Newbie needing help!

Hi all

Boy am I glad I found this forum!

I will introduce myself and tell you my story - sorry it's long!

I am a 38 year old mum of 2 from the UK. I started suffering back and leg pain for no reason in spring 2009. I just woke up with it one morning.

The usual tests followed and I was diagnosed with a large central bulging disc at L5/S1 with an extrusion to the left which was impinging on both S1 nerve roots. I was offered surgery when it didn't settle but I refused - I did my research and found out it's not actually that successful.

The pain went in the autumn and I didn't think much more of it. Then in spring 2010 it came back mildly and abated again in the autumn.

Last year it came back with a major vengeance (also in the spring lol) and I was in crippling pain this time, right through my lower back, backside, tailbone, hips, legs etc. I couldn't shift it no matter what I did

I had another MRI which showed the same as the original one so nothing new. The doctor said I must have re-injured myself but I hadn't done anything to set it off again. Again I was offered, and refused surgery. And again it settled down in the autumn.

The guess what happened? It came back again last month although the pain isn't as bad this time. But the difference this time is I have become terrified that I am on the downward spiral to surgery. I am so afraid that the disc is going to compress my bowel and bladder nerves and make me incontinent - meaning emergency surgery - that it makes me feel physically sick. I have become scared of every move I make in case I anger the disc and push it further forward into the nerves. I have given up work and everything I enjoy - particularly riding my horse.

I do tend to suffer from anxiety anyway but hadn't really thought about it until I stumbled across Dr Sarnos book in my local library last week. I sat and read through it and I was utterly amazed. I saw myself in almost every page. I actually cried with relief because it all added up - my pain comes and goes and wanders around so how could it be the disc? I thought I had been given my life back.

When I sat and thought about it, every time I have had really stressful times and anxiety has taken over, my back pain has started. While it hurts I don't worry about other stuff. Then the pain wears off gradually and I go back to getting anxious again so it seems I am in a vicious cycle.

I want to totally accept TMS as a valid diagnosis but I am blocking it because I am terrified of my disc/ nerve situation

Surely if I go back to normal life I am risking pushing the disc further into the nerves? I cannot get over the structural diagnosis and I know I won't move forward until I do. I'm. It sure who to speak to about it - I need to know if I can harm myself further.

If I could afford it I would fly over to see Dr Sarno before he retires! But then I am anxious about flying so maybe I wouldn't lol. There are practitioners here in the UK but they are all a fair way from me and long journeys also make me anxious. Also I don't they they would be qualified to comment on the disc situation as most of them are therapists - none are doctors that I know of

I know a lot of you have had disc problems and have recovered but I am really struggling with it even though TMS makes perfect sense. I can understand that discs don't cause pain so why am I so worried?

My pain has even lessened since I read the book but still I'm stuck. Help?!

Thanks and so sorry it was so long!

Amanda x

 

Welcome, Amanda!

My TMS pain was headaches so I don't really know much about the spine. This doctor is listed on the "find a TMS Doctor" page on the wiki--not sure if he's near you: http://www.nicstraitonosteopathy.co.uk/

I hope you feel better soon!

Veronica

 

Hi Veronica

Thanks so much for replying. Unfortunately he is a long way from me - I looked at his website earlier today. I am a bit anxious about long journeys but think I may have to take the plunge eventually!

Take care

x

 

Maybe you can call the doctor's office first to see what he thinks and see if he knows of anyone else closer to you?

 

Hi Amanda,

You could also contact Georgie Oldfield (http://georgieoldfield.com/). Not sure if she's anywhere near you, but even a phone call or an email to her could get you some good advice.

Enrique

 

Hello Amanda. Your story sounds very similar to mine. I did see Dr. Sarno and he told me the large herniated disc at L5S1 was not the cause of my pain. And I too was terrified of surgery; the only time I'd been in the hospital was to give birth--the non-surgical way. In fact when I was already home in back/butt pain and I got the call from a doctor who said "you will need surgery", I immediately felt nauseated.

I was happy to learn that most people over 20 have some sort of spinal "abnormality" that Dr. Sarno calls a normal abnormality. I didn't fear that it would get worse; the herniation was already large. And I remember some talk about degenerative disc disease.

My story is in my member profile here on this site. Without surgery I am backpain-free. Yay!

You said you notice the pain when you feel particularly stressed. That is a big sign for you!

