1. < Chronic Pain

Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Mentor
Jim, Volunteer Mentor | @jimhd | Jan 20, 2018
In reply to @baxtersmom "Thank you for your comments on those of us who find narcotics helpful. I have been..." + (show)
@baxtersmom

Thank you for your comments on those of us who find narcotics helpful. I have been taking them for many years responsibly with the care a very forward-thinking well-trained pain management doctor. He is trying his best to deal with all the regulations and does a lot to help minimize the hassle for his patients who have shown him they are responsible and trustworthy with these medications. I never feel like I am being treated like a drug-addict. Without these medications my career (I am a professor at a major University) would have ended years ago because I would not have been able to keep teaching and being on my feet for all these years. I encourage people to find a good pain management doctor who shows them the respect and trust and care that they deserve. My pain management doctor also does many different things and recognizes that pain management medicine is not a one size fits all practice. He uses injections, nutrition, spinal cord stimulation, supplements, and many new and cutting edge techniques. He also refers to other doctors and practitioners who he thinks may be helpful. He is very available to me and his office is extremely responsive. His care kept me out of a surgery that I think I would have regretted many many years ago. This is what we all deserve and while I have terrible pain almost every day which increases as I get older, I know that I can continue the search that we all are on for what works for us with the help of a caring and knowledgeable doctor. It took me a long time to find him. When I began my search, he was probably still in medical school. I guess my message is don't give up on finding good pain management people. And speak up in defense of those of us who use narcotic medications responsibly. We need to advocate for ourselves.

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@gailg

I've been in the opioid tussle for around ten years. My pcp is with a clinic that's tied to my local hospital, which was taken over by a larger hospital. In many ways, the merger was beneficial, but it meant more guidelines for the doctors to follow. One change they made a year or two ago was to limit opioids to a total of 100mg. At the time, I was taking 90mg of morphine sulfate contin, 1mg of Klonopin and ocycodone for breakthrough pain, which I use only rarely. So, my pain specialist had to endorse my need for the meds, but at first the agreement was that he wouldn't prescribe for me.

My wife makes remarks about the # of meds I'm on, but she doesn't understand how much pain I have, or the importance of my antidepressants, or the need for meds that slow the progress of things. It's bad enough to need the meds, and I resent snide or deprecatory remarks, regardless if they come from a family member or from a doctor who should know better or from bureaucrats who are clueless and treat the pain medication issue as a political issue.

Right now, I'm going back to the beginning of the list of neuropathy meds that didn't work a few years ago, to see if they will help as an adjunct to the spinal cord stimulator. I'm doing that, for one thing, to see if I can get off the morphine. I want to be the one to decide to stop morphine, not a regulator.

Jim

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Mentor
Jim, Volunteer Mentor | @jimhd | Jan 20, 2018
In reply to @lyssia "It's nice to know that other pain sufferers feel as I do. I do not want..." + (show)
@lyssia

It's nice to know that other pain sufferers feel as I do. I do not want the insurance companies or government telling my doctor or me (a responsible drug user) what I can or can not use to help my situation. I have a really good pain management doctor for several years now and between the pain medication (use only occasionally right now) injections (upper back trigger point and cervical facet joint steroid) acupuncture, tens, exercise, supplements, meditation practice for me he also has other things as appropriate for the person. I find that this subject of not wanting the doctors to prescribe pain medications to anyone, the insurance companies wanting other medications to be used (that may or may not work or have more side effects) and the government looking at punishing the doctors for prescribing or limiting what amounts can be given to be on my mind a lot. I am at a place at this time where the combination of everything that I use is working pretty good for me and I don't want to go back to where I was in the beginning because of the drug abusers. I don't think that the responsible doctors should not be bunched in with those that are handing out pain meds indiscriminately for a profit. Thanks for letting me vent. : )

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@lyssia

I'm with you totally.

Jim

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Jan 20, 2018
In reply to @lioness "Hello Lynne I posts as Lioness.If you have fibro you need to be strong like a..." + (show)
@lioness

Hello Lynne I posts as Lioness.If you have fibro you need to be strong like a lion.I've had this for 30 yrs. What do you do for the pain?

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@peach414144

Never say never! I never thought I'd take opioids, but I know that I'd be in a lot more pain than I am if it weren't for morphine, and Klonopin surely has helped me with anxiety and a mild form of restless leg syndrome. My feet hurt from neuropathy, even with a spinal cord stimulator implant and medications.

Exercise is great but most of it involves walking or putting pressure on my feet. Many of us here are really tired of pain and dealing with it.

