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I swear, if something bad is going to happen......I think I have a "Kick Me" sign on my back sometimes.

First, I normally get those cortisone injections in my neck and lower back. You know the kind where they give you 3 shots about a month apart, and then you can't have any more. Well, I went in about April 24th and got a cortisone injection in my neck. Then that night, I went back to the ER with a horrible headache. They gave me the migraine cocktail and let me sleep, then sent me home. When the cocktail wore off the headache was still there. I had a CSF leak. So either the doctor punctured something, or it did it on it's own, I don't know. So I had to go back to the pain clinic, where I got the injection. They put me back on the table, put an IV in my arm and did a blood patch. They drew blood from the IV, and injected in my spinal area to plug the puncture. It didn't work. The headache persisted. Now, when I say headache, I don't mean my head hurt, I mean my head felt like it was exploding. I called the pain clinic back, but had to wait until the next week to do another one. The doctor said one normally works, and two is rare. I went back in for the 2nd blood patch. It did not work either. The pain clinic doctor sent me to a neurologist that seemed very much like a nutty professor. He said that he thought my problem was the tight muscles in my neck and shoulders. What?! I have had those tight muscles forever. Okay, I will play along. I have been taking the meds he prescribed for pain. Taking muscle relaxers, to appease the nutty professor. Then I started trying Yoga. I now had a painful muscle in my left arm from stretching my arm :blink: My headache has eased greatly, and I will probably get back to work and my quilt room, oh and cooking and cleaning. This has not been fun. I have been reading the posts, but have not been able to say much since I couldn't do much. Ahhhh, I am so happy that is over.

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Mary Beth,  I am so very sorry you are going through this.  Prayers for you for sure.  I find this very interesting.  I flew to Maryland Tuesday because my 16 year old grandson is having severe headaches.  They have not found out his problem yet..  They have done all kind of test, with no positive results..  They are going to do a MRI with contrast to check for CSF leak. Don't know why they had not thought of that before, we sure did not. Really never heard of it.  I know how much he is suffering.  Hope you continue to improve.  My best to you.

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11 hours ago, srichardson said:

Sorry to hear that you have been suffering.  Have you tried acupuncture for the pain?  It probably won't cure anything but it is usually effective for a short while at least in alleviating pain.

Wishing you pain many free days ahead.

I have fibromyalgia, so when the pain comes back, and I know it will, I am thinking of trying acupuncture. Everything is a bandaid fix for that.

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Mary Beth,

Sorry to hear about your pain.....I have fibromyalgia too and it like so complicates things....I fell in the ice last winter hurt my arm.....thought muscles looked saggy and it hurt, went to dr...he did MRI...said I had bone spurs and a small rotator tear too small to repair...wanted to scope it....but I am thinking the bone spurs did not grow over night....so why should that be what is bothering me....and he said the tear was too small to repair...then he said not everything always shows up on MRI....so I, not liking the idea of surgery...said...I will wait...so did for a few weeks...then talked to my regular doc who sent me to PT...but I got nowhere with that...so now I am going to have the scope and whatever surgery on my shoulder is needed...and he said might as well do my carpal tunnel surgery too at the same time....all through this, they keep asking about my pain...well....I always hurt all over anyway...how am I supposed to know what is not fibro pain?....then they do an EKG...and one of my waves is different then when they did it 2 years ago...so again I get asked about pain....yes I have pain...yes I sometimes have chest pain, neck pain.....but I have for years....and how am I supposed to know what is fibro pain and what is not....so now I get to do a stress test first...where they will probably ask me if I am having pain again.....DuH....I have fibro.....I told one of my doctors that I should go to my dog's vet....( I absolutely adore my dogs vet).....as they assess what is wrong without the dog telling them if they have pain...sighhhh....I am missing my long arm too....Hope you are doing better.....Lin

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Oh, I know exactly what you mean. The pain clinic doctor asked me if my pain was better when I went in for the first blood patch. I said, "Who knows with the fibro." He shrugged and said, "Yeah, that's true, it's probably hard to tell." I went down to the quilt studio today, but could not stay for long, just not up to it now. When I was diagnosed with Fibro, the doctor asked if I had pain in my hands. I told him I did, in my hands, wrists and arms, but I thought it was carpel tunnel, again. He said, "Nope, it is the Fibro." Humm. I sometimes think once they make that diagnosis they just blame everything on fibro.

