08-08-2011, 12:32 PM #1
- Join Date
- Feb 2009
Fibro, IBS, Sleep Apnea, Pancreas etc
Over the past 2 years I have been diagnosed with:
Malabsorption issues with Pancreas
Restless Leg Syndrome
Low Thyroid (removal of a benign tumor)
Iron Deficiency Anemia
Prior to that I had arthritis and GERD.
My symptoms are nocturia, fatigue, back and leg pain, flu-like feeling, diarrhea, sensitivity to cold, and brain fog.
The most recent diagnosis was the pancreas issue. For some time, I felt that all of these issues had some common thread. After the malabsorption diagnosis, I was prescribed Creon, a pancreas enzyme replacement. My nocturia and diarrhea improved immediately. Too soon to tell regarding the others.
I knew of discussion of the linkage of some of these disorders, but it was not until I googled "malabsorption and fibro" that it alll seemed to fall into place.
I'm still reading and I'm not close to understanding the details yet.
I have yet to find a doctor who can speak clearly about the linkage of these things, but I'm looking. If anyone knows of a Urologist of fibromyalgia expert or other professkional in the Atlanta area, I would appreciate the tip.
I would also be interested in information from others about the medical science basis for the linkage of these problems - and advice about remedies.
I take 14 prescribed meds now and may start to try to eliminate some of them.
01-26-2012, 12:24 PM #2
- Join Date
- Jan 2012
Hi bj42-I actually just wrote a book about the this. It is called Autoimmune The Cause and The Cure.
To understand how all of these diseases are connected, you need to know what the cause is. The lack of pancreatic enzymes called protease would lead to every condition and symptom you mentioned. The proteases job is to break down proteins. You already know the pancreas is involved. Here is how the inability to break down proteins would lead to fibromyalgia.
Two of the leading researchers in fibromyalgia are Dr. Wood and Dr. Lavin. Dr. Wood is the scientific director of The Fibromyalgia Association of America. Dr. Lavin has more published research than anyone else in fibromyalgia. Both are highly respected. Dr. Wood has found that fibromyalgia patients lack iron, have spinal cord changes and have low dopamine. Dr. Lavin has discovered that fibromyalgia patients have dysautonomia or a dysfunction in the autonomic nervous system. Here is how we can directly trace each of these findings directly back to missing pancreatic enzymes that break down proteins.
Dietary proteins are broken down by protease into essential amino acids. One of the essential amino acids studies have found lacking in fibromyalgia is phenylalanine .Phenylalanine is found in HIGH PROTEIN FOODS. Phenylalanine breaks down into tyrosine and tyrosine then breaks down into dopamine. This would explain the lack of dopamine in fibromyalgia.
According to the National Institutes of Health, subacute combined degeneration of the spinal cord is caused by a vitamin B12 deficiency. Vitamin B12 is ONLY found attached to dietary animal protein. Studies show that proteases are ESSENTIAL for the binding and transport of vitamin B12. So, this would explain the spinal cord changes found in fibromyalgia.
These same proteases also regulate iron absorption via the liver. So, this explains the lack of iron.
Dr. Lavin's finding of dysautonomia can also be clearly explained. The two neurotransmitters that regulate the autonomic nervous system are adenaline and acetylcholine. Acetylcholine comes from choline and choline comes from B12. Adrenaline comes from dopamine. Dopamine comes from tyrosine and tyrosine comes from phenylalanine. (essential amino acid found in high protein foods)
Here is how low thyroid would fit in. Phenylalanine breaks down into tyrosine and besides then breaking down into dopamine, tyrosine is also used by the body to make both of the thyroid hormones-thyroxine and triiodothyronine.
The lack of dopamine and iron would also lead to Restless legs syndrome. Here is some information on this.
I could go on, but you get the idea. You are right, they are all connected. We can trace every single symptom of autoimmune disease and every valid scientific finding directly back to these missing enzymes. If you have any questions about how the other conditions you mentioned are caused by lack of proteases, just ask.
01-26-2012, 01:05 PM #3
- Join Date
- Jan 2012
The lack of dopamine and acetylcholine (derived from B12) would also lead to sleep apnea. Here is some information on this. This is a quote from the article: "The patients who had the lowest dopamine levels talked and thrashed about while they slept. Those with the lowest acetylcholine-producing neurons has the worst sleep problems."
Also, here is some info on peripheral neuropathy. The information states:"A clear link has been established between lack of B12 and peripheral neuropathy."
