Showing posts with label National Pain Report. Show all posts
Showing posts with label National Pain Report. Show all posts

Tuesday, October 17, 2017

"National Pain Report and a New Book about FM and CFS....


FIBROMYALGIA and New Book You maybe interested in.....

Since I really LIKE what National Pain Report says, here is a new book they are talking about, and it's in regard to FM, (Fibromyalgia) which I know MANY of you have, have been diagnosed with it, or told you "may" have it or what they also referred it as, "Chronic Fatigue Syndrome"... I know MANY years back when I was trying to find answers to my "nightmare of several times a month migraines" I had several physicians tell me they thought I "may have" Fibromyalgia, or then also they referred to it as, Chronic Fatigue Syndrome... 

back then it was so NEW, they really had NO CLUE about it at all what it was, what caused it, or EVEN IF IT WAS A REAL DIAGNOSIS... I know MANY women continued to "hear" it as a diagnosis, when doctor's did not KNOW what was wrong, with WOMEN especially so it was either you have FM, CFS, or you are "stressed" or "depressed".... which aren't we ALL those things, whether we are "chronically ill" or NOT... plus being stressed or depressed it NOT just for women, but MANY men now days also... but since I realize that IMOP (which my opinion is not really a matter here) but I THINK that FM is an "autoimmune illness" just as any other like Lupus, RA, Sjogren's, JRA, and the

Thursday, August 17, 2017


I've been saying this for years!!!! Chronic Pain left untreated can result in DEATH!!! For all kinds of reasons. Like the author said many of us have "comorbidity’s" like heart problems, and myself several autoimmune illnesses that put me at a higher risk for "early death". But, you take away what helps me NOT have to deal with severe pain, and my body would probably "shut down"... NOT from NOT TAKING THE MEDICATIONS! BUT. from the HORRIBLE STRESS TO THE BODY OF CHRONIC PAIN DAILY! I posted this article on my Facebook, on Twitter, I am going to post it on my blog, and everywhere I can. I've been trying to get the word out that THEY ONLY TELL ONE SIDE OF THE STORY ON THE NEWS AND SUCH! YOU never HEAR ABOUT US, THOSE THAT WOULD POSSIBLY PASS AWAY FROM STRESSES OF SEVERE CHRONIC PAIN.

Here is the article and PLEASE PASS THIS ALONG!

