Thanks I have this condition for 5 yrs. I want to go to Mayo but have no funds. This will help see what was offered. Thanks for putting this out there and maybe connect some people with this problem
Thanks, Lee! We try to be the light for people in that darkness. We grappled with a lot of unknowns for a long time and found ourselves in that darkness ourselves. We turned to CZcams and found that there is a large community of people who are willing to lift one another up and bring that light back. The most that I can tell you to do is to try and find balance in your life. Find what your stressors are and find a way to mitigate them. Put routines and processes in place so that you don't have to worry about where your keys are or if the laundry is done. When you know that the laundry is started on Monday.
The sharp pains and burning sensation sound like they could be related to central pain syndrome. The foggy brain sounds like fibromyalgia. You look fine because fibromyalgia is invisible, it is upregulated nerves. I have similar symptoms, so I think that's it. I could have diagnosed you in 5 minutes. Neurologists don't want to deal with it, BTW. Even though it is a neurological disorder. They will refer you to a rheumatologist, who deal with autoimmune disorders. Most rheumatologists don't want to deal with it either. Look for TedTalks and other info on central sensitization, fibromyalgia, and central pain syndrome. Educate yourself. My least favorite words are "But you look fine." Good luck.
Thank you so much for this video. I too have central sensitization just got it in October by a ganglion impar injection that went too deep. I have had chronic coccydynia for over 12 years and had a total of 9 steroidal injections its a slow miserable recovery
Hi sorry to hear and thank you share your story , i have just been diagnosed with this awful condition its on my feet legs hands arms face , iam 32 in uk no body know wat to do with me 😞 Have you found any treatments or medication that works hope your doing well
Hey! Lots of stress mitigation techniques, routines and processes in place to remember where stuff is, patience, humor, a positive attitude. Honestly, those have been the most helpful things.
ran across your video. How are you doing now? My face is on tingling fire since 5-31-19. I'm wondering about your journey and if I can learn from it. Diann in Idalou, TX
For me it's like my skin is constantly burning and feels really tight and I get random sharp shocks of pain that are in my tailbone I also get shooting pains down my legs and feet and tingling sensations. It's impossible to sleep my bed feels like concrete its horrible because nobody understands you. It has been a living nightmare I too wish I was dead at times but have kids to support and need to stay positive your not alone! Stay strong 💪
Sounds like your neurologist definitely checked you thoroughly. I have been diagnosed with central sensitization but other doctors don't take it seriously at all, and pretty much ignore the CS diagnosis. I have no clue what to do about this.
Go to Mayo Clinic pain rehab program. There is no fix for it, its about living with it. I am about to graduate next week. I tried "EVERYTHING" and if you know...u know everything means everything. This is the only program that has helped at all.
@@Rollwithit699 no problem! It seriously is a life changing program. It's done as a group and everyone has different issues that got us here, but every single one of the group was withdrawn from society, sleeping tons, had tons of guilt etc. Just know you arent alone. It's just about understanding what makes things worse. Do NOT do a bunch on a good day and crash for 3 days afterwards. Try and move slower, and pace things and youll end up being able to do so much more in a day consistently than looking for one good day.
@@Goblin1986p Sounds like me for sure. May I ask if this involves medications? That route has really messed me up and I'm avoiding prescription drugs whenever possible.
@@Rollwithit699 they try to get you off everything, I had a taper program for my marijuana to get off it completely, but with opiods etc, and alcohol they ask you refrain from them in the program. They actually found that it hardly ever helps with CSS, its only a way to numb your mind but it wont help long term. Most meds treat acute pain, not chronic. They also may even give you a pharmacogenetic test to see if you are resistant to medications in the first place which I was...which explained why so many meds just made me sick to my stomach instead of actually working. You work with a team of people, like 4 nurses, OT, PT, Psych, etc. It helps you get back to living again... I almost dont want it to end on Thursday this coming week lol.
@@cheryllewis5008 czcams.com/video/QpDBhAzVbJY/video.html Biology and therapy of fibromyalgia: pain in fibromyalgia syndrome www.ncbi.nlm.nih.gov/pmc/articles/PMC1526632/
Thanks I have this condition for 5 yrs. I want to go to Mayo but have no funds. This will help see what was offered. Thanks for putting this out there and maybe connect some people with this problem
Thx for the videos. I have pretty much the same story and just got diagnosed at Mayo as well. Hang in there :)
33 year old Male from Michigan
I'd like to get in touch with you so we can share our experiences, tips for success, etc! Hit me up!
