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New Member- Young, In Chronic Pain, & Frustrated

XCSwimmer90XXCSwimmer90 Posts: 20
edited 06/11/2012 - 9:00 AM in Chronic Pain
Hi Everyone,

This is my first post here. I am 21 years old and have been in chronic pain for the past 5. When I was in High School I was extremely active- soccer in the fall, swimming + skiing in the winter, lacrosse in the summer, and a combination of all these (aside from skiing), in the summer. I'm not really sure how the pain started, but it progressed, becoming worse in worse, starting in my sophomore year. In my junior year I quit lacrosse. Senior year I stopped playing soccer, despite the fact I was one of the best players on the team. I continued to swim and excelled in competition, but the pain still persisted and still does to this day.

The pain exists in my upper, mid, and lower back. I have tons of knots and spasms. A normal day I consider a 5/10. Some days I feel completely incapacitated in pain. I can't sit or stand for more than 10 minutes without feeling extremely uncomfortable.

I've had x-rays, MRI's, a bone scan. I've seen numerous doctors, including specialists. I've tried a host of medications - NSAIDs (ibuprofen, naproxen, meloxicam, nabumetone), Muscle Relaxants (Cyclobenzaprine, Zanaflex), Lidocaine Patches, Nortriptyline, and Lyrica. Nothing has helped. I've had blood tests, been to multiple PT's (that just made the pain worse), and chiropractors (that gave me 20 minutes of relief- but in the big picture made the rest of the day worse). I've had trigger point injections, the electrical stimulation, and massages with no luck. I've also been educated with the "Alexander Technique" - basically postural education.

The doctor I'm seeing now wants to try me on Cymbalta, however I'm not thrilled about taking it. I'm concerned about the side effects, long term use, the stigma, and the efficacy. It doesn't seem to be the most proven drug and it just passed the FDA's approval for the pain indication.

I guess my biggest problem other than the pain and coping with it, is my frustration. Every time I see the doctor I feel like I am wasting time. When you're in as much pain as I am, time is precious. Another day in pain is another day without relief, another day to potentially suck very badly. The answer is always a month away- referrals, next appointments, trying medication for a month, etc. I feel like the answer is never there and there will never be any. After so many years and failures, and a lack of management, I feel trapped. I used to be a much happier person. Sure, I put on a smile and pretend to be the same person I was. Inside I just feel like this problem is tearing me apart within.

My parents for some reason are not supportive either in my quest to get pain relief. I don't think they understand the amount of pain I am in or how greatly it affects me, even if I explain it to them in tears. I think they see an inability to cope with pain as a moral weakness. They are not ones to take pain killers or really any "unnecessary" medications in general. If I bring up the topic they usually ignore it or quickly change subjects. They've been very involved parents though- always pushing me to be a good person and to excel academically and in sports. Their paying for my private and college education as well as my 2 sisters. To put it simply, money is no object to them so I don't see them concerned with the medical costs associated with my treatments. Maybe they're just not good at showing compassion? It's not that I don't think they care, maybe it's just that they don't show it or understand it. It bothers me nonetheless.

I just want it all to stop. I don't want to deal with the pain or frustration associated with the doctors. The frustration at this point, is almost as bad as the pain. No one can diagnose my problem, and therefore no one wants to treat it. I've had to push my doctors along to make any effort. After all, a 21 year old shouldn't be in pain.



  • XCSwimmer,

    Sorry to hear what you are experiencing and know all of us here understand our spines can be challenging and sure create road-blocks in enjoying life, sports, hobbies, some of us more than others.

    I'm sorry for the misunderstanding that comes from your parents in not truly knowing the challenge you are having with pain and where you are in needing support and resolution.

    You mentioned MRI was done and that you have been on the gamut of meds. Was wondering if the MRI was assessed and reviewed within you and your parents? What did it show?

    There are options for getting treatment specifically to resolve pain beyond medication. Please know your spine needs to be understood, evaluated and I would highly recommend you drawing your parents in to talking over a plan for working with an spine doctor and in assessing where the source of pain is coming from.

    We are a great group here all coming together to support one another on the journey and challenges of pain, surgery, treatments, although we don't and can't begin to diagnose, we are understanding and can certainly be supportive to you in what you are experiencing - - and to make sure you are not alone in your pain !

    Please know we care and most of us have had a journey of pain that demands focus and treatment, as well as compassion and understanding - - you will find all of that here !

    Please know it can get better ....see yourself finding a path and getting a plan of treatment that will work, possibly other tests a different doctor than who is treating now. A new assessment and view of your case...

