are not enough to trigger a GI reaction (or villus damage), they are enough to cause osteoarthritis problems.
A third possibility is sciatic nerve issues. I had that problem last spring. I suspected my office chair (an executive type high-backed chair that didn't properly support my lower back), so I replaced it with a manager's-style chair, that offered much better back support (especially my lower back) and viola, my sciatic nerve problems faded away over a period of a few weeks.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I think this is the only post from Kaci ever, so I can't ask her. But, I would love to learn more about the connection between hip pains and MC, so I searched on the internet and found that there is a connection between UC and hip pain (and arthritis in general). I conclude that when it occurs in UC, it will also occur in people with MC, as Kaci's doctor suggested.
3-4 years before I got sick, I had huge problems getting out of my car. My hip joint would "lock" in the groin, and I had to reposition the legs a few times before I could get out of the car. I still have this ridiculous problem.
Now that my digestive symptoms are almost gone, the Entocort probably out of my body (stopped mid June), I have this problem with both hips, and the piriformis muscle /sciatic pain in my butt, and consequently pain and cramps in my legs. I've been offered surgery for the piriformis muscle, but thought I could get rid of the pain if I had some acupuncture and did some exercise.
That has not happened, so I consider surgery. But... if the hip pain is a phenomenom connected to MC, maybe surgery will not help? Or, maybe the hip pain comes from Entocort and will disappear some time in the future?
This disease is so complex...
Lilia
3-4 years before I got sick, I had huge problems getting out of my car. My hip joint would "lock" in the groin, and I had to reposition the legs a few times before I could get out of the car. I still have this ridiculous problem.
Now that my digestive symptoms are almost gone, the Entocort probably out of my body (stopped mid June), I have this problem with both hips, and the piriformis muscle /sciatic pain in my butt, and consequently pain and cramps in my legs. I've been offered surgery for the piriformis muscle, but thought I could get rid of the pain if I had some acupuncture and did some exercise.
That has not happened, so I consider surgery. But... if the hip pain is a phenomenom connected to MC, maybe surgery will not help? Or, maybe the hip pain comes from Entocort and will disappear some time in the future?
This disease is so complex...
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilia,
My impression is that it's common to have arthritis symptoms while MC (or any other IBD) is active. Arthritis was a major problem for me back when I was still reacting, and for a few years afterward. However, if you are having lower back or hip pains when MC is not active, that suggests that you might have developed ankylosing spondylitis. Ankylosing spondylitis is definitely associated with IBDs, including MC. Joe has a diagnosis for AS, and so have a few other members here. And although I have never pursued a diagnosis, my lower back scans show fusing of the vertebrae, and lower back and sometimes hip pain was a major problem for me for many years, so I have little doubt that I have it. However, it no longer bothers me.
The pain associated with ankylosing spondylitis is usually most noticeable during periods of inactivity. Do you sometimes wake up in the middle of the night with a backache? I used to wake up during the night with a severe backache. Moving around a bit and changing positions would usually reduce the pain so that I could get back to sleep. Most of the time, I would wake up with a backache. I couldn't easily bend over to put on my socks, but after I was up for a while, the symptoms would usually fade away as I moved around. If I stopped moving for a while, the symptoms might return.
The site at the link below recommends sleeping on one's belly. I wasn't able to do that though, because of the bloating caused by MC. And of course I can't do it now, because of an ileostomy. But I no longer have the symptoms. Thinking back, I believe my symptoms stopped several years ago when I did a couple of EnteroLab tests and discovered that my diet was apparently cross-contaminated with trace amounts of gluten, and I was also producing antibodies to casein. After I tracked down the cross-contamination problem, and eliminated all dairy products from my diet, the back and hip pains slowly faded away, and so far at least, they have not returned. It would take a lot of convincing to persuade me to believe that surgery is a practical remedy for AS.
