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johnaccardi Posted - 03/27/2008 : 07:32:08
Hi everyone,

I have posted a few times before. I am a college student who has developed many symptoms related to disorder, "Sjogren's Syndrome". I still have these symptoms: Dry mouth, dry eyes, dry skin... I learned about TMS about 2 months ago and read 3 of Dr. Sarno's books since. It hasn't worked for me as the symptoms have actually gotten worse. This morning I woke up and noticed a rash on both my arms, this rash is known to be related to Sjogren's. Could the progressive symptoms even with the knowledge and study of TMS be hinting to me that I have Sjogren's or does it still look like TMS as Sjogren's is quite uncommon for a young male. What do you guys think? I really need some reasurance on this...it hasn't been a good morning.

Thanks a lot,
John
20   L A T E S T    R E P L I E S    (Newest First)
johnaccardi Posted - 04/02/2008 : 16:28:49
Thanks Dor,

I plan on ruling out the physical first. Like you said "go with your gut" and my gut says I will never accept TMS fully and geniunly unless I rule out Sjogren's Syndrome 100%(at least in my perception). Your advice to float through life has helped me. I realize that fighting was the wrong way, we need to just let our feelings ride and trust that God will make it all work out.
Dor Posted - 03/31/2008 : 17:14:08
John, I do not think you are wrong for ruling out the medical first, and I do not think that Sarno would disagree. The one thing I would like you to do is to try not to put so much pressure on yourself. OK, so this is your first year at college and you are "supposed" to be all happy and having a great time. But, ya know what, that is not always true for everyone and I would be willing to bet, not true for most. Life has its hurdles and this is one of yours. Don't force yourself to be happy, just be!!! Whatever that being is, just be. There is so much life ahead of you and life is going to have its ups and downs, so just because it is college doesn't mean that it is the best time of your life. There are people who never left high school in their brains because that was "the best time".

John, I was married six months before my husband was sent to Vietnam. Here I was newly married and this was "supposed" to be the best time of my life and wow, it was the worst. There was extreme anxiety that took a long time to recover from and a mulitude of physical manifestations of that. And, even when he came home safely, thank God, that didn't mean the road was smooth sailing from then on. Other issues and problems pop up in life. We have recently retired and moved to our ideal place, but that does not mean that life is care free now - a whole host of medical problems have beset me this past year and none that are based in TMS.

My point is, I think you are right to explore every avenue until you are convinced that it is TMS. Maybe it is and maybe it isn't, but I agree, Sarno suggests nothing less. I told you in a recent posting that until we can come to the TMS diagnosis it sometimes requires that the brain accept that it is not physical in nature. There is nothing wrong with that - nothing!

The only one you are required to make peace with is yourself in whatever form that takes. Sometimes it is very important that we explore everything. For example, I have just had a series of severe dental problems - loss of teeth, partials that did not work, TMJ, and ringing in the ears. I know that Sarno lists ringing in the ears as a manifestation of TMS. While I agree that this can indeed be true, since getting my partials last week the ear ringing is diminishing as a result of correcting a bite that was out of line. Did stress make the ear ringing worse? Of course. But there was also a medical component to it as well. In order to heal we must get the medical and the mental to come together. In other words, to quote an old phrase, one can not throw the baby out with the bath water!!!!

My very best advice is to do what your gut tells you to do. The mind and the heart may become confused, but the gut is seldom wrong. You do what is right for you no matter what anyone else says. Everyone is going to have an opinion. But, you know, you really do know what the answer for you is. You just have to look at it honestly and completely. Let you gut lead the way. It will not fail you, promise!

Dor
johnaccardi Posted - 03/31/2008 : 13:58:12
h2oskier25, I am not scheduling for another blood test, it's a labial biopsy. I know that Sarno says to repudiate the physical but he says that first you must rule out serious disease. I want to approach this the right way and I still have doubts that I'm trying to rid myself of; more tests can help in that respect.

I am really trying to appreciate what I have now, because I know some day I'll wish I was back in this time and place. It is very hard however and I sure hope this is one of the harder portions of my life.
h2oskier25 Posted - 03/31/2008 : 13:17:01
quote:
Originally posted by johnaccardi

-Yes, I am aware of the fact that Sjogren's syndrome effects predominately older women.
-Yes, I have talked to my parents about it, my communication with them is great about this and they know I am very worried.
-I have actually had blood test done, which came back all negative but it was after the negative results that the Rheumatologist said it's probably Sjogren's. Also, there are many people out there who have Sjogren's with negative blood test results.
-I am in the process of making an appointment for a labial biopsy, which is about 80% accurate.




