Hi all,
I'd like to know how many of you experience joint and muscle pain - not just the usual aches/pains of age - but pain that causes you to move differently and generally wears you down. The kind that you deal with during the work week because you have to, and end up spending your whole weekend recovering from due to the exhaustion of constantly hurting.
I'd also like to know how many of you have been diagnosed - before or after the MC - with an autoimmune disease such as lupus (SLE), Crohn's, or Rheumatoid Arthritis (RA).
I appreciate your comments!
How many here experience joint and muscle pain w/MC?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How many here experience joint and muscle pain w/MC?
Just diagnosed with LC, waiting to get in to see GI for treatment and SO tired of feeling sick, crampy, and tired.
MC definitely impacted my energy levels. I'm much better than I was a couple of years ago, but I have to make sure I get to bed early as often as possible and try not to overdo. I had/have muscle issues involving restless leg syndrome and other weird muscle twitches and spasms in different parts of my body which can be worse after exercise or a hard day. Before the MC diagnosis, I had seen 2 neurologists trying to figure out what was going on, and they couldn't find anything. I developed thyroid issues along with MC and I believe my muscle problems are something called BFS (benign fasiculation syndrome) which I think is just part of my "fun" personal
package of autoimmune issues.
JoAnn
package of autoimmune issues.
JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Valerie,
Before I changed my diet, I had severe joint aches and pains, muscle aches, headaches, migraines, a stiff, sore neck, and lower back pains. I felt as though I had the flu, except that it kept relapsing, over and over again. Some days my knees were so bad that I had to use a cane to walk. The arthritis in my hands caused several fingers to grow crooked and twisted. The joints in those fingers were swollen, inflamed, and extremely painful. Some days I had temporomandibular joint disorder, (TMJ), that was so bad that I could barely open my mouth wide enough to eat soup with a teaspoon. That was 10 or 11 years ago and all that slowly went away, after I adopted the diet, and my gut began to heal.
I had the symptoms that would have qualified for a diagnosis of RA, CFS, TMJ, and probably one or two other AI diseases, but I never pursued a diagnosis, and after I was able to get my MC symptoms under control, all the other issues resolved on their own.
Not everyone with MC has these additional symptoms - only those who have the leaky gut syndrome in combination with their MC. Believe it or not, some people have MC, (and severe, watery D, many times each day), with virtually no pain. There is a wide range of symptoms and severity of symptoms, with this disease. Some have neurological issues, due to their gluten-sensitivity, while others do not.
Tex
Before I changed my diet, I had severe joint aches and pains, muscle aches, headaches, migraines, a stiff, sore neck, and lower back pains. I felt as though I had the flu, except that it kept relapsing, over and over again. Some days my knees were so bad that I had to use a cane to walk. The arthritis in my hands caused several fingers to grow crooked and twisted. The joints in those fingers were swollen, inflamed, and extremely painful. Some days I had temporomandibular joint disorder, (TMJ), that was so bad that I could barely open my mouth wide enough to eat soup with a teaspoon. That was 10 or 11 years ago and all that slowly went away, after I adopted the diet, and my gut began to heal.
I had the symptoms that would have qualified for a diagnosis of RA, CFS, TMJ, and probably one or two other AI diseases, but I never pursued a diagnosis, and after I was able to get my MC symptoms under control, all the other issues resolved on their own.
Not everyone with MC has these additional symptoms - only those who have the leaky gut syndrome in combination with their MC. Believe it or not, some people have MC, (and severe, watery D, many times each day), with virtually no pain. There is a wide range of symptoms and severity of symptoms, with this disease. Some have neurological issues, due to their gluten-sensitivity, while others do not.
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 have been diagnosed with fibromyalgia, so I definitely have the aches and pains. As Tex said, it feels like I have the flu when I'm having a flare. I just started the gluten free diet a couple of weeks ago, so I'm hoping that is going to help my fibromyalgia. I can say that I ate at a Japanese restaurant not too long ago and asked that no soy or sauces be added to my food. The chef, who was cooking at our table, had no clue and kept wiping the spatula in the same wet towel. He was basically wiping the soy sauce with soy sauce. I woke up the next morning with terrible D and felt like I had the flu. I think I wound up sleeping around 20 hours that day. I felt so fatigued. I'm pretty sure it was from the gluten in the soy sauce.
