| T O P I C R E V I E W |
| Marcos |
Posted - 11/26/2007 : 15:37:35
5 years ago I found myself dizzy most of the time and with ringing in my ears. I was feeling tremendous pressure due to my perfectionism. I started to check for my blood pressure, but it was not that bad, then, excessive sweating (especially at night), and frequent urination made me suspect diabetes…I found my glucose level to be above normal. After diet and weight loss, I managed to lower it to normal level. I controlled this glucose problem; however, the symptoms continue, and on top of that I started feeling joint pain. I went to internet and search and research. I remember now, that I considered fibromyalgia but discarded it, because back then, the pain was not all over my body, not even all over my back; therefore,I kept researching and found out that my symptoms could only applied to 4 diseases and 1 condition, the condition was hemochromatosis. I did not remember all the symptoms that drove me to this conclusion, but they were very solid. I did a research at the time that would have made any doctor proud. Wow, I had to educate one of the best oncologists in the city. Articles in the American Hemochromatosis Society said: “you have to take control of your treatment because the medical community is not on board with this condition yet”. Levels of Ferriting that were consider normal in the general medical community, back then were consider dangerous by doctors familiarized with the condition. I got treated like I wanted, and controlled my problem. Needless to say, that battle left me so disappointed at doctors I general. Then, a year later, my father had a heart attack, and while he was at the hospital in intensive care, I was hospitalized with what seemed to be a heart attack. After nitroglycerines, scans, etc. …the next day they came to the conclusion: it was a panic attack. From that moment on, my blood pressure had to be controlled with Atenolol (Beta-blocker). Then the serious back pain started happening. Curious enough, when I was the healthiest, and started working out with my kids, is when the big pain occurred. After, that, I recover a couple of times. The last time was like 2 years ago and I am still suffering from that. I have been hospitalized with a probable diverticulitis attack, which personally, I thought it was irritable bowel syndrome; however, doctors, after scans, they came to the conclusion that it must have been diverticulitis because of the fever I had. At that time, while I was in the hospital, my back did not hurt, which made me think that my back pain was related to my colon. Then again, I remember: what about my foot, legs, neck. I have been in acupuncture, chiropractors, PTs, neurosurgeons who wanted to cut me open, used the VAX-D machine to decompress the disks. I was beginning to believe that there was not recovery for a disk herniation. I still get phone calls from PTs and chiropractors telling me that even if i feel good i should go back for preventive therapy or i will have the pain again. Now, I tell them to google Dr. John Sarno:).
After I read Dr. Sarno, I started to feel better almost inmediately; however, pain started to move to different places in my whole back. It moves all over during the day. The pain becomes numbness in my foot, restless legs, cramps, neck, groin, etc.; however, my blood pressure is now (after 3 weeks of reading Dr. Sarno's Books,and following Dr. Schechter's Workbook) normal without pills…same thing with my glucose level. Now I know I can beat the pain.
I had forgotten about the symptoms that I had 5 years ago, which led me to believe that I had hemochromatosis, so I went to the webpage of the American Hemochromatosis Society to check on the symptoms again, and what a surprise! If you have any of the following illneses, you may suffer from hemochromatosis:
Arthritis
Joint pain/Replacement
Diagnosis of Fibromyalgia/Chronic Fatigue Syndrome (CFS)
Anemia
Hypothyroidism
Impotence/Early menopause / Irregular periods
Infertility /hysterectomy/no children
Diabetes mellitus /High blood sugar
Heart Disease/Heart Attack
Irregular heartbeat
Hair loss
Weight loss
red palms/Abdominal pain
I would not be surprised if the hemochromatosis was a TMS equivalent since most of those illneses described above are driven by the Autonomic Nervous System which also control how much iron, if any, the system is going to take. It is true that a genetic disposition has to be there to be triggered; however, just because the body has the bottoms to stop regulating the amount of iron to be taken, doesn’t mean that the mind will push them without a valid reason. By natural design, any reason it chooses would not be self destructive…the mind has to believe is benefiting the body as a whole. The only way this can happens is if the benefit is a distraction directed to avoid emotional pain, instead, producing physical pain…just like TMS equivalent.