Ankylosing Spondylitis
Tex
My impression is that it's common to have arthritis symptoms while MC (or any other IBD) is active. Arthritis was a major problem for me back when I was still reacting, and for a few years afterward. However, if you are having lower back or hip pains when MC is not active, that suggests that you might have developed ankylosing spondylitis. Ankylosing spondylitis is definitely associated with IBDs, including MC. Joe has a diagnosis for AS, and so have a few other members here. And although I have never pursued a diagnosis, my lower back scans show fusing of the vertebrae, and lower back and sometimes hip pain was a major problem for me for many years, so I have little doubt that I have it. However, it no longer bothers me.
The pain associated with ankylosing spondylitis is usually most noticeable during periods of inactivity. Do you sometimes wake up in the middle of the night with a backache? I used to wake up during the night with a severe backache. Moving around a bit and changing positions would usually reduce the pain so that I could get back to sleep. Most of the time, I would wake up with a backache. I couldn't easily bend over to put on my socks, but after I was up for a while, the symptoms would usually fade away as I moved around. If I stopped moving for a while, the symptoms might return.
The site at the link below recommends sleeping on one's belly. I wasn't able to do that though, because of the bloating caused by MC. And of course I can't do it now, because of an ileostomy. But I no longer have the symptoms. Thinking back, I believe my symptoms stopped several years ago when I did a couple of EnteroLab tests and discovered that my diet was apparently cross-contaminated with trace amounts of gluten, and I was also producing antibodies to casein. After I tracked down the cross-contamination problem, and eliminated all dairy products from my diet, the back and hip pains slowly faded away, and so far at least, they have not returned. It would take a lot of convincing to persuade me to believe that surgery is a practical remedy for AS.
Ankylosing Spondylitis
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Wow, Tex!
I know that I might have cheated as to dairy products, but the link between hip/butt pains and the casein never occured to me. I will, of course, be more attentive as to ingredients, since I never eat real dairy products, like milk, ice creams etc.
I have always heard that sleeping on the belly is very unhealthy; due to neck and back problems, so I go to sleep on my right side and wake up on my back.
Yes, I used to wake up 1-2 times during night, but that was either the D or the urge to pee, or from mere thirst...
Now, I wake up 1-2 times during night with severe pains, but ankylosing spondylitis, really ....?
You know, doctors here in my country just laugh at us when we arrive with a self-found diagnose. I will have to study ankylosing spondylitis, and see if it fits.
Grateful as always, Tex!
Lilia
I know that I might have cheated as to dairy products, but the link between hip/butt pains and the casein never occured to me. I will, of course, be more attentive as to ingredients, since I never eat real dairy products, like milk, ice creams etc.
I have always heard that sleeping on the belly is very unhealthy; due to neck and back problems, so I go to sleep on my right side and wake up on my back.
Yes, I used to wake up 1-2 times during night, but that was either the D or the urge to pee, or from mere thirst...
Now, I wake up 1-2 times during night with severe pains, but ankylosing spondylitis, really ....?
You know, doctors here in my country just laugh at us when we arrive with a self-found diagnose. I will have to study ankylosing spondylitis, and see if it fits.
Grateful as always, Tex!
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
They do the same over here in this country. And then they immediately start looking for another reason for the symptoms.Lilia wrote:You know, doctors here in my country just laugh at us when we arrive with a self-found diagnose.
My current PCP is the only physician I have ever had who seems to be an exception to that rule.As always, you are most welcome.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Yes, it's the same all over the world. Good that we MC'ers are a robust specimen :-)
The first article I found about ankylosing spondylitis was a Norwegian paper that showed the prevalence of ankylosing spondylitis worldwide, and my part of the world (Northern Norway) has a prevalence of 15%, the rest of the world has 8% (incl the southern part of Norway), whilst Africa has 1%...
That must point to something about the importance of vitamin D. We live in the dark approx 3/4 of the year in the part of Norway where I was born and raised.