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
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MBombardier
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- Location: Vancouver, WA
JoAnn!! I looked up benign fasciculation syndrome on Wikipedia to see if that was why the bottom of my feet have been hurting for no reason, and there is an animated image of what my left eyelid has been doing fairly consistently for about a month! I knew that it was worse when I was feeling more stressed, but I didn't know that it could indicate a magnesium deficiency. I have been feeling guilty about not being consistent taking my magnesium. Now I have a reason! Thanks! 
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
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MaggieRedwings
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Dear Valerie,
Not official autoimmune diseases.....but, Vertigo, stiff neck and tinnitus were my main other symptoms before chronic D set in and Dx MC. After, chronic D started I also developed stiffness in my fingers (i.e. the beginnings of RA).
Best, ant
Not official autoimmune diseases.....but, Vertigo, stiff neck and tinnitus were my main other symptoms before chronic D set in and Dx MC. After, chronic D started I also developed stiffness in my fingers (i.e. the beginnings of RA).
Best, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
My symptoms were more like Ant's - though I also had on-and-off knee pain, back pain, etc. that was probably gearing up to worsen.
I've seen in the celiac forums that it's very common, and often resolved completely (and sometimes fast!) by correcting the diet. So that's good news, even though our timing and path to recover seems to be very individual.
A lot of other autoimmune diseases seem to go hand-in-hand (there is a poll here about this - the polls are interesting, if you haven't browsed them yet). I think some resolve more readily than others, probably depending which body system is affected, and how long we've been sick before diagnosis. And maybe age - most of us don't bounce quite the way kids do ;)
--Sara
I've seen in the celiac forums that it's very common, and often resolved completely (and sometimes fast!) by correcting the diet. So that's good news, even though our timing and path to recover seems to be very individual.
A lot of other autoimmune diseases seem to go hand-in-hand (there is a poll here about this - the polls are interesting, if you haven't browsed them yet). I think some resolve more readily than others, probably depending which body system is affected, and how long we've been sick before diagnosis. And maybe age - most of us don't bounce quite the way kids do ;)
--Sara
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Joefnh
- Rockhopper Penguin
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RunIBD I have both CC and Crohns and have been dealing with significant joint and muscle pain with fatigue for about 10 years now. I would say the the onset of the pain and fatigue was the initial onset of the MC and Crohns and unexplained D was a occasional problem.
I certainly notice now that when the CC and Crohns is flaring that the aches and pains also flare up. I have been so thankful for the Imuran I am taking as that has made all the difference in the world for the D, joint pains and fatigue. It's great to get my life back.
I should say though that even with the Imuran I still need to be quite careful about eating a SF GF DF diet as that will cause symptoms as well even with the meds.
Joe
I certainly notice now that when the CC and Crohns is flaring that the aches and pains also flare up. I have been so thankful for the Imuran I am taking as that has made all the difference in the world for the D, joint pains and fatigue. It's great to get my life back.
I should say though that even with the Imuran I still need to be quite careful about eating a SF GF DF diet as that will cause symptoms as well even with the meds.
Joe
Joe
Marliss, I have the same "feet" thing you mentioned-almost like restless foot syndrome, if there is such a thing. The eyelid twitches drive me crazy sometimes. I've supplemented with everything they recommend, but they never completely go away-just take time off. I'm sure it's connected with the thyroid/mc issues. JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Marliss and Joann,
I've always had involuntary twitches in my eyelids, nose (if I raise one nostril ever-so-slightly, it twitches like crazy), arm muscles sometimes. It was worse as a kid. Here's an interesting post suggesting it may be due to pesticide use, and using antioxidant herbs to help. Of course they are trying to sell cheap herbs as a cure, so buyer beware.
http://www.medicinal-herbs-and-spices.c ... drome.html
RunIBD,
I never had overwhelming fatigue or joint pain before or after my LC diagnosis. And I have several autommune antibodies for RA, Lupus, etc. I did have lower back pain and chronic pain in my hip flexors that just wouldn't quit. After I started the GF/DF diet, those pains completely disappeared. I also had considerable more energy after starting the diet. So maybe I was fatigued, but never realized what normal was. I am one of the people with painless, usually infrequent D, but virtually no other symptoms so long as I maintain the GF/DF/mostly SF diet.