Jim

REPLY
jeannegordon4 | @jeannegordon4 | Jan 20, 2018
In reply to @baxtersmom "Thank you for your comments on those of us who find narcotics helpful. I have been..." + (show)
@baxtersmom

Thank you for your comments on those of us who find narcotics helpful. I have been taking them for many years responsibly with the care a very forward-thinking well-trained pain management doctor. He is trying his best to deal with all the regulations and does a lot to help minimize the hassle for his patients who have shown him they are responsible and trustworthy with these medications. I never feel like I am being treated like a drug-addict. Without these medications my career (I am a professor at a major University) would have ended years ago because I would not have been able to keep teaching and being on my feet for all these years. I encourage people to find a good pain management doctor who shows them the respect and trust and care that they deserve. My pain management doctor also does many different things and recognizes that pain management medicine is not a one size fits all practice. He uses injections, nutrition, spinal cord stimulation, supplements, and many new and cutting edge techniques. He also refers to other doctors and practitioners who he thinks may be helpful. He is very available to me and his office is extremely responsive. His care kept me out of a surgery that I think I would have regretted many many years ago. This is what we all deserve and while I have terrible pain almost every day which increases as I get older, I know that I can continue the search that we all are on for what works for us with the help of a caring and knowledgeable doctor. It took me a long time to find him. When I began my search, he was probably still in medical school. I guess my message is don't give up on finding good pain management people. And speak up in defense of those of us who use narcotic medications responsibly. We need to advocate for ourselves.

Jump to this post

Dear Jim, your post says it in a nutshell---you could have read my mind about the medical community and political climate on OPIOIDS situation. I'm sitting here sore as hell since arising 6 hours ago, going through daytime preparations till I can take my first Hydrocodone tablet, which I must use sparingly due to restrictions on monthly allowances by the FDA. I'm always near tears thinking how to better my pain problems. I joined Mayo "Chat" a few months ago and ever so pleased that I did so. It is comforting to know that I'm not alone with my physical problem. Thanks, Jim.

Jeanne

REPLY
LynneB | @lynneb2110 | Jan 20, 2018
In reply to @lioness "Hello Lynne I posts as Lioness.If you have fibro you need to be strong like a..." + (show)
@lioness

Hello Lynne I posts as Lioness.If you have fibro you need to be strong like a lion.I've had this for 30 yrs. What do you do for the pain?

Jump to this post

Hi Lyssia,
Yes, I tell my doctors (I’ve got a few, lol) about my mmj use, because, well, it is legal in my state (Massachusetts) and I have a card, but mostly, it’s not a good idea to withhold this info on meds from your healthcare folks. I’m 58 now, and perhaps less concerned about who might judge me. No, no drug testing, but I’m not on prescribed opiates (except postsurgical for both shoulders in the last year). Perhaps I don’t seem high risk for abuse if multiple substances, who knows. And, as most “mainstream” (what a toxic word, anymore) medical folks are prohibited within their practices and insurance coverage from prescribing medical cannabis, many of them ask me many questions about it! What the process is like getting a certification, what it’s like to visit a dispensary, and related questions.

Yes—CBD is one of the chemical components of the cannabis plant, as is THC, but it doesn’t make you high like THC would. It is effective for a lot of people for pain, and has been for me, but may be causing me some other issues. I’ve lately gotten terrific relief from higher THC Indica strains for pain and sleep in the evenings. I still have a lot of residual pain from my November shoulder repair, and I recently had to give up the Advil component of my Advil/Tylenol/Tramadol cocktail, and I have a lot more pain. The various forms of medical cannabis I use are a Godsend. I mean, straight-up pain relief, but merely relaxed, not zonked. Since I got fibromyalgia, I could no longer drink alcohol, which is fine by me, but I notice what a lower impact medical cannabis has on my head and body than either alcohol or opiates.
Also, I do not smoke it, as I have asthma (ughh menopause-onset asthma!) but if I am using the plant material, I vaporize it, which is pretty gentle. Tastes herbal, not vile. Edibles are good, but a pretty expensive way to medicate. Anyone in a medical marijuana state with interest in the subject might consider going in to talk to a mmj specialist doctor, to understand what your options are, and what various kinds might be able to do for you.

Remember, it is a medicine, especially for those of us battling chronic pain, and should be considered and treated as such, with the caution and reverence it deserves.

