Fibromyalgia and incontinence

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Hi everyone,
It's been a while since I posted an update. My incontinence has still not been diagnosed after close to a year of testing and seeing a urologist. I have had severe nocturnal enuresis and daytime issues with urinary incontinence for about a year. I am 26 years old with no clear reason for these issues and am very frustrated. I am currently waiting to see a neurologist to see if he can help. I believe I may have fibromyalgia. I have a number of symptoms that align with fibromyalgia and apparently incontinence can be a symptom too.
Does anyone else have fibromyslgia? Do you know if it is causing incontinence issues for you and if so, how was this diagnosed? Do you take any treatment and does the treatment help ease your incontinence?
Thank you!

 

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I have fibro, but have not had my incontinence attributed to that. I don’t know if they ever come up with a definitive answer to why.

 

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I was misdiagnosed with fibro about 7 years ago. It turned out to be a recurring spine injury, in addition to Neuro-Plasticity (your neurological networks develop additional and new pathways, most notably after spine injuries) Neurologist explained at that time, Fibro was kind of a catch all for undiagnosed inflammation in the nervous system. This does not mean it is not VERY real, just they don’t understand what’s causing it.
I saw a new neurologist just yesterday after 14 months of new odd pains and my butt being numb, then I ended up tearing my abdominal muscles and being hospitalized a few weeks ago. I was doing my morning crunches on my exercise ball when all of a sudden it appeared like an alien was attempting to burst out of my belly! No I was not pregnant, I’m a 60 year old man! It turns out it was only my stomach, I guess I watched too much Project Blue Book!
Once again they found what I was told impossible. I found I have exploded the disks at L2/3-L2/1 in addition to T-12. The previous Neuro’s (2) had both told me this was impossible as it was all hardware supported.
Don’t give up, as I said I saw the first two who didn’t have a clue, the 3rd took 14 months to see but found the source of my problem within a 4 hour exam. I guess that’s why the wait was so long, she is AMAZING! The only positive is I feel like I could ride my Harley forever without my butt hurting!

 

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@Sprung87 thanks for sharing and sorry to hear all you've been through! Glad to hear you have finally found an amazing neurologist.

 

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It was a neurologist who finally diagnosed radio-myelopathy in my spine. (I wish I had seen one immediately!) I had had surgery for a single myeloma tumor in my T6 vertebrae. I had five sessions of radiation from T4-T8 following the surgery.

About 18 mos. later I began having tingling in my right leg. It progressed in nine months to both legs and from the point of being unable to walk steadily and then paraplegia. Took me 10 mos. to get a diagnosis from an excellent radiologist. Those were some frustrating months right smack during the pandemic. Luckily, a new radiologist (trained at Mayo) was starting practicing in the hospital, and I got in to see her within a week. She had seen my very rare condition at Mayo. I had treatments with a Cancer infusion to help close the lesions on my spinal cord. I cannot recover the parts of the spinal cord that was damaged, but we think for now,the radiation damage is in check.

During Covid, it took months to get appointments (still does), and I was getting desperate. What I did: I literally begged to see the excellent neurologist who had stopped taking patients. Actually, I got my surgeon's APN to beg for me. The neurologist's excellent APN agreed to talk with me.

I took a four-page chronology of when symptoms began/changed, etc., including all the appointments with doctors and their responses. (This is important. You can send it ahead of your appt. and keep one to bring to the appt. Keep it up to date on your computer! (Use your Health Chart or whatever online service your doctors/hospital uses to help you get dates, etc. straight.)

When Excellent APN got to the part about the symptoms appearing at about 18 mos, she jumped up, and ran to get the doctor. He diagnosed me on the spot.It's a rare disease and no one knows why or who might get it.

But as the disease progressed, I lost control of my bladder and bowel. Pelvic floor exercises NOW could help you. They won't hurt!

So: Get your story on paper, and don't give up advocating for yourself. No one else can really do it for you. Stay calm and polite and persisent. You are worth it.

 

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Great advice. I keep my entire medical history on my phone and update it with any issues/tests