Introduction and Symptoms

Hi,

My symptoms include chronic upper back, neck, head, face and some jaw pain. When I chew I often feel pain at the base of my skull on the back of my neck. I also get numbness on my face below my eyes. I also have tinnitus in the right ear and some vision jittering problems when looking at objects up close. I had dizziness when it was at its worst.

I also get lower back on the right side only and some weird numbness/itching on my right rib abdomen. The right side pain can be in the hip or sciatic like pain down the leg.

I was very worried when the dizziness started and in the beginning when the jaw pain was very bad and I also had electric shocks in the head. That calmed down, but I still have some jaw involvement.

I had become comfortable with these symptoms when I discovered about trigger points in the muscles and realized all of these symptoms were cause by that, however I was not able to remove these symptoms with any treatment.

I became very scared when I started to develop unusual sensations all over my body that felt like water drops, burning, stinging everywhere. The first time it even developed into a numbness and burning in the feet that lasted three weeks. These paresthesias have been my recent concern which has given me a lot of anxiety and stress because the doctors can't tell me what is causing them.

I had these paresthesias that felt like cold water moving in my legs in 2006, but did not feel anything like it until it was all over my body and also other sensations in 2010. In 2010 the sensations started several weeks after I saw a doctor who I believe was crazy who was treating me for a fake Lyme disease for which I had been given a non-valid test.

I was referred to a doctor by my trigger point message therapist to make sure I didn't have any underlying conditions which may perpetuate my trigger points and that doctor eventually gave me a non-standard test for lyme disease and said I had it. I was very skeptical but thought I should give treatment a try just in case, but I had to go to these non-standard lyme disease doctors because that is the type of diagnosis I received. I went to lymedisease.org and got a referral from there and went to an out of network doctor who told me I did have lyme disease and bartonella bacteria. I told a standard infectious disease doctor and she didn't think so. The Lyme doctor gave me four antibiotics: Azithromycin, Minocyclin, Bactrim and Refampin. A few weeks after taking these I started to get snow flake sensations all over my body which eventually turned into stinging and burning all over that would be random or provoked by pressure such as walking or sitting.

I told the doctor about the sensations and he said that was the antibiotics fighting the infection and I went from skeptical to convinced for a period of 5 months. After 5 months or so I learned enough to decide that the doctor was crazy and nobody was getting better and they were just being told they had "chronic lyme disease" and that the test I had was not valid.

I stopped taking the antibiotics but the sensations persisted for about a year and a half slowly going away. I think they finally went away completely and I was free of them when I had an upper respiratory infection and they came back all over. I waited 6 months and they slowly went away when I had another upper respiratory infection and they came back all over again and that is where I am now.

I just want to get better and I'm getting neurological tests, but the doctors can't tell me what it is. I was looking into some sensory neuropathy Celiac disease stuff, but I don't know if I'll go to a special center to get tested for that, which I'd have to do. I would love to know if anyone with the muscle problems has also developed these strange sensations all over that feel like cold wet water or stinging.

If I want to read about TMS should I get the 2007 book "The Divided Mind" or should I get the 2010 book "Healing Back Pain" given my paresthesia sensations? Or maybe the 2011 book "The great Pain deception" by Steven Ozanich? I'm very curious about my water sensations all over my body. Do any books mention that? I don't get tingling or numbness really, just cold water and stinging / burning. The cold water is mostly in my feet and I feel it when walking. The stinging can also feel like itching and I tend to feel that in my legs or feet. I can also get a strange sensation if I scratch my face. Everything including my ears on the pillow cause strange sensations, but they are not always reproducible.

I'm mostly concerned about these strange sensations, but if TMS whatever it is can get rid of even just my muscle symptoms I'd be glad for that too. I've watched videos, but I haven't read any of the books. I dismissed TMS when I heard about it once before, but now I'm wondering and I figure it can't hurt to give it a try as long as I get enough tests first from my doctors, but I just don't know how many tests I should get.

I just want to get better.

Thank You

 

Hi Silver23

Welcome to the forum , we are glad that you have found us. You are in a very safe supportive place.

I'm sorry to hear about all the problems you've been having. I have at some point experienced every symptom you describe and more, and I am doing great with TMS healing being currently almost pain free.