Mr. Accardi, WHY are you planning another blood test!?!?!? First rule of Sarno, repudiate the physical !!!! And, you have had blood tests that RULE OUT SS!!

The rheumatologist you spoke of has permission to be wrong, like most doctors. She said it was probably Sjorgen's ?!?!? Based on WHAT exactly? Based on the fact that she's only trained to see changes in the joints or autoimmune disorders?

Anybody can be less than excellent at their job, and your Rheumo is in that crowd.

You are going through your first year of college. It's all kind of big and scary. I remember. Dor's kid is living it, too.

I like the float don't fight advice given here.

Please, take a deep breath, look around, and be thankful for the health you have. Be thankful for the boxing, and all the physcial activity you are able to do. Try to appreciate the fact that college is a great experience. No parental limitations, a huge opening up of the mind, wild parties, all the stuff. Enjoy this chance that a lot of people would kill to have, but will never have.

Regards,
stanfr Posted - 03/31/2008 : 12:10:47
I personally think it's quite possible, although youll find others here (like Hillbilly) who would argue that's pure nonsense. In my case, i originally thought it was a fungal infection. it got worse after i sought surgery for my sinus issues (bad congestion/ allergy attacks). At the time, i didnt know whether my sinus problems were a TMS equivalent or truly physical (a deviated septum). I even considered the idea that it was part of 'leaky gut' syndrome which is a fungal problem. (ive since come to the conclusion that leaky gut is pretty much nonsense). So it may not be a coincidence that my psoriasis developed/got worse immediately after i "defeated" my sinus issues, i think its quite possible that it was 'targeted' because at the time i was mentally receptive to it being related to my sinus issues in a physical way (both fungal).
johnaccardi Posted - 03/30/2008 : 14:51:20
Thank you Stanfr, the fact that Psoriasis is pretty well known as being psychsomatic brings me relief. Do think my mind picked this symptom specifically because it is related to Sjogren's even though I had never heard of Psoriasis before??? Is that possible???
stanfr Posted - 03/30/2008 : 10:32:47
Slight correction--i haven't 'gotten rid of it' but have eliminated the annoying symptoms to a large extent. I wouldnt get too hung up on labels, but there is no question in my mind that psoriasis is psychosomatic, whether you can equate it to TMS is another issue that has been argued about in numerous topics here. It's clearly related to anxiety. As is the case with all 'TMS' type disorders, it's important to recognize that and not give the symptoms any attention.
johnaccardi Posted - 03/30/2008 : 09:34:08
Dor,

I have had my wisdom teeth removed about a year ago but I have not gone to a dentist yet about this problem. I will probably make an appointment soon, like you said, they are experts when it comes to the mouth.
Dor Posted - 03/30/2008 : 06:44:43
John, on other thought - do you still have your wisdom teeth? If so, are they all the way through, just coming in, causing any aching or pain? I have just read that wisdom teeth can cause dry mouth. Many people your age deal with wisdom teeth issues. Might be worth thinking about and checking with your dentist. Have you seen a dentist for your problem? Often they can discover things within the mouth that are causing problems that a doctor would not be aware of.

Dor
Dor Posted - 03/29/2008 : 17:40:00
John, I am so, so glad that you are in touch with your parents about all of this and that you have a good relationship with them. That helps so very much. And, I am glad that you are getting the testing done. Even 80% is a good percentage! Please keep letting us know how you are doing. I remember so well being your age and worrying about so many things, as my own son is doing now. He even said to me today - I would feel better if the chest pain was not on the left side! Little do people understand that the heart is acutally in the center of the chest! I say this so you will understand that you are not alone in what you are dealing with. The symptoms may be different, but the diagnosis is probably the same.

I am thinking of you and trusting that you get all the answers that you need. In the meantime remember, float don't fight, and keep moving forward. I think because of all of this that you are going to make a great psychologist one day. You will so be able to relate what people are going through. Maybe, just maybe, there is a reason for all of this. I think you will find that one day all that you are going through right now is going to lead you to helping others in the future.

Thinking of you,

Dor
mizlorinj Posted - 03/29/2008 : 15:12:47
Hi John.
I was referencing my book You Can Heal Your Life by Louise Hay for something I felt coming on yesterday. I thought of you as I passed the page with dry eye on it. So may I give you an assignment? Do you think you could check your local library for the book? It has a chart of symptoms (many of them) and for dry eye she suggests anger and/or needing to forgive someone/something. If you check your conditions, eye, mouth, skin, etc. slowly read the suggested emotion involved and ask yourslf if there is something in that suggestion that could possibly relate to you. Somewhere in your life would it be possible there is a connection.
I have found this helpful many times. I had to really stop and think about where it could apply, and often did some writing based on that suggested feeling.
May be helpful to you too. Seems forgiveness of ourselves and others is gaining media attention as of late. Many of the books I've read this past year give it a lot of attention too as it's necessary for our healing in most cases.
Hope you find the answer that works best for you. We do care about you and want you to benefit from our experiences with conditions we had that WERE indeed TMS.
Best warm wishes,
Lori
johnaccardi Posted - 03/29/2008 : 14:41:43
Thank you Dor for the response.

