New Pain Comes With Added Emotions

New Pain Comes With Added Emotions

Every time my pain level escalates, combined with the pain I am already trying to control, I often experience an array of emotions making me feel as I did when my journey with pain first started. I no sooner seem to get on top of my pain levels with medication when something new comes along and changes the balance I have just achieved. After adjusting to my recent twenty-fifth surgery, a toe fusion, I attempted to try to use my sewing machine for the first time in years. However, within minutes, leaning carefully over the machine, it just turned out it wasn’t safe enough and C-5 slipped out, just below my second neck fusion. I was quickly reminded why I chose to get that neck fused, for the neck pain quickly overtakes your wellbeing, your concentration and, at its worst, your ability to feel hopeful and happy. And how annoying it is to begin that process again of trying to cope with these negative changes, often creating a downward emotional spiral.

The good news is that when this settles back down and C-5 – 7 stop slipping out of position, things will improve. It, unfortunately, takes longer for the calming of the body living with Ehlers-Danlos Syndrome. So for now, increased pain, lack of quality of sleep despite cannabis increased and adding even more ketamine troches before bed, having my husband push down the subluxed shoulder at midnight, and a good cry seems to be for life.

Ellen Lenox Smith

Living with uncontrolled pain makes my quality of sleep or any sleep impossible. My cognitive function often diminishes dramatically as excessive pain stimuli overwhelm many normal cognitive functions and then, most traumatic, is the sinking feeling that comes with the loss of hope. Thanks to the second neck fusion, I can have times when the stars are aligned, and I get a break for a moment and am so grateful. But I live knowing missing one medication, not keeping the muscles strong to hold the frame together that has useless ligaments and tendons, eating food and taking medications I can’t metabolize, being hugged causing the bones to shift, and a simple jolt of the car – all this simply goes away and I work again to try to find that peace in this body.

So, yes, I live with pain, struggle with life and the loss of dreams that are never going to be. Part of what helps me cope is to attempt to act pro-actively. That is why you generally see me posting the efforts we can try to take to help ourselves and to attempt to look at what is left in our lives that is positive. That may sound like it means I have no pain – for me, it means I am trying to live the life I have left and be remembered by my family and friends as one who tried to not be bitter and still care about those around me. Life is made up of choices we make, and these happen to be mine and know I am not judging you for choosing to take a different path with what you are coping with.

Don’t you just wish that those who don’t understand life with pain could spend a day in your body to learn, listen and have compassion for those who, by their circumstances have been forced to live a life dominated by something they never asked for or deserved have been asked to live life with it?

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website.

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Tabitha shileds

Such a shame and a sham. The hysteria surrounding opioids , an amazing drug that works for long term chronic pain, is nothing more than a money grab , it is despicable . We have human rights , we need to push fir legislation and a Chronic Paitients Protection Act . My life has definitely changed for the worst since my medications we’re cut in half , now I just enough to get out the door , endure the workday and get to sleep but then around 2 hours of sleeping I am up with pain levels maxing , I force myself to try and wait to take my next scheduled medication . The mediactions I have now cover me for about 12 hours , where I used to be able to have considerable relief around the clock , further more now that my pain is being allowed to soike so frequently the first dose is not as effective and I am usually not down to a level 3 or 4 until after my second dosing cycle . It’s just pathetic . My house is now falling apart , my social life is gone . If I am not at work I am in bed . I stay in bed all weekend . Quality of life used to mean something . I make about 120 k a year , have been on opoids for about 20 years with never a.problem., never once though of sticking a needle in my arm. This who debacle is a farse that spits in the face of addiction science whose core principal is addicts are born not made . It is true , no doctor makes and addict , an addict may discover their drug of choice after being prescibed an opoid for something true but should that issue then mean no one can get pain relief because a few people make develop an addiction? It’s outrageous. So alcohol and tobacco which kill far more people daily and yearly are taxed and sold on every corner but opioids are somehow the issue we are focused on because of heroin addicts getting hooked on heroin that flows over our southern border like a river. But the politicians don’t want to do anything about that because it is easier to attack chronic pain Paitients . Just sickening . We need to sue


Thomas, contact Medicare they have help for you. The pain Clinic can not charge you more than the approved amount Medicare state’s, Unless you’re going to a facility that is out-of-network. If that’s the case then I would suggest finding an in network one. Unless you’re out-of-network Clinic has an agreement to accept the standard Medicare payments they are allowed to up-charge you according to their set standards.


Oh boy,, it’s the same thing for most of us I believe. We live in some state of pain on a daily basis. I have to tell my pain daily that you are not going to beat me today, I’m the one in control and I choose to be happy and do what I can dispite you. I do everything I know to decrease pain and yes some days it gets an upper hand.Those you have never had to deal with Real excruciating pain have no understanding of the struggles we face and will not unless it were to happen to them. Right now there’s been a bill in the house to protect pre-existing conditions that’s been sitting there for approval since 8/2/2019 #HR4159 . If they were more concerned about their country and the people who pay for them to be there for the country’s issues instead of their constant childish bickering and dislike for one another and get back to the real issues, this bill should have been passed along to the Senate time ago. And if they were truly concerned about good health care practices and true pain control they would drop this pathetic fake opioid epidemic claim and look at the real evidence of the deaths related to the Illegal drug trafficking and abuse instead of withholding proven pain relieving medications that have helped for years.
I recently had to fight for my pain Clinic treatments that I have been doing for years covering my cervical spine. I was informed I could not get my normally scheduled spinaial injection for 3 more months which meant going 4 months without treatment which I was getting every 12 weeks. I was not going to let that stand! After a few conversations with the new insurance company and the clinic’s Authorization Department, I got my appointment made for 10 days from today! Sometimes you just have to go for it, get phone numbers to your clinic’s other departments and go for it. Talk to your insurance company Agents and ask them to look deeper into the policy for any stipulations/restrictions for treatment your seeking. Sometimes it works!

Thomas Wayne Kidd

I certainly don’t want to have to go to the streets for pain relief. This is an wicked thing that our government has done to us. My wife has just got her Medicare but it’s basically useless. She desperately needs to be treated for her chronic pain but there seems to be no opportunity to do this now. I am so sickened by the politics and bull going on in Washington. I will never vote again. Both parties are just as bad, bickering and threatening one another while the sick and dying are neglected. Seems no one cares for the suffering and dying. Our nation is in terrible shape and if this evil fake mess isn’t fixed millions more will die. I have thought hard and do research about every day as I am able and have come to this conclusion; they have planned this and it’s nothing more than population control. I pray that I am wrong but I fear I am not. I weep much for others who are suffering more than myself. I learned long ago that it’s not all about me.

Thomas Wayne Kidd

My pain clinic has raised my co-payments, it’s much more than the 20% I am required to pay after Medicare. I am thinking that they are planning on getting rid of me. I would appreciate any advice from anyone please. I am so tired of being mistreated by so-called professionals because of the fake prescription drug crisis. In the so to be 15 years I have been going there I have been a model patient but this means nothing to them. I appreciate the article today. Keep up the good work. Thank you.


Just know that you and your writings here MATTER!

Dear Ellen, I too live in the same cycle/escalation of symptoms where I often must reset the tolerance bar. Cleary those who observe me on the outside look perplexed as I try to explain my multiple symptoms and the extreme level of sensory disruption & discomfort I’m enduring in order to give a calm and collected appearance while in their presence. As I think back to a time before the 2017 incident, I tell my guests its okay… try not to imagine what I am living with for it is impossible, that I too would be unable to comprehend this shattered life before it happened… that if they were to step into my shoes for just a few seconds, the abrupt shock would most likely drop them instantly to their knees while screaming for help.


fyi, Our local NPR station (IOW I dont know if NPR story or KUOW story) talked about how ppl of color, Blacks in particular are discriminated against in Rxing pn meds. I didn’t get to listen but they podcast so I recommend this story. ((nothing about this whole disasterous scenario is more true, IMO))


IRT: New emotions per pain uptick – now since this new genocidal attack on pn pts, I experience anger. Like, how dare those with no Md training, no pn training and most import. no pn, try to write my medical tx.

Dr. Mark W. Helfand

I certainly understand what you are saying. I have had CRPS for 20 years and to my surprise, it continues to progress. I cannot compare your pain with mine since I don’t have your condition and I would never be so presumptuous to say mine is worse. It doesn’t matter who has more pain because to the person in pain, theirs is the worse they have ever experienced. I can sympathize with your increases in pain. After 20 years, my CRPS is continuing to progress to full body. I won’t tell you to be strong, or I wish you luck in the future because those platitudes never helped me. It just showed that the people saying them had no idea what I was going through. I will say that, as much as possible, I understand what you are going through. I hope you find better ways to cope, if that is possible, and I’m happy that you have someone by your side.

Wendy Paley

Dear Ellen, it makes me so sad that a simple thing like trying to use your sewing machine increased your pain so significantly. You are a true warrior. I hope this increased pain in your neck will be temporary!. I agree with your statement that if only friends and family could live in our bodies for one day, it would certainly create so much more empathy and understanding of what we go through on a daily basis. Take good care of yourself and thank you so much for your inspiring writings on this site.