Monday, September 12, 2016

NPR - Trying to Find Solace from Isolation - A support Group

I have a question for EVERYONE that is either interested in an "online support group for chronic pain and illnesses OR having a Local" group here in my home town - all that are fairly close here in Ennis, Waxahachie, Ellis, Navarro Counties, I have given thought to this for a long time... here is an article from the National Pain Report. - I know many of you feel "isolated" and alone like I do when it comes to our chronic pain and illnesses. Even though we may have family or friends that "try and understand" it is NOT the same thing as having people around you that KNOW because THEY TOO are going through the exact same thing. With the entire ordeal now over chronic pain, and pain medications, and also the use in some states who have legalized "pot" - we still have much stigma, many that do NOT believe us, even the professionals, and trying to cope with that can be almost unbearable. You are already dealing with chronic daily illnesses and pain, then to try and go through "daily life" surrounded by many that may not support or even believe you is devastating. So, PLEASE SPREAD THIS AROUND!!! I will put it up on my blog, my newspaper, and around, but I also NEED HELP IN GETTING THE WORD OUT. If I have enough local people I may consider a group locally. If not, then something online, BUT something that truly gives everyone support.. not just the same old thing.., sometimes groups just don't make it because people become frustrated when they cannot really get the help they need, yet they are putting their time and effort into it. A couple of examples - in the past month, I have had my eye specialist, that I have been going to CANCEL ON THE DAY OF MY APPT. and NOT CALL ME! So, happens, I just had that "feeling in my gut" and since I have to drive about 15 to 20 miles to see him, I called the 2nd time and sure enough, they had "moved" my appt to 11:45AM and it was supposed to be at 2:45PM....NO ONE called at all... and then when they rescheduled it was going to be another 3 or 4 weeks AGAIN before he could see me! It wasted MY TIME getting dressed and ready, when I could have been doing other things, it put off once again an exam that is already way past due partially because of one of my Lupus medications that can cause macular degeneration, and my eyes and glasses are WAY OFF! I am having headaches, not sure if the glasses are related , BUT I got upset. So, I called another eye doctor in Waxahachie and he could see me the next day! But, I had another appt. with the plumbers, so they could see me that Friday! I got there, was checked in and lots of people were coming in and out, so it is a fairly busy office. But, they got to me promptly within 5 to about 8 minutes of my scheduled appt time... they were very accurate with the latest type of equipment, and in fact, so good, I did NOT have to go through old "dilation" of my eyes. He had some very up to date digital equipment that read everything very accurately. I saw him, he told me that I was okay, and no signs of the degeneration, BUT of course I have "cataracts" that are NOT near ready to be fixed. They are not "ripe" enough I believe is what they call it. So, I decided since my exam cost me NOTHING, no co=pay at all, and my insurance was giving me 40% OFF my lenses, frames, and 20% off of the "changing to darker" transitions I guess, and the doctor had put in my script all of that, plus my special prisms that have to be in them due to the double vision.... so I saved something like 160.00 or so on the frames, lenses, and all they needed to be added..., I was SO PLEASED AND WILL DEFINITELY RECOMMEND him to anyone in this area. His staff were extremely nice, they knew their "stuff" and I was so pleased that they were all so very nice and polite! Of course NOW I await my glasses, and did this the Friday before Labor Day, so I am sure it maybe the end of this week (hopefully) before I get them in... the prisms also sometimes take an extra day or so, so it will be 2 weeks this coming Friday. I hop they get here.... But that is JUST ONE EXAMPLE of us as CHRONIC PAIN OR ILLNESS patients (and others when it comes to their time) that is something I should NOT have had to deal with. Doctors EXPECT US TO BE ON TIME AND CALL 24 HOURS AHEAD IF WE CANNOT MAKE AN APPT. - but OUR time is NOT as important for them... Another example was the same as my own regular MD's office. I had an appt. week before last, I was already there and IN THE ROOM waiting for him.... and the nurse steps in to tell me he is "running behind" and would I prefer to reschedule? I TOTALLY understand sometimes emergencies arise, BUT again that has happened to me several times with him over the past couple of years.... those are things that are so frustrating, and especially when you are chronically ill, in pain, & already having been fatigued, plus dealing with showering, dressing and getting yourself to the doctors office.... so, I can see so MANY different aspects of how a online or in person group, potentially could be so beneficial to so many of us. As I told my daughter just this morning, with Mom gone, I have NO ONE HERE to talk with, visit with, etc... my daughter, and I are close as far as talking to one another at least 4 times a week, but she is 8 hours away as far as being physically close... my son is also working and does not live close by, so it is not like I had when Mom and I were within 5or 6 blocks of one another... I feel so very isolated and alone... plus I am dealing with a HUGE amount of guilt, due to issues my Mom left that I didn't know about, thus now I am having to try and cope with... and had I known before she got so ill, I may have been able to "fix" what she has kind of "wronged" leaving me hanging with it all... anyway, just a thought about a group and the article I read.,

Saturday, May 21, 2016

CNN Stigmatizses Chronic Pain Patients in National Pain Report by Paul Gileno

FOR ALL of us that are Chronic Pain Patients, Caretakers, family members of those who suffer from so many different types of Chronic Pain, many of us daily, and without our medications, along with other ways we "fight" against this epidemic, seeing that the CDC and the government is NOT on our side is frightening and down right wrong!

Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.

Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.

It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.

I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!

So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!

