Fibro symptoms were so severe lately, found out I've had a CSF leak... - Fibromyalgia Message Board

spruey3 · 11-28-2008, 09:41 AM

Hey Everyone, so sorry I haven't posted in a while, I wasn't doing too well lately, but MUCH better now

The past couple of months I had deteriorated severely. To the point of needing to use a cane to walk, and then only being able to go about 20 feet at a time. I haven't been able to grocery shop in about 2 months or do much of anything else for that matter.

Then came the horrible headaches. I've added a Neurologist to my pain management team to attempt to get some relief. All of the medicines they had me try just made me ill, and have done nothing to calm the new migraines I have been having. I already have the "stroke migraines". I also started with a Physical Therapist that specializing in "tender touch therapy" for Fibro patients. My ability to balance went from poor to horrible in about 3 weeks time.

Finally, about two weeks ago, my Rheumatologist suspected I had a spinal leak. So off to the hospital I went for a spinal tap. The ER attempted twice, that was painful, I will NEVER do that again. A spinal tap, or lumbar puncture under flouroscopy in radiology is definetly the way to go! It was basically pain-free and very easy to go through, compared to manual spinal tapping.

But, the pressure of my spinal fluid was within limits, so if I had a spinal leak before it was possible, but extremely small... Well.. after the three spinal taps I had done in the hospital, I went down hill VERY quickly. I developed a major spinal leak because of the taps.

My symptoms were, severe constant headache, severe head pressure (unrelieved) severe vomiting, dizziness, passing out when standing after about 2 minutes. Weakness, burning pain in my neck and shoulders.
After about 4 days, I was unable to move by myself, unable to stand, vomiting constantly, had such extreme pain, and severely dehydrated. So back to the Neurologist I went, just to get there was a trip to hell, sitting in the truck, I couldn't recline back enough, and the pressure just made me want to fall down and pass out, once the ride was over.

So... I was admitted to the hospital for a couple of days. I don't really remember much at this time. I know I had some CT's and stuff done. But, I was unable to comprehend what anyone was telling me. It was like I couldn't understand the words, and I could barely grasp them. Like everyone was talking in foreign languages. I was basically drugged and dozing in and out, but even then, I still had the pain and pressure in my head, neck, and shoulders, and by now my eyes were so swollen and bulging, it was just gross.

Then relief came. I went back to radiology to have a blood patch done. This was extremely painful, but SO worth it. They took a couple CC's of blood from my arm (my 5th IV site, all the others infiltrated) and injected it into my spine. The pain was so severe, and my spine swelled up, I was unable to use my arms or legs well, they kinda just twitched. But, the pressure dissolved in my head in about 10 minutes time. The first relief I had in over a week. I had to lay completely still and flat in the hospital bed for about 5 hours, and I was on complete strict bedrest. But, once that was over, I stood up. There was no pressure, dizziness, or fainting! I was sore as all hell, and stiff as a board, but alive.

It took 2 days after until my face went back to normal, and I was able to get up and down on my own, but it was well worth the trip. I had the blood patch done on Monday, and today is Friday, and this is my first full day home

in over a week. I'm so happy, tired, hurt, but happy and alive.

ANYWAYS... let me get to the point...

((I just love to take the scenic ways, and never the short cuts))

Does anyone else here with Fibro suffer from Spinal Leaks??
I've asked Doctors and google

, but the answers are all so different, I just want to talk with someone who has the same problems.
Is this normal for patients with Fibro? some people seem to believe so...
Is this completely unheard of???
I don't know, I'm just attempting to fish for some answers

kirstee · 11-28-2008, 10:04 AM

My eyes watered while reading your post. I really feel for you having to go through all of that stuff to accomplish some relief. Personally, I have not heard of FMS patients having a tendency towards spinal leaks. Not all things are caused by FMS. But truly, I wish you well and hope you can find some better answers than blood patches in your spinal column. Oy vay, darling.

Blessings,
Kirstee

bevann26 · 11-29-2008, 07:06 AM

hi spruey..i know exactly what you went thru...i had a blood patch done about 30 yrs ago. my spinal fluid leakage, however, was from having a mileogram test done on my spine...the hole from the needle never closed over. i had fibro then also, but knew it was'nt from that. i had started young with my spinal issues.
did your neuro say your spine was the problem? just curious....glad you're feeling better, bevann

spruey3 · 11-29-2008, 10:08 AM

BevAnn.
My Rheumatologist suspects my spine has problems.
My Neurologist is not convinced of anything yet, she has no idea why I'm getting my headaches.
Just like with Fibro, all testing comes back normal/negative. She has referred me to the Ear, Nose, & Throat Dr, because I get facial pain on the left side of my face that affects my left vision, and the MRI on my brain earlier this year showed cysts there, in the upper sinus. Nothing that SHOULD cause pain, but, it's the only thing there so far that COULD cause pain... My optical nerves and stuff are just fine.
But, I have never had a spinal MRI, and I'm still not personally ruling out MS, even though everyone else has... Regardless, you don't need lesions (necessarily) to have MS anyways... It's a low percentage, but hell, I've had the "rare" or "barely" ever happens stuff my whole life, I wouldn't be surprised.

Glojer · 11-29-2008, 09:21 PM

spruey, I just read your post with my mouth open. Oh my how you endured that I will never know. So happy you are doing better. To answer your question though, I don't think fibro has anything to do with spinal leaks, at least I have never heard or read anything about that. Could it be from some auto immune problems? I have just been reading a book called Women and autoimmune disease it has a lot of info in it.

Glojer