| T O P I C R E V I E W |
| Colleen |
Posted - 05/12/2005 : 12:04:55
Hi Everyone,
Just got back from visit #2 to the TMS Doctor. It has been 6 weeks since my first appt. I have done all the reading and journaling and "thinking psychologically" and even listened to some CD's.....anyway, I have had no improvement in 6 weeks. The TMS Doctor has decided it is time for me to go back to Neurology....at a different Hospital this time. The lack of any improvement has him wondering if it is a neuropathy after all.....of which, even he admitted there is no "cure". He also said that the TMS diagnosis does not work for everyone. I see the Neurolgist in about 6 weeks !! Soonest appt. I could get.
Colleen |
| 20 L A T E S T R E P L I E S (Newest First) |
| Colleen |
Posted - 05/19/2005 : 09:49:20
Jackie,
When your Dad got sick, you mentioned you had to be the "care giver". Do you still have your Mom? What type of a relationship do you have with your siblings and how did that effect your pain?
Colleen |
| Colleen |
Posted - 05/19/2005 : 09:44:27
Laura,
The power of the mind is amazing....you are right about that.
As for my Mom....yeah, she was the best and I was blessed to have her.....but remember, I do not have my siblings and my husband has no one on his side. My children have no cousins they can ever see, even though my sister has 3 daughters about 4 miles from me! I still have my Dad and I love him very much, but, simply put, he is not my Mom and he too is struggling with her gone. He has just bought a second home for the winters whenever he retires.....whenever that is. He doesn't tell me a lot and I even found out about this second home by accident. It is way down south (not Florida) and he knows I am upset about all this and so we "pretend" now like it doesn't exist. I do not expect an invitation down there.....so when he goes down there and my kids (like yours) are off doing the million things teenagers do and my husband is off at work or travelling for work, I will have to learn how to be with myself.....that is something I never learned, because Mom and I did everything together. I was just thinking about that the other day.....her solution to ease my pain or my anxiety or whatever was bothering me, would be to come over and eat something sweet with a cup of tea and just chit-chat. You won't find that in a medical book, but it worked !
Colleen |
| Laura |
Posted - 05/16/2005 : 20:40:30
Just to reiterate the power of the mind, I wanted to share something. Last week, I was knee deep in stress - dealing with my daughter's school about a bullying incident, working on all the bat mitzvah plans (3/12 weeks away now!), and just dealing with all the regular "stress" that is part of life. I was getting dizzy so much that I was starting to believe all over again that there is something "structurally" wrong with me - with my inner ear. Then, I got out my books and started at square one. It's amazing! I haven't read that much and already I'm feeling better. This morning, I was walking in the bathroom and I thought "I haven't been dizzy all morning." A second later, I was dizzy. I just started laughing, out loud. It's funny already. I've kept busy all day and if the dizziness has happened, I have tried not to give it too much attention in my mind. Ahh, the power of the mind is such an amazing thing!!!
Laura
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| Jackie |
Posted - 05/16/2005 : 19:00:19
Colleen,
The original diagnosis was Arthritis in my hips...that was about 8 years ago. The Dr. admitted that the damage to the hips was minimal compared to the discomfort. I have been through the circuit of doctors visits. I always expect that the next appointment will find the "cure" No one really listened to me. No one addressed the fact that the pain was more in my muscles than joints...refered pain they said.It really got worse over the last two years.My Dad got sick and went through rounds of hospitalization...rehab...back home. I was the care giver. I had to take on my siblings to perserve his independance...it was an awful time. This sounds like many people on this site. Your doctor does not sound like he really follows Sarno. He gave up to easy. I am back to the book...today has been about the same...but I am hopeful things will get better. I hope that you can continue to work on the book and put the upcoming appointment out of your mind. Keep working!
Jackie |
| Laura |
Posted - 05/16/2005 : 09:52:42
Colleen,
I just read what you posted and it made me cry. You are so lucky to have the years you had with your Mom. She sounds like a wonderful human being. I cannot imagine my Mom saying things like that. I got the complete opposite. Even to this day, I'm the one doing all the phone calling to talk to her and she's the one always saying she's "too busy" to talk to me. It hasn't changed in 45 years! I have always needed her way more than she needs me, that is for sure. The sad part is, when my kids were young and needy, it's almost as if that void were filled. Now, I barely see them with all of their social activities. They just want to go places with their friends 24/7. It's hard. I only saw our 15 year old daughter for dinner last night. She was doing something with various friends all weekend long. You made me realize that that's where a lot of my anxiety and sadness is coming from. It's like - I have no parents and my kids don't need me so much anymore. That is a tough pill to swallow.