Saturday, March 19, 2016

National Pain Report Offers New News - an Online Support Group

I have been following many of their articles over about the past 9 months and LIKE many of the articles, and things they share about pain, chronic pain, and all of the causes of severe never ending pain...

Since I am a pain patient, and also know what it is like to even not have a "great doctor" who listens and helps, and family that seem to not understand, the loss of relationships, friendships and the loneliness that all too often comes with these "silent and often invisible" illnesses...

So, I share with you they are opening up their own Online Support Group!

Friday, February 26, 2016

National Pain Report and President Obama Speaking Up for Those in "Real Pain"

This is exactly the type of support we need! Great News and Thank you President Obama for addressing that our pain is "REAL"!

Please spread this link on to everyone you can. We NEED support like this to fight back against those who don't believe our pain is "real" and that we "need" our medications to be able to have some type of normal in our lives!

 Thank YOU President Obama for your words about this devastating illness often "invisible" yet very REAL!

Tuesday, January 26, 2016

Awesome Article from the National Pain Report ON Treating The Patient Not the Label

 Terrific Article on National Pain Management - ON Treating The Patient - Not The Label

By Terri Lewis, PhD
Terri Lewis, PhD is a frequent contributor to the National Pain Report. She is a daughter and a mother who has witnessed chronic pain first hand. She currently serves as an Assistant Professor, Rehabilitation Counseling and International Programs Consultant at National Changhua University of Education in Taiwan. She originally published this column on Linkedin on January 17.

Follow on Twitter - for National Pain Report

Wednesday, January 6, 2016





This is from the National Pain Report and is in my latest addition of my newspaper that comes out daily, "All Things Autoimmune".... PLEASE PARTICIPATE or Let others know if you can.... this is such a crucial issue right now... we need every opportunity to get our "words" in about the seriousness of "true pain patients" and how it can destroy their qualify of lives without the proper medications!!!!!

Saturday, December 26, 2015

Chronic Pain Medications, Narcotics, the CDC, Public Comments and More information I feel you need to read...

I have to say, that some of this is very true! I do know just from speaking with my pain specialist, that there are many programs all doctors can attend, that are free, and it gives them the knowledge to give patients with chronic pain issues, the proper diagnosis, and then the proper treatments, including medications if needed. 

But WE will NEVER see a CHANGE unless WE as a NATION, as a COMMUNITY, come together as ONE, and demand THINGS CHANGE! I've learned a great deal from my pain doctor about things such as Medicare Advantage Plans, Medicare itself, why many doctors have issues taking some of those policies, or even Medicare... it took my own pain doctor over 2 YEARS and then he had to go in front of a judge JUST TO GET PAIN FOR 2 SURGERIES! Doctors do NOT have time, and they cannot possibly run a practice if they have to wait YEARS to get paid for a procedure... My pain pump surgery alone will be somewhere around 30,000.00 or so... Just the pump in itself, is extremely expensive... 

so if I doctor does a few of those, and then has to wait YEARS to get paid??? They can't possibly stay in business like that. Plus I have heard some doctors admit, one reason they do not give out pain medications is because they feel they are not "trained" enough... our newer physicians ARE now being trained in chronic pain, Lupus, RA, autoimmune illnesses, and that is a good thing. ALL physicians should know about these diseases, and about chronic pain... So, I believe that the CDC has some to do with it, but then I feel "Congress" and the likes also have their fingers in it, along with our "insurance, Medicare" and so forth... and the fact that WE have to stop Hiding our heads in the sand, and STAND UP AND TELL OUR STORIES!!!! It is totally imperative that WE STAND TOGETHER and make our voices heard. 

We have some great organizations out there, the US Pain Foundation​, Power of Pain Foundation just to name two of them, but they also NEED US to HELP them get the word out... that is the ONLY way we as patients, caretakers, family and friends, will get the treatments we need, under the right circumstances, and not have our physicians "frightened" to prescribe the medications their patients need.... many of us cannot AFFORD a "specialist".... And even Finding a "good Pain Doctor" is NOT EASY! 

