9 Years of Chronic Pain

Lurkers, members and my fellow Brothers and Sisters. I have been in uber pain for 9 years now. Never found a pain clinic clinic that wasn't some kind of inept money mill. Have done the works with Docs who didn't understand my illness and one who does. Acupuncture helps but who can afford it? Opiates ....although they make me feel like I did before I was ill they don't work over time. I balked under the Authority of oppression. I have been narcotic free for six months and life ain't no crystal staircase but my spine feels like one. I was never an addict, I just don't do well with the Treatment I have had. I wonder if at the root base of my problem is that I am in denial, not about pain killers, but about living with this disease. About living a life of chronic pain. I tried to use opiates to be NORMAL. It is a slippery slope. I don't know if I could say take just 30 pain pills a month and use them cautiously for when I am over whelmed. After six months opiate free the chronic pain is starting to take it's toll on me. Some of us have been there, taking Gaba pentin and other nostrums that don't take the pain away. A ME CFS patient with chronic pain issues is a 1000 foot red flag to any non ME CFS Doctor. More to come...........please share your experiences. For what it is worth, my first sympom was pain in the neck.
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hello xandoff sounds like you are going through alot.....i am in denial alot about being ill the chronic pain and cfs, among other things....its very hard...i use to push myself and do more than i should only to crash later...it only made me sicker...im trying to learn to except being ill but it is very hard. i use to be healthy and independat so its hard to except how sick i am. and its exhausting pretending to anyone around you that you are ok...when your not.

i respect everyones personal views, i know some that dont want pain medications and choose herbals etc. and if it works for them that is wonderful.

i take generic vicodin and morphine for pain, on several other medications for anxiety etc. i couldnt live day to day without pain medications, the pain is just to unbearable, and it is always there...never goes away even with the medications...but sometimes with the pain medications i can take a walk with my kids around neighourhood..have to take after errands etc. but the pain is always there.
i wish i could help maybe someone will post that can offer more suggestions...
maybe someday there will be more research, insurance will cover more such as acupunture.
i hope you feel better and find something to help you be more pain free...it is a horrible thing to go to sleep at night in pain, and wake up in pain....
take care : )
 
HURTINGALLTHETIME
Yes, even on pain killers I tried to deny my illness and pushed myself to be as normal as possible. There is no shame in staying out of pain and I may have to face that I can no longer go without narcotics. It is a difficult position to be in.
 
Have you tried LDN? I haven't tried it but some say that helps them with their pain issues. I hope you'll find something to help.
 
When I was going to Hunter Hopkins Center and Dr. black was managing my pain very close I was working. I was laid off due to the housing bust and could not afford to go back to Hunter Hopkins and I was forced to return to an older clinic I used to go to and the doctor says that you should not be on that amount of mediction and cut the dosage by approximately 60%. I lost my entire quaility of life. I was able to work, help my children and work in the yard. My daily excercise is 59 steps to the mailbox and 59 steps back to either the bed or recliner. That will be my day for 4 years in 3 more weeks. Unless your spine is broke or your missing limbs you will not get any respect at a pain clinic. My new neurologist is not happy about it and her quote was "if he is any kind of pain doctor, his is suppose to be watching and evaluating your quality of life and managing your medication in a manner that allows the highest quality of life without dangers outweighing it." Especially after all of the procedures he has done on you. So, I suspect she is writing a letter to him. I will suspect disability is going to come back on him since i was doing fairly well under Dr. Blacks care, but am basically housebound for almost 4 years. I have several other things to go along with the CFS, but CFS can flare and take everything and multiply it by 10.
 
Just a thought, but firstly, i dont think anyone should have to live in pain and i think its a poorly managed symptom world wide. Now my thought, instead of 1-2 things for pain where doses are slowly elevated as tolerence grows as does side effects(this is like my theory of sleep medications) what about several things in a low dose for pain and when it stops working swap with a different combo eg gabapentine, slow release morphine, mobic alternated weekly or monthly with lyrica, fentnyl, celebrex, something like that to keep doses low, side effects low and reduce tolerence. This has to be better then just using 1 medication and continually jacking the dose up and getting a heap of side effects. I think you will need a switched on lateral thinking docotr for this but if you go in with it thought out or written out when u see him, i think you have a good case to convince them to atleast try it.