REPLY
LynneB | @lynneb2110 | Jan 20, 2018
In reply to @jlfisher56 "It is very hard dealing with the various types of pain. I have tried and use..." + (show)
@jlfisher56

It is very hard dealing with the various types of pain. I have tried and use many modalities all the time. I have developed skin sensitivities from so many surgeries and use of medications/pain patches/TENS using various forms of tape. I rotate my pain sites and do use them but must be careful The sad state of affairs is the usage of narcotics and benzodiazepines. Just because there is misuse by illegal people, over prescribing, no other medication/modalities used, and these over zealous governors and law makers are putting all of us into one category, we chronic pain people that do need them will suffer. I do know after 24 years what works for me. I respect my medications as anyone with a disease (which chronic pain is) and use my medication plus other methods to try to have some life. Many years I had none! Learning to cope, space activities, having better days and sometimes very bad days i.e., we still don't live the "normal" lives of people our age. Waking up is a challenge. Exercises, TENS, medications, mediation, tapping modalities, pain patch i.e. sometimes a neck brace...just to start a day. Now the government wants to push anti-seizure drugs as if they have no serious side effect and they do. One has to do their own and be your best spokesman for yourself. Many doctors know little and even less about chronic pain. Narcotics in a certain group of chronic patients do work. JAMA and the Journal of Pain Medicine (Dec 2017)has the studies and doctors are writing guidelines to the CDC and Medical Societies to State governments. Also, doctors are trying to enlighten them about people like us that are not abusers but suffers that have and are trying everything. I am looking for a new pain doctor because mine is closing his practise. All the new constraints in the changing laws for some medications due to my complex and extensive health issues make it extremely difficult! In my state, most doctors instead of taking the newly, required special courses in order to be able to RX some narcotics, are closing up practice. Even the benzodiazepines are included and this effects people not only with muscle spasms but with anxiety. As a former (RN Educator) health care provider in the medical field, I do lots of research to find answers to try and improve my health. I thought the dark ages of treating chronic pain was over but it is getting worse. I had a young doctor tell me what "my"pain was (subjective) and caused by my narcotic without checking my back (with my street cloths on). My neck is deviated to the left with my cervical fusion (dystonia) and I have at least various sizes of 20 knots in my back mostly in the lumbar and cervical fusion sites which he didn't feel. My chiropractor was floored. He has been working to separate these muscles that are on top of muscles to help them regrow and function for once as normal. I feel sadness reading stories of pain people because it reminds me when I first started years ago on my journey, before so many complications, wondering why certains symptoms occurred and how do I try to improve my function making my body better? Pray everyone gets good help and hope I can help someone.

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I get the trigger point injections too! I’m amazed they don’t hurt too much. Last week one on the muscles deep in my hip was quivering so much as it let go the table was actually vibrating.

REPLY
peach414144 | @peach414144 | Jan 20, 2018
In reply to @lioness "Hello Lynne I posts as Lioness.If you have fibro you need to be strong like a..." + (show)
@lioness

Hello Lynne I posts as Lioness.If you have fibro you need to be strong like a lion.I've had this for 30 yrs. What do you do for the pain?

Jump to this post

thank you jimhd

REPLY
peach414144 | @peach414144 | Jan 20, 2018
In reply to @lyssia "It's nice to know that other pain sufferers feel as I do. I do not want..." + (show)
@lyssia

It's nice to know that other pain sufferers feel as I do. I do not want the insurance companies or government telling my doctor or me (a responsible drug user) what I can or can not use to help my situation. I have a really good pain management doctor for several years now and between the pain medication (use only occasionally right now) injections (upper back trigger point and cervical facet joint steroid) acupuncture, tens, exercise, supplements, meditation practice for me he also has other things as appropriate for the person. I find that this subject of not wanting the doctors to prescribe pain medications to anyone, the insurance companies wanting other medications to be used (that may or may not work or have more side effects) and the government looking at punishing the doctors for prescribing or limiting what amounts can be given to be on my mind a lot. I am at a place at this time where the combination of everything that I use is working pretty good for me and I don't want to go back to where I was in the beginning because of the drug abusers. I don't think that the responsible doctors should not be bunched in with those that are handing out pain meds indiscriminately for a profit. Thanks for letting me vent. : )

Jump to this post

yes, i agree with you and thank you

REPLY
jlfisher56 | @jlfisher56 | Jan 20, 2018
In reply to @lyssia "It's nice to know that other pain sufferers feel as I do. I do not want..." + (show)
@lyssia