I'm so sorry for the loss of your mother as she sounds like the mother I wish I had had. I hope you see some improvement soon. I am reading Healing Back Pain, all over again, starting from square one. It helps. I am so busy right now with all that's going on but I will make time for it because I think my life depends on it. I've only gotten through the first couple chapters but I figure if I read a little every day and do the work then I will beat this.
Take care.
Laura
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| Colleen |
Posted - 05/16/2005 : 07:34:24
Laura, Holly and Alinnyc,
Thank You all for your supportive responses. I sit her tired and feeling the pain this morning, but thankful for all of you.
As I said to Jackie, I do think that something physical could have caused this pain, but I also do believe that the pyschological is making it worse. The high stress in my life has been non-ending for several years now; between Mom's illness and death, my own surgery and continued adjustment to this "sudden surgical menopause", my sibling pushing me aside for unknown reasons, worrying now about my Dad who is alone and by the way has just bought a second home way down south, without telling any of us as I guess it is some "survival plan" for himself as his lonliness without my Mom is so great.....I found out by accident and of course, my own family issues with husband, children and financial.
I brought flowers to the the cemetary for my Mom yesterday right before the cemetary closed as we had been out of state all day. I talk to my Mom there, though I do believe she is in a much better place now. I asked for her help, for her strength. She always was the one who told me that I was "stronger than you think you are".
She had so much faith in me....more than I have in myself.
Colleen |
| Colleen |
Posted - 05/16/2005 : 07:14:00
Jackie,
I have had an exhausting weekend and I am tired and my feet and legs do hurt, but I read and reread your post. I am a fighter and I am willing to give it another try, but I think I need to try and change my approach....maybe not "try so hard" and watch my focus. My oldest daughter was a youth volunteer at the MA state Democratic Convention this past Friday night and Saturday and I was caught up in her excitement. She got me in to see Ted Kennedy and Howard Dean speak and to meet them. Yes, I was in pain, but at that point it was not my central focus. Then Sunday, we were off to CT as a family for an American Kennel Club Dog Show competition (both our kids show in Junior Showmanship) and again, I was in pain, but I found it was not my central focus of the day. Now of course, we cannot have these types of busy, exciting things happen every day, but even with the pain still there, I need to watch were my focus is.
As for the anxiety....you are so right. I have had this anxiety for a good 20 years.....some years it is quiet and other times it is bubbling over !! A Doctor doubting his diagnosis with me is sure to bring on the anxiety. I do think there is some physical thing going on but I will admit that pyschological factors have made it worse. Again, this feet pain (neuropathy, they say) came on 6 weeks post-op from a total hysterectomy which directly followed my Mom's death from ovarian cancer. I understand why my Doctor is sending me back to the Neurologist.....but that is what makes me anxious !!
I hope your leg pain resolves. What was your initial diagnosis for this pain??
Colleen |
| Laura |
Posted - 05/15/2005 : 15:02:19
Reading this thread reminded me of something that happened years and years ago, when my kids were young. My daughter was about 3 years old and she woke up one morning and she couldn't stand up on her one leg. She cried that it hurt and this went on all morning long. Finally, I called the doctor (a new pediatrician we had just started going to because of insurance) and I took her in. The doctor said "I think we're dealing with an autoimmune disease here. I think she has something like Lupus." Mind you, I also had a young baby at the time (my younger daughter was only a few months old) and the stress of thinking my precious 3 year old child had an "autoimmune disease" was unbearable.
I came home and I immediately called my husband's cousin, a doctor fresh out of medical school. He said the pediatrician was off his rocker and that the chances my daughter had an autoimmune disease were slim to none. I then spoke to my brother-in-law, also a physician, who said the same thing. After a couple days, whatever it was completely went away. A friend of mine took her son to the same pediatrician about a year later and guess what he told her? That he thought her son had an autoimmune disease (must be one of his favorite "diseases" to diagnose). The man is a quack!
Just because someone has gone to medical school doesn't always make them right. I know plenty of physicians who have misdiagnosed either myself, my family, or my friends. My 12 year old had pneumonia last year. The pediatrician (a different one) told us she had some simple virus and that it would go away. Mind you, she had a fever of 105 for five days straight. We called my brother-in-law and he said "Did they do a chest x-ray." They had not. He said "You can listen to the chest till the cows come home but the only way to rule out pneumonia is with a chest x-ray." We insisted they do a chest x-ray, and then the idiot doctor didn't even wait for the radiologist to read it. She read it and said, in a mocking tone of voice, "Your daughter is fine. I looked at the x-ray and she doesn't have pneumonia." She then went on to tell me that my brother-in-law doesn't know what he's talking about and that he's being overly cautious because he's an E.R. doctor. We walked out of there and drove to another pediatrician. He spoke to the radiologist and it was confirmed my daughter had bacterial pneumonia of the left lower lobe of the lung. She could have died. It was really bad!
I had one doctor tell me I had labrynthitis, even though you cannot see the inner ear so there is no way of actually knowing this. They told me my dizziness would be gone in three weeks. Three weeks later, it was gone! Then, I went on the trip to Cancun three years ago and the dizzy thing started up all over again. Nobody told me a particular time line of when to expect it to be gone. However, I did read about a horrible condition known as Mal de Debarquement syndrome, where there is no cure and where the dizziness can last for years and years. Guess what, I've had it for three years. The power of the mind is amazing. That's where Dr. Sarno's philosophy comes in. You need to read the book, re-read the book, and then read it again. You need to think psychologically, because I've gotta tell you, I think 99.9% of what happens to us is induced by the brain. I swear!
Anyway, just reading about this TMS doctor reminded me of that story and I had to share.
Laura
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| Jackie |
Posted - 05/15/2005 : 14:37:21
Great insights... It is amazing, if I look back at other postings we are all saying the same thing. Complete strangers that have had the same experiences...just like when I read Sarno's book and saw myself on every page. Yet after a short time I guess I did get impatient and give up.After being miserable for two days I realized how much progress I actually made. This forum is really helpful...I couldn't do it without all your support..Thanks! I am back to the book.
Good Chi to all
Jackie |
| alinnyc |
Posted - 05/15/2005 : 10:41:57
Colleen
Read your post. My heart goes out to you. I very much agree with Dave's posts. The timing of your symptoms makes it sound like a clear case of TMS. At the same time I completely understand your dilemma. The tough thing is,that if it is TMS then by going down the other road, or by having doubt, the cure won't happen. I wonder if Dr. Sarno would talk to you about your case. Would it help to call him and tell him about your experience and the diagnosis of the doctor he recommended.
Doctor's give bad advice all the time and it is way to important to get wrong. The mind is a incredible and powerful force. If the hurt is deep it may resist to give up its defenses. You've endured an awful lot and the defenses my be significant. Best of luck in getting well. |
| holly |
Posted - 05/15/2005 : 08:38:12
Colleen,
It seems like everyone pretty much said what I said to you in my email. (I only came on the board to check to see if their responses were like mine, to your situation) I dont "read" posts anymore because I found that if someone said "dizzy" I would start feeling fuzzy etc. The brain overpowers all! My husband told me something VERY interesting. He reads alot of science mags. etc. and told me there are people who had their leg/legs amputated and still felt extreme pain in the leg that was gone!! Now go figure that!! See what I mean??????????
P.S. I new that Dr. wasn't a REAL TMS Docter. |
| Laura |
Posted - 05/14/2005 : 23:15:27
Hi, everyone,
Jackie, I agree with you. Colleen, I've been plugging away at this TMS stuff for nearly a year. I had started to make some real progress. There were days when my dizziness was so light I could definitely see it weakening. Then, I started developing other "equivalents," which included mouth sores, stomach distress, a weird burning sensation in my thumb, you name it! Most of those problems are gone but with all the stress I've got going on (daughter's bat miztvah is one month from today - 150 guests and huge party - plus my daughter has been bullied at school and I've been fighting with the school and district all week) my dizziness has come back in full swing. Jackie is right. All three of us need to take out our books (I already have!) and start all over again. Dave is also right. It can take a long time before you see any improvement. Some people make progress faster than others. Perhaps we just have so many deep seated emotions and so much anger that we have to chip away at that it might take us longer. It doesn't mean we won't get there though.
Colleen, is there another TMS doc in your area? I say pull out your books and start reading all over again. That's what I'm doing. I noticed I felt the best when I was reading the books and highlighting what pertained most to me. Listening to Dr. Schechter's CD's helped a lot too.
Also, Colleen, be patient with yourself. You have been through so much, what with the loss of your Mom.
I'm so thankful we have this forum and each other to talk to. Thanks, Dave, for making that possible. Reading on this forum always gives me hope. It's the light at the end of the tunnel.
Laura
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| Jackie |
Posted - 05/14/2005 : 22:19:43
Hi Colleen,
It's been about three months since I've read Dr. Sarno's book and
I'm sitting here at midnight...because my legs are killing me and I can't sleep. I know what happened to me...I stopped really working on my pain and then it started to flare up...and doubt crept in. Now I'm back where I started. The description of your problem sounds like it came out of Sarno's book....classic TMS.The Dr. you saw sounds wishy-washy to me. Just what an anxious person needs...someone who is not sure! Anxiety is worry...and worry leads to doubt...and doubt leads to failure. I know that the minute I started thinking...what if this pain is really something dangerous, I lost all of the progress that I made. You have six weeks before the appointment with the neurologist...if you spend that time waiting for the "real" answer from the next doctor, you haven't a chance in making progress. I guess that answers my question as well...I need to begin again.Why don't you give it another try...let's see where we both are in six weeks!
Jackie |
| Colleen |
Posted - 05/13/2005 : 13:14:49
Dave,
Thanks for your reply.
Maybe I was trying to hard and then I let the doubt in.....however the TMS Doctor seeming doubtful didn't help either. The thing with my feet pain is that it is always present 24/7.....and worse the more I stand or walk.....or for some strange reason, when I go to bed and the covers touch my feet.
Colleen |
| Dave |
Posted - 05/13/2005 : 08:42:06
quote:
Originally posted by Colleen
Dave,
Do you believe the statemet that "TMS does not work for everyone"?
I keep hearing the Doctor saying that. Did he doubt from the onset that my case was TMS ?
I'm not sure exactly what he means by "does not work." Is he referring to the diagnosis, or the treatment?
Of course there are chronic pains that are not TMS. But there are clear patterns that provide clues (pain comes and goes, pain moves to different locations, common TMS-prone areas are sensitive to palpatation, etc.). Someone's personality often gives the biggest clues, since many TMS patients share similar traits.
Assuming he's referring to the treatment, then I agree completely. There are some people that cannot accept TMS. Visit one of the fibromyalgia forums and you'll see a perfect example. Acceptance of TMS requires a keen insight, one that many people are unwilling or unable to make. Many people dismiss the concept because they feel as if "they are to blame" for the pain, or that "it is all in their head." Many people need the pain because the psychological issues that it is distracting them from are too difficult to face.
Assuming that you have been completely honest with yourself, that you really do believe in the TMS concept and that the diagnosis applies to you, and that you have been trying your best to ignore the pain, resume physical activity, and explore the psychological origins, then you probably should have at least some signs of relief within 6 weeks: one day where the pain is a bit less, a few hours here and there where you forget about the pain. However, some people experience exactly the opposite: more pain, or pain in different places. This is TMS fighting back. This often occurs in people with deep rooted psychological issues.
Therapy alone is not helpful to TMS. It has to be with a TMS-trained therapist, or at least a Freudian therapist who is open-minded to the TMS concept. It is essential to connect the symptoms with repressed emotions.
Treating TMS is hard work at first, but over time it becomes second nature. I think it is part of a healthy lifestyle. Regardless of the symptoms, it is good to be aware that we are constantly repressing emotions and we should try to feel them as they occur instead. We should accept that psychogenic symptoms will appear from time to time, and should be treated like a "check engine" light on our dashboard. The light will go off if we address the core issues, or sometimes it will go off on its own if we just ignore it for awhile.
Maybe you were trying too hard at fighting TMS. That can definitely happen and cause treatment to backfire. Still, I believe there is a strong possibility TMS plays a role in your pain, and you shouldn't give up in 6 weeks. For me it took over a year. |
| Colleen |
Posted - 05/13/2005 : 08:06:51
Molomaf,
I really appreciate your opinion on this. I now have a great deal of fear that it is something that will never resolve.....but I guess I will have to figure out how to live with it, one way or another.
I will let you know what happens.
Thanks,
Colleen |
| molomaf |
Posted - 05/13/2005 : 07:46:56
Colleen
I think that some pain syndromes are very hard to diagnose and you tried the TMS diagnosis first. But I would be doing exactly what you are doing and ruling out that it could be something real.
There are the rare occasions that it isn't TMS and when it has been going on as long as it has for you, then it is time to get a traditional medical opinion. When that turns out to be inconclusive, you will know that it IS TMS. Can't hurt to do the work anyway.
I saw the same TMS doc and he said the same thing to me - that Sarno is a genius but he is wrong sometimes. No one can be right all the time! I think he is talking very small percentages here and for the most part he and Sarno are on the same page.
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| Colleen |
Posted - 05/13/2005 : 06:44:12
Thanks Mary. I agree that he is not "pure Sarno"....he even said that to me on my first visit.....something about, he thought Dr.Sarno was a genius, but did he "get it all right"...."no, I don't think so."
I will go to this new Neurologist in about 5 /6 weeks and take it from there. Not sure what else I can do.
Thanks!! And all the best to you !!
Colleen |
| marytabby |
Posted - 05/12/2005 : 18:34:48
I felt confident but I also sensed that he is not a purist. He has a lot of agreement and not so on other ideas. He is not Sarno, that's for sure. I've not met or heard Sarno but I can tell you he is not totally die hard Sarno. I think since he's in my area I am happy I just got to see SOMEONE. I have a lot of footwork ahead of myself, so whether he can help me or not, we'll have to see. I just try to plug away as you do. I hope to God I'm successful. I wish you all the success in the world with this. It's hard work. |
| Colleen |
Posted - 05/12/2005 : 18:17:11
Mary,
You saw the same TMS Doctor that I did. I think a few of us suggested him to you. Did you feel confident about him; about his diagnosis?
Just curious.
Colleen |
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