Best wishes for healing! HUGS.

 

Hi Amanda~

I wanted to welcome you to the forum. You have come to the right place. I am very new here, too. I would also love to find a TMS doctor close by, but for now I will have to stick with reading the books, following the SEP, and coming to this forum. For me, I believe this is the only place to be.

Good luck to you!

 

Hi guys

Thanks so much for your responses.

To Enrique - I did contact Georgie and she was very helpful. She offered me an appointment this Friday but it would be in London which is only about 100 miles from me - I know it sounds silly but the travelling just makes me so nervous - especially as it's so busy there. I get stressed driving to new places and London is a complete nightmare when you don't know your way around. I'm not keen on public transport either. How awkward am I lol

Plus as I have been unable to work money is tight and it would be an expensive day- I know it's definitely worth it and don't grudge a penny but we just haven't got the spare cash right now.

To Lori - your story is so inspiring! I am going to start a journal and hope that will help me get some of these buried emotions out.

To Honeybear - thank you and good luck to you too. I hope we can both post great advances in our recoveries over the next few weeks

Feels great to have found you guys - I know my journey will be easier with people who understand and believe

Just a shame Dr Sarno doesn't have a chatline

Big hugs to you all x

 

Go

Gooodness Amanda, you sound like me. My real names Mandy, I'm a mum of 2 from the UK, I used to have a horse and I suffered with terrible back pain for years!! I also read HBP and saw myself on every page and was relieved.

The truth is if the pain's moving around and coming along at times of stress it probably is TMS. There are 2 Doctors in the UK treating TMS, one is Mark Atkinson in Surrey and there is Nicholas Straiton on the south coast. Then there is Geogrie Oldfield a practitioner up near Huddesfield.
I saw Mark Atkinson, and I am sure his diagnosis, even though just confirming what I suspected, helped a lot, along with his workbook.

Check out my story on my profile if you want, you may find some similarities and some hope for you there.

 

Hi there - sorry to hear about your troubles but your description of it coming and going suggests TMS - if it was physical then how can it go away and come back? There is a work programme on this site which is excellent and I also bought Dr Sarno's Mind Body Prescription which has cured me of both lower back pain and RSI!!! I have done a few main things: I wake up early and lie in bed doing half an hour of reflection/meditation on my life and why my brain feels the need to cause me pain in order to deflect from rage. I then journal for half an hour - just letting my thoughts flow on anything that is causing me pressure - both good and bad! - and then I am ready to face the day pain free! I am also REFUSING to let any pain frighten me. I know the pain is harmless and that it cannot cripple me. I do have a weird pain in my left arm but again I REFUSE to acknowledge this and state clearly to myself that it is pychological. Try the programme and see where that takes you. Good luck!

 

Thanks again for all the replies. So much appreciated

One thing I do find odd is after I read Dr Sarnos book my back pain didn't seem to be so bad, then the next day I had all sorts of pains firing off in my back. Today I have neck ache and my right leg hurts (usually my left)

Has anyone else experienced this? It's almost like my brain knows I am onto something and is firing all sorts of pains at me to try to keep me in its hold lol

I have just read an Q&A with Dr Howard Schubiner with somebody asking the same question I have about the mechanics of the disc and fear of making it worse. He says as long as the neurological exam is normal then there is no need to worry. Unfortunately my neuro exams have shown a decreased reflex in my left ankle. In 2009 when I first had the pain the reflex was totally gone and in my last exam last month it was there but decreased.

Doesn't help me to accept TMS which is very frustrating because I so much want to believe it. Especially the way the pain wanders and comes and goes. Plus my muscles are tender on top of my shoulders, sides of my neck, outer buttock and lower back as mentioned in TMS diagnosis

Interestingly I was pondering why the pain always seems to start around March/April time each year and I remembered I suffered my first panic attack at the same time of year in 2007...hmmmm suspicious I think

I'm not sure where it came from as I had never had one before and was a very calm person but I had spent the day with the worst toothache ever - absolute agony (it was a Sunday so dentists were closed) and I took some painkillers but couldn't shift it..then BAM...racing heart, breathless, shaking and completely panic stricken. Thought I was going to die. That was the most horrible night of my life but I read all I could about panic attacks and realised they were harmless and pointless.

