Chronic Pain members - Welcome, please introduce yourself

Hi @femuchay, welcome to Mayo Clinic Connect. I recommend that you join the discussions in the neuropathy group
- Neuropathy https://connect.mayoclinic.org/group/neuropathy/

There are several discussions specific to small fiber neuropathy too.

Hi everyone, I was diagnosed with small fiber neuropathy. It all stated it vertigo that has since gone away and then one morning i developed cold feet as if I was standing on a block of ice. Then the electric like sensation, crawling, pins and needles from head to feet. had a ton of blood work done but everything checked out. I finally saw a Neurologist. He had skin biopsy done and diagnosed the small fiber neuropathy. I have tried a medications ,like gabapentine, cymbalta etc with no relief. I just had my 3rd treatment of intravenous lidocaine. 2 at 600mg and the 3rd at 800mg. i haven't gotten any relief. my symptom seem to get worse on the day of the treatments. Please does anyone has any lead or suggestions for me. I'll really appreciate anything right now. its been almost a year and I am tired.

From what I see you would get more relief from a shot of Jack Daniels than your “Pain Specialist’s” expertise. That’s a sad opinion any medical provider should want a license Pharmacist to have of them. All I see from your provider is fear and paranoia instead of intelligence and responsibility to do the one thing all medical providers INCLUDING PHARMACISTS vow to do and that is to serve the patient with all the knowledge and wisdom bestowed upon them and DO NO HARM.

Okay, now that I’ve vented for my friend, I’ll speak as a professional... lol

Right now, a great many providers in our Nation are losing sight of their oaths and their jobs as doctors, nurses, pharmacists, etc. Not because most of them don’t care or believe their patients deserve the Pain relief. They don’t even think their patients are addicts or close to becoming one. If you were to ask their honest opinion, most would firmly state that they think that the people under their care require the opioids at higher dosages to facilitate a better quality of life.

What almost all would say on the record? They are abiding by the CDC Opioid Guidelines. They are following the DEA regulations, Medicare constraints, Medicaid and insurance formularies to fall within their parameters of acceptable covered dosages.

Only legislators and folks who are ignorant, fearful, or biased against the use of any opioids for Chronic Pain much less acute pain or anything else at all would assume the result of its use will lead automatically to ADDICTION, SUBSTANCE ABUSE OR “USE” DISORDER, DEPENDENCE, OVERDOSE, SUICIDE, DEATH, or UNCONTROLLABLE EXPLOITATION.

The most important part of Chronic Pain MANAGEMENT WITH OPIOIDS is THE PATIENT-PROVIDER RELATIONSHIP.
Why? It’s simple really. I have a phrase that I live and worked by as a pharmacist especially with my CHRONIC PAIN PATIENTS ON OPIOIDS.

RULES WITHOUT RELATIONSHIPS LEAD TO REBELLION.

This lesson by Josh McDowell is the cornerstone to successful relationships and will keep both parties honest and trustworthy within them.

The DEA has made it is almost impossible for both sides of the Chronic Patient-Specialist Provider Relationship to trust one another by creating rules that are making them enemies or suspicious of the actions of the other.

How?

1. The CDC Opioid Guidelines are not applicable to Pain specialists or ANY specialist at all. They are written for PRIMARY CARE PROVIDERS ONLY, but the DEA is forcing all providers to adhere to them as if they are written for all medical healthcare in the USA - misapplying them.

2. The DEA is targeting the Chronic Pain population because this population is the only categorized, tracked, and verifiably and statistically monitored group of Prescription Opioid-users in America. By decreasing these numbers, the DEA and government can positively affect the War of Drugs and Opioids. Through this targeting, the Chronic Pain Patients are not getting the care they need or the relief they deserve and feel betrayed by the healthcare system of America which is supposed to “DO NO HARM.”

3. In the war in drugs, the government has the ability to control what can be dispensed by limiting the funding on Medicare, state Medicaid programs, and Insurances, the CDC, FDA, and any other programs needed to limit access to Opioids including the WHO.
For example, OxyContin is not paid by insurance, Medicaid, or Medicaid above 40mg Twice a day.
Percocet 10/325mg is only paid for up to four times a day as needed for breakthrough pain.
These dosages cannot be overridden even with prior authorization Petition. The v system put into place for the Elderly, abandoned, disabled, and informed is now betraying its own.