01-26-2012, 01:07 PM #4
A plant-based anti-inflammatory diet would probably help you a lot. I'm using one myself for my own pain issues with much success (80% reduction in pain and inflammation after three weeks on the diet). I've been learning a lot about this way of eating and how inflammation is at the root of many health conditions on the McDougall website.Favorite quote: "Moderation kills." ~ Dr Caldwell Esselstyn
I've been remission since Aug 2009! My apologies but I will no longer respond to private messages regarding my IC and VV symptoms, diagnosis, treatments, remission, lifestyle changes including my diet or stress management techniques, etc. I am simply too busy. If you have questions please refer to my remission thread as well as the other 6000 something posts I have made on this board....they pretty much cover it all from beginning to end.
My remission story: Healing from the Inside Out
What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"
03-26-2012, 06:36 AM #5
- Join Date
- Mar 2012
This is a very interesting thread.
I too wonder if all my problems are somehow connected but I do not know how to get it basically investigated further. Everything just gets blames on my Fibromyalgia and I get told I need to excercise. Thats bull because I have no energy to excercise. And by the way back when I started having all these problems I worked out at the gym and was in good health so that makes no sense.
I research and research whenever I can to try to find out if this can all be related. From what I can gather I have something wrong with my autonomic nervous system due to my symptoms but cannot figure out what it is. I also myself have restless legs.
I have had tests come back positive at times but then negative at others but no one can explain why. And what is bad is that when they come back positive and they retest again and they come back negative they just dismiss the positive tests all together. This has happened with high Liver tests (my ALT, AST and Bilirubun). The ALT and AST were pretty high. Then my cortisol was high at one point and the Endocrinologist thought I had adrenal insufficiency (he did not tell me this---I read it on my medical records). But when I was tested again my cortisol came back fine. Same thing with my potassium levels. They constantly fluctuate. I have had to take liquid potassium before. Other tests are weird too. And I have had alot of autoimmune testing that comes out weird but no one can explain (like intrinsic factor problems, etc.).
I have had low iron and had to get an iron infusion. Just had blood work done a while back and of course my iron is on the low side again but not low enough this time for an infusion I guess. I have researched and it does look like I have malabsorption problems. My mom does have pancreatitis and has to take pills for it.
My chronic diseases and problems that I have:
Sliding Hiatal Hernia
flunked my PFT two times. Was told it was Restrictive or something and again it was blamed on my Fibromyalgia and deconditioning because my xray came back normal
Been told that I have a sleep problem (they did an oximetry on me to confirm this) but likely due to Fibromyalgia and deconditioning. Rheumatologist mentioned Sleep Apnea at one point but not again.
Also been told I have Anemia and had to get iron infusions at Mayo Clinic because of it.
No one can explain why I am having kinda like numbness and circulation problems in my hands and feet. It happens mainly at night causing me not to be able to sleep.
Interolence to both heat and cold. The heat though is the worst. The heat is worse at night and the cold during the day.
I have real bad headaches with vomiting at times and nausea.
I also have coughing that comes and goes, chest pain and tightness, dizziness and shortness of breath.
I have real bad back pain, brain fog all the time, CHRONIC FATIGUE WHICH IS MY WORST PROBLEM BESIDES THE IC, chronic aches and pains all over.
I cannot think of anything else right now.
What would I need to do to get my pancreas checked? I have had soooo many blood tests done over the past 4 years. Don't know if they ever tested it. I know my mother's Pancreatitis was detected on a blood test.
03-29-2012, 03:15 PM #6
Wow, I've been looking for a common thread for all my problems for years. Several weeks ago I figured out I wasn't even breaking down my multivitamin, let alone absorbing it. I switched to chewable multivitamins, and the difference was dramatic in terms of my rate of healing. I'm going to have to look into malabsorption some more. Thanks for bringing up this subject.IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal chord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.
05-31-2012, 10:39 AM #7
- Join Date
- Mar 2005
Hey, The doctor I went to in Bloomington Minneapolis Minnesota said I have PFD, a-long with all of my other pain...so the list goes on he wants me to do PFT with a PT . He had no problem giving me pain meds of Tramadahl s.p. 50mgs for 60 days. and then he tells me to have a trial interstim put in for IC, IBS, CPP, PFD, and CBackPain curv in spine. He tells me they are all linked through the spine and this Interstim will help, I have 3 months to decide. I have an appointment with the pain center here on the 8th and my first PT for PFD on the 11th. I also have bursitis in R-hip and knee, FMS, endometrosis, have had 2 posterier repairs, a burch, sling, and bladder tack, CFS and depression, TAH ...etc...
I hope I have some good news when I am finished with the pain cl...I have not heard any good things about this pain clinic in ND
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