From the little I know about Lyme disease it is quite a commonly diagnosed when the actual problem is TMS. I only know one person who had true Lyme disease and she was absolutely fine after just one course of antibiotics. In the absence of any other positive medical test, I would say that it is highly likely that your troubles are caused by TMS.

By the way "Trigger Points" are just TMS muscle knots. In my experience and that of many of us "treating" them only give temporary relief and keeps you focused on your body, which is what you want to avoid in TMS healing.

Personally I would start your reading with "The Mindbody Prescription" by Dr.John E. Sarno, because it is quite short and easy to grasp, then I would move on to "The Great Pain Deception", which is much give a deeper insight.

I would also highly recommend starting the Structured Educational Programme on the wiki, which is a daily guide as to how to go about your recovery.

TMS causes a very wide range of weird scary symptoms, all of which although alarming are absolutely harmless and totally reversible. It's your fear of these symptoms that keeps them alive. Once you lose your fear, they lose their purpose as a distraction from unpleasant emotions, so become redundant and will eventually fade away.

You will be fine, I promise. There are some very kind, supportive and knowledgeable people on the forum who will do all they can to help you on the path to wellness. We are all here to help each other.

Much love & blessings

 

I'm interested in the sort of paresthesia symptoms people with TMS have had. I have read about the numbness and tingling, but for me I feel wet water sensations particularly in my feet when walking. I also get the water sensations all over as well as some stinging and itching. So, mine aren't just tingling and numbness.

I see on wikipedia it says

• Symptom type: TMS symptoms include pain, stiffness, weakness, tingling, numbness and other negative sensations, according to Sarno.

• Symptom location: In addition to the back, Sarno states that TMS symptoms can occur in the neck, knee, arms, wrists, and other parts of the body.[2] Schechter states that the symptoms have a tendency to move to other parts of the body. He considers symptom movement an important indicator that the pain is from TMS.[1]

But, it doesn't say what these other "negative sensations" are. For the body location it mentions the neck, knee, arms and wrists and "other parts of the body". Of the ones listed I only get it in the neck.

I can understand how TMS may cause trigger points, but I'm a little more curious about these water, stinging and itching sensations ( itching stings mostly on the lower legs or hands) and others who had these specific sensations. Like I said I also get a strange stinging sensation after scratching on my face too.

I also have some kind of TMJ jaw involvement because when I chew my temples and back of my neck hurt, though my jaw muscles normally feel fine from just chewing.

I really would love TMS to be a solution for both my muscle and strange sensations symptoms because I really do want to get better. It would help if you or somebody could clarify that you have had these more specific sensations and what understanding TMS has had as an effect on these symptoms.

I looked up the Mind Body Prescription and read as much as I could on the free preview, so I guess I should order it.

Thank You

 

Hi Silver, I also have strange sensations in my back, hips, legs and feet, as well as my arms. In any of the books you will learn that TMS can affect nerves as well as muscles and tendons which can cause strange sensations. My symptoms are burning nerve pain, tingling, pinching, tiny stabbings, tiny shivering or shaking, tiny tremors, warm or hot on top of my foot, very deep burning pain, tightness like I need to stretch or be massaged, and bubbles under my skin in my feet. All of which come any go and move around. I have been almost pain free twice since discovering dr sarno but fear has set me back a little bit...I'm still working on my fear so I can achieve full recovery. I'm not sure what you mean by cold water but it sounds like yor nerves are being affected. There's many people who have recovered from similar symptoms by using dr sarno techniques. Read the books and continue visiting this forum , people are very supportive here.

 

Hi Silver

I know how fightening this is , and how tired you are of all your strange symptoms. My heart goes out to you.

Alexandra is correct, all the weird sensations you are experiencing are caused by slightly reduced blood supply to the nerve. THIS DOES NOT CAUSE ANY PERMANENT DAMAGE.

As I said in my earlier post I have had exactly the same odd feelings, IT'S NOTHING TO WORRY ABOUT, it the worrying about it that keeps it going.

The more you find out about TMS, your fears will start to lessen.

 

Alexandra, which books did you read? Do you also suggest "The Mind Body Prescription" for a first read? What do you suggest after that?

