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I feel like I have a story to tell about my health rather than simply a list of symptoms both because the symptoms have changed over time and because some of them come and go, but for the most part doctors are looking for a list of symptoms not a story of the evolution of a probably systemic health problem. I suspect that I have been slowly poisoning myself over the years. When I adopted a mostly Paleo diet about 10 years ago some things definitely got better (I no longer suffer from Gerd) but I still never felt well with intermittent D and C. I suspect that I probably should have given up dairy and eggs but that's just hindsight. I am sending off the entero kit today so I am hoping at least for some answers. I've been mostly gluten free for years. The extreme non-stop D I started experiencing about a month ago was the worst it had ever been. I could barely leave the house long enough to take the dog out. That luckily seems to have resolved with my extreme dietary measure (I'm still eating primarily ground beef patties) but I still have weird symptoms left. These are the ones doctors seem to pay no attention to.
Today I feel slightly shaky and dizzy. This tends to come and go for me. I have pretty much lost any sensation in my bladder (this developed over several years) and often this feeling of shakiness and dizziness means I need to empty it. Weird, but that's what happens. Today it is more persistent.. I once had symptoms that felt like IC (what I have read about it) but that bladder pain went away to be replaced by this weirdness. I also have an almost constant sense that I am having contractions like Braxton Hicks contractions. This becomes more severe when I lie down. This has been going on for a long time. I know it effects my rectal muscles but it also feels like my intestines are constantly contracting and relaxing and maybe my bladder. I also have a lot of pressure from my ribcage and on down. Sometimes my chest feels compressed. It's all so strange and hard to describe. My hope is that by finding out what food I am sensitive to and removing them these things, which feel more neurological than anything else, will resolve or at least ameliorate. I also have a bunch of atopic symptoms, strange rashy things, not severe but have been around since at least college and on and on and on. A little this and a little that. I've been told I have pelvic floor dysfunction too which is probably true but doesn't feel primary either. I suspect histamine is a problem too.
Sorry for being so long winded. This is the first place that I ever felt I could talk about all this. Things have already started to improve (at least I am not chained to the bathroom). So glad to have found you all. It would be nice to have an answer and a solution and not feel like a crazy person.
Jean
Story not symptoms
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Jean,
My earliest symptom was C, so I never realized that I had a digestive system disease (until relatively late in life), - I just assumed that poor eating habits caused the problem, and of course, what I ate, did make a difference. Some of my symptoms also changed over the years. Serious childhood asthma, for example, disappeared when I was in my 20's, and changed to hay fever. My teeth were almost trouble-free, until I reached my late 50's, and suddenly they headed south in a hurry, (presumably due to a lifetime of enamel damage, because of untreated gluten-sensitivity. When the D started one day, and wouldn't stop, my hay fever and other allergy symptoms disappeared, only to return, years later, after I reached remission. Anyway, the point is, long-term gluten-sensitivity can cause issues that set us up for all sorts of undesirable immune system events.
Regarding the symptoms that you described, remember that I'm not a doctor, but here is what I suspect is going on:
IMO, the dizziness and shakiness are due to a hypoglycemic effect, caused by eating only lean meat. Your body is craving carbs. It's possible to live on meat alone, but it must be fatty meat. Without fat, along with the lean meat, one develops a condition knows as "rabbit starvation", which can lead to serious consequences, if continued long enough.
Has your B-12 level been checked lately, or are you taking a B-12 supplement? Neurological symptoms that involve loss of sensation, or paresthesia, (numbness, tingling), are commonly caused by a B-12 deficiency.
The contractions that you are experiencing may also be connected with either early symptoms of rabbit starvation, or a B-12 deficiency, but they can also be caused by a state of dehydration. If the contractions occur while you are lying down, the effects can usually be minimized by lying on your left side.
The skin issues may be connected with MC, but they could also be connected with food-sensitivities, and/or vitamin or mineral deficiencies. In addition to B-12, many of us are also deficient in vitamin D, folic acid, and magnesium. If you have any problems with leg or foot cramps, for example, or restless leg syndrome, that's almost always due to a deficiency of either magnesium, or potassium, (or both).