Teresa Ingebrigtsen

I am so sorry for your pain. Pain is truly the devil. I am so tired of it. I try not to be discouraged but I just received a denial for my acupuncture. Really? It helps!! I have no other “treatment” . The medication they prescribe, muscle relaxers and tylenol, are completely worthless. The acupuncture actually helps and they are cutting me off! I will see the dr again next week and plead my case. I can barely walk some days, the pain in my feet is so bad. Not to mention the pain in my back, knees, hip, butt, neck, shoulders, elbow. I’m tired. I feel like nobody cares at this point. Staying positive is so difficult sometimes. Thank God for my husband and my sweet little boy, Iggy, he is such a great dog, God knew I would need him more than he needed me when I rescued him from the shelter.

Rogers in your byline confused me for a moment. Good morning Ellen. I so admire your continued efforts to resume different activities. Your last paragraph in particular spoke to me. While I don’t want anyone to suffer with pain, especially my family members, it might help them understand what it means to live with chronic pain. How hard each day can be.
My oldest son is almost 47 and doesn’t want me to reference my health problems and recently he pretty much said so. Not sure how I will respond. But again thank you for sharing.


Well said Ellen thank you… for me, the hardest part of living with invisible illness, mine is interstitial cystitis AKA painful bladder syndrome for 30 years has been… because people cannot see Pain they look at you and often accuse you of being a “Hypochondriac”… if you take time on a “good day” when you’re feeling a little “normal” painwise and put makeup on to try to make yourself feel better because you’re tired of looking in the mirror and seeing yourself waste away because of Non-Stop chronic 24/7 pain… people often accuse you of “Faking” It… those people can sometimes be friends or family members that love you but truly don’t understand why we can’t attend Gatherings or events on and off… we do not choose to lay in bed and suffer this is what has been handed to us and we do our best… unfortunately, chronic pain patients have been put into a fishbowl with opioid abusers that only wanted to get high… we have been given a STIGMA of ‘drug-seeking behavior”… how do WE continue as a human being to convince various people… PAIN PATIENTS ARE NOT DRUG SEEKERS…WE ARE SICK! Now that I’m a senior citizen it makes me realize how short life is and how we must continue to prove that we need our pain medications back… so we can try to get some sort of relief so we can get out of bed and be around family and friends again because to be honest … I’m speaking on my behalf … I’m tired of trying to convince people I’m sick. Can’t they tell by the black circles around my eyes? I do not want sympathy but empathy sometimes would be nice… anyone can get sick and those people that accuse invisible illness patients of Faking It could possibly end up on our side in 24 7 non-stop chronic pain, hopefully not… Medical Cannabis does not work for everyone… let patient &
doctors have a relationship again and give us our pain management back… no wonder people are emotional… it’s a god-given right to not be left to suffer 💜. Thank you for reading.

Maureen M.

HI Ellen, I do hope that fused toe is healing well. I can absolutely relate to this post, especially today. I hosed down and swept my carport and driveway yesterday. OUCH!
I got cocky because I was having an ‘unsual’ lower pain kind of day.
By last eve I was in agony. By bedtime I was nauseous from extreme pain and greatly suffering.
I have been working hard on new ways of managing my uncontrolled pain…not easy! But, we live on HOPE that one day our bodies will turn a corner and even out and never have ‘bad’ days again. I mostly have bad days with my spine related pain issues, RSD and Systemic Lupus.
Well, last night and so far today I have that ‘defeated/disappointed feeling (yet with hope lingering still in the back of my head to feel better as this day goes on, after all, I have a haircut appt this afternoon that I’d love to keep LOL).
So, today, I start over. I’m still nauseous and feel a Lupus flare coming on so I will rest all day (except for during my hair appt! 🙂 if I make it. ) and have that repeated big talk with myself about not doing things that only ‘normal’ people can do and keeping the fine line of balance with my pain levels and flare ups! Such is life in the fast lane! ha!
It’s so difficult since we consistently yearn to be FREE of PAIN. Live and Learn, once again!

Terri Wetz

Every day is a roll of the dice for me too, never know when a flare-up will strike, where it will be or how many days it’ll last. I have full body, bilateral RSD, triple-d in the full cervical spine, severe arthritis in my lumbar region with bone spurs on L-1 to L-3 and fibromyalgia from my hips to my shoulders. But with all this going on I am stubborn on letting it get the best of me. I live on my own by learning to use every helpful tool at my disposal. During the early years I let my pride get in the way because I didn’t want the reactions of strangers, most of which I’d probably never see again, to affect me emotionally. I finally figured out it was their own perceptions and prejudices they took home with themselves to stew over, they think that way about anyone who is different or “not normal”. It really had nothing to do with me personally. So go ahead and use those electric carts in stores, order your groceries online for pick up or delivery, take the offers of others to ride along with them or pick up an item or two for you from wherever they’re going. Save your spoons and use your tools!


You are so inspiring! I get excited when I see your writing in the national pain report today. YOU have helped me see the positive still there living in a body with constant chronic pain. Thank you for this today!