To answer some of your questions:

-Yes, I am aware of the fact that Sjogren's syndrome effects predominately older women.
-Yes, I have talked to my parents about it, my communication with them is great about this and they know I am very worried.
-I have actually had blood test done, which came back all negative but it was after the negative results that the Rheumatologist said it's probably Sjogren's. Also, there are many people out there who have Sjogren's with negative blood test results.
-I am in the process of making an appointment for a labial biopsy, which is about 80% accurate.

I really hope this isn't Sjogren's. I want it to be TMS so bad. I realize that before even trying to treat TMS I must back up and do whatever I must to rid myself of doubt. This may just simply take time as tests aren't 100% helpful.
Dor Posted - 03/29/2008 : 06:08:12
John,

Well, mother Dor is back and I did some searching. Did you know that 90% of the people who get Sjorgren's Syndrom are women!! And did you know that most symptoms appear after the age of 40!!! And, it is commonly genetic related to other diseases such as lupus, thyroid disease, and juvenille diabetes. And there are simple tests to diagnose it such as blood tests and a simple biopsy of the lower lip. Have you had any of those tests done, especially by the doctor who said you had it??

It seems highly unlikely that you have this. Have you discussed this with your parents? Do they know what you are worrying about? School will be ending soon, why not have them make an appointment with your family doctor at home? As for the TMS theory, I do believe that this may be your cause. However, Dr. Sarno always suggests that a medical diagnosis be ruled out, especially when it is not pain related such as back, leg, or arm pain.

As to the psoriasis, yes, most definitely this is related to stess and anxiety. My husband had it for years and when he retired it went away!! Removal of stress maybe??? I did not find any links to a rash being a major part of SS!

Another thought. More often than not you do NOT need to fight, you need to float. In other words, the more you fight the more you body produces adrenalin, the more you have the symptoms. I am a true believer in the work of Dr. Claire Weeks and I urge you to read her books. Being a psych major it will help in your studies as well as she was a leading expert in the field fo stress and anxiety. When I first read Dr. Sarno I was amazed at how close his theories were with hers although presented in a different way. Sarno does not suggest that you fight your way through pain or a day. In fact, he suggests you float your way through it. In other words you feel the pain or the dry mouth and go on any way understanding that it can not harm you. It is the fear that harms, not the thing!!! It is Dr. Week's theory and when you really examine Dr. Sarno it is his as well.

I do believe that the mind has to believe and if that means going to your doctor at home then do that. Sometimes we do need an expert to help us reduce the anxiety until we can begin to reduce it ourselves. And I don't think that a few feel good measures hurt either like sucking on some sugarless lemon drops and sipping water through out the day. Sometimes they even work. If lemon drops keep your mouth moist and that can convince your brain that - wow, my mouth isn't as dry as I thought it was, then you relax, your worry relaxes, and your mind begins to accept.

I am thinking of you. Right now my own college son is worrying about his heart because his chest hurts. There is no reason at all to think it is heart related. What do I think it is? Most definitely stress related to school, work, and being 21 with a lot to deal with. I am giving him the same advice that I am giving you. Go gently with yourself, float through your days don't fight through them, give yourself all the reasons why you don't have SS many times during the day if you have to beginning with you are not a woman and you are not over 40.

Hang in there. Trust me, you are going to be fine!

Mom Dor
armchairlinguist Posted - 03/28/2008 : 16:22:21
Actually it is. :) stanfr, I believe, had psoriasis and was able to get rid of it.

How long will it take you of having TMS-equivalent symptoms to realize you have TMS and stop thinking physical?!

--
It's not 100% belief that's required, but 100% commitment.
johnaccardi Posted - 03/28/2008 : 15:32:57
Thanks Armchairlinguist, I know what you say is true about being able to live happily with a chronic disorder. It just might take me some time to genuinly realize that. Thank you for the encouragement.

I found out that the rash I have is called Psoriasis. This kills me because Psoriasis is directly related to autoimmune disorders. I had never seen this name before so it concerns me that it is not TMS. If I had read about it, my mind would have known what symptom is related to Sjogren's and could have picked Psoriasis, but because I had never heard of it, I worry. It's like every time I come close to dimissing the thought of Sjogren's another symptom hits me or my mindset changes, when will this end? Could the Psoriasis simply be another TMS equivilant, it would seem to me that this would be a nearly impossible coincidence.

