Hello everyone. I have been suffering with Fibro for 21 years. I started taking Lyrica in 2011 and am now on 75 mgs 3x|day but it isn’t working well, prob bc I’ve developed a tolerance to it. I am allergic to Opioids so can’t take Tramadol. I progressed to Central Sensitization Syndrome 18 mos ago and now pain is so much worse that it is wearing down my Adrenals. Ive had POTS for a year and have to take Florinef and Pregnenolone to hold my BP up. For some reason any Cannabis blend that has THC in it makes my nerve pain worse, even if I take a tiny dose. But CBD helps; it does make me sleepy in the daytime so I just take it at bedtime. I have neck disk degeneration pain and post surgical pain from have some bone spurs scraped away in my neck bones, which is another source of pain. So I have reached a point that my pain level is more than I can bear, esp on weather change days. So I have been working hard to get into a Ketamine IV pain clinic and I will start the series of iv’s in 2.5 weeks. I had to have much blood Wk and get clearance letters from all my drs stating my liver is normal, my EKG is normal and my mental health is good. I will write bk to you all when I am able and tell you if the Ketamine (greatly diluted ofcourse) helps.
Please comment if there is anything you feel is important for me to know.
@healingone speaking of CSS, I got a message from my spine specialist at Mayo yesterday stating I had this diagnosis (although I’ve never seen it listed anywhere). I was asking about a referral to rheumatology for an arthritis evaluation and his response was my CSS was probably my main issue. My response to this was to ask for clarification. His nurse responded from a 2018 assessment regarding my fibromyalgia diagnosis. My conclusion to this story was to share that I have been dealing with fibro pain for many years, but that was not my concern. Then, I cited an example of how when I may have issues with my migraines, my neurologist processes this with me. CSS/fibro is a multifaceted pain and fatigue syndrome for me, but I guess, I will be processing concerns with my PCP. Frustrating sometimes….hang in there! A regular routine, daily mild/moderate exercise, healthy diet, some socializing, and good sleep have been most helpful to me.
Hey there @migizii. I love this story and am glad you shared it for other members to learn from. You seem to have a good handle of knowing how to live with CSS and its requirements in order more successfully manage symptoms. Good for you! It is frustrating, but there is hope.
Not too many doctors have knowledge or understanding of CSS, let alone know how to address it for a treatment plan. Thankfully your doctor did. Self-awareness is self-advocacy is real important for some whose doctors continue them on a wild goose chase. Even though CSS may not be the answer we had hoped to hear, at least it is a culmination that brings together multiple chronic issues and gives us understanding to move forward.
I'm doing much better since learning about CSS and how to work with it through lifestyle change. So many areas have calmed down and become more manageable since my prior chaos. The chaos period is called our "B life" in pain rehab...I'm now living my "C life" which is defined by being stable, moderate and flexible. It takes a lot of work and discipline, but has been worth it. How have you been doing since you posted? You were last going to process concerns with your PCP. How'd that go?
@rachael1357 Hi Rachael, welcome. I have CSS and am here to help. I see you have had hip replacement surgery recently. Do you mind sharing a bit more about yourself and your circumstances leading up to your CSS diagnosis?
A major staple to learning about CSS is this video by Dr. Sletten of the Mayo Clinic. He runs a pain rehab program at the Pain Rehabilitation Center in Jacksonville, FL, which is where I attended. There are also programs in Arizona and Minnesota. Take a look -
Also, you may also be interested in the following conversations:
I have dealt with generalized pain my whole life… had my first round of knee surgeries when I was 15. I have had 6 knee surgeries, bilateral hip cam resection and labral repair. Then had total hip replacement 2 1/2 weeks ago for rheumatoid arthritis….I am 46. I have stomach issues, menstral issues, restless leg syndrome and TMJ. My doctor says we will wean me off the dialudid and increase my Gabapentin. He also talked about acupuncture and hypnosis….
I have dealt with generalized pain my whole life… had my first round of knee surgeries when I was 15. I have had 6 knee surgeries, bilateral hip cam resection and labral repair. Then had total hip replacement 2 1/2 weeks ago for rheumatoid arthritis….I am 46. I have stomach issues, menstral issues, restless leg syndrome and TMJ. My doctor says we will wean me off the dialudid and increase my Gabapentin. He also talked about acupuncture and hypnosis….