Thank you, Tex! I will study this further :-)
And I will find out if I have HLA-B27, which is the most known genetic risk factor.
A big hug from
Lilia
The first article I found about ankylosing spondylitis was a Norwegian paper that showed the prevalence of ankylosing spondylitis worldwide, and my part of the world (Northern Norway) has a prevalence of 15%, the rest of the world has 8% (incl the southern part of Norway), whilst Africa has 1%...
That must point to something about the importance of vitamin D. We live in the dark approx 3/4 of the year in the part of Norway where I was born and raised.
Thank you, Tex! I will study this further :-)
And I will find out if I have HLA-B27, which is the most known genetic risk factor.
A big hug from
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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Scooterbug
- Posts: 1
- Joined: Mon Jul 08, 2013 7:27 pm
Hello All ! I have been a member sine 2013, but never posted anything ... but this topic is very interesting to me, as I have had severe, intolerable, joint pain the last 3 wks & am pretty sure I am now having symptoms of Ankylosing Spondylitis.
My history; I've been a Nurse for 28+ yrs.
2007-2009 'mis-diagnosed' by GI as 'IBS'
2009 (finally) was diag w/MC-Collagenous Colitis (after persistence) a GI surgeon talked to me about my symptoms, Scoped me & biopied every 2 centimeters-(finally pathology confirmed multiple sites of active Microscopic Colitis, specif. Collagenous Colitis.
Since 2009, I have only had 3 times of remission, that lasted under 2 months each time....let me tell you, it's been miserable! 20 + times/day of hyper gut gas, pain & forceful, crampy, watery diarrhea.
I've seen every specialist around/near home & have even made 8 hr trips X4 to one of the top rated CC specialists in Charlottesville, VA .
Tried EVERY med available, every OTC & prescription diarrhea stopper available ( 14 as of last count) EVEN belladonna tabs.....none even slows my diarrhea !
The 3 times it did resolve;
#1 time with the antibiotic Xifaxan, (tried 2 more times & did not work)
#2 Prednisone my PCP gave to try
#3 By accident, was given a shot of Rocephin for a respiratory infec.
I've been taking Entocort 9mg daily ever since 2009, when diagnosed, unable to taper down or of. Ever time drop to 2 tabs, angry diarrhea starts up again, lots of gas & stomach bloating & pain. Was told probably have to stay on 9 mg the rest of my life, but last 6 months diarrhea 15-20 times a day while taking the Entocort.
Now, 3 wks ago - I woke with Lt knee swollen, painful (deep) & unable to bear wt on it. Went to Ortho, had fluid aspirated & injec. w/steroids ... it helped & lasted 1 wk THEN, woke middle night w/the pain/swelling returned & also in both shoulders, both hips & low back feeling the same! I would yell when tried to turn or set up, my husband had to assist. I couldn't even push my pillow under my head w/o screaming.
Went to primary & he said that up to 50% of patients with gut inflammation the inflammation can start attacking other areas of the body, specifically low back
(closer to gut region) & large joints, ie: hips, knees & shoulders.
I'm now back on Prednisone ( which has helped tremendously & instantly & scheduled to see a Rheumatologist, which he hopes can get ALL the inflammation resolved at the same time. May start receiving monthly IV meds like Embrel or Methotrexate.
My point is this; it makes perfect since that unresolved inflammation can/would attack other areas.
Please research Ankylosing Spondylitis @ Mayo here: http://www.mayoclinic.org/diseases-cond ... c-20261125
or John Hopkins site here : http://www.hopkinsmedicine.org/healthli ... 85,P00045/
Another great info site re: GI & joint pain/swelling relationships here:
http://www.healthline.com/health/ulcera ... #overview1
Stay healthy my friends
~Scooterbug~ :)
This thread very interesting since I also have back pain...have just thought it was scoliosis finally catching up with me....glad I checked in tonight...thanks all who posted....
Sunny
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair