Chronic Pain members - Welcome, please introduce yourself

@jimiwho
You are not alone!
We are all suffering.
Please keep trying and do not give up!
Hugs!

@pennycurious1 I know we are all together as suffering in pain. My friends talk to me in their pain, Friend Penny the Curious 1! My ego, needs to join and not lead when people ask me.
My apologies. I have lots of questions and very few answers and thankful I am in your SUPPORT GROUP! You set me straight any time! ☺️

@jimiwho the fatheaded! Hope I am getting cured!☺️

@patti72white hello, and I’m sorry you have so much pain. What do u mean when you say you can’t have any THC in your system? Does it interact with your meds? Is it because of your underlying disease? I’ve just never heard of this.

Hi my name is Greg and I have a lot of chronic pain due to total hip, total knee surgeries and found out last year my right shoulder needs a replacement as well due to severe arthritis. I have had CABG surgery x5 and less than 45 days after that 4 out of the 5 grafts failed so I started my journey with stents. I coded on the Cath table the 1st time and they did CPR and I had just had open heart surgery so I have a lot of pain in my chest that comes and goes as well so basically I'm in pain all the time and it's getting really hard to deal with it anymore, and I'm always dealing with the heart issues so it's overwhelming to say the least. I've been recently dealing with severe abdominal pain that I have yet to get a diagnosis so it just sucks..

Hi all. My name is Brian. I’m an assistant administrator of payroll and tax reporting for a state government. I’m 47 now, and just got discharged from the hospital after my third cervical fusion surgery, fusing C2 thru C5. In 2008 I had C5-C6 fused. In 2019 I hadC3-C4 fused after myelopathy began damaging my spinal cord and taking away the functionality of my arms, fingers, and legs. Thankfully the surgery relieved and resolved most of those issues. However the hardware eventually began to back out and spinal was compressed again, leastto my recent surgery.

I’ve been in chronic neck and upper back pain every minute for the last 27 years. I try to live like a normal human. I have a full-time job. I rarely miss a day of work unless I’m on a medical leave of absence for a spine surgery of course, lol.

Lately I find myself worrying more and more about my future and my ability to stay a productive human and have some kind of personal life and relationships as the pain continues to increase along with all “normal” aches and pains that come with age. I’ve never seeked out a support group or any kind of mental or Amy support from others in the 27 years I’ve been a chronic pain. I’ve always tried to keep my burden only my own and not put it on others. But I’ve reached a point where I need to know that I’m not alone and there are others out there who understand. Thanks to everyone for listening and sharing.

@rocky1 I was diagnosed with unremitting SUNCT in 2020 at UCSanFrancisco. I did my initial appt online and had follow ups ultrasound guided SPG etc in person.
The hardest part is a real diagnosis as Doctors (I have seen/spoken with research neurologists at 4 med schools ) continually say misdiagnosis is rampant. The only real way to know is if you respond to Lamotrigine. It doesn’t help SUNA or other Trigeminal issues. Presumably you were prescribed Lamotrigine by whoever diagnosed your SUNCT? If not - you need to focus on 1) Making an appt - perhaps online - at a campus with faculty doing research (eg UTHouston, Thomas Jefferson (Philadelphia) UCLA, UCSF, and having familiarity with SUNCT. This can take 6 months to get. My experience is that few Neurologists actually work with SUNCT patients but if they do they are interested in you. Check NIH online eg Pubmed to find researchers 2) Email the faculty member directly. 3) Most specialists will only act in an advisory capacity and you will need a local GP/ PCP or Neurologists to write prescription refills and work with them. I just want to warn you that a general headache medicine neurologist who may list SUNCT & TAC among of boatload of their specialties is not going to get you there unless they are engaged in. Research and communicating with other SUNCT researchers. I was lucky to find the right doctors and had a background in science research. Let us know how you get on.

@rocky1
Hi Roxanne - my name is Sharon and I was diagnosed with SUNcT at UC San Francisco in 2020. I connected on another page but just want to be sure that you find the right answer & point you in the right direction as this is not an easy path.
I did my initial UCSF appt online (I was referred from UCDavis as a possible TAC patient) and had follow ups ultrasound guided SPG etc in person.
The hardest part is a real diagnosis, as Doctors (I have seen/spoken with research neurologists at 4 med schools ) continually say misdiagnosis is rampant. The only real way to know is if you respond to Lamotrigine. It doesn’t help SUNA or other Trigeminal issues. Presumably you were prescribed Lamotrigine by whoever diagnosed your SUNCT? If not - you need to focus on 1) Making an appt - perhaps online - at a campus with faculty doing research (eg UTHouston, Thomas Jefferson (Philadelphia) UCLA, UCSF, and having familiarity with SUNCT. This can take 6 months to get. I would avoid generic headache Neurologists. My experience is that few Neurologists actually work with SUNCT patients, but if they do they are interested in you. Check NIH online eg Pubmed to find researchers 2) Email the faculty member directly - ChatGPT or Google . 3) Most specialists will only act in an advisory capacity and you will need a local GP/ PCP or Neurologists to write prescription refills and work with them. I just want to warn you that a general headache medicine neurologist who may list SUNCT & TAC among a boatload of their specialties is not going to get you there. Research and communicating with other SUNCT researchers is vital. I was lucky to find the right doctors and had a background in science research. Let us know how you get on.

@bricurran I've had a spinal fusion procedure done on my neck, first at the C5-C6 level, and then about 18 months later at the C7-T1 level. It's been a few years now since the surgeries, with no complications with any of the hardware. When they performed your surgery did they use a piece of donor bone to fill the gap? Both of mine were done this way, and the bones are fused now. Did your surgeon give you any reason why the hardware was backing out?

@bricurran
You are not alone!
Keep trying! Somtimes there is relief where we do not expect to find it!
Never stop believing!