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Hello again...

Sep 06, 2018 2:32 PM

Hi all,

I'm not sure how many of you may remember me but hello again. I'm sorry I've been MIA for a few months but I have taken some time out to re-evaluate my life and deal with new disgnosises.

I've been in and out of hospital the past few months with numerous problems. It started with incontinence issues and back pain - severe pain - with tingling and numbness around my bottom and down through my legs. While in hospital it was discovered I have degenerative disc disease in my lumbar spine. Since then I have been experiencing retention issues - as I said to my Dr first I couldn't stop it now it won't come out! Gotta laugh right or I'll cry.

So now I have been told I have cauda equina and I have to self catheterise throughout the day to prevent me going into retention again, because that means hospital stay 😣. Anybody out there with fibromyalgia Syndrome or back related pain will know trying to bend down is not easy! So trying to catheterise is a comedy of errors daily! Lol.

As you can imagine this has affected my mental health quite significantly. Further so when my rheumatologist advised me I'm probably going to end up in a wheelchair by the time I'm 40. I'm now 31. So I have decided to crame as much as possible into that time just in case. I have three beautiful girls and I will keep going for them.

I hope you're all well and life is treating you good. Sorry for the essay, I felt a need to release everything and I know everyone here can understand better than my family and friends, my husband is fantastic but he can never understand life with chronic pain.

If I can help anyone, or offer a few laughs and a chat please message me anytime.

Love and positivity 🌈

Hayley x

Sep 06, 2018 3:32 PM

I remember you. Good to hear from you. So sorry what you have gone through and continue to go through.

Sep 06, 2018 9:26 PM

Love and and hugs to you!

Sep 07, 2018 4:26 AM

Thanks guys it means a lot to me ☺️

AnimalLover2 how have you been? How are your family? Xx

Pfam5 πŸ€— gentle hugs too xx

Sep 07, 2018 8:29 AM

Thanks for asking Hayley. My fibro is getting progressively worse. More pain more often. My family is good. We were worried about my brother who lives in Maui during the recent hurricane. Thankfully he came through fine. I hope you have less pain.

Sep 07, 2018 11:57 AM

I'm glad to hear your brother is safe.

I hear ya on the pain scale, I wish there was a"magic pill" or something to get rid of it. What medication are you taking now? Have you tried any other therapies (massage, yoga etc)... I'm working my way through some to find some sort of relief. I hope you find something to help even just a little bit. But if you ever need to vent you're more than welcome to message me anytime.

Soft hugs πŸ€—

Hayley x

Sep 07, 2018 1:18 PM

I'm taking Lyrica. I had 1 massage. I hurt so bad after never again. I've had Physical Therapy for various things. Helps some.

Sep 07, 2018 6:17 PM

I saw my Dr today, changed me to gabapentin so we'll see how that goes πŸ€”

Sounds like you've been through a lot recently with your pain, I hope you're okay xx

Sep 07, 2018 7:23 PM

Sorry that you are having so many problems but you have a fantastic attitude!

Sep 08, 2018 4:02 PM

LMB thanks lol I think we have too otherwise we'd end up gibbering crying mess on the floor! 🀣

Hope you're okay!

Take care

Love Hayley x

Sep 13, 2018 1:24 PM

Hayley, I am so sorry to hear what you're going through. I've suffered from DDD since the 1980's and I'll be 57 in 2 months, so for about 33 years of OA & DDD, which was mostly in my spine and knees.

When I had a tumor removed in 2010 I'd been suffering with the OAB for 2 years. Since that surgery I now also have bladder retention along with bladder and bowel incontinence. The doctor checks my retention every 6-12 months and I know it's just a matter of time before I have to start cathing. It's like I go to pee and dribble out then it stops, so I think I'm through and it's starts again. I have to take a deep breath and blow it out to relax the muscles that control my urine flow (muscles). So I completely understand! Sending you support in hugs love and prayers! πŸ™‚β€πŸ™πŸŒΌ

Sep 13, 2018 4:54 PM

It's a nightmare isn't it. Surprisingly the daily catheterising I haven't found too bad, just embarrassing really. I've got to see the urogynaecologist next month, I think their going to check my muscle strength see if that is causing the continence issues. Actually I'd go so far to say that having the choice to catheterise has changed things for me. I get to control and prevent any hospital admissions and I'm not so worried about leakage - my urology nurse advised me when I go to the toilet naturally to still catheterise afterwards because it will completely empty my bladder so I avoid those oops moments now! If you ever want any information or advice message me anytime.

I'm sorry to hear everything you have been through. I saw your post about the surgery. I hope all goes well.

Take care

Love Hayley x

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