Ceiling limits such as these do not consider such issues as rare diseases with no treatments available, unique case circumstances or cure.

Indeed, many Pain patients have been removed, drastically lowered from their pain medications regardless of OPIOID TAPERING GUIDELINES, and are suffering unwarranted and against CDC, FDA, AMA, and medication recommendations and PROTOCOLS.

These thoughtless and dangerous practices among the CHRONIC PAIN COMMUNITY has led to an increase in unmanaged pain and suffering which has led to a spike in suicide. Whether by overdose or not, this spike by many in this community is seen as a preventable not reflection of the life. And they are angry and becoming bitter. They no longer TRUST the providers who give them “care.”

To help prevent these feelings from developing between you and your provider, these are some Actions you can take as a Chronic Pain Patient before your next appointment to your pain specialist:
1. Keep a daily log of Your Daily Pain Cycles, I.E. Pain levels upon rising, changes throughout the day, medications taken and why, spikes and troughs, flares and why if ac reason, etc weather, pressure, events of the day.
2. Collect these materials and have them at your fingertips if needed, The CDC Chronic Opioid Prescribing Guidelines, The AMA’s Letter to the CDC and FDA Regarding the Chronic Opioid Prescribing Guidelines, The Bill of Rights, The United States Constitution, The Geneva Convention, HIPPA, The Privacy Act of 1972, The RARE Disease Act of 2002, The American Disabilities Act, Older American Act and Elder Justice Act.
There are many more. You can look them up for your special circumstances. Do it. Advocate for yourself! No one will.
3. Speak to your provider in his or her language not yours. Your doctor stand medicaleze. You know peopleze. Talk to them on terms they understand.
They want to know your pain level, give it to them honestly, directly, not what you think or want it to be—not average! If it sucks, tell them an 8! If you’ve been close or at the ER, a 9 or 10. Stop sugar-coating. (The down fall with CRPS is that our pain is beyond the 10 scale so we have to try to adapt it to their 10 scale so they understand. A long talk with the provider is NECESSARY so you are on the same page about what your 8 and 9 is VS theirs.)
They want to know what you pain has been like over the last month—TELL THEM in terms they know. “I wake up on average at an 8 or 9, in tears but after I take meds, and about an hour, the level comes down to around a 6 or 7 so I can dress. Food is out but the Zolfran works until I take the next round and I’m at a solid 7 if I’m lucky and I can eat.”
See what I did there? I’m not complaining. “It’s awful, I cry all the time and the pain is terrible. You have to help me!” They can’t work with that. They need numbers. Data to manipulate and goals to target.
4. Set TWO goals for Pain management. A long term goal: a percentage of pain relief you believe to can realistically live with and obtain quality liberty and livelihood with your pain. This goal will not be reached tomorrow or easily but it Is important to set it. THINK ABOUT THIS HARD AND LONG. This is a changeable goal but should be a goal you place on a calendar and aim for so don’t change it too much unless you discuss why, when, and think about it long and hard.
Your short-term goals are simply to help you get through the hurdles and mountains of the journey. Use the goals frequently and for setbacks due to illness, injury, or family stressors. They are vital to your pain management!

I hope this helps.

Remember that providers are scared of the Opioid ENFORCEMENT AND ENVIRONMENT NOT YOU!

Start talking to each other about your fears or you will hate each other. They are not trying to hurt or abandon you.
They are trying to survive, just like you are.

@faithwalker007 It would really help and give your opinions more validity if you would add links to the things you write.. Credibility is what we seek in our reading .. So where did you get that information? The opinion of one has little weight in a discussion but when that text is backed up with information from a CREDIBLE Source it has Power.. On Mayo Clinic Connect when we tell of our own experiences that's fine .. and certainly everyone who has not sworn an oath can write what they feel but just as in research the Review of Literature is an important part of the Contribution.. K

Hello ken82! I appreciate what you are saying. I’m very careful posting links on any professional chat site especially the Mayo. I do not want to affect their database. First, let me tell you a little about myself.
I am a registered pharmacist of 24 years, disabled and inactive but licensed with the state of Wyoming and formerly licensed with the state of Texas. I have worked 15 years with the Department of Health and Human Services, 8 years with the Public Health Services at the Indian Health Service in the Wind River Service Unit at Fort Washakie and Arapahoe in Wyoming, and 3 years with the Veterans Health Administration at Fort MacKenzie or the Sheridan VA Medical Center at Sheridan, Wyoming and 2 years at the Doris Miller VA Medical Center in Waco, Texas. In addition, I’ve worked nursing home, special needs, mental health, clinical health, oncology, and retail pharmacy including managerial.
I have also served on Pharmaceutical Therapeutics, Quality Control, Infectious Control, Tribal Emergency Management, and IT Committees. In addition, I have served as Pharmacy IT Liaison and Pharmacy ADPAC for the implementation period of the Electronic Health Record into the Indian Health Service as well as supervised the Pharmacy DEA audit of the Wind River Service Unit. I also was the Service Unit liaison for the State of Wyoming Immunization Department for ordering, storing, and tracking of all Immunizations.
During this entire period, my husband became disabled with Chronic Traumatic Arthritis and Chronic Pain due to 39 surgeries and an unconfirmed diagnosis (which my son most likely has as well) of classic Ehlers Danlos Syndrome. I also became disabled with complications of a TKR and onset of Complex Regional Pain Syndrome, type 2. Our pain is managed partially to within livable levels with my husband’s at about 75% and mine at 40%.
I continue to speak professionally from the oath I took as a pharmacist because I AM a licensed pharmacist with the state of Wyoming. I pay my fee every year to keep it. If by the hand of God, I ever get treated to the point I can stand, sit, or walk and think clearly enough while doing so to work again, I intend to do so. The State Board knows who I am, why I am not working, and encourages me to hope in that day.
Today, I am an advocate for the Chronic Pain Community of Wyoming and the Nation. I am an advocate of the Rare Disease Community of Wyoming and the Nation. I am a member of the national organizations, RDLA, and NORD. I am also part of Wyoming Independent Living’s Advocacy Network, Don’t Punish Pain Rally Network, and RSDSA for CRPS. I’m also active in the promotion of Service Dogs and the appropriate treatment and usage of Service Dogs, Therapy Dogs, and Emotional Support Dogs.
I advocate through Social Media, my writing, my art, my website, my blog, and testifying before the state and federal legislature. I also speak to providers and nurses and patients all over the nation and globe about how they are treated for pain. What they are feeling about their care, what their providers have said, or not said about it . I also know how to decipher statistics, drug studies, and distinguish the appropriate and applicable language within them. I have been doing it for 30 years.
As for sources, I do not “litter” my posts with sources because I’ve been cautioned many times in sites such as the Mayo NOT to do precisely that. Most if not all of my sources come from CDC.gov, FDA.gov, DEA.gov, the Pain Network, RSDS.org, NORD.org, WebMD, or drug references I have forwarded to me.
As a pharmacist, I speak straightforward— am blunt— and do not lie. Why? When pharmacists do such, people die.