After I finish controlling my pain, I will stop phlebotomies and check if my theory is correct. I bet it is! |
| 13 L A T E S T R E P L I E S (Newest First) |
| Penny |
Posted - 11/30/2007 : 22:53:14
Thanks for the words of encouragement, Marcos. I've read those books (except Fred's) and yes, they are awesome. Another great one is James Brady's Painfree for life. I had fibro and recovered. I have managed to wrestle gazillion other physical TMS problems and now lead an active, out of my bed, working, crazy busy life. (opposed to bedridden, staring at the ceiling riddled with pain.) I see this as my success.
I don't think I'll ever beat TMS, and in fact, I've come to terms with the fact that that my brain and body are wired to have pain sometimes more readily accessible than my negative emotions. I try to stay one step ahead of TMS and question--whenever my pain decides to rear itself--and try to get to the root of what is troubling me. I see TMS as a lifelong thing for me, and it's ok. Some months are tougher than others. Some months have been amazing and pain free. I'm certainly living a real life ... nothing's easy, but damn, the good is great and I get upset that it can't always be like that!
I see now that my pain serves an important purpose, so it has value to me.
Sorry I hijacked your thread. Thanks again for your reply.
Penny |
| Marcos |
Posted - 11/30/2007 : 19:40:40
Penny,
For questions on your anemia try the following website:
http://www.ironoverload.org/contact.html
This people are great! they are better that AHS. You can e-mail your questions and they will answer you right back. At least they did in 2002 :). They have a lot of info on their pages, and the Iron Elephant will also tell you all you need to know. I educated a doctor with the Info from this Site, and she loved it.
I also hate this TMS; however, This last 4 weeks, I have been feeling a lot better. I can see the light at the end of the tunnel...I just hope is not a train coming straight at me:). I have felt exactly like you. Hang in there...it is worth it!! I have read every one of the 4 books written by Dr. Sarno, his audio CDs, and his Video. Also, I have been using the Workbook from Dr schechter... It really help. Now I can move and do long walks (3 miles)/day. Now I feel that I am ready for another 5 weeks of treatment so I am re-reading The Mind Body Prescription, and started to read: Back and Neck Pain (Fred Amir), and Freedom From Fibromyalgya (Nancy Selfridge). This last one is very good. Even if you don't have Fibromyalgia it has a great program and tecniques to get rid of TMS.
Hope to hear that you have beaten your TMS in the near future. Post when you do. |
| Penny |
Posted - 11/30/2007 : 15:55:08
Thanks Marcos. I have battled thyroid issues that were compounded by my anemia (and my OCD and now ended quest for internet research LOL!). I took iron supplements for a long time b/c I had low ferrin.
How do you tell if you really and truly need supplements? It was crazy, as I remember taking them and my numbers barely budging, even though I followed all the absorption rules (and was taking a seemingly more readily absorbable form of iron. When I was pregnant I was anemic too. Seems to have resolved since I stopped excessive exercising. I often wondered if I had runner's anemia but my doctor said no.
I like your points about our presidency/advisor roles and health. Too often we look to doctors for all the answers. Our society conditions us to beleive doctors can diagnose and treat ALL illness, when this is just a stereotype, not the truth. Part of my TMS recovery has meant coming to terms with the fact that doctors only know what they know. I choose to believe that most mean well, but I was so emotionally defeated and disregarded by my doctors. They sold me on so many diseases and illnesses, caused me more worry and made my TMS worse. (I didn't know about TMS at the time.) I had to face my own mortality and stop being so freakin fearful about pain and my own death. I was so scared about dying--as most people are--that I opted to blame doctors and focus on other things instead of the emotional work that eventually led to my body's healing.
Thankfully I am still doing the work, and now I view my body's expression of pain and illness in a very different manner. Perhaps more healthy? Who knows. Simply-I feel better, and that's the cure I was mistakenly looking outside of myself for. I found my cure within, and I'm reinventing my cure every day.