Thanks for the responses
armchairlinguist Posted - 03/28/2008 : 14:59:09
John, don't worry. It is hard to realize that your brain is going over and over on the same stuff. That's the distraction at work. Realizing the amount of repetition may help you realize how little it makes sense to obsess on it that much. And I can assure you you are not the worst case of this on the board. :)

I was going to expand a little on what I said about chronic autoimmune disorders not necessarily making life miserable. I have a friend who has had rheumatoid arthritis since she was 13 (for 13 years now, half of her life). I have known her since shortly after she was diagnosed. It also is a chronic, progressive autoimmune disease. I believe it may be one that Sarno thinks there could be emotional involvement with, but that's beside the point here as my friend has no experience with that. For her it's a physical problem.

It can cause very bad pain and swelling of the joints to the point of near-immobility. She's been on and off various strong medications, and even just during the few years of high school it went from only her knees to infest most of her peripheral joints (shoulders, hands and fingers, etc). We used to play in a band together and sometimes she couldn't play because her joints were too swollen to move properly. Writing or typing were also sometimes difficult for her.

Her doctors recommended that she stop skiing and playing softball because those activities are hard on the joints. This might have been good medical advice -- I can't really say -- but she did not want to do that because she liked to do those things. So she continued, though with reduced intensity.

We are not close anymore but I do see her regularly. She doesn't seem happier or less happy than I am. We have many of the same concerns (being of similar ages, backgrounds, and professional standings). She is still fairly active, goes to the gym, travels, has tried scuba diving, rides a motorcycle, etc. I don't know what her pain levels are, but she is still on various medications. But I have always admired the way she does not let this disorder rule her life or even interfere with it very much, though there are certain things she doesn't or can't do. She hardly ever even mentions it, except if it is on topic (medication costs when insurance coverage changes, for example).

So whatever happens (and I maintain it is unlikely you have Sjogren's -- TMS is far more common), you are probably not headed for a lifetime of misery. Go see a counselor and see if you can't sort out some of the emotions and see how you feel thereafter.

--
It's not 100% belief that's required, but 100% commitment.
johnaccardi Posted - 03/28/2008 : 11:16:47
Sorry for posting so much of the same thing, I didn't know this forum was such a small, tight community and that the same people would be coming to repetedly read all of my similar posts. Your advice, mizlorinj, on "toughing it out" and being tough is good advice. I am an amateur boxer so I know how to take a punishment physically and keep moving, now I just need to learn how to fight mentally. Thanks everyone.
mizlorinj Posted - 03/28/2008 : 06:57:46
I feel we have shown compassion and kindness with the many, many suggestions we have made to John's questions--they seem to be the same questions over and over again with the same answers given over and over again. There comes a time where it is time to set loving limits with yourself and others--which also means getting "tough". Therefore, tough words (or those that could be interpreted as tough because they are difficult to hear) need to be spoken in a gentle way. I speak from experience as a parent.
Dr. Sarno does not see patients who will keep bringing up the physical aspects. In fact, you are interviewed briefly on the phone with him before he will even see you. Therefore, he has his limits too.
John, I do hope you find what helps you. I know we all wish you well as you make your way through your symptoms.
-Lori
PS--Emotions (ok, "stress" is used often) cause(s) up to 70% of ailments. It was in the Parade section of the newspaper a few weeks ago, not to mention myriad other places. Therefore, if 70% of ailments are emotion-induced, 70% of ailments ARE indeed TMS or its equivalent (and some think that percentage is understated).
johnaccardi Posted - 03/27/2008 : 20:46:03
Dor, you really are like a mother to me, haha. Your post here is 100% true in my eyes, Thank you.
Dor Posted - 03/27/2008 : 17:29:09
Gently, go gently in all things. I don't believe that Sr. Sarno thinks that we should be so difficult on ourselves or on one another. What works for one may not work for another - ie journaling or just moving past. Sometimes a diagnosis from a conventional doctor is needed before one can move on to acceptance - in fact, Dr. Sarno suggests that! One can not safely assume that it is TMS nor can one safely assume that it is a serious illness until certain avenues have been explored. I tend to think that John is suffering from stress and the first year at college, however, until he can accept that it may be necessary to relieve his mind as to not having SS. There is nothing wrong with ruling out all avenues, coming away with a difinitive diagnosis, and dealing with that dianosis or understanding that it is TMS and working on that. It bothers me at times that some people are so vehement on TMS while the writer may just need compassion, understanding, and a difinitive diagnosis. Woould Dr. Sarno suggest less?

Dor

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