My Story: HYPERALGESIA Is Real and More Common Than You Think

My Story: HYPERALGESIA Is Real and More Common Than You Think

Allie Haroutunian

Allie Haroutunian

Let me start with this. We need to be responsible patients and discuss any plans to come off medications with medical professionals first.

For the past three months I have been weaning off of every single medication I’ve been on since needing to manage chronic pain. I came to a point where I had enough of the patches, the reminders to take pills of which I couldn’t tell were working, and the onset of withdrawal symptoms after taking my medication thirty minutes late. Frankly, it was all BS. I felt sluggish and tired, drunk sometimes, even high. I couldn’t comprehend why I had to take these medications if they weren’t helping my symptoms.

I felt locked into a pattern of behavior: feel pain = take meds.

Whenever I would entertain ideas of saying screw it — rip off the patch, and throw the pills away — it would be like I had this huge mountain ahead of me to climb with no guarantee that my baseline pain levels would be even tolerable.

I felt like a zombie but wasn’t personally aware of how crazy I looked until I was clued in by my family. They said that I slurred my speech when I spoke, and that my eyes looked empty. I knew I wasn’t myself, but otherwise thought I was functioning at relatively normal levels, just flying under the radar. I would’ve never guessed I slur–how embarrassing! That clued me in on how vastly different my perceived reality was from my actual reality. That’s a scary place to be, psychologically.

What else did I perceive incorrectly?

Where else had I been an oblivious walking zombie, foolishly thinking everything was all good?

I couldn’t help to think back on various social situations and questioned my behavior…to the point of over-analyzing every move. It was nuts. And I felt nuts.

I decided once and for all that I would do a little experiment on myself. What more could I lose? I had nothing but time, and I definitely didn’t care about withdrawal symptoms — they’re nothing compared to the hell of chronic pain. More importantly, what if dropping the medications out of my routine helped decrease daily pain levels? Now that’s worth trying. After all, opioid-induced hyperalgesia, born from long term narcotic use, is a common but abnormal hypersensitivity to pain. Being in such a state, the efficacy of pain medications is greatly reduced, serving as a sign to patients that there is an imbalance present. I had to step out of my comfort zone and get real with myself. If I was truly committed to trying anything and everything humanly possible to change my state of constant pain, I had to try all things with gusto and commitment (otherwise known as the hard way). It took a change in my mentality to push me to take action. I had to logically deduce that if they [medications] weren’t working then I shouldn’t be wasting my time on hoping the outcome would change suddenly one day after a magical dose. That’s the definition of insanity.

I had options: rehab center or weaning [titrating] down with a doctor. I called various rehab facilities in California, and immediately felt like a drug addict. I told them I was inadvertently physiologically (physically) dependent on narcotics after three years due to a [now] lifelong injury. I was told that psychological addiction and physiological dependence are the same and treated the same. This statement could not be more false, and is refuted by many addiction specialists. Dependence and addiction are therapeutically treated differently — dependence being tolerance and addiction being positive reward reinforcements to negative behaviors. I was told that no matter how physiologically addicted one may be there is always a psychological addiction at play. Again, this is not true; these issues are separate and one isn’t needed for the other to present. Despite describing how I don’t have a desire for the medication, am not displaying troubling behaviors like stealing for a fix, and am personally requesting to get off the medications — these reasons weren’t enough to prove to them the difference. So I respectfully moved on to plan B: titrating down. I confidently told my doctor that I wanted off this ride. He was hesitant, but I was adamant since this was the only other way to do it safely.

Thus far I’m halfway through and feeling remarkably different. Most days I don’t have severe withdrawal symptoms, and attribute that to the virtue of weaning down step-by-step. Yes, I still deal with chronic pain every day but no longer have a need to think about it or manage it every second of the day. The intensity of pain is different — far less than what it was — and the type of pain is different. It used to be electrical in nature, but now feels related to musculoskeletal deficiencies in strength and coordination. I feel like I wasted so much time being in pain, hemming and hawing about coming off these medications instead of just doing it. There was so much trepidation leading up to the actual event — leading up to what being at my baseline could be like — that I would shy away and decide to start tomorrow. It’s always tomorrow. And maybe that’s the psychological part of the equation. But when I began to think differently about how to optimally manage each body system and each related symptom is when things turned around. I stopped being complacent, and became even more aggressive about my health but in a new way. I saw my body as a temple, a gift and how I treat it directly affects how I feel…and I just want to feel good. Trying to stop the pain at all costs turned into trying to find wellness at all costs. And it worked. Now I can walk and there is nothing I would trade to go back to how things once were. As I continue decreasing I will assess my body and discuss the ups and downs along with what it’s like being at a true baseline.

