What to do when others might have TMS

This has been on my mind for a while: I'm wondering if anyone has thoughts on how to bring up TMS as a possible diagnosis for someone else. How do you introduce TMS to someone else? For those of you who've tried it, what worked (and what didn't)? For those of you who discovered TMS after someone else told you about it, what about that person, or their "argument" so to speak, reached you?

This isn't coming out of nowhere: I think my sister, who I am quite close to, has TMS and I just don’t know how to bring it up to her.

This question of whether to talk to people about the TMS diagnosis (or how to talk to them) isn't brand-new to me. I have known a couple people who seem to me to be suffering from TMS (though I am obviously not a doctor who can diagnose them). One is my former neighbor who I became friendly with. She suffers from depression and, previously, anorexia, and has a slew of back problems as well as hip pain. I suspected it might be TMS because she talked about how the pain moved around without her physically doing anything. I suggested Georgie's book to her, because I thought it was in the writing style she would most respond to (and because it was one of the few actual paperback books I could physically lend to people). She thanked me for the offer but said did not want to read it, as she was worried it would make her more anxious about her pain. She ended up having back surgery and is now in a brace. I can't help but feel I could have tried harder, but I felt we weren't good enough friends for me to push it and so I let it alone.

I also have a friend who suffers from severe back pain. I've unfortunately lost touch with her (not counting the occasional Facebook interactions). When I knew her and was in more constant contact with her, though, it was pretty clear to me her back pain might be TMS. It developed soon after her mother was murdered and her two younger sisters very narrowly escaped death in a pretty horrific domestic violence incident. The back pain gets worse when she is stressed, and MUCH worse around the anniversary of her mom's death. She's also the kind of person to take care of everyone else except herself. She's been to multiple doctors, and they just can't find anything structurally wrong with her back. I used to be much closer to her, but now that we've essentially lost touch, I feel it is not my place as a now-acquaintance to bring it up with her. Yet, I really hate to see her suffering so much when I think the TMS approach could really help.

I bring these examples up because I think it is very difficult to share the TMS approach, or any medical or mental health approaches, to someone you don't know that well, or are not in contact with that much. Though I started recognize some TMS aspects in both these individuals a while back, the lack of a deeper relationship prevented me from pushing any medical information on either of them.

I always thought that, if they were better friends, or family members, I wouldn't hesitate to encourage them to look into the TMS approach. But now, I think I was wrong about that. My sister has started developing some symptoms (allergies and hives, namely) that I think may be TMS. She's got significant anxiety (GAD) that I think has been making her symptoms much worse. Last night, she called me because she was terrified she somehow ate something containing tree nuts (her allergy) and that her throat was closing up, even though a) she said herself that the only thing that could have possibly contained tree nuts she ate five hours ago, and b) the allergist she saw last week told her she had literally less than 0.01% chance of anaphylaxis. (She told me both these things herself.) She also had developed pretty bad hives on her knee after itching it to relieve the discomfort she was in.

I should mention, today my sister started a new job (still with the same organization she worked with over the summer, just a different job) and when on the phone with me last night expressed a lot of anxiety around not being able to meet the new expectations and generally failing – failing herself, failing the youth she's working with, failing the organization, failing our parents, etc.

She puts so much pressure on herself, and I don't think she knows how to stop doing that. When we were growing up, I had some health stuff and I think she felt like she had to be the perfect child for my parents so they wouldn't have to worry about her, too. I can't help but feel like so much of the pressure she puts on herself is my fault, or rather, that I created the environment that is now making her feel. (I also know if I do talk with her about TMS that I can't go into all of this. It has to be about her, and her healing process, not about what factors shaped where she's at now.)

I have no idea if her allergies are legitimately allergies, but from our conversation, and just from knowing her, I really think her anxiety is at least exacerbating her symptoms, if not creating them.

She knows about TMS through me, and I doubt she would be opposed to the approach, but I honestly don't know how to bring it up in the first place. I always thought it'd be so much easier to talk to someone I'm close to about TMS, but it feels just as hard.

While I suppose I'm asking for advice and for guidance around how to approach my sister, or if I should talk to her at all, I also hope to open up a bigger discussion about talking to others about TMS. How do we tell the people close to us about TMS? What about acquaintances? When is it right and when do we leave it all alone? At a certain point, it's in their hands -- they ultimately decide whether to open their minds to the approach or not -- but are there ways we can help make that decision clearer?