I also saw there is an online meeting on Saturdays. I think I'd like to go to that.

Thank You

 

Hi Silver

I doesn't really matter which book you start with, they all deliver a similar message. Below is a list of the books which have been the most help to me :

The Mindbody Prescription - John E.Sarno
The Great Pain Deception - Steven Ray Ozanich
The Meaning of Truth - Nicole J.Sachs

You Can Heal Your Life - Louise Hay
Rewire Your Brain - John B. Arden
The Power of Now - Eckhart Tolle

The first three are all about TMS and healing, the other are related "mindbody" reading. I've read many more too.

Once you get started you'll find TMS fascinating. You can start the SEP before you get your books, there is also plenty of material on youtube.




Bless You

 

Two terrific videos by Dr. Sarno that reinforce his books. It's great to hear him tell about TMS
repressed emotions causing our pain. They explain it all and for those who are not 100 percent
convinced about that, it could be the big push to healing.

 

Hi Silver, I started with "healing back pain " then "The mind body prescription" I have also read Fred Amir's book and " You can heal your life" by Louise Hay...I am now reading "the great pain deception" . Reading success stories has helped me, visiting this forum, and becoming active . Most importantly I have tried to incorporate fun activities into my life, pampering myself, having much more ME time. Not paying attention to symptoms and saying screw it! Life is short and I'm not dead yet so I'm going to live! I choose to be happy...we are stronger than we think...

 

Hi, Alexandra. You got it right! I'm going to put your post on my desktop and hope everyone
else will, to remind us that we know about TMS and we need to add more fun to our life and
have more ME time. Most of us are so obsessed with pleasing others, we don't do enough to
please ourselves. We can never over-do because it isn't in our "goodist" nature.

Your positive thinking is a tonic for everyone!

Bless you and have a happy life!

 

Hi Silver, I've had all of the paresthesias you've mentioned and more. I used to get a feeling like someone was pouring hot coffee on my left foot! So strange! I had back pain at one point, but it wasn't scary to me, so I let it go! The nerve pain, etc. is much different. It's "un-nerving"! I still haven't figured out how to not let it bother me so that it loses its power and goes away. I'm still a work in progress for sure! Just wanted to let you know that you aren't alone. There are quite a few other people who've had the same. Many who have healed and moved on as well! So, keep the hope! Regards, Mandi

 

I have pins & needles in my hands and feet as well and its driving me crazy. I have major health anxiety and can't stop thinking about the possibility of this being MS or something like that.It doesn't help that I have a close friend who has MS and talks about these symptoms all the time. So hard to not think of the worst

 

Those are very common symptoms of anxiety. Many of us here, including myself have experienced these symptoms and also struggle with health anxiety. Have you read any of Dr Sarno's books or Steve Ozanich's book? I would recommend that you start educating yourself and filling your life with as much joy, peace and activity as you can. This site is excellent. I'm a new member, but there are many other more experienced people here to support you.

Blessings ❤️❤️

 

Thank you! I read both books about a year or so ago when I started having some neck pain. Last summer I sort of stopped with my acceptance of the TMS dx (i probably never fully accepted it 100%). But I am revisiting it again. I will pull my books out and re-read

 

Yes marinawalk please do, it will help you recondition. How else can we know the truth less we use that truth to heal.
Bless you

 

Hi Silver23, Since you posted this March23rd, I hope you have gotten mental and physical relief for your symptoms by now.
I came onto the forum this morning to do a search on 'itching' (while filling in time). I have had itching in my left side of neck, trapezius, intestine, since maybe Jan; replacing a strong pain. It has subsided to almost nothing since reading my first Sarno book only 3 1/2 weeks ago and coming across this site a week later. I don't remember having the water sensations, (I don't want to recall what I have felt over the past 18 months), but I have had all your other symptoms plus more. I did a search on 'itch' because it can be harder to deal with than a pain. But this too shall pass. The first Sarno book I read was The Mind Body Prescription. (listened to on audiobook, which has an excellent interview at the end). Then 'Healing Back Pain', then 'Freedom from Fibromyalgia' by Nancy Selfridge. I get these from the library. I found 'Healing Back Pain' to not be as good as the Mind Body, but it resonates with a lot of people. I don't have Fibro, but have had many similar symptoms. I found the book so good I ordered it off Amazon so I could re-read with a pen.
Every day I intend to write 'My Story' on this forum, but I am too busy having my life back since discovering this forum to do it yet.