I want to encourage anyone who may want to wean off their medications to discuss in comments and ask, ask, ask questions — the best way to learn is from each other.

Authored by: Allie Haroutunian

There are 15 comments for this article
  1. Brenda Myers at 9:10 pm

    I find your story a bit hard to believe-first true intractable pain HAS to be treated with some form of heavy duty pain meds. Now you may have a chronic pain issue -but thats not the same thing. And Hyperalgesic syndrome is actually rare. I have notice lately that this web site keeps running stories talking opiods down-I guess the DEA has gotten in this site too!!
    I dont buy into this latest rash of stories about how you dont NEED meds-get massage or accupunture-crappola-my comment wont be posted anyway

  2. Gracie Bagosy-Young at 8:16 am

    Hello-
    I would like to thank you for having the courage to make yourself vulnerable and speak out. Telling your story is not always easy. I understand this and I appreciate you.
    Giving up the meds is a very personal decision and is not one to be taken lightly. I gave them up as well. However, as Chandra Welter pointed out, the same meds are very necessary to other chronic pain patients. Each and every one of us are so incredibly unique. We are all entitled to individual, tailored treatment as opposed to blanket policies.
    We are all in this together!
    Gracie Bagosy-Young

  3. April Dawn at 9:08 pm

    Thank you for your comments. I really appreciate a voice of sanity in all this demonizing of opioids. We are all different. We all are trying to deal with different illnesses/injuries along with other different challenges and strengths. The CDC’s “guild lines” make me feel invisible – or like a criminal who has been judged guilty. I don’t feel like they are looking at patients in severe life destroying pain. The humanity is gone with their form of treatment. Harm is caused by these “guide lines”. It seems to me that the doctor patient relationship should be the primary place to determine treatments – and like you said – on an individual level. And if medications are going to be reduced or stopped, they certainly shouldn’t be stopped until a replacement – one that actually works – is found and is being used. I can’t help but think that those of us in chronic pain are being ignored, no punished, as a side-effect of the “war on drugs”. The “war on drugs” has no place in a medical room and treatment plan.

  4. Jennifer Millar at 7:50 pm

    I’m really offended by a 25 yo girl who has 3 yrs of chronic pain from ONE SOURCE, tell me that I haven’t “gotten real” with myself, “tried with everything I have”, to find a way to function as a Mom and spouse after fighting multiple autoimmune diseases that have destroyed every organ & system in my body. At your age I had the strength to be on short acting meds, work FT & keep a hectic schedule. At 49, with the same diseases & serious conditions as high BP, uncontrolled diabetes, gastroparesis & arthritis in every joint, my neck & back, I can’t even grocery shop let alone take a shower. I had my first & only increase of morphine ER after 7 years on the same dose. It’s been 2 years & now I’m being told to reduce my med by 1/3 the total dose. What happened the first day I did? My blood sugar crashed & I was unconscious in front of my 16 yo son. Since then, a week later, my whole body is fighting itself so hard, I can’t do anything. But as a Pain Ambassador for US Pain Foundation, I advocate for proper access & treatment of CNCP. I’ve been in your shoes many times trying to get off all meds, and was also labeled an addict despite my strict compliance. I tell my Dr I’m tolerant, because that’s what she wants to hear. In the meantime, my increase by 60 mg by my pain Dr that left the state is preventing me from getting proper health care for any issues, with the exception of my endocrinologist. I’d love to be off all meds, including BP & insulin, the reality is, it’s not going to happen. My body is shutting down from sheer exhaustion of fighting for decades, & now I have to fight for health care? I did go off all pain meds in my late 20’s & suffered. I was afraid of taking them until I found one that gave me my life back. I’m tall, and my weight & metabolism of pain meds goes into the equation of the proper dose for ME. Dosing isn’t a one size fits all; & if Medicare paid for other modalities such as PT, massage, cognitive therapy, acupuncture, I’d be ecstatic & doing it all! But they don’t, not even proper dental care which ties in directly to heart disease. I’m happy that you are successful in your journey thus far; but in 20 years when you’re pain is intractable, what are you going to do then? If the CDC has its way, you’ll be suffering & bedridden while you’re missing your children lives like millions of people like me are today. I wish you the best, and I hope in the future you’ll interview the veterans of this war for perspective.