I know this all depends on the person and the relationship, but I'd really love to hear what everyone else's experience has been.

 

Hi Becca

This is a very interesting subject, and one close to my heart too. My Dad has chronic TMS and suffers terribly, but I don’t have a close enough relationship with him to bring this up with him. It’s hard to watch him suffer, but I have brought it up with Mam once and she soaked it up like a sponge. Only problem though is that Mam and Dad are very old-school, and Mam cannot give out advice to my Dad; only take it.

I believe other family members have TMS too. I would love to help my sisters, however have to tread carefully around one in particular. I recently brought it up and was politely told to get stuffed (which might have triggered a TMS relpase in me).

I think you need to gauge how receptive your sister would be to hearing the news that she has TMS. If she's already familiar with and accepting of TMS concepts, then you're halfway there. I know some of my sisters would be VERY receptive while one - possibly two - wouldn't.

The way I look at it is by reflecting on my own experience with TMS discovery. I was quite desperate, having suffered for over twenty years, and had tried everything, so was SO ready and so excited when I stumbled on this discovery. If it was ten years ago, I might have thought it was a load of crap. And remember, it also boils down to your relationship with your sister, and how much you confide in each other etc. Good luck, keep us posted!

 

Great subject, Becca. I have a personal rule of never giving out unsolicited advice. Of course, I break it from time to time, but usually regret it when I do. What I have tried to do is share with others, at the appropriate time, the benefits I've experienced from finding out I have TMS and using the healing techniques. Then if they say, hey I'm interested in learning more about it, can you suggest some resources--then I do. If they remain silent, then I don't. Maybe another time will be right.

I think the Pain Psychology Center has a brochure/flyer that they produced about PPD/TMS that is a good, brief overview. I think that is a good introduction to the concepts for people who may be overwhelmed by a book.

 

I personally think giving someone a book is a great way to introduce these concepts. I think this can be done in such a way that they can make the personal leap if they feel it applies to them or not. And it may just plant a seed that they come back to later. I choose the book according to what I think they might be most receptive to. For instance, Back in Control can be a good introduction to someone who might be considering surgery or for my therapist/health field friends that need the validation of something written by a Neurosurgeon. I am giving Unlearn Your Pain to an employee who I am quite convinced has TMS and would probably be very receptive to that book. Her teenage daughter tried to commit suicide last year and she gave an enormous amount of time and attention taking care of her and keeping her alive. As it started to stabilize, she has had one condition after another - shoulder/back pain, fluctuating blood pressure, migraine headaches and now she is seeing doctors for carpel tunnel and considering surgery for it. Its pretty obvious what her mind is trying to distract her from! I think giving a book if presented in the right way is not offensive, and they can always choose to read it or not. When it is given out of love and concern, I have not had any problem with someone getting offended. I am not trying to get anyone to join my church, I am just passing on information that can really help someone in a time of need. I stumbled on Dr Sarno's book in a bookstore 20 years ago. I read it and tried my best to apply it to my life on my own. There was no internet, no support, no one to discuss the ideas with. None of my therapists knew about it, my doctors dismissed it, my physical therapist told me something discouraging about it. I gave up and had back surgery. 20 years of pain conditions later I rediscovered his ideas and it has been a lot of work but has changed my life. This isn't some fad, this is knowledge. So I don't feel any hesitation sharing and passing it along.

 

Unfortunately, many people will refuse to believe in TMS. We are brought up hearing that if you have pain, there is something physically wrong with you. Most people who go to a doctor when they are in horrible pain want to hear, "blah-blah-blah is wrong with you. Take these medications and avoid these activities".

My own wife is one of these people. She watched for years as I suffered with bouts of crippling lower back pain that would randomly pop up every few weeks. She watched as I had tests done at the doctor's and was told I have advanced degenerative disc disease. She listened as he told me I'd need to stop lifting heavy weights and avoid lifting dumbells straight over my head or doing exercises like squats where I had a bar of heavy weights on my shoulders. She then watched as I learned about TMS and read HBP. She saw my back pain disappear within 3 weeks. She has seen me 100% back pain free for over 7 years now. She has watched me at the gym squatting with 230lbs of weight on my shoulders and lifting 50lb dumbells straight above my head with no pain and no worrry. And do you know what? When she complains about all her aches and pains that constantly pop up and move around her body, if I even mention to her that it might be TMS, she gets angry and says she doesn't believe in that garbage.

