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Non-TMS online support groups: a bad idea?

K

KathyBee

Peer Supporter
I joined an on-line support group for chronic pain a few days before I found out about TMS. I posted a couple messages but have not posted again since then. The people there are sympathetic and supportive. However, there is a lot of talk about which pain medicines are the most effective and it seems like most people have given up on a cure and are focusing just on coping.
I am thinking that it is probably not healthy for me to go back. I feel bad about flaking out though. I feel like I should go back and leave some kind of message, "thank you for your warm welcome, but I am leaving because…." And then I would have no idea what to say.
I think that a lot of people there would not be receptive to me explaining TMS. It is a tricky thing to explain without offending people. And I cannot really say it worked for me either, because I just started so I do not have results yet.
It occurred to me that other people may have been in support groups, either online or in real life, before they found out about TMS. So I was wondering how other people handled it.
 
Yes, I joined a fibromyalgia group just a few weeks before finding this. There was some great info on there - and I am eternally grateful to the lady who gave me the link to this website. BUT, despite many posts about John Sarno's books (The Divided Mind etc) and TMS itself, many seemed to not get it. They were saying about the lack of oxygen/blood flow to tissues and explaining how they tried physically to get more blood flow to painful areas. But they did not seem to understand the correlation between the emotions and the pain. I felt they were missing the point. They were all obsessive about various fat/meat diets as well, and as you said, about medications and tablets galore. Well, I have spent 22 years wandering down those roads - I know TMS is what I got, and now I know how to deal with it, so I cancelled my membership to other sites. This may be a tough road - but it is the one leading to my destination!
 
I was in an online support group for headache sufferers before I found this, and then I never used the other group once I started working on TMS (I'm now pretty much pain-free).

I can understand feeling bad about quitting the group, but remember that this is our "goodist" personality at work. You don't owe anything to the support group--it is not helping you just leave it behind you and move forward. Not everyone is ready to hear about TMS. I personally had to get pretty desperate before being open to this approach.
 
Hi Kathybee. I know how you feel. I joined a really helpful and supportive online group for bladder issues (boy these people really suffer!) and now I'm sure that most of the time what I have is TMS, with maybe the occasional genuine infection. I have made up my mind not to go back because it's like a pain therapy group - a bit of wallowing in our pain and sharing experiences and (quack) remedies. Everyone means well and is very helpful but I honestly don't think most of them would 'get' the whole TMS issue and I'm not in a place where I could cope with rejection. Yes, I am working on that :) So, I think I will just wish them well in my head but not actually say I'm leaving.
 
Hi KathyBee, and welcome to the TMS forum!

There are quite a number of TMS sufferers who find their cure, and then go on to become really strong advocates for TMS discovery and recovery. Some of them are becoming quite well-known - Steve Ozanich is an example, with his successful book The Great Pain Deception. A number of our professional doctors and therapist had/have TMS, and are working hard to bring TMS awareness to standard medical and psychiatric practice. And the folks who stick around this forum long enough, and get involved to the point that Forest labels us "TMS Gurus" (and we laugh about that a fair amount;) ) are another example of becoming advocates.

All this is by way of saying that after you've had some time to find your own TMS path, there's no reason you can't visit that other forum in a few months and post a quick, non-judgmental summary of your success story, with a link to our wiki - if you want to do so. You can simply say "this isn't for everyone, but it helped me". Because you never know who might read it and decide to try something different. In my case, I was researching migraine diets on a forum - and none of the reports of this or that food causing or helping migraines made ANY sense whatsoever. One woman claimed she stopped getting migraines when she stopped eating avocados. Seriously??? And then there was the guy who mentioned Dr. Sarno and recommended The Divided Mind. I'll never forget how that poor guy was severely chastised by a bunch of other people, but I checked the book out of the library the next day, and I've never looked back. To this day I thank him for having the guts to let that forum know about Dr. Sarno and TMS.

I agree with Veronica (as I often do :)) that it's the goodist tendency making you think you should post something right away, maybe to apologize or justify your departure - but I also agree with everyone who said it's not really necessary at this point.

In the meantime, we're really glad you're on THIS forum, and wish you all the best!

Jan
 
And the lady who talked about avocados did not get any strange remarks? That is actually kind of funny. I suppose laughing at her would get you reprimanded by the moderators.
I suppose if you had to give up one food to cure your migraines avocadoes would be a good choice. It is much easier than having to give up a common thing like wheat, dairy or sugar. ;)
Thank you everyone for your reassurance.
 
Hi KythyBee,

my suggestion is to join a psychological (depression, anxiety) or trauma support group. Most there will also have some somatic trouble since its a part of those 'illnesses', but they see it as just another symptom, not the main problem, and they talk about the real underlying issues. I'm in a selfhelp group for depression in my city, it's fun to be with other people and I rarely talk about the pain there, I rather talk about my anxieties, anger, family background, etc.. My body and mood felt great the evenings after the first meetings, since I could finally open up to people. About half of the people there have somatic symptoms, but it's not the main issue. For me the pain is just a reliable indicator how well I'm doing otherwise. Some studies found out, that self help groups are as effective as professional therapy groups, because people there really understand each other. The challenge in my group is to give the quiet people enough room to share and participate and stop the talkactive people sometimes.
 
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