Please keep us posted,
Tex
My earliest symptom was C, so I never realized that I had a digestive system disease (until relatively late in life), - I just assumed that poor eating habits caused the problem, and of course, what I ate, did make a difference. Some of my symptoms also changed over the years. Serious childhood asthma, for example, disappeared when I was in my 20's, and changed to hay fever. My teeth were almost trouble-free, until I reached my late 50's, and suddenly they headed south in a hurry, (presumably due to a lifetime of enamel damage, because of untreated gluten-sensitivity. When the D started one day, and wouldn't stop, my hay fever and other allergy symptoms disappeared, only to return, years later, after I reached remission. Anyway, the point is, long-term gluten-sensitivity can cause issues that set us up for all sorts of undesirable immune system events.
Regarding the symptoms that you described, remember that I'm not a doctor, but here is what I suspect is going on:
IMO, the dizziness and shakiness are due to a hypoglycemic effect, caused by eating only lean meat. Your body is craving carbs. It's possible to live on meat alone, but it must be fatty meat. Without fat, along with the lean meat, one develops a condition knows as "rabbit starvation", which can lead to serious consequences, if continued long enough.
Has your B-12 level been checked lately, or are you taking a B-12 supplement? Neurological symptoms that involve loss of sensation, or paresthesia, (numbness, tingling), are commonly caused by a B-12 deficiency.
The contractions that you are experiencing may also be connected with either early symptoms of rabbit starvation, or a B-12 deficiency, but they can also be caused by a state of dehydration. If the contractions occur while you are lying down, the effects can usually be minimized by lying on your left side.
The skin issues may be connected with MC, but they could also be connected with food-sensitivities, and/or vitamin or mineral deficiencies. In addition to B-12, many of us are also deficient in vitamin D, folic acid, and magnesium. If you have any problems with leg or foot cramps, for example, or restless leg syndrome, that's almost always due to a deficiency of either magnesium, or potassium, (or both).
Please keep us posted,
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.
Thanks Tex. I had been taking B vitamins but stopped all supplements except D in an attempt to get things under control but it might be time to restart the B and the magnesium. The meat I have been eating isn't extremely lean and I have been low carb for a long time so I thought my system had adapted to it but perhaps this all meat regimen was just too low carb. I got some gluten free rice crackers today and some swiss chard that I will eat well steamed. The shakiness et al has diminished and the D has stopped. Things aren't normal but things haven't been normal for a long time. It does feel like I am on the right track. For a long time now I have had very dry eyes and used Restasis twice daily to treat them. I realized a few days ago that I hadn't been using it and my eyes aren't bothering me. I remain hopeful.
I really appreciate all the work you do Tex. This forum is a wonderful resource. Periodically articles appear about the dangers of getting medical advice from the internet. It's the place where I have got my best information. It's true it's not a good idea to just follow any old advice but that's goes for what doctors suggest also.
Jean
I really appreciate all the work you do Tex. This forum is a wonderful resource. Periodically articles appear about the dangers of getting medical advice from the internet. It's the place where I have got my best information. It's true it's not a good idea to just follow any old advice but that's goes for what doctors suggest also.
Jean
Tex and Jean,
I think that the dizziness and weakness on needing to evacuate the bladder is a sign of automonic dysreflexia. It is usually associated with spinal cord injury, but I have seen patients where it is appeared in a situation like yours, Jean, where sensation from the area is disturbed.
When the bladder tries to send a signal to the brain that you need to go, but the signal can't get through there will be a reflex action (caused by the autonomic nervous system) without brain regulation.
In paraplegics it is very dangerous, and can be brought on by anything that would cause discomfort in a normal person, like pressure, need to defecate or urinate etc.
There are changes in functions regulated by the automonic nervous system, such as BP, flushing, goosebumps etc.
The answer is to remove the cause of the pressure, in your case, Jean, by emptying your bladder.
Polly, Tex, feel free to correct me if I am wrong.
I think that the dizziness and weakness on needing to evacuate the bladder is a sign of automonic dysreflexia. It is usually associated with spinal cord injury, but I have seen patients where it is appeared in a situation like yours, Jean, where sensation from the area is disturbed.
When the bladder tries to send a signal to the brain that you need to go, but the signal can't get through there will be a reflex action (caused by the autonomic nervous system) without brain regulation.
In paraplegics it is very dangerous, and can be brought on by anything that would cause discomfort in a normal person, like pressure, need to defecate or urinate etc.
There are changes in functions regulated by the automonic nervous system, such as BP, flushing, goosebumps etc.