    Much is being done in spine treatment, treatment of pain, specialists, doctors and whole departments :) It doesn't have to be a challenge you face alone !

  • XCSwimmer, I have an almost identical story. Waterskiing accident at 19yrs old and pain severe and chronic by 23, spine surgery by 26, 33 now. Hugely unsupportive parents, frustrated w/ Dr.'s. Saw 30+ specialists, $750,000+ in treatments. Over 50 different medications in over 90 different doses.

    I lived from appointment to appointment too and ended up running out of things to do. 17 18wk rounds of PT. I can give you any specific questions you may have. It would take me many many pages to list everything that happened. I have heard that 'I'm to young to be in this much pain' more times than I care to count. The medical system's 'it sucks to be you' and 'good luck with all that' and 'you should really try to not take meds' stance on young people being in chronic pain was pretty infuriating to me and probably to you too.

    It also took years to get even a plausible diagnosis of what was causing my upper back pain. The low back was a badly ruptured L5/S1 that was replaced with an artificial disc in 2005. Upper back was a laberal tear in the right rear shoulder that was not seen on over 3 MRI's and 1 CT Scan. Surgeon says he sees it in only three patients per year out of thousands.

    I am rushed for time right now so I am leaving much out. Send me a private message if there is anything I can do to help.
  • Thanks for the support everyone. I called my doctor today to talk about switching my medications. She is on vacation until next Monday. WHY does stuff like this always happen to me?

    I also forgot to mention that most bothersome thing of all- that I have no diagnosis. Despite the plethora of testing I've had, there has been no conclusive evidence of anything wrong. I have an unfused vertebrate in my lower back, but apparently that's not an issue.

    I'm just physically and mentally exhausted from all of this.

    It annoys me when people try to tell me things like "maybe you should work out more" - guess what, three years ago I used to swim 10,000 yards, 6 days a week. That is an incredible amount of swimming and I was extremely toned. Or "You have a really hectic life- it's probably stress" - yes I do have a lot of stress, but who doesn't. I have found no correlation whatsoever to my stress level and my back pain. Even if it was "all in my head", so to speak, then what? It's still pain, and technically all pain exists as a mental process.
  • Hey there:

    We all understand the frustration and the stigmas. I've had my share. I too am a relative young chronic pain sufferer. Was injured at 18 in a horseback riding incident, at 24 started doctoring for pain much life you describe. I felt like doctors shoved opiates at me just to shut me up, but the pain was incredible.

    Eventually I've found ways to cope. At 32 years old, I'm on muscle relaxers (Robaxin) use a TENS unit and heat on my lower back, and take way too many NSAIDS. It keeps the pain in check, but rarely do I have a day where I don't hurt at some level.

    Getting set to try cortisone, yet again. (It only worked one time before.)

    Know this. You're not alone. It meant a lot to me to find this forum and finally have a group of people that didn't think I was whining everytime I talked about my pain and searching for solutions.

    Good luck, and never give up hope.
  • Yea I was 24 and realized doctors know much less than I expected. When you are trying to find something that does not just stick out it is a night mare, that is why you have to do your own reasearch and push these doctors to give you answers vs. just throwing meds with no diagnosis. What are your diag. or symptoms, I had good luck with cymbalta and sciatica. Got right off after sciatica left, dr. ordered. It is the hardest thing to have people insult you with things like you are under stress, well lose the life you know and see if you are not under stress. It is an insult to sufferers. There are a million gadgets for back pain, a million diagnosis, a million different doctor opinions. Honestly not to sound cocky but with my hip and my spine I bet I was 50% responsible for getting my diagnosis, but I was very educated about thoracic spine and disorders. You almost have to do this if you have something that is not obvious, it is a game of elimination. Doc sends you to get inj, does not work, go to rhumatologist, nothing wrong, go to etc. 3 years later your back in dr. office saying I think it is still coming from small herniation.
    I was very in shape myself, not as much as you , but very healthy and exercise, yoga etc. Did nothing for pain.
    You are your best advocate, cause everyone here has dealth with horror stories of misdiagnosis. And many were great doctors, mistakes happen. Pursue your diagnosis with tenacity you swam, its the only way to get anywhere. Try everything they suggest asking why this treatment but ask for answers if it does not work. Ask your doctor to explain what he thinks is going on then do your due dilegence. No one deserves this back pain at any age. You sound like you have great reasources to keep pushing ahead. Dont sit on sidelines or it will take a lifetime to get diagnosis. Assuming you dont have one already, which it sounds like.
    Remember you live in your body and feel the pain and know its real. You know your body best, and esp. being an athlete this is even more for you as you have trained for years.
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • Thanks for the support everyone. It's really helpful and inspiring to hear from other people who are in a similar situation.