I've always had involuntary twitches in my eyelids, nose (if I raise one nostril ever-so-slightly, it twitches like crazy), arm muscles sometimes. It was worse as a kid. Here's an interesting post suggesting it may be due to pesticide use, and using antioxidant herbs to help. Of course they are trying to sell cheap herbs as a cure, so buyer beware.
http://www.medicinal-herbs-and-spices.c ... drome.html
RunIBD,
I never had overwhelming fatigue or joint pain before or after my LC diagnosis. And I have several autommune antibodies for RA, Lupus, etc. I did have lower back pain and chronic pain in my hip flexors that just wouldn't quit. After I started the GF/DF diet, those pains completely disappeared. I also had considerable more energy after starting the diet. So maybe I was fatigued, but never realized what normal was. I am one of the people with painless, usually infrequent D, but virtually no other symptoms so long as I maintain the GF/DF/mostly SF diet.
Marliss, JoAnn, Zizzle,
I also had the symptoms that you describe, (occasional pain/burning sensation on the sole of one or both feet, occasional random points of sharp pain on top of a foot, twitches of or near an eyelid - sometimes adjacent to an eye on my temple). I'm convinced that those symptoms are associated with peripheral neuropathy due to gluten-sensitivity. Some of those symptoms resolved after I adopted the diet, (such as the twitches, and painful/burning soles), but in the case of my feet/lower legs, the result was a permanent loss of virtually all of my sense of touch, and a loss of reflexes. I have regained reflexive response, after taking Metanx, (a megadose combination of B-6 B-9, and B-12), for a year, and I can now faintly feel a pin prick anywhere on my feet or lower legs, but so far, that's the limit of my improvement. A pin prick doesn't really hurt - I can just feel that something is going on there.
Similar to a diabetic with peripheral neuropathy, I can accidentally incur a toe injury, and never feel it, so I have to keep an eye out for infections that I can't feel, lest it result in requiring an amputation.
Somewhere along the line, before I adopted the diet, I lost my ability to sense hunger pangs. So obviously I have damage to either my enteric nervous system, or my central nervous system, or both. I also never have a headache, anymore. Never. If I bump my head, I can feel a slight superficial pain, (on the surface), but not a true headache, (internal). While I was reacting, headaches and migraines were a regular problem. Sometimes I wonder if I may have simply lost my ability to feel a headache, due to a disconnect in my central nervous system. :shrug.
Along with this, I have developed balance issues which have also improved slightly after taking Metanx on a regular basis, but they are still serious enough that I have to be very careful about losing my balance. I also have gait issues, (according to the Neurologist who incorrectly diagnosed me with Parkinson's disease, and who didn't believe in gluten-induced peripheral neuropathy), but since then, I've convinced another neurologist that I do not have Parkinson's. She also had never heard of gluten-induced peripheral neuropathy, and therefore denied it's existence, but even though she agreed that I do not have Parkinson's disease, she couldn't explain the reason for my symptoms.
Tex
I also had the symptoms that you describe, (occasional pain/burning sensation on the sole of one or both feet, occasional random points of sharp pain on top of a foot, twitches of or near an eyelid - sometimes adjacent to an eye on my temple). I'm convinced that those symptoms are associated with peripheral neuropathy due to gluten-sensitivity. Some of those symptoms resolved after I adopted the diet, (such as the twitches, and painful/burning soles), but in the case of my feet/lower legs, the result was a permanent loss of virtually all of my sense of touch, and a loss of reflexes. I have regained reflexive response, after taking Metanx, (a megadose combination of B-6 B-9, and B-12), for a year, and I can now faintly feel a pin prick anywhere on my feet or lower legs, but so far, that's the limit of my improvement. A pin prick doesn't really hurt - I can just feel that something is going on there.
Similar to a diabetic with peripheral neuropathy, I can accidentally incur a toe injury, and never feel it, so I have to keep an eye out for infections that I can't feel, lest it result in requiring an amputation.Somewhere along the line, before I adopted the diet, I lost my ability to sense hunger pangs. So obviously I have damage to either my enteric nervous system, or my central nervous system, or both. I also never have a headache, anymore. Never. If I bump my head, I can feel a slight superficial pain, (on the surface), but not a true headache, (internal). While I was reacting, headaches and migraines were a regular problem. Sometimes I wonder if I may have simply lost my ability to feel a headache, due to a disconnect in my central nervous system. :shrug.
