| T O P I C R E V I E W |
| Carolyn |
Posted - 06/21/2004 : 21:35:06
So, I'm about 3 months in and I've been feeling much better though still very up and down but I have found that my attacks are much shorter than they used to be so I have been feeling very confident and sure of my TMS diagnosis though a little impatient for faster progress. But my gremlin seems to have called all out war on me this week. All of a sudden pretty much all of my TMS symptoms came back and all at once- my hip-lower back, mid back, wrist, foot, pelvic pain, anxiety and worst of all spasms in my anal sphincter which is causing me all sorts of trouble. My TMS is very smart and is throwing this last one at me because it is not something that can just be ignored. The fact that all of these things came back at once makes me confident that it is TMS but my gremlin does keep whispering to me that maybe it is some sort of strange whole body muscle disorder that has never been described. My gremlin thinks it can convince me of anything.
I have heard people say that when the TMS goes wild they think it means they are close to unearthing a key emotion. I have noticed that in the past couple of days, I can't seem to call up much to journal about whereas once I get going I usually uncover lots of stuff I didn't know I had. I have also been up yelling at my husband in my sleep again. So, has anyone actually had the experience that they got much worse just before some sort of breakthrough? Any suggestions on how to keep the faith?
Carolyn |
| 20 L A T E S T R E P L I E S (Newest First) |
| micia |
Posted - 04/15/2005 : 13:55:30
quote:
Originally posted by Carolyn
She thinks my problem is levator ani spasm and surgery probably wouldn't help that though it could reduce the general pressure and help a little. She also prescribed me ativan which she said has been helpful for levator ani syndrome. Also fiber -but I am really not constipated.
Carolyn
Carolyn,
I have been suffering from the same condition for almost 2 years now. My pain is trictly anorectal. I, too, have seen 2 colorectal surgeons, one gastro , one internist, several physical therapists specializing in pelvic floor/levator ani syndrome and currently an osteopath who has done acupuncture (7 sessions), injections in my coccyx area, in my levator ani muscle (vaginal access because he couldn't get to it from the rectal access), manipulation of the spine and all the muscles. I have been taking muscle relaxant like Flexeril, Hyosciamine and one antidepressant, Tradozone which supposedly is prescribed for chronic pain. My last injection (lidocaine + a steroid) in the levator ani was 4 days ago and my pain is worse now as the muscle must be irritated. None of the above seem to work and the only pill that does is ATIVAN and of course also Valium but the latter is too sedative for me and I have to drive to work and stay awake too. The antidepressant Tradozone works a little but it is quite constipating and my problem is just that. Although I am not constipated, just passing the stools every morning (even soft) starts the spasming of the levator muscle; not right away but within 30-45 minutes later. No problem lying down and sleeping at night and when I wake up in the morning I am fine too but the spams start after I have a BM and will last all day, worse when I sit at work or stand up, better when I walk. Heat is a great relief. I sit on a heating pad (even in the summer) and sleep with a heating pad rolled up like a hot dog and placed between the "crack" (a doctor suggested that). I am desperatly waiting for someone who has come up with a complete relief or solution to this problem!! |
| micia |
Posted - 04/15/2005 : 13:38:05
quote:
Originally posted by Carolyn
Thanks everyone for your input. I went to visit the colorectal surgeon today and she also advised against surgery- so what's that old adage about don't aska surgeon if yo uneed surgery? I told her I thought my problem had a psychological base and she was receptive to that idea. She thinks my problem is levator ani spasm and surgery probably wouldn't help that though it could reduce the general pressure and help a little. I found that I have been able to get it under control this time (at least for now) by constant appication of heat and I am hoping that knowing that I will not need surgery will help to relieve some of the fear I feel about this issue. She also prescribed me ativan which she said has been helpful for levator ani syndrome. Also fiber -but I am really not constipated.
Suzanne- I'd be curios to hear your friends experience in case the prospect of surgery comes up again.
Carolyn
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| skywalkerdude |
Posted - 06/24/2004 : 07:33:12
One of the things that I remember from my childhood was comments my mother would make to me. I was heavily involved in sports from an early age. During my Little League baseball years and beyond I was very competitive and always wanted to get to the field early. As I was trying to get my mom into the car so we could get there early she would say: "Don't get your bowels in an uproar" Well, eventually I came down with ulcerative colitis and had to have my bowels removed. Talk about mind-body!!! She continued to use phrases like this all throughout my childhood. She would even say things like "God is going to punish you" when I would do something that she didn't approve of. My mother to this day is hooked on prescription meds - Valium and other drugs due to stress, anxiety and conflict. I'm glad that I have realized the whole TMS thing before I "turn into her"
Mark |
| pault |
Posted - 06/24/2004 : 04:55:19
I was the most constipated person ever.I had/have a stalled system.The only thing that helped me is a diet loaded with veggies and fruit,it took time for the system to adjust,but is a non-problem now.I am sure all of this is due to childhood conflicts and I probably will never discover what they are,but this type of diet is the relief of a lifetime.Regardless of the slow system it will make life mush nicer! Hope this helps someone! |
| pault |
Posted - 06/24/2004 : 04:34:07
quote:
Originally posted by Suz
Goodguy,
I was very interested in your post - maybe the constipation you are experiencing is another TMS equivalent as the drugs are taking care of the back pain? It has to find something else to keep your attention. I have no hip/sciatic pain at all now after reading the book, going to the lectures and seeing Dr. Sarno. It has been 2 months and it is amazing to be pain free -However I have always had a problem with constipation and now that has got a lot worse - I think that it is a TMS equivalent. I have thought about doing colonics but am a little nervous about where to go. I live just outside New York in Connecticut - do you know how to find a good place? I do believe this would be a placebo effect for my problem and once I get down to the real emotional root, I will be free. However it would be marvellous temporary relief.
|
| Suzanne |
Posted - 06/23/2004 : 22:05:50
Carolyn,
Oh, no, I "met" Dayne while we both were going from msg board to msg board to newsgroups, looking for answers to our embarassing symptoms, years ago. Eventually, we emailed each other because we both had the most similar symptoms and concerns. And we both also questioned the same things. The other people on the boards or groups were very miserable and going for surgeries, or begging for them from dr.'s who didn't want to do them, or on more medications than anyone should be on. Some had devices inplanted to slowly drip morphine into them! We visited Coccydynia boards, Pudendal Nerve boards, Neurological boards from medical centers or universities, sites where people posted about Levator Ani Syndrome, Piriformis Syndrome - anything that described our symptoms. Newsgroups and Yahoo groups included.
It was much later on, 2+ years, that we found Dr. Sarno, both in different ways, but at the same time. Dr. Sarno diagnosed me 2 years, 2 months ago, and I completely accepted the diagnosis that day, and that day, my pain got worse and didn't lessen again for a very long time. Then after the lecture, it got even worse! Dr. Sarno said it was my mind fighting the information I'd learned, which I knew from what I'd learned in the lecture and the MBP book. Well, then I blew it. I was supposed to call him if I didn't improve after following the "homework" and I waited 6 months until I called to tell him I was still in the worst pain ever since hearing I had TMS. He was not too thrilled that I waited, of course! I couldn't believe it got so much worse after just an exam and office visit and then a lecture. It had never been so bad before. So he sent me to my TMS psychologist right away.
It sounds discouraging to know that I'm not one of the people who got better in months, but Dr. Sarno and my TMS psych. said I'm not out of the ordinary. My TMS psych. speaks with Dr. Sarno every Wednesday about all his patients, and discusses me. I sometimes get feedback from Dr. Sarno via my psych. I'm a "difficult case." It's hard to explain. I'm so overly conditioned/programmed it's insane. I catch myself every day! To undo all this will take time and I know it. They said I've had such a traumatic life from my gradeschool times until now that it's no surprise I got TMS, and Sarno said usually with people like me, it's far worse that mine is (the pain and debilitation), and the incidents were not just a few here and there, there's been many, and many VERY traumatic. And after the last few, I didn't react like I'd always reacted throughout my life. I sort of became numb. Repression, huh? I don't react normally to situations where I should get angry, or cry, or act out in some manner. I just seem to "shove it in my butt." I do sometimes explode emotionally, but not as normal as I should, or used to before TMS set in. I am now reacting more normally to things that anger me, i.e., last minute project dropped on me at work as I'm leaving - usually I'd just smile and say "ok, no problem!" and not think about it. Now I do get mad as hell and feel the emotions. And I'll say something now, too!
I can tell you this. I was given many examples of patients who are completely fine now that took longer than me to get better. And patients with pain worse than mine, people barely able to walk or dress themselves. One example he gave me was a man who took about 3+ years of therapy, was hunched over when he came to therapy weekly, could barely sit at all, and then had a huge breakthrough. He's OK now. He called my therapist to tell him he was so great now that at his daughter's wedding, he was one who held the groom up on the chair after the wedding (Jewish wedding).
And there are also the examples of the patients whom he saw for only a few months and that was it. Those are the ones I envy! But each person's experiences and life's deposits into the unconcious are different and maybe those people had easier or less issues, or their minds didn't fight them so hard, as mine seems to be doing. I don't know.
I get discouraged often, but then remind myself, this is TMS and people get well. The answer is in my head and I just need to keep at it. |
| Carolyn |
Posted - 06/23/2004 : 21:23:28
So there are even more people out there who have pelvis/rectum as a sight of TMS. Thank you for sharing your stories- every little bit helps remind me that this IS TMS. It is such a humiliating thing to have to deal with. I have often asked - in one of my 'why me?' sessions, why I couldn't have bad finger pain instead- something where I wouldn't always have to be getting undressed to show the doctor and using words to describe my symptoms that the prudish side of me really isn't at all comfortable saying. But the answer is of course that this site is the biggest distraction for my unconscious. And I also think that the anger (the 'why me') and the shame that I feel over this just builds up my pool of unconscious rage and makes it more likely that the TMS will continue.
Thank you Dave for pointing out to me once again that I have slipped into thinking of a physical cure for my pain- that habbit is just so ingrained that I don't even realize I am doing it until someone points it out to me here. I'm afraid that I do need the heat but I will be careful to think of it like pain meds - something that alleviates the symptoms but does nothing about the cause.
Suzanne, Your posts from Dayne were encouraging but at the same time when you said ' this goes back years' , I wondered have you known about Sarno for years and are still suffering the pelvic/anal pain on a daily basis?
Carolyn |
| Suzanne |
Posted - 06/23/2004 : 17:19:09
quote:
Originally posted by Carolyn
Thanks everyone for your input. I went to visit the colorectal surgeon today and she also advised against surgery- so what's that old adage about don't aska surgeon if yo uneed surgery? I told her I thought my problem had a psychological base and she was receptive to that idea. She thinks my problem is levator ani spasm and surgery probably wouldn't help that though it could reduce the general pressure and help a little. I found that I have been able to get it under control this time (at least for now) by constant appication of heat and I am hoping that knowing that I will not need surgery will help to relieve some of the fear I feel about this issue. She also prescribed me ativan which she said has been helpful for levator ani syndrome. Also fiber -but I am really not constipated.
Suzanne- I'd be curios to hear your friends experience in case the prospect of surgery comes up again.
Carolyn
Carolyn,
I'd been to many colorectal surgeons, and none wanted to do surgery for the spasms. All suggested the same yours did - heat, fiber (though I didn't and don't need it, I eat tons of vegetables) and also muscle exercises, tightening and loosening the anal sphincter...which didn't help. And like I said previously, Valium was suggested by one, similar to Ativan, but Valium is supposedly the only one that helps with muscle spasms (from that family of drugs)
Every surgeon but one made the comments suggesting it was my personality type, the anxiety, stress, etc. None made any reference to anything like a psychosomatic disorder or somatization, just the comments about being too wound up, uptight, high strung, and I'd reply that they'd be that way, too, if their butt was in a knot all day and night and that I wasn't like this prior to "the knot in my @ss" (or the feeling as if I'm sitting on a rock).
This was all BEFORE Dr. Sarno and TMS.
The friend who had the sphincter surgery. Well, the surgery supposedly went fine, but she said ever since, she needs to be near a bathroom. She has very little control. She said to me "if only we could trade a little of our problems, a little of your spasms for a little of my overly loose sphincter." She said sometimes she can't hold the muscle at all and accidents happen. That's why I said NO! when I posted from work. The mere thought scared me. I'm sure some people do fine after, but she surely didn't.
For a while, I kept in touch with a guy named Dayne, who had the same symptoms as us. He'd have bad weeks to months, and periods where it was practically gone for a long time.
He'd gone for more tests than I did. Here's an example to show you how he, after even going to the Mayo Clinic, knew TMS was it.
"Posted by Dayne on July 02, 19102 at 13:07:02:
In Reply to: Re: levator ani. syndrom posted by lois cline silverhill, al 36576 on June 18, 19102 at 14:47:44:
I have had this for years! And I will tell you what...it all comes down to stress and tension. Yes, internal treatment and injections will help for a while. But if you don't get to the true anxiety or internal stress...it will come right back. Trust me...I've been to the Mayo Clinic many times and seen many doctors and have had everything from pudendal nerve injections, levator ani injections, internal treatment, MRI's, CScan, biopsy of the levator muscle, meds, electrical stim internal and externally, sacroiliac joint treatment, chiropractic, etc. And guess what helped me the most for the long term? NONE of the above. Doing nothing helped the most. I had to change the way I viewed my pain and my focus on it. I would HIGHLY recommend Dr. Sarno's books on TMS. Levator Ani Syndrome is a form of TMS.
Those books changed my thinking and helped me greatly! It is not gone for good yet, but it will be. I have had relief up to nearly 90% for extended periods of times and the flare ups don't last as long and are not as intense. It has helped me more than any treatment and I finally feel like I will beat it!
Best of luck!
Dayne"
Dayne and I compared "notes" while trying everything possible before we both came upon Dr. Sarno's books. This goes back years! And once we found Dr. Sarno, I realized what we had. He was first still going to try other things, and did, but then even he said "You're right." Soon he was posting all over telling all these boards about Sarno. (and getting bashed. LOL)
BTW, I drove home from work today and it took almost 2 hours, almost twice as long. I was dying in pain. I think just the frustration of traffic and my annoyance with it made the pain worsen. Same thing happened yesterday. I was in pain, but not BAD, until getting stuck in construction traffic on the way to my docto's appt. knowing I'd be late or miss it. Anxiety kicked in and then my butt got so bad I was squirming the rest of the way. The Psychiatrist (go to him for the Klonopin) said "you got so worried about missing the appointment, stressed out, that of course your pain worsened."
If I were to go away on vacation tomorrow to some tropical island, my pain would go away totally. THAT even makes me feel anger and anxiety, because then I'm angry that I can't figure out what causes it HERE and NOW. |
| Suzanne |
Posted - 06/23/2004 : 16:44:47
quote:
Originally posted by skywalkerdude
I read last night in Sarno's book MBP that ulcerative colitis is the ultimate mind body illness.
Just a comment - if any of you watched "The Soprano's", then you know that Adriana had ulcerative colitis, and it was all due to her massive stress and anxiety over the situation she was in with the FBI and Christopher, etc., but she couldn't tell anyone why she had it.
A fictional character had a mindbody illness. |
| Dave |
Posted - 06/23/2004 : 16:27:39
quote:
Originally posted by Carolyn
...I found that I have been able to get it under control this time (at least for now) by constant appication of heat and I am hoping that knowing that I will not need surgery will help to relieve some of the fear I feel about this issue....
I understand you have to do whatever you can to alleviate the discomfort. But beware not to condition yourself be reliant on physical treatments.
I am convinced hemorrhoids and related problems can be TMS. A friend of mine just went through major surgery for anal fissure, including cutting the sphincter muscle. Hers is an obvious case of TMS. After years at a comfortable job that she loved, she started a new job this year. It has not agreed with her. She and her boss do not get along. She hates the job. On top of that she just turned 40, and realizes she will never have a child. All this on top of her "everyday" stress of being the breadwinner in her family due to her husband's inability to hold a steady job. |
| skywalkerdude |
Posted - 06/23/2004 : 14:36:48
This is my major issue as well. Chronic pelvic/prostatitis pain. However, my colon AND rectum were removed back in 1987 due to ulcerative colitis. Didn't really have any pain until 1997 after alot of bike riding. Ever since my rectum was removed early on I had phantom pain as if I was having a really large bowel movement. This was obviously spasms in the area where my rectum was removed. I know this is really weird talking about that area of the body but I have a constant burning pain where my rectum used to be. It seems to get worse during times of stress. I am totally convinced that it is tension in this area and I continue to read the books and try to think psychologically. I read last night in Sarno's book MBP that ulcerative colitis is the ultimate mind body illness. That basically convinced me that my pelvic pain/prostatitis which really has nothing to do with my prostate - recently had a PSA done and it was .4 which is super low. It's all related to the stress and tension in my life and how all of it is related to the surgery and tension that was created in my life years ago. One important point that will help out. Back in 1993 I was laid off from my job and this created significant stress in my life. I ended up on anti-anxiety meds for about 5 years. It was very difficult to get off of them but I succeeded. About 3 months before completely weaning myself off of them - I think I was on a "half" a tablet - very small dose since it was difficult to stop cold turkey - the pelvic pain hit big time. Looking back the anti-anxiety meds probably allowed those muscles to relax and them when the dose was "low" enough the tension hit.
A long way to say that tension can and will hit the rectum and pelvic area as long as we focus on the pain.
Mark |
| Carolyn |
Posted - 06/23/2004 : 13:34:01
Thanks everyone for your input. I went to visit the colorectal surgeon today and she also advised against surgery- so what's that old adage about don't aska surgeon if yo uneed surgery? I told her I thought my problem had a psychological base and she was receptive to that idea. She thinks my problem is levator ani spasm and surgery probably wouldn't help that though it could reduce the general pressure and help a little. I found that I have been able to get it under control this time (at least for now) by constant appication of heat and I am hoping that knowing that I will not need surgery will help to relieve some of the fear I feel about this issue. She also prescribed me ativan which she said has been helpful for levator ani syndrome. Also fiber -but I am really not constipated.
Suzanne- I'd be curios to hear your friends experience in case the prospect of surgery comes up again.
Carolyn |
| goodguy |
Posted - 06/23/2004 : 12:57:01
Suz,
Obviously, Fox is not a proponent of colonics. I won't try to sway you, but can only say I think they are wonderful. I am definitely not suggesting that they can cure TMS!
As for me, I can't say if my current constipation is from TMS, or is just a side effect of the medication. My back pain is quite severe enough to distract me from any thoughts of anger, so I see no reason why I would need this additional distraction. If it is TMS, I guess I will know that once my pain subsides and I am off the medication.
I'm sure you can find many places offering colonics in Conn., if not in the city. Try the web. I found a great place where I live on Long Island. I guess, just use your best judgement and look for a place that has new, professional equipment and makes you feel comfortable. You might ask at you local health food store. Good luck.
Glad to hear that you are pain free! Hope to be joining you soon! |
| Suzanne |
Posted - 06/23/2004 : 10:10:53
Carolyn,
I'm at work and can't reply really now, but i just read your post and all I can say is...
DON'T DO IT!
PLEASE try everything else! It IS a TMS spot!
I don't want to or mean to frighten you, but I personally know someone, a dear, close friend, who had this done for another reason, and the doctor said it wouldn't effect anything, and it DID.