@rachael1357 My goodness girl, you have had quite the run. It's no wonder your central nervous system and peripheral sensory input system is in an uproar, hence CSS.
I encourage you to research CSS and learn as much as you can about it and how it effects you both physically and mentally. Being your own advocate will serve you well and help put you in better charge of your symptoms. Having hypersensitivity requires learning how to calm your CNS down by adjusting your lifestyle to reduce stressors, eating a healthy diet, exercise, eliminating or omitting chemicals (unnecessary meds that enhance pain), and working on emotional and behavioral strategies. CSS rehabilitation steers away from treatments like acupuncture because it stirs up already sensitized sensors.
I think your most important step right now is to focus on hip recovery. Do you have positive distraction? Practicing meditation and understanding the importance of mindfulness and diaphragmatic breathing is a huge step towards reducing stress and helping combat symptoms. Do you use mindful meditation or breathing techniques currently?
I have dealt with generalized pain my whole life… had my first round of knee surgeries when I was 15. I have had 6 knee surgeries, bilateral hip cam resection and labral repair. Then had total hip replacement 2 1/2 weeks ago for rheumatoid arthritis….I am 46. I have stomach issues, menstral issues, restless leg syndrome and TMJ. My doctor says we will wean me off the dialudid and increase my Gabapentin. He also talked about acupuncture and hypnosis….
I am sorry for your pain and surgeries. Just thought I would mention RLS, I used to get almost every night. Now I take pregabalin and since then I have not had a single episode in 3 yrs.
Hey there @migizii. I love this story and am glad you shared it for other members to learn from. You seem to have a good handle of knowing how to live with CSS and its requirements in order more successfully manage symptoms. Good for you! It is frustrating, but there is hope.
Not too many doctors have knowledge or understanding of CSS, let alone know how to address it for a treatment plan. Thankfully your doctor did. Self-awareness is self-advocacy is real important for some whose doctors continue them on a wild goose chase. Even though CSS may not be the answer we had hoped to hear, at least it is a culmination that brings together multiple chronic issues and gives us understanding to move forward.
I'm doing much better since learning about CSS and how to work with it through lifestyle change. So many areas have calmed down and become more manageable since my prior chaos. The chaos period is called our "B life" in pain rehab...I'm now living my "C life" which is defined by being stable, moderate and flexible. It takes a lot of work and discipline, but has been worth it. How have you been doing since you posted? You were last going to process concerns with your PCP. How'd that go?
In reply to @rwinney….I have not followed up yet as I have some current interventions in place that are maintaining things, for the moment. After some specialist appointments I have coming up, I will meet with my PCP to review and then pursue some type of follow up for the arthritis. I would like to get a thorough evaluation and a good treatment plan vs the piecemeal plan that currently exists. I consider myself a pro-active patient, but I get tired of going to doctors so I take things in shifts. Thanks for asking about me and take care😊
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Hello everyone. I have been suffering with Fibro for 21 years. I started taking Lyrica in 2011 and am now on 75 mgs 3x|day but it isn’t working well, prob bc I’ve developed a tolerance to it. I am allergic to Opioids so can’t take Tramadol. I progressed to Central Sensitization Syndrome 18 mos ago and now pain is so much worse that it is wearing down my Adrenals. Ive had POTS for a year and have to take Florinef and Pregnenolone to hold my BP up. For some reason any Cannabis blend that has THC in it makes my nerve pain worse, even if I take a tiny dose. But CBD helps; it does make me sleepy in the daytime so I just take it at bedtime. I have neck disk degeneration pain and post surgical pain from have some bone spurs scraped away in my neck bones, which is another source of pain. So I have reached a point that my pain level is more than I can bear, esp on weather change days. So I have been working hard to get into a Ketamine IV pain clinic and I will start the series of iv’s in 2.5 weeks. I had to have much blood Wk and get clearance letters from all my drs stating my liver is normal, my EKG is normal and my mental health is good. I will write bk to you all when I am able and tell you if the Ketamine (greatly diluted ofcourse) helps.