It's nice to know that other pain sufferers feel as I do. I do not want the insurance companies or government telling my doctor or me (a responsible drug user) what I can or can not use to help my situation. I have a really good pain management doctor for several years now and between the pain medication (use only occasionally right now) injections (upper back trigger point and cervical facet joint steroid) acupuncture, tens, exercise, supplements, meditation practice for me he also has other things as appropriate for the person. I find that this subject of not wanting the doctors to prescribe pain medications to anyone, the insurance companies wanting other medications to be used (that may or may not work or have more side effects) and the government looking at punishing the doctors for prescribing or limiting what amounts can be given to be on my mind a lot. I am at a place at this time where the combination of everything that I use is working pretty good for me and I don't want to go back to where I was in the beginning because of the drug abusers. I don't think that the responsible doctors should not be bunched in with those that are handing out pain meds indiscriminately for a profit. Thanks for letting me vent. : )

Jump to this post

I have to start writing the Governor and legislators against the latest bills they want to impose in PA further, restrictions regarding the usage of opioids and benzodiazepines. I have a wonderful pain/rehab doctor who is one of the latest to close up practise. Since 1999 I have gone to him and not many are around as knowledgeable as he.
Another great site I found today regarding pain, focused more on fibromyalgia (which many of us do get due to the causes of our chronic pain) is http://www.osher.ucsf.edu. I watched Dr Andrew Gross, Director of the mini Medical School discuss thoroughly fibromyalgia (causes of pain, the pathway, receptors and location of them, the types of drugs that target different receptors and why they technically should work). Anyone can understand this compassionate doctor and even more about pain. The recommendations are for anyone with pain and I appreciated the way he didn't talk "down" and make people feel it is all in their heads. He explained why medications wouldn't work. On YouTube I watched him and he even gave his email! He stated Flexeril (a muscle relaxant) is not used as such for fibromyalgia but acts more like elavil, impedes norepinephrine to decrease pain. Also, the use of the pain medicine Tramadol (synthetic opioid agonist he really doesn't care for with fibro) acts like a serotonin re-uptake inhibitor i.e Cymbalta even though it isn't.
I need to constantly review new science journals and research to find what is out there. This video is 2011 but still the content is valuable.
Also, Mayo has an online site I read concerning medication you take and genetically they can scientifically study why/why not it would work for you. Very interesting. Believe your doctor must apply and submit the forms.

REPLY
virtuous69 | @virtuous69 | Jan 20, 2018

Victorious69 Hello group. Not been on Mayo Connect for some time, but I want to start a discussion on this year's flu shot. Not sure which group I should pop into. I know that no one is to give medical advise as to whether or not to get this years flu shot. I never get a flu shot, because I have Fibromyalgia and my body would attempt to attack my body overkill. I'm just asking your personal experience and how you came by your decision OK?
The CDC and the media are making a massive plea to get flu shots while there is still time. Death tolls are rising, and this is a particularly dangerous strain. I research and this is what I know and why I;m asking your experience: My husband and I are flying sometime in February (peak season for the flu) a one hour flight with friends from San Jose to North Los Vegas. . I also know that some componets like mercury may stay in your body and some vaccines do not contain any mercury. The deaths of two healthy victims in California got the flu shot and died anyway. CDC says only vaccine is only 30 percent down to maybe 10 percent effective against the 3 strains H1N1 and others and may help to make the influenza less dangerous. Being on a plane load of people and virus germs that can live forever on the back of the plane seat cushions, leaves me feeling not very brave.
I am 70 years old this month, have Fibromyalgia, CSF( Epstein Barr) among other ailments. I choose not to get the flu shot as I have believed it would cause my overactive immune system to do just that: overreact. My doctor leaves the decision up to me.
Some neighbors and friends did get the flu shot and got very sick anyway. One couple flew by plane to India over Christmas vacation 16+ hours in not the best circulated air on plane.Husband got the flu shot and got very sick anyway going to India. And got it again flying back. The wife did not take the flu shot and did not get the flu from her husband, Normally I would not be concerned: I am prone to bronchitis every other year or so and take an inhaler for ashma during allergy season. Cough continues for 3 months. I only got two bad flus: in my life:, the Spanish Flu,and the swine flu. Thought I would never stop throwing up. CDC now says that breath molecules can travel through the air just by breathing:not even propelled by a cough or sneeze. Ain;t that encouraging. 🙁
So what has been your expererince so far and how you came by your decision.? I will probably wear a mask on the plane and at the casino where we'll go to have a special dinner .for my birthday. Sorry question is so long..........

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