I guess I needed to reiterate that for my own good. I've been having a lot of physical reminders this week, and I'm a bit ticked off about it. This TMS really stinks royal sometimes.
All the best to you. Thanks for reading my crazy ramblings.
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| Marcos |
Posted - 11/30/2007 : 05:46:44
Penny,
Make sure that your anemia requires for you to take iron supplements. Your red cells require iron to form; however, sometimes the cell does not have enough strengh to hold the iron and drop this in your organs (specially in your liver). A blood test will tell you that you suffer from anemia; however, taking iron supplement will end up overloading you with iron to dangerous levels. When i started learning about this, I found out that a friend of mine had this problem and the doctor was advising her to take more iron:). She told me that she went to another doctor in Florida that realized the one in NY made and error in his advise. Another friend of mine (in Venezuela) had the same problem, and I told him about my findings. He said that I was crazy. He was anemic and the doctor was giving him iron. That made sense to him. I was not a doctor so guess who he was going to believe? He died from Cirrhosis of the Liver, he was a religious person who never drank alcohol. It was frustrating. I even sent a book to him but he never believed it, or didn't want to believe.
I hope you are on top of your condition. You are the president, and the doctors are your advisors. You have the last word since you are the one that have to live with the consequences. As a good president, you have to consult with as many advisors as possible (internet, books, magazines), and take this knowledge to quiz your doctor. If his answers do not look logical or if he does not appreciate your knowledge, get another doctor. You are the boss, not the other way around. |
| Penny |
Posted - 11/29/2007 : 17:40:32
I think all illness and diseases can be influenced by our brains and emotions, but diseases like hemochromatosis should be followed by your doctor. You may have your levels tested regularly to make sure you don't need to have a draw. Too much iron, just like too little, can really mess with our bodies.
You probably know this already (since you know about AHS) but when you eat iron containing products you may want to talk to your doc about taking calcium with it, as calcium counters iron absorption. Vit C--on the other hand--actually promotes iron absorption. (When I was anemic--low ferritin--I took vit c and non-calcium fortified OJ with my iron supplements, and avoided dairy for several hours before and after.)
Good luck.
>|< Penny
"Feeling will get you closer to the truth of who you are than thinking."
~ Eckhart Tolle
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| Marcos |
Posted - 11/28/2007 : 08:18:30
Carolyn,
It is rare for young women, just because menstruation takes care of flushing the iron out. If you have Hemochromatosis, after menopause, you will start to accumulate iron; however, depending how old you are when you have your menopause, it may not affect you, just because you may die of old age before accumulating enough iron to really do any harm to your organs.
Anyway, always consult your physician.
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| koukla |
Posted - 11/28/2007 : 07:06:44
Interestingly, a few months ago I started getting joint pains all over my body and was convinced I had rheumatoid arthritis. When I finally got in to see the rheumatologist, she tested me for all kinds of diseases including doing a workup on my ferritin levels. It turned out that all I had was a vitamin D deficiency which is quite normal where I live. After she told me she didn't think I had RA, I could walk normally immediately and all my various joint pains went away (except for my hands). The doctor said that hemochromatosis was very rare in young women so I do not feel afraid of it anymore. I will keep it in mind if I start to get problems after menopause, but that's not for a long time!
Carolyn
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| Marcos |
Posted - 11/28/2007 : 06:29:47
Mcone,
Back then, I heard that for some people (people with anemia) were phebotomies could not be used, they had to go with Chelation. I never heard of IP-6; however, this may be some kind of Chelation?
Any how, I was looking for the website, where i got the best Info, and it has changed. Check this one: http://americanhs.org/
There you can find what to ask your doctor for, what tests you need, and the right values for these (your doctor may not agree, but you will know if you read the results)tests: serum iron,TIBC (total iron binding capacity), and serum ferritin.
Hematocrit (hct )and hemoglobin (hgb) are not tests to confirm the condition.