I guess the moral of my story is that you can try to educate others about TMS, but if they are not open to it, you're wasting your breath. I've preached about Dr. Sarno to a few people at my gym. They all listened and seemed generally interested, but I don't think any of them actually read his book or really bought into it.

 

Yes, I agree. If someone is not open to listening for whatever reason there is not much you can do. My husband is the same way. He doesn't say that he does not believe in TMS but he strongly resists the idea that it could apply to him. I occasionally point out some of the connections I have observed but gently and only as my observation. Then I drop it and I don't push. I doubt he will open his mind to it until he gets really, really stuck. Like the tennis elbow he suffered from for several months. If that had gone on for much longer he probably would have become a little more open. I also want to point out though that there is a whole lot of people out there who have explored medical interventions for their pain, as I think most of us have, and then are left on their own. Perhaps they have some pain killers that don't do much but take the edge off. I especially see this in the elderly but I also know lots of others who are suffering through their days just like I used to do. And still do on occasion. I don't think it is fair to assume that none of them are open to learning about TMS. We all know how overwhelming it can be. Also, as more and more medical professionals discover the very real potential recovery from pain with TMS therapy, the easier it will get for everyone.
Every time a doctor, a therapist, a psychologist emphasizes or specializes in TMS a light goes off with a ripple effect. Brilliant people like Forest putting together this web site, writers, and filmmakers are all effecting really positive change. And although my recovery may not show my husband the ways he also suffers from bouts of mind/body syndrome, at least he has a much happier wife and I am sure that helps his TMS! Ha ha.

 

You're right that there are probably tons and tons of people out there who would be open to learning about TMS but just don't know about it. I had never heard of TMS until a co-worker who saw how bad my back pain was told me about Dr. Sarno and how reading his books helped his son who also had horrible back pain. The first few times he talked to me about Dr. Sarno, I just kind of "yes'd" him......"yeah, ok. sure, I'll look him up online", and of course, I never did. Who would believe that this horrible pain was caused by my brain? Afterall.....the doctor said I had advanced degenerative disc disease. Well, thank the Lord, I finally decided to see what this Dr. Sarno guy was all about. As I read various TMS info online, I saw myself in so much of it. Then I started reading these forums and reading about people suffering the same pain as me. It was so enlightening and I was finally open to accepting all of it. A few years ago, another co-worker, who was one of my closests friends here, had bad shoulder pain for months and months that wouldn't go away. He's young and in shape and I had a feeling that this non-healing pain could be TMS. I told him all about TMS and sent him a bunch of TMS links. I asked him a few days later if he checked out everything I sent him. He said he started reading one of the websites but realized he doesn't "believe in any of that junk". He refused to believe that his pain could be TMS. He was totally not open to learning anymore about it. He no longer works here, but we keep in touch, and he still has shoulder pain.

 

Most of the people that I have suggested TMS to are already my office, willing to pay money for a psychologist because they know they are in emotional pain and want help. Once in a long while someone actually borrows a TMS book, but usually their eyes just glaze over and they go quiet or change the subject. There are some that remark down the track that certain pains and illnesses seem to be clearing up but I am not sure even then it sinks in.

My rule has become to mention it once, and even then only by prefacing it with my own personal experience. There is a 12 Step slogan which I find useful, which is "attraction not promotion. "

 

@Tru B Leever & @Anne Walker, I agree with a lot of what you are saying: if they aren't going to be open to it, whatever we say isn't going to make that much of a difference, especially considering acceptance of the TMS diagnosis is such a major part of the recovery process.

@tarala, I really like the "attraction not promotion" slogan. I've found that 12 step programs actually have a lot of commonalities with TMS healing. Like being open to the TMS approach, admitting you have an addiction and need help only works if it's that person's choice. It can't be thrust upon them. As corny as this sounds, it has to come from within. Change won't happen otherwise.

There's only so much we as outsiders can do or say to influence someone else one way or another. In the end it is up to that person and we can only offer support. Yet, as much as I understand this, it's still so hard to sit back and watch someone suffer, especially when it's someone I deeply care about.