Tarlov Cysts are excruciating pain!
 

I am tired of physicians dismissing pain symptoms of tarlov cysts.
I have had over 20 years of excrruciating sciatica, buttocks, hip and leg pain.

One Dr. was SO correct in saying....people with tarlov disease....
need to sit ...when they need to sit....stand ...when they need to stand....and lie down when they need to lie down!

I have also been depressed for years...because Dr.s cannot and will not diagnose me for Tarlov Disease.... they refuse to believe my symptoms are real...and I am exhibiting extreme pain...and I am helpless, unable to keep a job and now....may be denied disability benefits! Suicide has been going through my mind....

Just Maybe Dr.s will change their views...if more people are taking their lives for the severity of pain symptoms!!!!!!!!!!!!!!!!!

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Welcome to this big group of caring people. We're here for you. We understand.

Yes, that does happen. Some painwrecked people do take their lives out of protest I guess, by the way their providers have made them feel.

Most of the time when a patient walks away from a visit feeling helpless and screwed, you usually are at that point, to the extent that provider can affect you.

It happens... It's happened to a lot of us for different reasons. I know how the confusion and helplessness can hold you back from healing too.

I don't know your case history here, and it's probably over my head, but you may need to go to a different area perhaps to find quality care. Pain patterns can change. I've found that it seemingly takes change to change things. no quick fixes. no magic...

You are being honest about your "sucidial ideation." Again, many of us here understand.

http://www.google.com/search?source=...g-sx6g-s1g-sx3

I think if you're in enough pain and MOST things aren't going well for you because of the combined effects of your sufferings, for a long time, and you are feeling that hopeless, depressed and down-trodden mental state that you're describing, and painwrecked on top of it, anyone could become vulnerable to having a sucidial ideation. It's certainly not uncommon. You're not alone. Not a good thing. Once that taboo realm is broached, it isn't "bad" any more in the sense/way "healthy" people think of suicide. squeamish at the thoughts of it :eek: At a weak, dark and low point/moment of desparation, I think it can become an option to consider, albeit ever so final!!!!!!

Had it not been for your unhealthy state here, I don't think you would be having those thoughts. Don't be too hard on yourself. Suffering is bad.

You're reaching out, so I know there's hope. Take it one step at a time, one day at a time.

Get some postive things going on in your life.

here are some links to get you started...

http://www.tarlovcystfoundation.org/...nformation.asp

Depression:

http://neurotalk.psychcentral.com/forum37.html

Chronic Pain:

http://neurotalk.psychcentral.com/forum10.html

and thank you for not taking your own life...

no question is too silly here. (just don't put anything on the internet you wouldn't want he whole world to see.)

Feel free to PM me if you want.

Hang in there...

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Hi bgaines, and welcome to NT! This is a wonderful site, with lots of friendly, caring, and helpful people.

We're so glad you found us! :)

Here is one more link, sorry if it's a repeat.

http://neurotalk.psychcentral.com/forum73.html

wavedreamer1
 

I have lower back pain and pain in my butt and in my legs and feet. I have a nerve that was damaged during my 3rd spine surgery. That is why I have such pain that they had to put me on an implanted pain pump. See another doctor if you have the insurance. I have seen 12 so far. i am looking for a doctor that can repair the damaged nerve in my back before I become crazy. i can't live much longer with this pain. I knwo how you feel. Sandra

I know!!!!
 

Hang in there!!!!
I to have Tarlov Cysts, and yes the pain is intolerable!!! My family is the one that, at the moment is calling me a miseryguts and telling me I should be happy!! Lovely lot. This is the 26y.o son and his, quite new on the scene partner - a gem! NOT!!!! They are convinced I can just go to the doctor and get something done about the pain. I must admit here tho' that the first time the Tarlovs x 3, showed on the MRI he just scoffed and said they were totally irrelavant BUT when I went back 3 years later he actually brought the subject up himself admitting that, according to him 70% of people have no bother with them "but you being you!" with a grin. (I have a history of doing major outside the square medical stuff and somehow surviving - but it has not made life easy, because these other events HAVE knocked the body around each time. Try telling 6'2", bullet proof, know-it-all kids that!! grrr. (I love him dearly really, he is just being a bit led at the moment) You try and find yourself a decent doctor, I do not know the system over there. I find a steady stream of pain killers is really helpfull and I am best if I keep on the move, not non-stop, just not standing in one spot, not sitting for too long etc. I go to bed with pain and pain wakes me in the morining. I get a few solid hours while the painkillers work and if I can get hubby to stop snoring )-8. Take care, people care, hope you get this. Time for more drrruuugggs. (-* M.

Thank you KauriNZ
 

Such good feedback - I sure hope that poster will see what you've said. It's a couple years since that post was made, but hopefully others with Tarlov Cyst will be inspired.

It's great to have you!

Rae
:grouphug:

Any updates? Seems a very old post. Sounds similar to my situation.