I had a couple of others shortly after that but not nearly as severe and I managed to talk myself out of it logically. I found that when the panic tried to rise if I ate an apple, turned music on and bounced around the kitchen humming loudly so I couldn't feel or hear my heart pounding it worked wonders XD

Unfortunately after that I was left with a gradual onset of anxiety about suffering pain I couldn't control, which then turned into a fear of anything I can't control e.g death of myself or loved ones, awful diseases, flying, other people driving me etc

Anyway here's hoping I am on the right path...it might take a while to get over the physical fears but I will give it a damn good try.

Big hugs to you all and keep fighting the good fight!

Amanda x

 

I am with Pandamonium - Go. Find one of the trained persons and go. Get someone to accompany you for physical and moral support.

I think it is so important to try something and take steps. Apprehension is normal. But think of the positive possibilities that can come out of it!

Good Luck!

 

Hi Forest

Thank you - I actually found the forum from watching your story on YouTube. I was searching for Dr Sarno stuff and there you were. You made me feel so much more confident about tackling TMS. Written stories are great but hearing someone talk about their achievements really hits home so thank you for helping me find you and I am so glad you have come so far

On looking back I suffered my first panic attack in March or April in 2007 after a particularly agonising toothache I couldn't shake off. I had never experienced panic before and it was awful. I felt completely overwhelmed and helpless and that is what started my road to anxiety...I think there may well be a connection there.

Thanks again guys. I emailed Dr Howard Schubiner and Dr Marc Sopher about the structural issues with the disc and they were both kind enough to respond and were more than helpful so have helped ease my worries a fair bit.

Here's to getting better and a brighter future not being a cripple. Woohooo!

So amazing. I would marry Dr Sarno lol

Amanda x

By the way anyone who hasn't heard DJ Howard Stern interviewing Dr Sarno on his radio station on YouTube should go listen. He really loves that guy :-D

 

Amanda:

I answered your other thread, and I agree with everyone that a good TMS therapist would be ideal for you. If you aren't comfortable traveling, then try the program here. It helped me a great deal and my pain has moved from my lower back to my shoulder. It has been there for over a month. Just a little frustrating.

But with a lot of support from the people I've met here, I feel I'm on the right track. Anxiety can "hide" for years and then all of a sudden hit you like a freight train. It sounds like you've got some good coping skills for the panic attacks, but it "feels" to me that you are still plagued with some anxiety.

If you can't find someone close by, I again suggest the Structured Program here, or Dr. Schubiner's program. I did them both and have been amazed that my back no longer bothers me.

Now to get my shoulder to get with the program!

BG

 

Thanks BG

I definitely do still have anxiety issues. They surface when the back pain settles, then get overwhelming, then the back pain starts again which is what leads me to believe in TMS

I am going to try Dr Schubiners programme - was it 'unlearn your pain' you did?

I have noticed my pains moving around since I read Dr Sarnos book. Particularly to my neck and knees. I think this will help me to accept TMS!

x

 

Hi Amanda:

Yes. I did the wiki program first, then went right into Dr. Schubiner's, "Unlearn Your Pain". He has some really great ways of journaling in this program that bring out really amazing things! I did one exercise and said to myself: "Boy is my inner kid angry!". Had to laugh a bit because I had no idea before I did that program. Take it slowly. I managed to overwhelm myself but after a brief break, went back to the lessons.

And if you get the book, (vs doing it online) it comes with a CD of meditations. They are really soothing and I do them often still even though I've finished the program.I would imagine they're available on the online version as well.

Also I have been up and down the anxiety road for a number of years. Should you have questions you don't want to post publicly, please feel free to pm me. I will be happy to help in any way I can.

BG

 

Thanks for posting that video, Forest. My DH and I just watched it. It was good to hear Howard Stern say, "If you have back pain or CHRONIC HEADACHES..." Dr. Sarno doesn't talk much about chronic headaches in his books, but that has been my dilemma for the past 18+ years, along with neck and jaw stuff. Over the past year, though, the shoulders have become more involved and within the past few month, now the arms. In addition, I have the tinnitus in my left ear (constant rumbling) and Raynaud's Syndrome which he also has mentioned as being equivalents in his books. It was good for me to hear this interview and Dr. Sarno talking about TMJ being like back pain. I have no doubt that this is my answer...just have to get my brain to stop trying to fight me every step of the way.

Thanks again, Forest!