    I've discovered the fact that a lot of doctors suck (for a lack of a better term). I'm just so tried of having to work. To push them along. To ask them questions and not get an answer, only to ask it until they give me a straight answer. I'm tired of trying to get in contact with the doctor and dealing with stupid ignorant nurses (no offense, some are great, but a lot are annoying). I'm a 4th year pharmD (doctor of pharmacy) major so I know a lot about all sorts of drugs. When I try to have an educated conversation with a nurse they won't do it/don't listen. When I tell them I don't want cyclobenzaprine 1. because i've had it before 2. because it knocks me out 3. because it has a 14 hour half life so I'm still groggy the next day after 10 hours of sleep 4. because it doesn't work 5. it's basically a modified tricyclic antidepressant, so it's going to have all the side effects of a 1st generation TCA that made them so unpopular and that made SSRI's like Prozac gods greatest gift to depression meds. What do I end up with - another Rx for cyclobenzaprine.

    I'm a very good listener, so when people don't listen to me, I get very frustrated. I'm tired of repeating the same treatments, KNOWING they won't work, but just having to go along with the doctors games. Honestly, I don't know what will work. Lyrica helped slightly, but my insurance won't cover it because I'm not diagnosed as having fibro, seizures, or neuropathic pain. The pharmD from the insurance company suggest vicodin, percocet, or some opiate. I told him 1. I'm 21 with idiopathic back pain, the chances of me getting opiates are quite slim 2. I am a full time student, I cannot afford to be in a fog all day 3. This is going to be a lifelong issue with me and I cannot take opiates to solve this. With tolerance and dependency issues, it's not the way I want to spend my life. I know what it's like to take them, for extended periods of times. I feel nauseous a lot on them and get very easily agitated. After a few days the sedation wears off, but my memory is definitely affected by them.

    I am looking for 3 things:
    1) A real diagnosis - not "neuromuscular dysfunction", not "myfascial pain"
    2) Some type of effective physical treatment (i.e. PT) that is gentle enough not to exacerbate the pain
    3) Some type of medicine to help ease the pain without affecting my life/consious state. Despite I'm studying for my pharmD, I don't like medications. I don't like taking them. I don't like remembering to take them. I don't like side effects. But I've come to realize I don't think I can do this without meds, as one doctor suggested.
  • Try a second opinion swimmer.....
  • I had so many MRI's done over the years. One doctor basically told me this was all in my head and that I was no different than anyone else when it came to spinal degeneration. I cannot begin to tell you the amount of doctors I've seen. Some have thought I was a drug seeker, only after opiates. I cannot begin to tell you how many times I left those doctor's visits livid.

    Now almost 8 years later I have a doctor actually sit down with me and go over the MRI's with me, and "show" me that the problem actually is disc herniation. You can see it right there on the MRI's!

    In my case Robaxin does work. Have a prescription for Lyrica but can't afford it. Neurotin worked for sciatic nerve pain but gave me some incredibly aweful side effects.

    I know what you mean about being in college f/t. I'm convinced I failed one year because I was on oxycodone and Tramadol. These drugs take away pain but don't leave you functional.

    Keep harassing doctors. Like one person here said, you almost have to self diagnose. I go in now and say, "I'd like to try this," or, "I think this is the problem." Doctors tend to become impersonal, at least in my experience. I don't think they see the person behind the pain.
  • It literally took the 30th opinion to diagnose my problems. I had two acute areas of injury from a 46mph barefoot waterski crash. Broken L5 and ruptured L5/S1, L4/L5, and L3/L4. It also separated both shoulders and tore the labrum on the right, in the rear. They knew the shoulders were dislocated but the laberal tear went unseen on many MRI's and a CT Scan. All of these things were repaird via surgery but I had massive T5 level pain. I had given up on trying to diagnosis it but this guy that I picked out of the phone book spent over an hour at our initial appointment, went through every one of my 80+ films and read every lab report. He figured out what was going on and was able to adjust my treatment accordingly. One thing that was very surprising to me was that he told me NOT to swim. 3yrs later and things are better than anyone ever thought possible.

    I know the "don't give up" loses meaning after years but please, don't give up. It only takes one breakthrough. Good luck and don't give up!
  • I really feel like giving up seeking treatment. The stress of it all does not help my situation.