  5. Terri Lewis at 7:13 pm

    As the national diaglogue continues about CDC’s newly proposed guidelines for opioid prescribing, it is important to note two things:
    (1) Every consumer is unique by virtue of the nature of their injurious event, response to illness, and genetic characteristics, and (2) Nobody should expect that what works for one person is generalizable to another.

    Allie, like many, found that the drugs offered to her produced negative results which became as burdensome to manage as the injury itself. Others do well on combinations of other drugs, integrative therapies, and more. Some will find that medical marijuana is exactly what the doctor should prescribe.

    Resist mightily the establishment effort to put a square peg into the round hole of treatment. Know your body, learn about your injury and treatment options, become an advocate for effective supports that are based on your needs and personal characteristics. Know your dose (whatever medicant it may be) , determine the level of daily functioning that is associated with an acceptable quality of life for you, and take charge of your outcomes.

    That is what person centered healthcare is about and it is the only measure of success that matters..

  6. Nicole at 4:13 pm

    Hi there!
    I’ve been dealing with CRPS for almost 7 years and I have wanted to see how it would be to get off all narcotics. About one year after I was diagnosed with CRPS I then became Celiac, with a gluten free diet I have managed those problems. Just recently I was diagnosed with Sleep Apnea and Central Sleep Apnea which I have been told it can be related to the opioids. I have done the same thing and look into a detox but they made me feel like such a drug addict that I decided not to. I would love any help you can give.

    Thanks so much!!

    Nicole

  7. Kelly Hudson at 7:02 am

    Hi Allie,
    I totally agree with your feelings on weaning from opioids. I couldn’t get my doc to wean me so I went cold turkey and quit them all, several years ago. Though the withdrawal was hell, I felt free! Unfortunately, the gut wrenching pain has come back with a vengeance and I’m back on Lyrica, Morphine Sulfate, Baclofen and Butrans patches. I’m at a total loss for the treatment of my RSD/CRPS but always open to others experiences and advice! Thank you for sharing your story for all of us trapped in the opioid world!

  8. Mark S Beretta at 4:24 pm

    Allie and All chronic pain sufferers ,
    When I was 28 years old I was in a roll over car accident , the roof collapsed down on top of my head and the man behind me stopped and said you rolled over 5 times. I was young , strong , wasn’t wearing my seat belt and walked away without a bruise. My car was totaled out . I remember the ER doctor saying that roof was on top of your head, you might have neck problems later in life. When I turned 43 the chronic pain started in my neck and I cant believe what I’ve been thru over the years. I now have a degenerative disc disease in my cervical spine that’s spreading down my thoracic spine with intractable pain. For the past 20 years I tried every pain medication known to man and methadone worked the best for my type chronic pain. I also had epidural injections , acupuncture, traction, you name it I tried it.

    This past March I lost my Pain Specialist and he is the 6th doctor I’ve lost over the years. The doctor that took over for him was rude didn’t care cut my medication in half and really set in motion what has led to today. I should call him and thank him for being rude.

    I decided I had enough , I had enough strange looks from pharmacist , enough worrying if I can get my in hand script filled, I had enough of the entire thing that involved pain management after 20 years. I took myself off of methadone and I don’t suggest anyone doing this on their own like I did , it was hell here on earth. I slowly tapered dropping off 3 mgs every 12 days and it was the worst thing I’ve ever been thru this past summer. I was at 20 mgs 3 times a day. At one time just a year ago it was 50 mgs 3 times a day. I never abused my medication for chronic pain. Methadone never made me high or any type of euphoria just pain relief or so I thought. It seems I became sensitive to the pain medication itself after this many years and didn’t realize it.

    During this taper process I went thru restless leg syndrome , but it wasn’t only in my legs it moved to my arms and shoulders then my chest , at one point just 3 weeks ago I couldn’t lay down , it felt like my entire body was being shaken , I truly thought I was going to die then it passed. Don’t do this on your own !!! get help from a addiction specialist.

    Now I’ve become more aware of what I put in my body , what I eat , I fast walk 3 miles 4 days a week . I lost 55 pounds this summer , don’t get me wrong I still have intractable pain but found different ways of keeping it under control . I just simply have to keep my hands and mind busy at all times and I’m not looking forward to winter time. I’m now 59 years old , never got married and am finally off of opiates , thank God.

    I think back and remembered what surgeons told me about intractable pain when surgery was not a option for me , they said you need to learn to live with it but had no clue what that meant and I took it wrong , I got offended . Now here I am 20 years later and learned how to live with intractable pain .

    I wish everyone well that’s thinking about letting go of opiates even if you have a medical condition requiring them.
    I still have bad days , but I no longer need to see a Pain Specialist , I learned how to live with chronic intractable pain , if I can do it , you can also do it.

    Much love to my fellow chronic pain sufferers .

  9. Chandra Welter at 7:34 am

    Thank you for your detailed reply, Allie.

    Your words seem to clearly imply that I am not educated in this topic, which is not the case. You emphatically state: “Everyone that has tapered off opioids says they feel like a different person and there IS something to that.”; and go on to ask how I know that I don’t have hyperalgesia??? You also suggest perhaps a taper would help me?

    How do you know that I haven’t already done ALL OF THESE THINGS. I’ve been a chronic pain for fourteen years. This is not new.

    The current state of pain management makes it nearly impossible to find another doctor – where are these mythical doctors? It seems to me that a large majority of pain patients are having MY EXACT experience; it is well publicised in the media.

    I also do not believe you truly had hyperalgesia. Hyperalgesia is diagnosed ONLY AFTER substantial increases to your opiod dose still do not control pain, & is usually only seen in patients using MORE THAN 65 GRAMS a day of morphine. That’s 6500mg. Do your research.

  10. Allie Haroutunian at 10:09 pm

    Hi Chandra,

    Thanks so much for reading my article and commenting…I love the chance to engage in dialogue others!

    Just to clarify briefly, my disease is Arachnoiditis; it’s awful and caused me to be bedridden for 3 years. I sometimes refer to it as an injury but it developed as the result of an injury acquired during surgery 3 years ago.

    I completely understand your frustrations regarding the doctor’s, however, not every doctor is like yours. Yes, many many play the prescription game (which I would question the legalities of and if he’s using dx as an excuse and what legal standing gives him the right to dramatically cut meds off cold-turkey from patients or stop prescribing…when doing so can cause a lot of problems like death) but thankfully I have not had an experience like that with my pain doctor. The wariness came from my doctor’s doubt that I had hyperalgesia and doubt that I was able to handle the process of titrating down due to the nature of my disease. I proved him wrong.

    I feel the best way to solve your (and other’s) doctor problems is to find a doctor who doesn’t share the same ideology or thought process of your current one. If, some practice medicine in that manner (yours) and some don’t (mine) — then I have to assume some discretion on the doctor’s part…right? Regardless, if he isn’t speaking a truth that resonates with you, find somebody who does because this is your body and it deserves the truth all the time. I’m sure you (and no other chronic pain sufferer) has time for being BS’ed.
    I sometimes feel we get so caught up in chasing around the problem — chasing around would-be solutions — that we don’t stop to react to things that don’t sit right with us. If you feel in your gut that your doctor is in error than listen to your instinct and give him the boot. You should move on to someone who can mesh..it’s a feeling. Follow it. I had to realize and act on the sense that the doctors and medications I’ve been using were not helping me. I wanted to know how much of the pain I feel is from the disease/injury and how much is man-made.

    What your doctor may be referring to about 3 years is the fact it takes the body 50% of the total time you’ve been taking opioids regularly to normalize itself on a cellular level where your brain is producing the proper amount of neurotransmitters, etc. But that is not to say you won’t feel a difference until then…you absolutely WILL notice a difference after the first month, hell maybe after the first 2 weeks. Everyone that has tapered off opioids says they feel like a different person and there IS something to that. Just because your doctor may be labeling you as such doesn’t make others results any less valid nor does it devalue the scientific significance of hyperalgesia and the role it plays in chronic pain. How do you really, for certain, know you don’t have hyperalgesia?

    All of this being said, if the medications you are on now help you, than that is so awesome you’re able to find relief enough for a quality filled life — stick with what works. Remember, this is all about options and finding relief no matter the method and is by no means a directive for all people to follow. Everyone is different and suffers differently but for those who want relief and aren’t finding it or aren’t satisfied — weaning off opioids is a great option. No one knows what the weaning off process will be for them, if it will work 100%, or if they have hyperalgesia until they’ve actually done it and gone through with it — but why not try it if there is no quality of life or are suffering miserably despite multiple efforts? Because if it can, in fact, provide relief then you’ve won. If it doesn’t provide relief than go back on the medications/look at other options…just like any method of pain relief ever tried.