The percent of saturation is calculated by dividing the numerical result of the serum iron by the numerical result of the TIBC. A percent of saturationgreater than 40% (>40%) and/or a
serum ferritin greater than 150 ng/ml (>150ng/ml) is suggestive of Hemochromatosis; therefore, get tested for hereditary. If positive, start phebotomies or whatever other means they have to lower the iron levels. The fact that your hemoglobin stays high, even though you are drawing blood every week, is in itself a confirmation of the condition. Don't do the liver biopsy. The wanted to do this to me, but Roberta Crafford wrote that this was not necesary to confirm the condition. It is an unnessary risk (1/1000). You could die from this. My doctor told me that those chances were very slim, but, I would not go to a the best concert in town (free tickets an all) if they would tell me that there will be 1 people dead for every thousand spectator:)
Good luck,
Marcos
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| mcone |
Posted - 11/27/2007 : 19:57:40
quote:
Originally posted by Marcos
* * * and now I had a condition that I would have to take care for the rest of my life. Is not too demanding once is under control, but nevertheless, is always in the back of your mind. * * *
If you suffer from this condition, try to read The Iron Elephant, by Roberta Crafford. That book is a life saver.
I'll look for that book. This topic is definitely a great reminder for me to stay vigillant about my iron levels - Some of my reading suggests that ideal levels of iron are actually level in the lower part of the normal range.
Have you heard anything about IP-6? A (medically supervised) trial of IP-6 as an alternative to phlebotomy might be worth trying) As mentioned, following a 6 week or so course of IP-6 only (no blood drawings) my iron levels retreated down to normal ranges again.
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| Marcos |
Posted - 11/27/2007 : 16:10:28
mcone,
The symptoms got reduced. After all, they drew a pint of blood/week per 6 months. That flushed a lot of impurities out, not just the iron; however, that experience left me mentally drained. I was no longer Superman, and now I had a condition that I would have to take care for the rest of my life. Is not too demanding once is under control, but nevertheless, is always in the back of your mind. Later, triggered by other set of stresses, I started having other TMS equivalents until I got TMS.
If you suffer from this condition, try to read The Iron Elephant, by Roberta Crafford. That book is a life saver.
regards, Marcos |
| Marcos |
Posted - 11/27/2007 : 15:54:21
Carolyn,
I did have a genetic testing done, and that is why I mentioned that just because I have the tendency to acquire the condition, the one that will decide, if I get it or not, is my mind...when it decides that? when the time is right...a distraction would make it right :) I think . At least, that is what I am beginning to suspect. My mother, who is 67, also has the genes; however, she does not have the condition. May be, if she would run into enough stress, then she may actually get is.
Regards, Marcos |
| mcone |
Posted - 11/27/2007 : 11:41:24
You may be onto something. About a half a year after my "TMS breakdown" emerged, I had a full workup at the Mayo clinic and they identified elevated iron levels. (My symptoms included SI joint pain, knee pain, wrist pain, etc. And I also experiened night sweats, chest pain - identified as panic attacks - and some blood pressure spiking when under stress)
Yet Mayo suggested that the high iron was just an incidental finding and told me that it was not related to my symptoms. (Followup was suggested but I left Mayo to pursue an "RSI" treatment program)
Months later (still pre-Sarno) a rheumatologist's blood testing also noted high iron, and then I finally, on my own (but with supervision of an internist), started using a chelating dietary supplement called IP-6 (Inositol Hexaphosphate) to lower iron levels. When I was tested again about 6 or 8 weeks later, my iron levels were back within normal range. (I then discontinued the IP-6).
I can't say for sure that I've noticed any significant difference with my TMS symptoms - between the high and normal iron states - but it is possible that some of my symptoms have reduced. Still, your hypothesis - that an ANS-mediated dysregulation of iron can result from TMS may very well be sound - even if the high iron itself could be addressed via chelation or phlebotomy.
I should ask you whether you could correlate any reduction in TMS symptoms with reduing iron levels? The chest pain? the night sweats? The blood pressure? |
| koukla |
Posted - 11/27/2007 : 11:27:51
Have you had genetic testing for hemochromatosis? This does run in families, especially in people from the Mediterranean as high iron levels offers a natural resistance to malaria. My great grandmother died from the condition and I have uncles who are managing theirs through regular blood draws.
Thanks and regards,
Carolyn |
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