    I feel like I've exhausted almost every avenue. The only thing to do now is to start over and try everything over again. Maybe that's what I need to do if I want a real diagnosis.
  • Sadly, you are right. I started over many times and some of the best ideas came from random people. Physical therapists, even nurses. People that said they had a family member or knew of another person that had some bizarre symptom. Thousands of these comments/ideas led to me trying a couple hundred new avenues that led to a dozen invaluable changes that fixed 95% of my pain. It took 10yrs of frustration to get there but it is better than anyone said it could be and is still improving.

    Just take it day by day and don't accept any prognosis as final. Even if a bad prognosis it true, not trying to beat it has devastating on your body and mind. The only thing worse than seeing someone who is crippled by chronic pain is seeing someone who has accepted it as their fate. They seem to deteriorate so incredibly fast.
  • Hi Swimmer :H ,

    I have read over all of your post and the comments and decided to stick my two cents worth in here. I keep reading your plight and know that every single one of us here probably feels the same way at one time or another. No quick answers. It is so very difficult to go from being able to get up and do what you want to, when you want to, and how you want to without thinking twice. Then a page is turned and "Boom" it's not like that anymore. Please stop beating up yourself. It is not your fault. It took longer for you to become this way than just overnight, so it will take longer to get you back to some kind of functional normal than overnight. Use that negative energy for positive targets. We ALL know it is hard. That's why we are here ... to listen and to support.

    Family and loved ones are probably coping with this worse that you are. They just have their own unexplainable way of dealing with it.

    My chronic pain issues are with my cervical spine. I have been seeing a pain mgmt doc for almost 2 years. Since April 2010 I have gone through various procedures and MRIs (see Rassy's Story below) while trying to find a medication combination as well. My pain level was a constant 6 through 10+ and I wanted to scream every day ~X( . Only within the past 3 months has the combination I am on now afforded me relief to pain levels of 2-3. I am not groggy, or feel doppy, or drug hungover. A little sleepy sometimes. I STILL have my bad days, as we all do. For those days it's Vicodin ES, icepacks to my neck, and rest. It takes your body some time to adapt to these new chemicals being introduced into it. I did have some issues when first getting this combo correct. The biggest one was that the pain decreased dramatically, so I thought I would give my body some time to adapt. So far so good :SS . Hang in there and stay strong. We are ALL here when you need us!

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
  • I'm so sorry you're so young and in such a difficult situation with pain and no support, no diagnosis, no real help. We've been there also. My son had to quit football his sophmore year and baseball his senior year. His dreams of playing college ball went down the drain. Losing your ability to play sports can be HEARTBREAKING. He spent the last 3 years in awful physical and deep dark emotional pain. Just in case this helps: The best resources and help/diagnosis, etc. we got was from a well-established spine facility (that only treats back issues) & a VERY experienced doctor there. We did end up going to a Pain Management doctor who has helped quite a bit - lots of different interventions, not just medication. We also learned to never just leave a message with a doctor's office - I just keep calling back - I'm sure the folks there hate it, but I always get in touch with someone the same day that way. I also make friends with the scheduling person and ask them if I can call back every day to check to see if they have a cancellation - I'm really nice (catch more flies with sugar) and have gotten into places months earlier that originally scheduled many times. I know it's so frustrating and that you just get really sick of talking to people who don't understand what you're going through. The people here do understand and are here to help support you any way they can. We've gotten such great information and suggestions here. Just in case it gives you a little hope. With the help of his doctors and interventions, my son is now playing baseball again. He isn't completely free of pain, but he is functioning so much better in every area of his life. Sending best wishes to you.
  • Thanks! I'm really sorry to hear about your son's injury, but it sounds like he's making progress and doing well if he can play basketball again.

    It's also great that you're involved in his treatment. My mom used to be active in my medical affairs, but now she's not at all. I know that I'm 21 now, so thats a little different, but I'll see the doctor and she won't even ask how it went. I called my mom the other day and mentioned that my back hurt and she said "ok, well there's nothing I can do about it, I have to go". I don't want to make my parents out to be deadbeats, they're not at all. They're educated, very successful and have been very involved in every other aspect of my life. I don't know if they're tired of dealing about it, avoiding the thought of it, or just think I'm making it up for attention or to try and get out of things- which I never do. Infact, I stopped talking to them about my back pain for 3 years along with stopping treatment because they simply were not supportive. Talking about it always just turned into a fight with them saying I never followed doctors orders, which was NOT true at all. I followed them to a T. Because I did what the doctor said and didn't get better, it must be MY fault.

    I took a very long break from swimming (about 8 months) and about 2 weeks ago started again. Getting back into shape is tough. Swimming makes me feel a little better, but a couple hours later after the muscles tighten up, the pain is back and worse. It's not the regular pain of getting back in shape (I have that too), but the back pain is just really bad right now. Bad enough that every day I am tempted to stop. Every physical activity I do makes it worse, swimming is the least of all evils and I do think being in better shape might slightly improve my pain level and boost my mood a little. I hate being inactive.