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On ‎5‎/‎18‎/‎2017 at 8:03 PM, tootsquilts said:

Mary Beth,  I am so very sorry you are going through this.  Prayers for you for sure.  I find this very interesting.  I flew to Maryland Tuesday because my 16 year old grandson is having severe headaches.  They have not found out his problem yet..  They have done all kind of test, with no positive results..  They are going to do a MRI with contrast to check for CSF leak. Don't know why they had not thought of that before, we sure did not. Really never heard of it.  I know how much he is suffering.  Hope you continue to improve.  My best to you.

Is his headache positional? If he lays flat it is better? Then sitting or standing it is just too much? I have read on the internet, (someone needs to take it away from me), that you can get a CSF Leak without an injection. It can just happen. I hope they find what is going on with him soon.

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10 hours ago, Mary Beth said:

He said, "Nope, it is the Fibro." Humm. I sometimes think once they make that diagnosis they just blame everything on fibro.

Right Mary Beth....I once told one of my doctors  "I am so glad I have fibro because then I am immune to anything else"  She looked at me with a blank look and then said "oh yah".....it is hard for them too as they have been taught to ask these questions about pain and go from there....I really, really miss one of my old docs who just told me to come on if I had a new pain and he would figure out whether or not it was "just fibro"......and he would do the checks to figure it out.....I gotta get a remark about quilting in here too....so I guess it is like us when our stitches look funky....we just gotta do the work and figure out what is causing us our funky stitches....

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11 hours ago, Mary Beth said:

Is his headache positional? If he lays flat it is better? Then sitting or standing it is just too much? I have read on the internet, (someone needs to take it away from me), that you can get a CSF Leak without an injection. It can just happen. I hope they find what is going on with him soon.

Mary Beth, I ask him if it gets better when he lays down.  He said it feels different, but not sure about better.  Poor guy, he is in so much pain.   I am praying they find the problem.  He is really having hard time coping with this pain..  They got something wrong on paperwork and is holding up MRI.. Just was called yesterday and ask about sons social (all for insurance) someone had wrote number wrong when sending in for approval..  I hope soon.  Glad you are having little relief, and hope and pray you continue to do.  We really need prayers for my sweet grandson. 

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Again i say to you ladies with fibromyalgia, please research gluten intolerence. Gluten is in Wheat, barley and rye among other things..  it causes pain all over your body. Avoiding gluten made remarkable difference in my life. Only pain now when i have eaten something with gluten. Again please look at this. 

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Every time my Hubby goes to the doctor and they ask about his pain level he looks at me and smiles then he says about a 3 or 4.  And I say that's not what you said last night.

One time he said to the doctor I wish you could feel what I'm feeling right now, I bet you'd find a way to make it go away!

We are going to try Stem cell Pain control, just waiting for the appointment.  He has osteoarthritis in most every joint of his body.  Well except his 2 new knees he got 4 years ago, they are doing great!!

We are keeping you all in our prayers! God is the great physician! 

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1 hour ago, tootsquilts said:

Mary Beth, I ask him if it gets better when he lays down.  He said it feels different, but not sure about better.  Poor guy, he is in so much pain.   I am praying they find the problem.  He is really having hard time coping with this pain..  They got something wrong on paperwork and is holding up MRI.. Just was called yesterday and ask about sons social (all for insurance) someone had wrote number wrong when sending in for approval..  I hope soon.  Glad you are having little relief, and hope and pray you continue to do.  We really need prayers for my sweet grandson. 

I am praying for your grandson. I wish there was an easier way to get tests and results. Paperwork!!! I will keep you all in my prayers.

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Mary Beth

I'm sorry to hear you are having medical issues. I guess that was why when I called Garmin, and asked for the quilting lady, I did not get to speak with you.  The representative in question took great care of me though.  I hope you feel better soon.  Keeping you and others in my prayers.

Cagey

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I am just reading this as I don't seem to get here as often as I would like...I am sorry that you are feeling so bad Mary Beth, I sure hope that headache goes away soon and they find out why it is happening.  Also Cathy, I hope the same for your grandson...praying for both of you!

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