 

According to SteveO that's the goal, good job!

 

I just stumbled upon my old post and thought I'd give an update.

I still get water sensations, but I haven't gotten the bad flares that would happen after upper respiratory infections in years with the stinging and burning. That thankfully stopped.

I have been having symptoms of liver and/or kidney problems now though. I get a sweet taste in my mouth that won't go away or an ammonia like taste after meals with protein sometimes. Also feeling cold and very hungry. My blood glucose is in normal range so it doesn't seem like a typical diabetes thing. I'' going to get liver/kidney blood markers checked though.

I didn't do much of the TMS stuff or pursue that very long. However in relation to TMS being a supposed reduction of blood to the nerve this could be explained by a microvascular infection called Bartonella.

I got tested for Bartonella from Arup labs over a year ago which was negative and my personal research choice was Galaxy diagnostics which was sort of positive. The expensive PCR DNA test was negative, but the IFA igg score was 256 which is considered positive normally, though there can be cross reactions from other similar infections it lists which can cause this or past infection with Bartonella. You can just order the Igg IFA by itself which is a lot cheaper. The infectious disease doctor said it was a false positive though and I would not have taken antibiotics anyway until I was sure I had it and knew how to get rid of it because the last time I took antibiotics it gave me the bad nerve problem that would come back after every respiratory infection for years which was very stressful and scary.

The only way to be sure is to get an antigen test for Bartonella and that test does not exist yet, but the technology does and Ceres Nanoscience is the company that will offer it in the future. They already have an antigen test for Borrelia which is the best test out there to avoid false positive and negative results. I took that test and it was negative. They originally told me the Bartonella test would become available around the end of 2016, but delays could happen. I suggest that test and the Borrelia test only from Ceres Nanoscience. Probably the Bartonella test even more with these symptoms. The NIH funded George Mason University to make this technology and then Ceres Nanoscience was founded by the researchers to bring it to market.

 

Silver, you're not alone with the odd sensations. I did get the "standard" nerve pain, and tingling and numbness in my hands. I constantly felt like drops of cold water were running down my legs. If that would quit, I would then "feel" things crawling all over my legs. Almost two weeks ago, after weeks of none of these symptoms, itching began. All over, uncontrollable itching. Head to toe. It drove me nuts for a solid week before I realized it was a new TMS symptom. Within a few days of that realization it disappeared completely.

I have not read the books yet, just lots of reading here and through google searches. I've also worked on mindfulness, journaling, positive affirmations, and when symptoms arrive, focusing psychologically instead of physically. Also, knowing the cause of this all has taken care of the fear factor, which was (I believe) the biggest contributor to my symptoms.

You CAN get better. Keep coming back.

 

WELL, thanks for the update, BUT, in all honesty, I didn't understand any of the "scientific" gobbledegook, and will make my best effort to erase it from my gray matter. This is the TMS site, so we are hoping that our symptoms are due to TMS, and NOT structural.

I've never heard of Bartonella, and at the rate medical "science" is contriving new disorders to cover up their inability to treat, dx, or cure chronic psych0somatic pain, it's impossible to keep up with all the new etiologies. You've spent a shit-load of money and time on all these tests, when reading a book, about TMS, might be your salvation and cure.

O2 deprivation is only one of the Good Doctor's possible explanations for TMS pain. The acronym initially stood for TENSION MYOSITIS SYNDROME. This was when he was focused on muscles, tendons and ligaments, because that was his area of specialty, rehab medicine. With the help of Dr. Marc Sopher, the acronym now stands for THE MINDBODY SYNDROME-- an artful segue.

If you read his recent works, he states it doesn't matter what the mechanisms are to create the TMS psychosomatic symptoms--and that we may never discover them, like the far reaches of the galaxy, due to the complexity of the mind and the craftiness of our sub-c's in creating new symptoms. "Modern science" is equally creative in coming up with new and expensive diseases and tests to explain why we ache.