Along with this, I have developed balance issues which have also improved slightly after taking Metanx on a regular basis, but they are still serious enough that I have to be very careful about losing my balance. I also have gait issues, (according to the Neurologist who incorrectly diagnosed me with Parkinson's disease, and who didn't believe in gluten-induced peripheral neuropathy), but since then, I've convinced another neurologist that I do not have Parkinson's. She also had never heard of gluten-induced peripheral neuropathy, and therefore denied it's existence, but even though she agreed that I do not have Parkinson's disease, she couldn't explain the reason for my symptoms.
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.
Thank you all very much for your input. The reason I ask, as you might have guessed, is that I have pain and fatigue to the point it has really begun to interfere with life - as if the D isn't enough! I have a (pardon the pun) "gut" feeling that there is more going on with me than just the LC, but want to rule out that possibility if this kind of pain and fatigue is a relatively common symptom.
My first GI appoint is tomorrow, so I hope to discuss all of this with the Dr. Are GI docs open to discussion regarding other diagnoses such as lupus, celiac, crohns? Or have you found they prefer you work with your GP?
What a Godsend you all are!!
Valerie
My first GI appoint is tomorrow, so I hope to discuss all of this with the Dr. Are GI docs open to discussion regarding other diagnoses such as lupus, celiac, crohns? Or have you found they prefer you work with your GP?
What a Godsend you all are!!
Valerie
Just diagnosed with LC, waiting to get in to see GI for treatment and SO tired of feeling sick, crampy, and tired.
Dear Valerie
I hope you can have a more open discussion.
Best wishes, ant
My GI paid no attention to my vertigo/balance history when I told him, and he dismissed my Osteoporosis dx (which I ordered privately after some fractures to my ribs) as "quite common in men my age" (56). He would only believe I was celiac if he did another procedure post a gluten challenge. No way was I going back on gluten to prove that.Are GI docs open to discussion regarding other diagnoses such as lupus, celiac, crohns?
I hope you can have a more open discussion.
Best wishes, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Tex, I also believe that my weird twitches and spasms are due to gluten damage. I haven't had the loss of sensation to pain that you've had, but I do experience weird sensations in my feet and legs that I can only describe as restless leg/feet syndrome. I also have the twitches in all parts of my body (at different times, thank goodness!)
Zizzle, I can sometimes rub my eye or just move it in a certain way and it will set off a twitch. They usually don't last too long now, but in the past I would sometimes have twitches last for weeks. I believe as time passes and going gf along with eliminating my other sensitivities, things have improved. A little over a year ago, my husband was telling a chiropractic friend of his about my weird stuff and he suggested I come in for an evaluation since chiropractic adjustments deal with nerve signals. I had a couple of months of intensive visits, and then went to monthly maintenance adjustments. I really believe it has helped my symptoms including restless leg and maybe it's contributed to my mc healing. Who knows? I just know I've done better since seeing him and with my insurance the costs are very reasonable. I think he's an exceptional practitioner as I have other friends who have not had much success with chiropractors for other issues.
Marliss, I take magnesium shots because the magnesium supplements give me D. I know I've healed a lot in the last year so I guess I should try the supplements again and see what happens. I also take a prescription potassium supplement that's supposed to help with things. Let me know if the magnesium helps your problems.
JoAnn
Zizzle, I can sometimes rub my eye or just move it in a certain way and it will set off a twitch. They usually don't last too long now, but in the past I would sometimes have twitches last for weeks. I believe as time passes and going gf along with eliminating my other sensitivities, things have improved. A little over a year ago, my husband was telling a chiropractic friend of his about my weird stuff and he suggested I come in for an evaluation since chiropractic adjustments deal with nerve signals. I had a couple of months of intensive visits, and then went to monthly maintenance adjustments. I really believe it has helped my symptoms including restless leg and maybe it's contributed to my mc healing. Who knows? I just know I've done better since seeing him and with my insurance the costs are very reasonable. I think he's an exceptional practitioner as I have other friends who have not had much success with chiropractors for other issues.
Marliss, I take magnesium shots because the magnesium supplements give me D. I know I've healed a lot in the last year so I guess I should try the supplements again and see what happens. I also take a prescription potassium supplement that's supposed to help with things. Let me know if the magnesium helps your problems.
JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne