I've been away...

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I've been away...

Post  02R96 on Mon May 31, 2010 11:33 pm

Hello everyone,

I see most of the regulars are still here, although not necessarily a good thing. I've been off the board at my Pain Doctors suggestion. It was his opinion these forums cause me to focus too much on my headaches.

I'm on week 11 of my twelve week pain clinic program. The end result? Not a damn thing has changed. The physical therapy (though it has loosened my neck up somewhat), has done nothing to relieve the pain and headaches. Biofeedback? No help to me at all. An expensive program with little to show for it.

Looks like I'll be coming around again. Now I need to figure out how to scrape up $275.00 of out of pocket expenses. Back to pain management...
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Re: I've been away...

Post  Ivy on Tue Jun 01, 2010 4:11 am

Hi Dan,
glad to hear from you but sorry that your vacation from Ronda's has not been helpful Crying or Very sad
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Re: I've been away...

Post  pen on Tue Jun 01, 2010 5:41 am

I have been told to keep away from forums by drs and therapists.
I have to say I am better here than away.
I dont know what they think we are.....self indulgent....who knows.
Who can help but focus on pain?

It is overwhelming, well for me.
I have had so much empathy and support form you good people.
I dont think they understand, I really dont.

P

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Re: I've been away...

Post  HeelerLady on Tue Jun 01, 2010 8:00 am

Dan,

Glad to see you back. Sorry to hear that things aren't any better.

I find it funny that doctors would think that a forum such as this would cause you to focus on the pain. Um, the pain is always there and this is the one place that others understand and can give suggestions to get through those dark days. It's sort of like saying that all of this is in your head and if you quit thinking about it, it will go away. Oh so funny...not!

Hoping you find some relief soon.

Becky
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Re: I've been away...

Post  Almostangela on Tue Jun 01, 2010 8:12 am

Welcome back, Dan

I was wondering what happened to you. I had hoped you were cured. Sorry that was not the case. Glad to see you back anyways.

Angela
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Re: I've been away...

Post  tecky on Tue Jun 01, 2010 8:24 am

It's nice to see you again, Dan.

I'm sorry about the time and expense on the pain clinic, and that you don't feel it helped.

When I was hospitalized in Chicago with a famous headache clinic, the psychologist in one of the "classes" there actually suggested we find a forum of other migraineurs because of the isolation. I think this forum is a great blessing. It's priceless to have people who understand all the weird symptoms and the disrupted lives we lead.

Glad you're back, but wish you felt better. Hang in there, Dan. flower
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Re: I've been away...

Post  alli on Tue Jun 01, 2010 10:24 am

I'm sorry the pain clinic didn't help. I wish for you that it had. I don't understand why doctors would tell people to stay away from a support forum. Talking to people who commiserate and identify with me helps me handle the constant pain that I experience. It doesn't make me focus on the pain any more when I am here as opposed to when I am off the forum.

Ah well... I think maybe when they run out of ideas on how to help us, they grasp at straws.

Alli
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Re: I've been away...

Post  pen on Tue Jun 01, 2010 10:44 am

It is the focussing thing.
They really do think we shouldn't talk about our pain because it makes us focus on it and therefore feel it more.
There is a view that forums are a form of self indulgence and like a pity party.
I sure have tried to disabuse them of this view that we all just sit and fell sorry for ourselves.
And too. Here in the UK our two big support associations have forums and FB pages, so .....go figure!!!

On the pain clinic thing. I have just been given an appointment for Thursday.
As I am on day 17 of migraine, my chance of getting there is not at all good.
I will give it my best shot. I just hope it isn't more relaxation techniques because I can NOT do them.

Given Dan's experience. !!!!!!!!!!!!!!!!!!
Sorry it didn't help Dan. Bright side....we get you back... Very Happy
But sorry for you that we did.

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Re: I've been away...

Post  milo on Wed Jun 02, 2010 10:05 am

I ALWAYS refer my patients to online support groups, even provide them with places to start exploring.

Any Doctor who disagrees is likely uneducated about the usefulness of forums, particularly with illnesses that keep people at home for lengthy periods of time.
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Re: I've been away...

Post  pen on Wed Jun 02, 2010 10:52 am

Thanks Milo. Good comment.
When I did CBT they asked me to boycott this forum for 2 weeks.
Did it help? Of course not, I just overburdened my family, none of whom have migraine.

Some of the drs etc have some strange ideas.
I think they do think we al sit and moan and make each other miserable....

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Re: I've been away...

Post  02R96 on Wed Jun 02, 2010 11:36 am

Well it's great to be back.

My opinion of the Pain Clinic just took a turn for the worst. Reference my "rant" post. Time to start looking for another doctor, again.

Benzo's... Suspect
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Re: I've been away...

Post  mxgo on Wed Jun 02, 2010 12:28 pm

I've been involved in three support groups, including this one; knee geeks (for a broken knee cap), kidney cancer (I had one kidney removed), and this one. I've got a lot of useful information from all three.

Some times, I've had a pain or symptom that I think is unique to my medical problem. I post it, and I usually find that, for that medical problem, it is not uncommon.

For that reason, that is why I think these forums are great. But, I think that MDs are afraid, that a lot of misinformation is given in these forums. But, then, we also get misinformation or not enough information, from some doctors, which we check out in these forums.

Lets remember that Dr Robbins, who is a member, understands the need for the forum.

Just my thoughts.

Martin
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