Hello ken82! I appreciate what you are saying. I’m very careful posting links on any professional chat site especially the Mayo. I do not want to affect their database. First, let me tell you a little about myself.
I am a registered pharmacist of 24 years, disabled and inactive but licensed with the state of Wyoming and formerly licensed with the state of Texas. I have worked 15 years with the Department of Health and Human Services, 8 years with the Public Health Services at the Indian Health Service in the Wind River Service Unit at Fort Washakie and Arapahoe in Wyoming, and 3 years with the Veterans Health Administration at Fort MacKenzie or the Sheridan VA Medical Center at Sheridan, Wyoming and 2 years at the Doris Miller VA Medical Center in Waco, Texas. In addition, I’ve worked nursing home, special needs, mental health, clinical health, oncology, and retail pharmacy including managerial.
I have also served on Pharmaceutical Therapeutics, Quality Control, Infectious Control, Tribal Emergency Management, and IT Committees. In addition, I have served as Pharmacy IT Liaison and Pharmacy ADPAC for the implementation period of the Electronic Health Record into the Indian Health Service as well as supervised the Pharmacy DEA audit of the Wind River Service Unit. I also was the Service Unit liaison for the State of Wyoming Immunization Department for ordering, storing, and tracking of all Immunizations.
During this entire period, my husband became disabled with Chronic Traumatic Arthritis and Chronic Pain due to 39 surgeries and an unconfirmed diagnosis (which my son most likely has as well) of classic Ehlers Danlos Syndrome. I also became disabled with complications of a TKR and onset of Complex Regional Pain Syndrome, type 2. Our pain is managed partially to within livable levels with my husband’s at about 75% and mine at 40%.
I continue to speak professionally from the oath I took as a pharmacist because I AM a licensed pharmacist with the state of Wyoming. I pay my fee every year to keep it. If by the hand of God, I ever get treated to the point I can stand, sit, or walk and think clearly enough while doing so to work again, I intend to do so. The State Board knows who I am, why I am not working, and encourages me to hope in that day.
Today, I am an advocate for the Chronic Pain Community of Wyoming and the Nation. I am an advocate of the Rare Disease Community of Wyoming and the Nation. I am a member of the national organizations, RDLA, and NORD. I am also part of Wyoming Independent Living’s Advocacy Network, Don’t Punish Pain Rally Network, and RSDSA for CRPS. I’m also active in the promotion of Service Dogs and the appropriate treatment and usage of Service Dogs, Therapy Dogs, and Emotional Support Dogs.
I advocate through Social Media, my writing, my art, my website, my blog, and testifying before the state and federal legislature. I also speak to providers and nurses and patients all over the nation and globe about how they are treated for pain. What they are feeling about their care, what their providers have said, or not said about it . I also know how to decipher statistics, drug studies, and distinguish the appropriate and applicable language within them. I have been doing it for 30 years.
As for sources, I do not “litter” my posts with sources because I’ve been cautioned many times in sites such as the Mayo NOT to do precisely that. Most if not all of my sources come from CDC.gov, FDA.gov, DEA.gov, the Pain Network, RSDS.org, NORD.org, WebMD, or drug references I have forwarded to me.
As a pharmacist, I speak straightforward— am blunt— and do not lie. Why? When pharmacists do such, people die.

From what I see you would get more relief from a shot of Jack Daniels than your “Pain Specialist’s” expertise. That’s a sad opinion any medical provider should want a license Pharmacist to have of them. All I see from your provider is fear and paranoia instead of intelligence and responsibility to do the one thing all medical providers INCLUDING PHARMACISTS vow to do and that is to serve the patient with all the knowledge and wisdom bestowed upon them and DO NO HARM.

Okay, now that I’ve vented for my friend, I’ll speak as a professional... lol

Right now, a great many providers in our Nation are losing sight of their oaths and their jobs as doctors, nurses, pharmacists, etc. Not because most of them don’t care or believe their patients deserve the Pain relief. They don’t even think their patients are addicts or close to becoming one. If you were to ask their honest opinion, most would firmly state that they think that the people under their care require the opioids at higher dosages to facilitate a better quality of life.

What almost all would say on the record? They are abiding by the CDC Opioid Guidelines. They are following the DEA regulations, Medicare constraints, Medicaid and insurance formularies to fall within their parameters of acceptable covered dosages.

Only legislators and folks who are ignorant, fearful, or biased against the use of any opioids for Chronic Pain much less acute pain or anything else at all would assume the result of its use will lead automatically to ADDICTION, SUBSTANCE ABUSE OR “USE” DISORDER, DEPENDENCE, OVERDOSE, SUICIDE, DEATH, or UNCONTROLLABLE EXPLOITATION.

The most important part of Chronic Pain MANAGEMENT WITH OPIOIDS is THE PATIENT-PROVIDER RELATIONSHIP.
Why? It’s simple really. I have a phrase that I live and worked by as a pharmacist especially with my CHRONIC PAIN PATIENTS ON OPIOIDS.

RULES WITHOUT RELATIONSHIPS LEAD TO REBELLION.

This lesson by Josh McDowell is the cornerstone to successful relationships and will keep both parties honest and trustworthy within them.

The DEA has made it is almost impossible for both sides of the Chronic Patient-Specialist Provider Relationship to trust one another by creating rules that are making them enemies or suspicious of the actions of the other.

How?

1. The CDC Opioid Guidelines are not applicable to Pain specialists or ANY specialist at all. They are written for PRIMARY CARE PROVIDERS ONLY, but the DEA is forcing all providers to adhere to them as if they are written for all medical healthcare in the USA - misapplying them.

