My Story

[jaymajors]

Beginning in May of 2012 I began to have mild numbness and loss of dexterity in my left hand. This numbness bothered me so I saw a GP and he said it could be carpal tunnel (it wasn't), after visiting him I felt better but I was still curious what else could cause the numbness because it was really bothering me. That was a huge mistake I learned about all kinds of diseases I had never heard of, and began to develop symptoms in many other places.

Weird sensations in my face
Dull numbness in my hands
Weakness in my hands and arms
Weakness in my feet and legs
Ringing ears
Blurry vision
Tingly tongue, Sore tongue, Swollen tongue
Nearly Constant muscle tightness of late
Dizziness (mild)
Sometimes my wrists and legs will get very painful.
Twitching muscles in my feet, and a feeling like my muscles in my feet are going to pull when I walk because they are so tight.

I ended up seeing my GP about 6 times last summer, and eventually made my way in for two separate MRI a visit to a Neurologist, a visit to the Rheumatologist, and one visit to an ER (the doctor told me nothing was wrong with me and I needed to go fishing or something to calm down). The only thing they found for me was slight nerve compression in my wrists (I program computers for a living so no surprise there), and a mild vitamin D deficiency. I also had a spinal tap done (don't recommend that for anyone). They treated me for nerve damage because of the weird tinging and numbness and gave me drugs for anxiety "none" of the drugs they gave me worked. Cymbalta gave me some really great side effects but was ineffective at helping me with my anxiety or calming down my symptoms. I am not really an anxious person but the "health" problems I have been experiencing of late probably has given me health anxiety for sure.

I still have most of these symptoms today, I just cope with them better. Most people don't even know how crappy I feel most of the time but I get by. I have a tough job where lots of coworkers that I really enjoyed working with have left over the last few years forcing higher levels of responsibility onto me. I also have a 4 year old at home who I love, but at times can push the limits of the 34 year old who just wants to relax. My life is probably the most stressful it has ever been.

I have been reading the divided mind but it mostly focuses on pain, so I was wondering given the nature of my symptoms and the brief history provided does this sound like a classic TMS case? My symptoms have had me so scared the last year and half that I haven't really had time to think about much else .

 

[gailnyc]

Jaymajors, if your doctors have tested you and nothing is wrong then most likely you have TMS. All the symptoms you've posted about have been mentioned here or on tmshelp.com at one time or another--you might want to do a "search" for them. Your life is "probably the most stressful it has ever been"--that should tell you something.

A lot of us here have health anxiety, and are highly suggestible. I went to see (yet another) doctor back in January; she diagnosed me with a condition I had never heard of. When I googled it, I read about a horrifying assortment of symptoms. Sure enough, I started experiencing them soon after that. Luckily, I was able to see a TMS doctor who assured me I did not have that condition but rather had TMS.

Maybe you are near a TMS doctor? http://www.tmswiki.org/ppd/Find_a_TMS_Doctor_or_Therapist

 

[AngK]

The initial acceptance of a TMS diagnosis is scary because you're accepting that nothing is physically "wrong". So you really need to feel confident that nothing is physically wrong.. you need to exclude all other possibilities to your satisfaction.
For me, after all the Xrays & MRIs & blood work came back with underwhelming results, I visited a neuromuscular massage therapist who discovered over 20 active, nasty trigger points (knots in my muscles) that referred pain, numbness, or both, to all my affected areas (including my head/sinuses/ears, hands, feet, back, etc). It was very clear to me that this was my problem: trigger points... not bulging discs, arthritis or a host of other default diagnoses by doctors. Then I wanted to know why I had the TPs and that is what lead me to TMS. I 100% believe TMS causes my TPs. I fortunately had a very clear, methodical way to confirm that TMS was the cause of my symptoms. If you do not, then you would probably feel much better if a TMS provider helped you confirm it. I see gailnyc has provided you the link to the list. Good luck! Keep us posted!

 

[jaymajors]

Thanks for your responses.

@gailnyc
Google was probably the worst thing that happened to my symptoms. They started off as your typical RSI like symptoms, numbness and pain in my hands. This makes sense from a TMS standpoint because of my profession I have heard about bad posture and RSI causing pain all the time so for the pain to show that way is not surprising. Then I went on Google and typed in the symptoms and it came back with symptoms that were terrible and of course now I have them, I have been trying to limit the times I Google for symptoms. But when they are bad I always feel like I should just check one more time for reassurance (which I never get, I almost feel like I have an addiction to symptom checking), which probably means they are serving their purpose of distracting me. I guess I need to stop focusing on the physical and more on the things that have gone on in my life.

@AngK
I have been visiting a Massage therapist who finds trigger points all over me as well. She works them out then when I come back in a couple weeks they are just as bad or worse than the previous visit. I even got my own book to help me work them out. My calves get so tight at times that my feet feel numb, if I have my calves massaged (it hurts like crazy) but my feet eventually feel fine aftwards. I am glad to hear that you were able to make the connection and get on your way to feeling better; I hope I can get there soon.

I am pretty sure this is all TMS, nowI just need to bring the 80% belief up to 100%; the hardest part for me is the not focusing on the physical symptoms so much. Whats funny is while I am typing this post the physical symptoms have flared up a bit, its like anytime I give them attention they get worse. If I have learned anything in the last 2 years, its that the mind can really do some crazy stuff to your body.