Thanks, Lee! We try to be the light for people in that darkness. We grappled with a lot of unknowns for a long time and found ourselves in that darkness ourselves. We turned to CZcams and found that there is a large community of people who are willing to lift one another up and bring that light back.
The most that I can tell you to do is to try and find balance in your life. Find what your stressors are and find a way to mitigate them. Put routines and processes in place so that you don't have to worry about where your keys are or if the laundry is done. When you know that the laundry is started on Monday.
The sharp pains and burning sensation sound like they could be related to central pain syndrome. The foggy brain sounds like fibromyalgia. You look fine because fibromyalgia is invisible, it is upregulated nerves. I have similar symptoms, so I think that's it. I could have diagnosed you in 5 minutes. Neurologists don't want to deal with it, BTW. Even though it is a neurological disorder. They will refer you to a rheumatologist, who deal with autoimmune disorders. Most rheumatologists don't want to deal with it either. Look for TedTalks and other info on central sensitization, fibromyalgia, and central pain syndrome. Educate yourself. My least favorite words are "But you look fine." Good luck.
Ketamine infusions I been looking into it
the mayo clinic Pain Rehab program really helps. REALLY really helps.
Thank you so much for this video. I too have central sensitization just got it in October by a ganglion impar injection that went too deep. I have had chronic coccydynia for over 12 years and had a total of 9 steroidal injections its a slow miserable recovery
Hi sorry to hear and thank you share your story , i have just been diagnosed with this awful condition its on my feet legs hands arms face , iam 32 in uk no body know wat to do with me 😞 Have you found any treatments or medication that works hope your doing well
Hey!
Lots of stress mitigation techniques, routines and processes in place to remember where stuff is, patience, humor, a positive attitude.
Honestly, those have been the most helpful things.
ran across your video. How are you doing now? My face is on tingling fire since 5-31-19. I'm wondering about your journey and if I can learn from it. Diann in Idalou, TX
I've had it for 2 years. Wish I was dead
What do you experience? I can’t really find anybody with this.
For me it's like my skin is constantly burning and feels really tight and I get random sharp shocks of pain that are in my tailbone I also get shooting pains down my legs and feet and tingling sensations. It's impossible to sleep my bed feels like concrete its horrible because nobody understands you. It has been a living nightmare I too wish I was dead at times but have kids to support and need to stay positive your not alone! Stay strong 💪
What happened at Mayo?? What was the outcome?
Sounds like your neurologist definitely checked you thoroughly. I have been diagnosed with central sensitization but other doctors don't take it seriously at all, and pretty much ignore the CS diagnosis. I have no clue what to do about this.
Go to Mayo Clinic pain rehab program. There is no fix for it, its about living with it. I am about to graduate next week. I tried "EVERYTHING" and if you know...u know everything means everything. This is the only program that has helped at all.
@@Goblin1986p Thank you!
@@Rollwithit699 no problem! It seriously is a life changing program. It's done as a group and everyone has different issues that got us here, but every single one of the group was withdrawn from society, sleeping tons, had tons of guilt etc. Just know you arent alone. It's just about understanding what makes things worse. Do NOT do a bunch on a good day and crash for 3 days afterwards. Try and move slower, and pace things and youll end up being able to do so much more in a day consistently than looking for one good day.
@@Goblin1986p Sounds like me for sure. May I ask if this involves medications? That route has really messed me up and I'm avoiding prescription drugs whenever possible.
@@Rollwithit699 they try to get you off everything, I had a taper program for my marijuana to get off it completely, but with opiods etc, and alcohol they ask you refrain from them in the program. They actually found that it hardly ever helps with CSS, its only a way to numb your mind but it wont help long term. Most meds treat acute pain, not chronic. They also may even give you a pharmacogenetic test to see if you are resistant to medications in the first place which I was...which explained why so many meds just made me sick to my stomach instead of actually working. You work with a team of people, like 4 nurses, OT, PT, Psych, etc. It helps you get back to living again... I almost dont want it to end on Thursday this coming week lol.
Jay. P. Shah Medical Doctor of NIH in Bethesda Maryland. Check him out
Is he a fibromyalgia doctor? Been looking for a specialist in my area and also military.
@@cheryllewis5008 czcams.com/video/QpDBhAzVbJY/video.html
Biology and therapy of fibromyalgia: pain in fibromyalgia syndrome
www.ncbi.nlm.nih.gov/pmc/articles/PMC1526632/
Related hypomobility eds Asperger's adhd
Could you DM me pls.