2. The DEA is targeting the Chronic Pain population because this population is the only categorized, tracked, and verifiably and statistically monitored group of Prescription Opioid-users in America. By decreasing these numbers, the DEA and government can positively affect the War of Drugs and Opioids. Through this targeting, the Chronic Pain Patients are not getting the care they need or the relief they deserve and feel betrayed by the healthcare system of America which is supposed to “DO NO HARM.”

3. In the war in drugs, the government has the ability to control what can be dispensed by limiting the funding on Medicare, state Medicaid programs, and Insurances, the CDC, FDA, and any other programs needed to limit access to Opioids including the WHO.
For example, OxyContin is not paid by insurance, Medicaid, or Medicaid above 40mg Twice a day.
Percocet 10/325mg is only paid for up to four times a day as needed for breakthrough pain.
These dosages cannot be overridden even with prior authorization Petition. The v system put into place for the Elderly, abandoned, disabled, and informed is now betraying its own.

Ceiling limits such as these do not consider such issues as rare diseases with no treatments available, unique case circumstances or cure.

Indeed, many Pain patients have been removed, drastically lowered from their pain medications regardless of OPIOID TAPERING GUIDELINES, and are suffering unwarranted and against CDC, FDA, AMA, and medication recommendations and PROTOCOLS.

These thoughtless and dangerous practices among the CHRONIC PAIN COMMUNITY has led to an increase in unmanaged pain and suffering which has led to a spike in suicide. Whether by overdose or not, this spike by many in this community is seen as a preventable not reflection of the life. And they are angry and becoming bitter. They no longer TRUST the providers who give them “care.”

To help prevent these feelings from developing between you and your provider, these are some Actions you can take as a Chronic Pain Patient before your next appointment to your pain specialist:
1. Keep a daily log of Your Daily Pain Cycles, I.E. Pain levels upon rising, changes throughout the day, medications taken and why, spikes and troughs, flares and why if ac reason, etc weather, pressure, events of the day.
2. Collect these materials and have them at your fingertips if needed, The CDC Chronic Opioid Prescribing Guidelines, The AMA’s Letter to the CDC and FDA Regarding the Chronic Opioid Prescribing Guidelines, The Bill of Rights, The United States Constitution, The Geneva Convention, HIPPA, The Privacy Act of 1972, The RARE Disease Act of 2002, The American Disabilities Act, Older American Act and Elder Justice Act.
There are many more. You can look them up for your special circumstances. Do it. Advocate for yourself! No one will.
3. Speak to your provider in his or her language not yours. Your doctor stand medicaleze. You know peopleze. Talk to them on terms they understand.
They want to know your pain level, give it to them honestly, directly, not what you think or want it to be—not average! If it sucks, tell them an 8! If you’ve been close or at the ER, a 9 or 10. Stop sugar-coating. (The down fall with CRPS is that our pain is beyond the 10 scale so we have to try to adapt it to their 10 scale so they understand. A long talk with the provider is NECESSARY so you are on the same page about what your 8 and 9 is VS theirs.)
They want to know what you pain has been like over the last month—TELL THEM in terms they know. “I wake up on average at an 8 or 9, in tears but after I take meds, and about an hour, the level comes down to around a 6 or 7 so I can dress. Food is out but the Zolfran works until I take the next round and I’m at a solid 7 if I’m lucky and I can eat.”
See what I did there? I’m not complaining. “It’s awful, I cry all the time and the pain is terrible. You have to help me!” They can’t work with that. They need numbers. Data to manipulate and goals to target.
4. Set TWO goals for Pain management. A long term goal: a percentage of pain relief you believe to can realistically live with and obtain quality liberty and livelihood with your pain. This goal will not be reached tomorrow or easily but it Is important to set it. THINK ABOUT THIS HARD AND LONG. This is a changeable goal but should be a goal you place on a calendar and aim for so don’t change it too much unless you discuss why, when, and think about it long and hard.
Your short-term goals are simply to help you get through the hurdles and mountains of the journey. Use the goals frequently and for setbacks due to illness, injury, or family stressors. They are vital to your pain management!

I hope this helps.

Remember that providers are scared of the Opioid ENFORCEMENT AND ENVIRONMENT NOT YOU!

Start talking to each other about your fears or you will hate each other. They are not trying to hurt or abandon you.
They are trying to survive, just like you are.