Will try to get online tonight. Office & forums - bad  |
| tennis tom |
Posted - 06/23/2004 : 09:36:19
To Carolyn,
I would think long and hard before doing anything as drastic as having your sphincter muscle cut surgicaly. You may be making a relatively short term TMS problem into a life-time problem. You have a problem now but you may have an even bigger one after surgery. If your constipation isn't life threatening, keep reading the books, see a TMS doctor.
Are you getting enough exercise? I find if I get enough exercise, that my digestive system functions very naturally. |
| Fox |
Posted - 06/23/2004 : 09:23:25
Look at www.quackwatch.org regarding colonics or colon hydrotherapy. |
| Suz |
Posted - 06/23/2004 : 07:47:14
Goodguy,
I was very interested in your post - maybe the constipation you are experiencing is another TMS equivalent as the drugs are taking care of the back pain? It has to find something else to keep your attention. I have no hip/sciatic pain at all now after reading the book, going to the lectures and seeing Dr. Sarno. It has been 2 months and it is amazing to be pain free -However I have always had a problem with constipation and now that has got a lot worse - I think that it is a TMS equivalent. I have thought about doing colonics but am a little nervous about where to go. I live just outside New York in Connecticut - do you know how to find a good place? I do believe this would be a placebo effect for my problem and once I get down to the real emotional root, I will be free. However it would be marvellous temporary relief. |
| goodguy |
Posted - 06/23/2004 : 05:12:49
Don't know if this will help you, but I figured it couldn't hurt to mention it.
My pain is mostly lower back, but since I have been taking strong narcotics to control it, I have been constipated for months. Recently, I started a series of colonics (colon hydrotherapy). I find that it allows for an indcredible release, not only of toxins, but of emotional stress. I always leave feeling ligher, happier, and in less pain (temporarily).
I find it helps me move on from a period of negative, hopeless thinking, and frees me up to think psychologically in a more productive manner. It's a great way to release toxins from the mindbody.
If you are having a period of acute pain, it may give you some temporary relief. |
| Carolyn |
Posted - 06/22/2004 : 22:00:59
Suzanne,
It is so helpful to me to know that someone else has these same symptoms (though I am sorry that you are suffering too). I think TMS uses the pelvic/anal problems in me because they definitely get the most attention from me. Because it is a particularly humiliating location, it gets the biggest emotional response. With the rest of the pain, I can ignore it but my anal spasms make it really hard to go to the bathroom and you really can't ignore that. I have recurrent anal fissures which are really really painful and then the muscle itself just spasms at other times which is also very painful. This last time when it came on I could feel the old familiar pull in my right hip - like it is tight and restricted as well as painful and a pull on my coxcyx as well. I have been diagnosed with many of the same things you have. I have done the biofeedback for the pelvic pain, I have had two botox injections- one in the levator ani and one in the internal sphincter muscle but they were only a little bit helpful. The next step is to have the sphincter muscle cut to relieve the pressure, something I really don't want to do. So of course I am having a fearful, emotional reaction to this!! I have an appointment with a doctor (colorectal surgeon) tomorrow. I know I should be thinking psychological and I am trying - journaling and reading here and I have been walking while listeneing to Schecter's tapes- am also trying some meditation for relaxation. I am not seeing a psychologist and hope I don't have to (I just don't know how I would carve out the time). I do think that there is something nagging at me but I can't get at it with the journaling. Do you know when you have a breakthrough, do you become consciously aware of what was bothering you or can you work it out subconciously or in your dreams.
By the way, my pain doesn't bother me when lying down, some when standing and a lot when sitting. Sitting at the computer and driving the car is the worst. One thing that I have found does help to break the spasm is that I get some Thermocare heat wraps and just stick them in my underwear back by the coxcyx and just wear them constantly for a few days.
Thanks for all your input!
Carolyn |
| Suzanne |
Posted - 06/22/2004 : 17:46:53
I meant to say that I found a few people who suffered our same symptoms, found Dr. Sarno's books, and after weeks to months/years, posts they were completely pain-free in the pelvic and anal/rectal areas, AND the back pain if they got it occasionally.
Where they posted, of course, were places that then didn't want to hear about Dr. Sarno at all. |
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