Living with untreated chronic pain is my life. Every single minute, every single second of the past 8 years my body screams at me. It screams that something is wrong and that feeling this way isn’t normal. It screams that it needs help and that no one can live like this forever. It screams that no one can endure this kind of suffering. It screams every time I try to use it in the most basic normal way. It protests even the slightest touch because even the most basic contact is agony. It protests every time I try to make it work the way everyone tells me it is supposed to.
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The shocking truth about life with untreated chronic pain
How racism in pain management endagers the life of Black Americans
Pain is meant as a warning. When our bodies feel pain it triggers a fight or response that tells us we are in trouble. But when the pain continues our body doesn’t know what to do so the sensation of pain continues to increase to get our attention. Yet, society has determined that treatment for pain is no longer necessary (sometimes cancer patients can get treatment, but increasingly even they are out of luck).
For several years I was able to get a small amount of medication to treat my pain, but that is no more. My doctor is theoretically still willing to prescribe it, but she’s being harassed by the medical board and has had to implement ridiculous procedures ($3,000 drug tests every 3 months not covered by insurance). Since I’m not independently wealthy I can’t afford that kind of cost, and between the pharmacy and insurance company, it was almost impossible to get my medication anyway. So off I stroll into the arena of untreated chronic pain.
Pain is a warning. When our bodies feel pain it triggers a fight response that tells us we are in trouble. When the pain continues our body doesn't know what to do so the pain increases to get our attention. Click To Tweet
What does untreated chronic pain mean?
For me, it means losing a lot of the life I was living before.
- I gave up volunteering at my child’s school
- I’m rarely able to blog anymore
- My social life is non-existent
- My mental health has suffered as I’m stuck at home more
- My kids have suffered because I’m more physically limited
- I’ve can’t exercise
- No more vacations that involve any walking (good thing I went to NY and DC last year because I won’t be able to handle that kind of walking ever again).
- My house isn’t as clean
- I can’t cook as often
Mostly what untreated chronic pain means is a lower quality of life, and that the pain usually wins in a fight. I’ve fought for eight years to keep as normal a life as possible, but a normal life is now out of view. Of course, I can live with the comfort that I’ll never be an addict, but since 4 years of pain medication didn’t turn me into an addict, I don’t really find this comforting.
Pain is complicated
Pain is not a single uncomplicated entity like it’s portrayed in the media these days.
I’ve talked before about the side effects of constant agony. These side effects are not things that are easily overcome with a positive attitude and acceptance of the pain. Pain has a devastating effect on the body. Pain can kill, but if it doesn’t it actually impairs the hippocampus. That’s the part of the brain that regulates learning, memory, and emotional processing.
Pain has a devastating effect on the body. Pain can kill, but if it doesn't it actually impairs the hippocampus. That's the part of the brain that regulates learning, memory, and emotional processing. Click To Tweet
Long term pain has devastating effects
Pain has had a devastating effect on me. I used to be social, talkative, and friendly. Nowadays I’m mostly a homebody with an ever-shrinking circle of friends. I just don’t have the energy for anything besides my family anymore. The higher my pain levels get, the less I sleep, and the less I sleep the higher my pain levels go, which sucks me of any energy. Interventions that don’t require medication, while usually beneficial, are not helpful when I get to this point. I used to be able to interrupt this cycle with pain medication, but that is no more.
What I wish healthy people realized is that many types of chronic pain cannot be wished away, ignored with a positive attitude, or solved with essential oils. No person is the same and no pain is the same, which is why it should be treated with a multifaceted approach instead of brushed off. There are millions of people living with chronic pain that have lost access to their medication, and therefore lost their quality of life. I wonder when someone will care.
Don’t ever give up! Look for a pain clinic and get some treatment, whether prescription or something, anything, else. Cymbalta isn’t an opiod, and helps my allodynia a ton! Keep us informed and chin up warrioress! We’re here for you!
I’m a little afraid of Cymbalta. I tried Savella and it was unaffordable and absolute hell to come off of.
You should be afraid of Cymbalta! It took me 10 months to wean off of it–as slowly as humanly possible. But the side effects created a depression and rage I’ve never felt before. I was suicidal several times–knowing all along that it was the medication causing me to feel that way. My husband had to watch me closely.