I fit the TMS personality pretty closely; so I feel pretty good that this is probably whats going on with me.
Perfectionist
Wanting to be liked by others
Frustrated by others not working as hard as I think they should
Doing my best all the time
Trying to control uncontrollable situations
Always expect way to much of myself
I liked my quiet time; and now I have a 4 year old so anyone with a 4 year old knows how much of that I get.
Never ask for help, just suck it up and do what's asked even if I don't want to or feel I shouldn't be doing it.
etc.. etc.. etc..

The best part about all of this is, I have been this way for 32 years and never had a problem then 2 years ago the symptoms started. I have been such a laid back person outwardly and very reserved emotionally. So I probably have some work to do, guess I will get started. My brother went through about 8 years of unexplained back pain in which he found no relief from doctors. He eventually changed his perspective on life to be more focused on now and less stressed about the things around him he changed his attitude and outlook on life and his back pain is now mostly under control. He has some bad days but he cured himself just by changing his perspective, I am now wondering if he was suffering from TMS. Our parents expected a lot out of us so maybe we both stressed ourselves out competing for that #1 kid spot .

Thanks again for the replies I am definitely going to work on this.

 

[gailnyc]

Jaymajors, your list of TMS personality traits is something I could have written about myself.

I am sometimes tempted to look into trigger point therapy, just to find some temporary relief, but I am afraid that it would be focusing too much on the body. You're right, whenever we focus more on our bodies the symptoms tend to worsen. We need to practice removing that focus on the body in order to relieve ourselves of the pain.

Google is the worst.

 

[AngK]

Jaymajors, your list of TMS personality traits is something I could have written about myself.

I am sometimes tempted to look into trigger point therapy, just to find some temporary relief, but I am afraid that it would be focusing too much on the body. You're right, whenever we focus more on our bodies the symptoms tend to worsen. We need to practice removing that focus on the body in order to relieve ourselves of the pain.

Google is the worst.

I agree.
The most valuable thing about trigger points is just knowing that the pain & numbness are caused by the knots in muscle... to ease your mind that the symptoms are NOT some sinister disease or condition. After that, the real work is done on the psyche. Every once in a while the pain is bad enough for me to do some trigger point therapy. I just recently realized that I'm not a failure if I need it from time to time. The pressure we TMSers put on ourselves to do this TMS program "right" and not "break down" and get a massage or something just further illustrates the personality that causes it in the first place! As so many say on this Wiki: be kind & compassionate to yourself!

 

[SDGirl]

Oh my, you and I have a LOT in common (you can search my name to see what I posted). You are NOT alone. I came here, not really because of "pain" though I developed some, but more because of numbness, weird migrating neuro symptoms and unexplained twitches etc. I did the exact same thing. I googled my initial symptoms which brought up a forum on ALS, MS, you name it. I completely freaked out, spiraled down, and literally "gave" myself new symptoms as I convinced myself that I had all these things. Became totally OCD about trying to figure out what was wrong with me and not trusting the drs. Complete health anxiety!! I had never had a day of anxiety in my life before this.

I had every test in the book, and like you the ONLY thing that came back was a slight Vit. D deficiency. I developed severe anxiety and insomnia - and only this week I am really starting to feel better - (physically I still have weird stuff going on, feel like electricity down my arms, some faciculations, etc.) and I always have pain(ish) in the backs of my shoulders but mentally the FEAR is decreasing. But, I ended up going to see a psychologist. I've been three times so far and its been so helpful - I can't recommend therapy enough! The sleep is still not great, but I went to see a specialist for that as well - and I am now on a sleep compression program which is giving me hope and already helping.

Anyway, I wanted to give you hope that you are not alone. The mind is so powerful its kind of scary! But I keep telling myself that if my mind was powerful enough to create symptoms once I read about them/thought I had them - they can one day all go away. And, some things have definitely gotten WAY better.

One reason I believe that I am finally improving is that through this I realized that my job is so over the top stressful - and I wasn't even realizing it. I had always wanted to work less, but I'm a people pleaser and didn't want to ask for it. This week I finally took steps to reduce my hours - empowering. My anxiety dropped 10x this week (I hope it stays that way!). I have hope that the tingling, weird nerve pain, etc. goes away for me and you.

Again, if you're not seeing someone. I totally recommend that you do. If you are like me, the anxiety is really contributing to the symptoms a LOT. You probably do a lot of shallow breathing without realizing it which can lead to numbness etc. A therapist can help you turn the negative thinking around.

 

[SDGirl]

Jay one more thing - YOU HAVE TO STOP GOOGLE. I mean it! You have the same thing as me - you are OCD about it. (I used to think OCD was reserved for people like Jack Nicholson in that movie) As my therapist explained it - you are Obsessed with your symptoms and finding a cure/solution or finding others like you for comfort! That is the compulsive part. The need to comfort yourself by researching. But really its a cycle that just keeps repeating itself. By now you know that every time you Google you might feel better for a minute, but all of the sudden you read something about some other thing you weren't even thinking about and now that has you worried. Its SO hard to not do, but just stop. I promise its freeing.

I actually even stopped visiting this site for the same reason, just to recondition myself to avoid internet searches.

I wish you luck, your story is so similar to mine that my heart breaks knowing what hell you have been through.

 

[Walt Oleksy (RIP 2021)]

The Nicholson movie is AS GOOD AS IT GETS. Really good movie. I'm going to watch it again and see how it applies to TMS
and write about that for the TMS and Pop Culture posting. Some good stuff there already.