I think sometimes we are all in denial and sometimes think its just all in our head, but its not, its not, its not, we just want to wake up and think its a bad dream. Or do you mean accepting this illness, i dont think too many of us accept it, try to ignore it or try to remain positive we can overcome it. I suppose we dont know, all we can do is live 1 day at a time, it might as well be pain free i reckon.

good luck.
 
i wish i knew how to copy and paste in the blogs to respond quotes by everyone becuase everyone that has posted has made such great comments!
xandoff, not happy you went through pushing yourself to be "normal" beucase it can go terribly wrong as you know but im glad you shared and im not alone, its bad enough to have the chronic pain and cfs, but i also have alot of lower back issues, and a knee that is painful but improved...and my thing was pretending to be normal, holding on to what i could do for family, hiding the pain and fatigue, but with the anxietys and phobias i would literally be fast walking , running in store, nervously walking as fast as could and it was beyond horrible later, im still working on that. anyone whould would see me out would probably think i was either crazy {which i feel i am} or a speed walker....what they didnt see was the pain i was doing it and crash afterwards, and your right theres no shame in staying out of pain, and as i said i respect whatever decision anyone makes on how to help/control their pain, but wow your brave i could not live day to day without help from pain medications, i still cry alomst daily from the pain its always there even with the morphine and vicodin.it sounds like you need help, your in my prayers to feel better .

its unbearable to live with the pain and exhaustion i have with the help of medications, and ive tried other things too pt etc. but it gets too expensive, and doesnt work. , the pain is 24/7 never eases up, and from what ive seen from others im not alone and it may take edge off "SOMETIMES" but majority of time it is unimaginable what we go through, and as i said before then theres {its my problem i know and working on it} theres the constant "pretending" to be normal when around your family etc. that is so beyond exhuasting...
 
sorry i wanted to add and couldnt edit {still learning}

xandoff thanks for sharing your story, it helps alot to know that im not alone in the trying to pretend to be normal etc...but you shouldnt live in pain like that either....your a very brave person and .again your in my prayers to feel better..
 
Thank you for all your responses. Managing pain that is really a stuck switch in your brain is very difficult. I have DDD, spinal stenosis, and facet something. My cervical disectomy in 2005 took out two discs in my neck and replaced with titanium screws. The surgery and anesthia launched my CFS into high orbit and the pain never stopped. I have learned a lot being off pain meds. Depending on what pain meds I was on I was constantly in an elevator that was either going up to control the pain or going down which increases the pain. I found that pain is like a train that builds up dangerous speeds and momemtum and if you don't slow it down (take more meds) it will RAMP UP and cause you to crash worse. If you take more meds than you are allowed you are a BAD PAIN PATIENT. Being off opiates I don't get these wild swings, but when I have days that I can't tolerate, I don't eat and I don't have any quality of life. My brain has re-booted in the last six months. I don't want to get into suicidal ideation but this is the recipe. To all who have responded to this I thank you. It is a very important issue for those of us with Co-Morbid pain that is amplified by ME CFS. I like being off opiates, I hate being off opiates..............but the question begs to be asked, what's more important.....quality of life & spirit or living on the edge of suicidal ideation. I have no answers, just a lot of experience. To the person who brought up LDN, I just stopped taking it after three months. Initialy it helped with the pain and then started to make it worse. Hard to be an optimist or talk calmly with a reg GP about why you are a bad pain patient when you have an ice-pick in your spine or your spine feels like it is on fire. With the new DEA drug guidlines a pain patient has a hard row to hoe. Their medical license is at stake. A lot of people are making money on illegal prescription drug sales while we suffer the wrath. Please keep the round-table going! Thanks ALL!
 
You don't really say what your pain is from. It's spinal but is it a disc? Herniations? I have a herniated disc and bulging discs in my neck. I am in horrible pain, can't sleep and blah blah blah. BUT, I would give anything to be able to take pain meds. I am allergic to almost all opiates. I itch like crazy. So, I can't be on them but I would GIVE ANYTHING to be able to be. Take them. I would do whatever I could to be out of pain. It's no life to be in this kind of pain and not sleeping is making me nuts.
 
yes I have spinal stenosis, I had a cervical disectomy with fusion at c4-c-6, I have something called Facet something and bulging discs. What I believe is that my pain volume switch in my brain gets stuck at a higher level. I think without ME CFS my pain would not be amplified the way it is. Emotions , diet, lack of good sleep and many other things turn up the volume. Spitfire I know what you are going through. You are right ....it's no life to be in this kind of pain. Please stay in touch. We are a different sub set of this illness. Thanks for posting!
 

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