Chronic Pain members - Welcome, please introduce yourself

I may not have mentioned the brand name. Just search for “spinal cord stimulator “

Hi, I’m Gayle. I have degenerative disc disease, pudental nerve entrapment, and tailbone pain. I was treated for SIJ pain for years and it does have that pain pattern, but nothing worked. I’ve had severe sitting pain on the left side since 2009. I just went through the Nevro spinal cord stimulator trial and I am thrilled to report that I got a big reduction in pain. I am so excited about it and can hardly wait for the permanent one to be placed! I hope I am not being overly optimistic and of course, I don’t know what the long term effectiveness will be. But I do have a friend in Dallas who has had hers, a Boston Scientific brand, for years. She still loves hers and says she probably could not get out of bed without it. I am really excited to find this site! Gayle

Hi @gaylerenee, It's good to hear that the Nevro SCS trial went well for you and you had a big reduction in pain. I thought you might find several other discussions helpful as well.

--- Comparison of Spinal Cord Stimulators from Boston Sci., Nevro:
https://connect.mayoclinic.org/discussion/comparison-of-spinal-cord-stimulators-from-boston-sci-nevro/
--- Spinal cord stimulation: Will Nevro help when Medtronic didn't?:
https://connect.mayoclinic.org/discussion/nevro/

Hi I’m Valeda and I’m a Medical Mystery in so much pain, QOL is completely gone, I don’t know if all the pain is coming from the new diagnosis of Nutcrackers Syndrome, because I also have a very rare syndrome called Ischiofemoral hip impingement.
life sucks when you’re in so much pain and bedridden at 62, I’m feeling very depressed about this. I was really shocked that my life could change just by bending over to dry off after getting out of shower, this nerve pain has Completely stopped me from everything, I had just gotten several injections from my Orthopedic doctor and I was hoping to begin PT but impossible with the pain firing off constantly. Im totally Atrophy from my hips and pelvic and legs from not being able to be mobile, any suggestions please, I’m so uncomfortable, I’m going to see a specialist vascular surgeon but unfortunately they are booked till end of April., I’m on a cancellation list, but highly doubt anyone would miss a chance to see a physician who actually knew about these rare conditions I have. Anyone else who has been diagnosed with any of these things please let me know ASAP, Thanks to you all that care

Hi:

My name is Don and I live in PA. I have had chronic pain for years due to severe DJD in multiple joints along with nerve pain due to Idiopathic Chronic Axonal Polyneuropathy and also left sided Bertolotti Syndrome. Celebrex was useful in managing all but now unable to use due to Idiopathic Non Cirrhotic Portal Hypertension. The only medication that helps is Medical Marijuana daily capsule of 2.5 mg CBD/THC with a 5 mg capsule on bad days. I also perform a stretching program 3x daily along with walking 15 minutes 4x a day.

My husband started with 100 mags three times a day. After two weeks it was increased . Later it was increased to a total of 1800 daily and works very well.
I think it is normal to start at 100 as your dr said. I hope it works well for you.

Hi all, I’m a new member to this site but not new to chronic pain unfortunately. Following an injury, I ended up having a fusion of C-5 through C-7 Sept 2, 2014. The orthopedic surgeon used allograft which took a long time to bridge. He explained stabilization was considered “successful “ I was left with the original nerve pain with added bonus of pain to the other side. I was medically retired from a career I loved. Following “ retirement “ I blew out both knees which added to the pain as well as inactivity. The first part of Jan 2023, I was having symptoms which I couldn’t explain and had a Cervical CT w/ contrast which showed hardware intact, bridging stable but showed severe degeneration of the atlantoaxial joint. Now just waiting to see how it will be treated. As far as pain control, very little due to the opioid issues which in all honesty I’m glad I never went down that road. I’ve tried the medical marijuana once but didn’t like the effect. So other than 10 mg Flexeril, I just grin and bare it. Quality of life is not great , things I used to do are a distant memory. But I just take it day to day.

Thank you for your very helpful reply.
Yes, I started with 100mg 3x a day. It was increased after a week to 200mg 3x a day.
Yesterday it was increased to 300mg 3x a day. I shall wait a week to see if the increase eases the pain and, if not, I will talk with my doctor again.
I really hope this amount will work. I do not like taking too many tablets.
Again, thank you.

Hello @dabbs, welcome. It's nice to have you join us on Connect. Unfortunately, the usual "pain" is what brings us all here. I hope you receive support and learn from others experiences while receiving and sharing encouragement.

So sorry things turned out in an unfortunate way for you after what sounds like some bad luck. How sad to walk away from a career you loved. The term you use, "medically retired" is a good way to put it. I might steal that from you. I always hate saying I'm disabled when people ask why I have not been at my job of 27 years anymore.

Kudos to you for not going down the opioid path. Grin and bear it, huh? That must be tough some days. I give you a lot of credit. My pain journey went down some embarrassing paths. Panic and denial never helped my quest to find a fix or a cure to which there was none.

Taking it day by day is the best way to see it. Sometimes you have to get through a moment, an hour or just the next 5 minutes. Please know that while quality of life may change, it does not have to define who you are. My mindset nowadays is more about what I CAN do not what I can't. It took me a while to get there and I still work at it, but hope goes a long way. How about you? What ways do you find joy? Do you have hobbies or any new interests that you can do?

Rachel, Thank You for your reply. Like you, I hated the word “disabled”. I’ve always been hard headed lol. After spending 32 years taking care of others in their best and worst moments we’re all I knew. I know there are others here that are medically trained and unfortunately we know what the usual outcomes can become. The first year after being “ retired “ I honestly went through a year of a deep depression and learned how bad and deep depression can become. Truthfully there were moments I considered doing the worst . One day I finally “woke up” and pursued a new purpose in life. I joined a forum ( which I won’t list ) and started helping others. After the forum was bought out I became involved helping older neighbors and trying to live a normal life. I went out and bought a boat ( I swore I would never buy another one prior to selling my old boat ) and try and get back into fishing. That didn’t last long as I tore all the meniscus in both knees lol. That’s one way to forget about neck pain for a bit is when you tear your knees up lol. So the boat was sold. As I looked through this site, I noticed there were other Health care professionals on this site as well. It’s actually a blessing and a curse as most of us are the worst patients lol. I was medically retired in 2016 and have learned more about all the road blocks and walls that “ patients” have to go through just to get help. Definitely a eye opener. Again Thank you for your reply ! I’ll stop my rambling now and make a pot of coffee lol. What I would give for a full night of sleep!……David