Can you imagine walking into a "Pain Management Doctor's Office" that ALSO IS A TEACHING UNIVERSITY, to find out THEY do NOT "prescribe" pain medications, but they send a 'RECOMMENDATION" TO THE patients PCP to give them the medications??? now how stupid is that!!! Talk about nuts! Then WHY call themselves a PAIN MANAGEMENT CLINIC???? This just happened last week to a friend of mine, and I know of a doctor here, that is a "pain doctor" but he got "reprimanded" so he can prescribe "some medications" but nothing that would be "narcotic" in nature... so you go in, thinking you will get the help you need... and then find out he can give out other medications, BUT he cannot prescribe any type of narcotic, even though he tells you that is what you need!

Don’t Blame CDC for Poor Pain Care — Pain News Network




Saturday, September 19, 2015

Pain Awareness Month and Suicide Prevention Month - Do We think about just how badly chronic pain can be and for some, almost to the place of not being able to live with it....

This is so well put! WE, many of us, with chronic daily pain, the kind that without any treatment would leave you in bed, on the sofa, and without ANY quality of LIFE!!!!! Yet, those FEW who choose to "abuse" medications, cause a ridiculous amount of questioning, hoop jumping, "looks at us like we are "addicts" " and even many that all of a sudden can no longer GET their meds... as she put it... to HAVE A LIFE  ... we do not use meds to "escape" from living... that in itself was one of the best ways I've heard to speak about the people that abuse medications. But those that do cause harm by their own abuse, and making life almost unbearable for those that do everything correctly.... just to as I say, and the article says to have "life"... NO PAIN medication EVER completely takes pain away.... it makes us "able to deal" with the pain better, when it is "less" than unbearable. I have an implanted pain pump that my Pain Doctor implanted in 2010... and we have "tweaked" the medication in it over the years, if need be. But, I still have a script for "back up" pain... maybe I am having more pain than usual from a weather change, or from doing something in my daily life that may exaserbate the pain at times. Yet, nothing takes it away... it helps me deal with what is pain remains... it allows me energy to DO my errands chores, go out for a day to have a bit of "off time" and so on.... if it were NOT for my pain medications, I would almost be to a place that it would be "intractable"... more often than not... and in fact, due to a lower back lumbar/sacral problem, there have been at least two times in the last 3 years that it was like I have NO PAIN medication at all.... In fact I even went through and had a talk with my pain doctor. All I wanted to do it sit in the floor and cry, the pain was so horrid.... I went that way for weeks... and we found the problem... and now due to this abscess I am still not able t0 have surgery... but at times even with what I have, it can be to the point you wonder if you are not just going to go insane from the pain.  So, each time I see or hear about how many "abuse" medications and all they want to do to make it almost impossible for us to get our medications, it just infuriates me... for ONE DAY I would like to "hand over" my pain to some of those that think it is all "bull" and let them walk in my shoes for 24 hours... I wonder how they would feel, when they awake to stiff, swollen, throbbing hands, knuckles, feet, ankles, hips, pain down my leg, severe headache from Lupus... and see how long they could "tackle" the pain without any help from medications... If you gave them a week, I bet 95% or more of them would be begging for relief..... And I have had several people over the years ask me how I "cope"?  How do I get up and around with the pain and chronic illnesses, the fatigue, the swelling in my joints the stiffness, the pain that does not matter if you sit, stand, lay down... it is just there,... and by "faith" and "hope" and taking ALL of my medications as I am instructed, and trying to stay as active as possible... helps me to cope... my writing, my blog, being here on FB, my activism, advocacy, and my Ambassador roles... the AF, WEGO, Lupus Foundation, IFAA.... all of those and more, that give me the will to know I must FIGHT not just for myself, but for others out there just like myself or even worse.... Rhia Steele​



After reading this article I felt compelled to share it. This is one of the MANY complicated emotions when you are dealing with Chronic Daily Unrelenting Pain....