Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

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Sep 02, 2017 5:21 AM

I'm new on here so I would like some guidance of what is appropriate to discuss on this forum. Many thanks for any help that comes my way.

Sep 02, 2017 6:53 AM

Welcome Californiagail64. We all have different diagnoses but are no strangers to pain. We are supportive and you'll find hope here. πŸ‘

Sep 02, 2017 9:43 AM

Welcome to our group, we pretty much discuss everything on here. We vent to each other, we give each other advice, we cheer each other up. I have lupus and SjΓΆgren's syndrome, fibromyalgia, herniated discs in my back, osteoarthritis, hypothyroidism, acid reflux, anxiety, depression, and PTSD. Some of us share one of the same illnesses. So usually if you have a question just post it and somebody will answer and share their experience. We also talk about how people don't understand our illnesses. We vent about doctors not understanding. But when someone is having a good day we share it too. So nothing is off limits in our group. So feel free to discuss whatever you like.

Sep 02, 2017 10:04 AM

Hi πŸ‘‹πŸΌ Welcome to the group! You can talk about anything you want here really πŸ’• I have fibro, M.E and other undiagnosed problems 😬 If you ever need a chat or a vent we're all here for you 😘

Sep 05, 2017 1:00 PM

Thanks this sort of thing is very new to me even though I have been living with scoliosis and spondylitis for many years. I've lost count of the amount of surgeries that I have on my spine and now my neck. It's limited my life on so many levels considering that I used to be a very fit and active person. The biggest thing is losing 7 inches in height and my whole body shape changing into something I no longer recognise. But it's great to know that I can talk to people with similar problems.

Sep 05, 2017 1:02 PM

@CaliforniaGail64😊 welcome to our group of Amazing people. We seem to talk about anything. Good days. Bad and in between. What ever you feel comfortable with . πŸ€—πŸ€—

Sep 05, 2017 1:18 PM

Welcome to the community. We are very supportive.

Sep 05, 2017 9:04 PM

Hi! Welcome to our group! πŸ˜ŠπŸ€— We are a very supportive and compassionate group!

Sep 06, 2017 9:15 AM

Californiagail did the surgeries on your neck help? I have scoliosis but they say it's only about an 25 degree curve. I've had terrible neck problems the older I get. Did they fuse your neck?

Sep 07, 2017 12:19 AM

Welcome!

Sep 08, 2017 5:24 AM

Hi Frustrated, as I only had my surgery in June it's still too early to tell. I am experiencing symptoms that they were not expecting so they have now ordered a complete MRI scan of my entire spine. It was more of a tidy up than a fusing as far as I'm aware there is a small metal cage around the worst affected area. The reason for the surgery was narrowing of the spinal pathway due to the disappearing disks and my vertebrae being in danger of crushing my spinal-cord again. Another reason for them doing my operation was because I was becoming dizzy and losing my balance my balance hasn't improved in my mind a great deal but the dizziness is no longer there. In their mind this was only a preventative measure as they know full well that within 2 to 3 years I will need to go back in and I will have to have my neck pinned. Hope this helps a little but at the end of the day it still hurts.

Sep 08, 2017 6:56 AM

Wow California. That sounds like a lot. I'm so sorry. Do they give u anything for constant pain?

Sep 08, 2017 2:57 PM

I know Frustrated it sounds like a lot but it's nothing compared to the other surgeries I've had. Yes I'm on pain medication but because I am allergic to all opioids it's very difficult for me to take anything that does much good. Fentanyl is very good at killing almost all pain but it is highly addictive so I only use it when I have surgeries and then as soon as I am able to cope with the pain and return to my normal medication I stop using it. To be honest nothing much cuts through a constant pain I'm in, but as this is been going on for so many years I have pretty much begun to except that this is the way my life now is. No matter how many times people sympathise with your pain unless they actually experience that pain they really have no idea. I would certainly put off any spinal surgeries of any description unless there is no alternative.

Sep 08, 2017 3:32 PM

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Sep 09, 2017 1:49 AM

@Yolanda2015 I live in the UK so that's not available for people like me. πŸ˜”

Sep 09, 2017 7:37 AM

That's what I'm trying to do California. Put off neck surgery. I really do t want it. I went through back surgery last year for a herniated disc at L1-2 that was pressing on a nerve. They let me go the same day and by night the pain was absolutely out of control. My hubby had to call an ambulance and bring me back to the hospital. I stayed there for two more days. They gave me fentanyl for the first time and it really helped but that was just while I was in the hospital. They sent me home with a script for oxicotin for 12 days. I took it as prescribed but was scared i would get hooked. I was ok but it sure messed up my tummy.

Sep 09, 2017 1:23 PM

Bless you, none of the surgeries are very easy to deal with. What part of California do you live? I have very dear friends that live in San Francisco. I am surprised that they sent you home so soon after surgery I have only once been in and out in the same day and that was considered a minor Op compared to the ones I've had before and now. I see on one of your comments that you are to have an MR I scan let's hope that they will be able to tell you how severe your neck damage is. Even the MRI scan is not particularly nice to go through as that in itself can bring on more pain. I know this might not sound very encouraging but I have had a lot of MRI scans. Just hang in there if you trust your surgeon then be guided by him or her.

Sep 09, 2017 1:41 PM

Thank u California. I don't live in California. I live in South Dakota. Yes it will be interesting to see what the MRI says.

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