Gentle hugs sweetie. I’m assuming finding another doctor who isn’t afraid of the medical boards is not an option? I’m assuming a lot of the issue is your insurance company. I don’t know where you live or the true complexity of your dilemma but there is a website called Good RX that might be able to help. It’s a drug coupon site. You put in the name of the drug and it will tell you what price you would pay at their participating pharmacies–and there are a lot. With insurance Plaquenil costs me $350/month. With Good RX it’s $35. You don’t usually even give them your insurance card because you will have to submit your receipt to get deductible credit. If you want to email me (tisdale at gmail dot com) I’m happy to answer any questions or commiserate or give you any insight as to what I have found that helps. We all love and support you
I have had the struggle for 26yrs now. Sept 2017 was the last time I had pain relief until now. About 3 yrs ago I decided that I have had enough and finally found a pain clinic. It was short lived and they went under…closing and moving on. I finally found someone last month who gave me Nycunta and it currently is working wonders. My house is totally wreck from not being able to do and I haven’t a clue how to catch up. The newest problem is with Medicare…this med is $700.00+ a month . I will use my benefit up quickly..and they will expect me to pay full price. I haven’t a clue what to do except trying to drag myself through the mud of pain and problems. When I lost my pain med I ended up taking so much Advil that I am anemic now with 3 stomach ulsers. Troubles cause troubles. It keeps snowballing. I have lost so much dealing with this. I manufacture *good* times the best I can. Sometimes we have nowhere to turn to.
I’m so sorry Marybeth, I know exactly how you feel. It seems like pain relief is now only available for rich people.
Have you tried GoodRx? I looked and you can get it for 1/2 the cost using their coupon and participating pharmacies!
I love it when I was told by a ‘friend’ that I too should try essential oils, or a slew of different vitamins and herbs- ( I already tried all of that ), I’ve tried Cannabis too. I can’t smoke it since it’s too harsh for my ‘virgin’ lungs, but, I’ve tried edibles, a homemade tincture, teas, etc. I live in Southern California, and it’s easily found in every form and every strain-
Cannabis may work for people with anxiety, or PTSD, from what I’ve heard, but, for nerve pain, or pain from injuries, it just doesn’t help at all.
I recently read an article about retired football players that have tried it for pain. Their consensus was that it didn’t help them either. So unfortunate that Cannabis couldn’t help me, and I tried many different strains, and I tried many different forms.
Good luck all to finding some relief.
It’s so true that the wealthy are not left to just suffer.
I actually know a wealthy young girl, with the very best insurance, that either spends a few days in the hospital each month from severe menstral cramps, or her doctor will give her a prescription for one of the strongest pain killers available, that comes in a patch form, called dilaudid. I was on that at one time- before the so called Opioid Epidemic. I actually had a life when I was able to use that medication.
Now, it’s only for end stage cancer patients. Or, for my ‘friend’ with a lot of money.
A pain patch doesn’t go through your stomach, and is less likely to cause a blockage. My body is prone to that.
I’m so sorry things are so difficult, to say the least! I wish I had some ideas for you, but I’m sure you have looked at so many things already!When I’m really down with the pain and frustration, I return to reading my copy of “Osler’s Web.” It has so many stories of people who were/are so much worse off than I am, and they were/are so totally misunderstood. You’d think it would make me feel depressed (though I guess somewhat true) but it definitely helps me feel less alone!
I know what you mean. I hate to hear of other people’s suffering, but it does help to know that I’m not alone.
I forgot to mention a non-narcotic drug I take that took away 75% of my Fibro pain–Low-Dose Naltrexone. I was my doctor’s most severe patient (his words) and I convinced him to try me on this. It wasn’t covered by insurance but it’s not a narcotic–meaning it might be easier to get a prescription. You have to use a compound pharmacy but the cost initially was about $80 a month for the liquid. After you ramp up you can switch to pills and it’s cheaper. I saw major results in 1 week. Again, email me if you want more details. Happy to help!
I hate this so much. I also have no pain coverage anymore. I survive on handfuls of extra-strength Tylenol everyday, but it barely touches the pain, and I have no idea when THAT will catch up with me…sigh. I have lost SO MUCH of my quality of life. And it just keeps getting worse. Life is barely worth living, but unfortunately, I do not have a terminal illness–just multiple chronic ones, along with failed surgeries that add up to a crap load of pain and awful symptoms I wouldn’t wish on my worst enemy. But YEAH!!! I’m not an “addict.” Lol!
p.s. YEARS of responsibly taking my medication meant NOTHING in the end…the way patients in pain are treated these days is shameful, and in my opinion, violates all codes of ethics. Dogs are treated better…