The answer is to remove the cause of the pressure, in your case, Jean, by emptying your bladder.
Polly, Tex, feel free to correct me if I am wrong.
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Tex, I'm sure you remember the name of the member who had the pelvic floor dysfunction and how greatly he improved after that was dealt with. I don't think it was Rich, but?
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
Marliss,
I'm not sure who you're referring to.
Gabes talked about a type of treatment in posts number 5 and 9 in the thread at the following link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14675
And Lyn mentioned Bowen Therapy as a possible treatment in post number 6 in the thread at this link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13630
I don't recall Rich ever posting that he had found a way to effectively treat his problem.
Tex
I'm not sure who you're referring to.
Gabes talked about a type of treatment in posts number 5 and 9 in the thread at the following link:http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14675
And Lyn mentioned Bowen Therapy as a possible treatment in post number 6 in the thread at this link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13630
I don't recall Rich ever posting that he had found a way to effectively treat his problem.
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.
Jean
Has anyone looked at smooth muscle functioning or Anti-Smooth Muscle Antibodies (ASMA) in your case? All the organ systems you mention are supported and surrounded by smooth muscle tissue, particularly the bladder, reproductive system and uterus, also the intestines and blood vessels and even the iris of the eye. It is interesting what you say about the notable muscular contractions you are feeling.
Anti-smooth muscle antibodies are diagnosed by a blood test. It could of course be a mineral/vitamin deficiency as others have suggested. It does seem like a systemic problem though.
Has anyone looked at smooth muscle functioning or Anti-Smooth Muscle Antibodies (ASMA) in your case? All the organ systems you mention are supported and surrounded by smooth muscle tissue, particularly the bladder, reproductive system and uterus, also the intestines and blood vessels and even the iris of the eye. It is interesting what you say about the notable muscular contractions you are feeling.
Anti-smooth muscle antibodies are diagnosed by a blood test. It could of course be a mineral/vitamin deficiency as others have suggested. It does seem like a systemic problem though.
Thanks for the replies.
Pelvic floor dysfunction is one of those terms that seems to cover a whole lot of problems. A lot of the therapies seem to be directed towards stress incontinence issues but my problem is the opposite of that. I did see a physical therapist for a while. I think she knows her stuff and if I could have seen her with greater frequency and didn't have to drive 1.5 hours each way to an appointment it might have made a difference but there aren't too many people who do what she does and she only worked 2 days a week so regular appointments were hard to come by, plus the stress of all that driving seemed to negate any good it might have been doing. I live in a small town and there is nothing available locally. I do have a couple of books on the topic and I have been meaning to start on the series of daily stretches that might or might not help. I'm not quite sure why I can't summon up the discipline but now that my intestinal tract is calming down maybe I will summon the energy to establish a daily practice. At least the exercises, like a strict diet, can't do any harm. Also, by the time I was seeing the pt person I had just about run out of enthusiasm for the whole medical profession. I spent the better part of 2 years getting referred to specialists and being tested this way and that, with nothing coming of it other than bills to pay. I had pretty much concluded that whatever was wrong with me I was just going to have to figure out how to live with it until lately when things got so bad that living with it didn't seem like an option either.
Jean
Pelvic floor dysfunction is one of those terms that seems to cover a whole lot of problems. A lot of the therapies seem to be directed towards stress incontinence issues but my problem is the opposite of that. I did see a physical therapist for a while. I think she knows her stuff and if I could have seen her with greater frequency and didn't have to drive 1.5 hours each way to an appointment it might have made a difference but there aren't too many people who do what she does and she only worked 2 days a week so regular appointments were hard to come by, plus the stress of all that driving seemed to negate any good it might have been doing. I live in a small town and there is nothing available locally. I do have a couple of books on the topic and I have been meaning to start on the series of daily stretches that might or might not help. I'm not quite sure why I can't summon up the discipline but now that my intestinal tract is calming down maybe I will summon the energy to establish a daily practice. At least the exercises, like a strict diet, can't do any harm. Also, by the time I was seeing the pt person I had just about run out of enthusiasm for the whole medical profession. I spent the better part of 2 years getting referred to specialists and being tested this way and that, with nothing coming of it other than bills to pay. I had pretty much concluded that whatever was wrong with me I was just going to have to figure out how to live with it until lately when things got so bad that living with it didn't seem like an option either.
Jean