    Hope this helps!

  11. April Dawn at 7:53 pm

    I have severe chronic pain of several kinds – both body wide and is specific places. I have Chronic Lyme Disease, Fibromyalgia and many more illnesses. I use both traditional western medicine and other forms of treatment – herbal remedies, supplements, massage – whatever works I will use. I use opioid – I have for several years now – IT WORKS – it gives me some increased quality of life – what does that mean? It allows me to think MORE clearly, to NOT be a zombie, to get out of bed and spend time with loved ones, to maybe even go to a spiritual activity once in a while. I have taken them for years – I have NOT needed to raise the amount – in fact – I chose to reduce the slow release morphine by half (over time) after I had found some other ways to help with pain treatment. I found that FOR ME the slow release morphine dosage was too high and was effecting my digestion poorly – so when I had the LUXERY of reducing my dosage (due to newly treatments such as massage, organic foods, reduced stress, that increased finances will bring), I choose to. But make no mistake, opioid medication is the only one that can and does give me this level of pain relief. It makes me more “me” because I am not so overwhelmed with pain I can have feelings. I am so sick of this huge brainwashing movement to make pain medication the great “evil”. I am in intelligent, kind, responsible, good person, and I take medically indicated pain medications. And this brings some quality back into my life. Before I became so sick I was a Mental Health Therapist, I donated my time and energy to people who couldn’t afford therapy, I lived a full life, I had dream and goals and plans. This was completely destroyed when I became so sick and experienced so much pain I could only lay in fetal position. It almost took my life because doctors were too busy with their prejudice and stereotypes and fears to prescribe pain medications. I am one of the more “lucky” ones. I was able to us my mind and be articulate enough to find a doctor that would listen and believe me – but it was very close. I almost gave up – because doctor after doctor told me that they couldn’t help me, and we all knew that was a lie. I am so grateful for my doctor -but the reason she was so open to my pain came at a VERY high price. A close relative of hers had a chronic pain disease, and ended up killing themselves while attempting to self-medicate – this would not have happened if one single doctor would have believed them and had the decency to treat them. So my doctor vowed to be that doctor and grew up to be one of the best doctors in the area and in her field. I would hope that we could learn from this, but instead people twist it around and blame the pain medications instead of seeing the reality of what pain will do to a person and a life.

  12. Liz at 12:41 pm

    Hey Allie! Thanks for sharing your experience. I went through a version of this – I have severe arthritis in my jaw and was in constant, relentless pain for a long time. I was prescribed everything but opioids – ibuprofen 800s (which led to an ulcer), high doses of Tramadol, amitriptyline, flexeril, norflex, baclofen, robaxin, soma, diazepam – until one doctor looked at my medication list and said they were no longer comfortable prescribing anything further for fear of serotonin syndrome. At that point, I started tapering off of everything except for diazepam as needed, and two years later, I feel like a different person. In retrospect, the side effects were staggering. Same as you, I would absolutely advise anybody to take a critical approach to prescriptions, and like you said, ask ask ask questions.

  13. Chandra Welter at 12:04 pm

    Wow. While I am glad that you’ve had a positive experience weaning off of your pain meds, your claim of hyperalgesia is off-base. Have you studied REAL hyperalgesia? Do you realize that this RARE condition is being used to deny treatment to pain patients that desperately need them – myself included. I have a hard time believing your Dr was wary about taking you off, esp given that you say your pain was from an old injury? Not a disease??
    I’m glad you’ve had this experience & that it has been positive for you. But that’s NOT the case for a majority of pain patients. We are having our meds denied & tapered for no reason other than this “hyperalgesia”. I’ve done the research – the proof is NOT there. My pain Dr is tapering me off meds that have enabled me to function – I have a severe collagen disorder similar to Ehlers-Danlos Syndrome. My pain Dr insists that after THREE YEARS OFF of my meds, I will suddenly be pain free! But I’ve gotta be off of them for three years first? What am I supposed to do for three years??? This is how they’re treating other patients.

  14. Allie Haroutunian at 11:33 am

    Hi Terri!
    Absolutely, I would love to help you, and explain the process, etc…please send me an email to my address: hart.allie@gmail.com and we can talk further!

    Thanks so much for your comment and I look forward to speaking with you

  15. Terri at 9:35 am

    This is so encouraging! I am at the place where I want to try and wean off my daily percocet for pain.
    Can you help me with this, how do I do it?
    Thank you!