Please comment if there is anything you feel is important for me to know.
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2 ReactionsDiagnosed just yesterday…looking for more information
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2 ReactionsHey there @migizii. I love this story and am glad you shared it for other members to learn from. You seem to have a good handle of knowing how to live with CSS and its requirements in order more successfully manage symptoms. Good for you! It is frustrating, but there is hope.
Not too many doctors have knowledge or understanding of CSS, let alone know how to address it for a treatment plan. Thankfully your doctor did. Self-awareness is self-advocacy is real important for some whose doctors continue them on a wild goose chase. Even though CSS may not be the answer we had hoped to hear, at least it is a culmination that brings together multiple chronic issues and gives us understanding to move forward.
I'm doing much better since learning about CSS and how to work with it through lifestyle change. So many areas have calmed down and become more manageable since my prior chaos. The chaos period is called our "B life" in pain rehab...I'm now living my "C life" which is defined by being stable, moderate and flexible. It takes a lot of work and discipline, but has been worth it. How have you been doing since you posted? You were last going to process concerns with your PCP. How'd that go?
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Helpful -
Hug
3 Reactions@rachael1357 Hi Rachael, welcome. I have CSS and am here to help. I see you have had hip replacement surgery recently. Do you mind sharing a bit more about yourself and your circumstances leading up to your CSS diagnosis?
A major staple to learning about CSS is this video by Dr. Sletten of the Mayo Clinic. He runs a pain rehab program at the Pain Rehabilitation Center in Jacksonville, FL, which is where I attended. There are also programs in Arizona and Minnesota. Take a look -
Also, you may also be interested in the following conversations:
CSS and my Pain Rehab experience:
- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
CSS - Please share your stories:
- https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/
One thing I can reassure you of is that there is hope and a positive path forward with CSS. Keep your chin up!
What can I answer for you? Do you mind getting back to me with your thoughts on the video? Did it give you clarity on this condition?
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2 ReactionsI have dealt with generalized pain my whole life… had my first round of knee surgeries when I was 15. I have had 6 knee surgeries, bilateral hip cam resection and labral repair. Then had total hip replacement 2 1/2 weeks ago for rheumatoid arthritis….I am 46. I have stomach issues, menstral issues, restless leg syndrome and TMJ. My doctor says we will wean me off the dialudid and increase my Gabapentin. He also talked about acupuncture and hypnosis….
@rachael1357 My goodness girl, you have had quite the run. It's no wonder your central nervous system and peripheral sensory input system is in an uproar, hence CSS.
I encourage you to research CSS and learn as much as you can about it and how it effects you both physically and mentally. Being your own advocate will serve you well and help put you in better charge of your symptoms. Having hypersensitivity requires learning how to calm your CNS down by adjusting your lifestyle to reduce stressors, eating a healthy diet, exercise, eliminating or omitting chemicals (unnecessary meds that enhance pain), and working on emotional and behavioral strategies. CSS rehabilitation steers away from treatments like acupuncture because it stirs up already sensitized sensors.
I think your most important step right now is to focus on hip recovery. Do you have positive distraction? Practicing meditation and understanding the importance of mindfulness and diaphragmatic breathing is a huge step towards reducing stress and helping combat symptoms. Do you use mindful meditation or breathing techniques currently?
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2 ReactionsI do not practice them currently but I am going to look into meditation and the breathing.
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2 Reactions@rachael1357 Here's something to get you started:
https://connect.mayoclinic.org/comment/651822/
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2 ReactionsI am sorry for your pain and surgeries. Just thought I would mention RLS, I used to get almost every night. Now I take pregabalin and since then I have not had a single episode in 3 yrs.
In reply to @rwinney….I have not followed up yet as I have some current interventions in place that are maintaining things, for the moment. After some specialist appointments I have coming up, I will meet with my PCP to review and then pursue some type of follow up for the arthritis. I would like to get a thorough evaluation and a good treatment plan vs the piecemeal plan that currently exists. I consider myself a pro-active patient, but I get tired of going to doctors so I take things in shifts. Thanks for asking about me and take care😊
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3 Reactions