    I told my mom a couple months ago that the new doctor I'm seeing is my last hope. I'm at the end of the line. There's no more track but the train will keep going unless something is done. I feel like if this fails I won't be able to cope with going through the stress of finding a new doctors and trying out new treatments. It don't mean that in a suicidal sense or anything along those lines at all, I love every other aspect of my life except for the pain. I just feel like if this doesn't work out, I'm just going to give up on seeking further treatment and the quality of the rest of my life is just gonna suck (unless some miracle happens- but I'm not too optimistic about that).

    The best I can do is try not to think about it. I think that's how I've been making it through most of my days and the past 5-6 years. The problem is, I can't do this forever.

    I need this doctor to come back from vacation. I'm really not sure what she'll be able to do to help me in the long run though. My first appointment made me feel a little iffy. I don't think any of my physicians understand how I feel. I think part of it may be because I'm not one to talk about my emotions and I don't discuss how much this problem has effected me. I think if I did I'd probably start to cry haha. I'm really good at putting on a smile. A lot of my close friends aren't even aware of the problem.

    I guess I will talk to her about starting over from the beginning since a lot of the avenues have already been exhausted. My last MRI was 5-6 years ago and maybe my X-rays could use a closer look. I just can't fathom going through all of this over again.

    I appreciate all the support you guys have given me though. Just hearing your stories and comments gives me a little hope everyday, so thanks.

  • My accident was at 20 and my pain became chronic and debilitating at 23. My MRIs clearly showed the main ruptured L5/S1 called it Degenerative Disc Disease. It was even obvious for me, a non medical person, to see on the films. It could not have been more clear.

    My mother had been critical off the pain all the way up to that point and I thought I could finally appease her with that diagnosis. Upon telling her, she responded that the report was wrong and I was too young to have that condition. Two years later I was the 12th person in the country (and the 2nd youngest) to have an Artificial Disc Replacement. She never conceded that she was wrong about anything and things have only gotten worse after the remaining surgeries.

    I gave her some leeway when my parents were paying for my college but by the time of this diagnosis, I was 23 and in the corporate workforce, i.e. on my own insurance. Easier said than done but it is not her business anymore and I do not share any info with her. Now I try to keep any conversations with her news, weather, and sports.

    I would never claim that my relationship with my family is normal but in my experience, there was no appeasing her and all attempts made things worse. If I could go back, I would not share nearly as much information with her.

    Good luck.

  • My chronic issues started when I was just a couple of years older than you. I lost count of the number of doctors and specialists I saw over the years, though I have kept a history on my computer, and I understand your frustration. I had many, many x-rays, bone scans, MRIs, etc., and there was always 'something' that would show up, but for years nobody could put a name to it. Eventually I saw a rheumatologist who came to the diagnosis of fibromyalgia ( I knew I also had myofascial pain syndrome because of my symptoms) and over the years several other diagnoses were made, but it took a lot of perseverance on my part.

    I know you don't want to hear that it is 'myofascial pain', but that pain is VERY real, and I can attest to the fact that the pain and spasms get worse after certain types of exercise, when there is added stress in our lives, and when there are weather changes. I have been on almost every medication you have listed and done more treatments than you can shake a stick at. I am now 52 and will NOT give up finding treatment options, because sometimes relief, even if only temporary, comes with the treatment, supplement or medication that you least expect. Has anyone ever tried trigger point injections to help relieve the spasms? Have you considered something like yoga to work on stretching all those muscles to see if you can release some of the tightness and spasms that way? There are also supplements that help with muscle issues, such as high doses of magnesium with malic acid; in Canada it's called Myalgia-X.

    I have been very lucky to have the support of my family, but I have also had one of my parents voice their 'concern' when I have had an especially hard time of it and have had to use my breakthrough meds. Unfortunately, that's what is necessary to break the cycle, so I do what I have to. Sometimes the person who is voicing those concerns is feeling totally helpless, and that is how they deal with it. They want to help 'fix' you, but they can't, plain and simple.

    Have you seen a rheumatologist at all? It might be worthwhile, if it's a possibility.

    Good luck, and keep up the fight!! I know how frustrating it is to give up all the things in life you love to do....you just have to find OTHER things that don't irritate your body so much.

    Here is something I posted a few years ago; it says it all when it comes to living with chronic conditions. http://www.spine-health.com/forum/chronic-pain/letter-normals-a-person-chronic-pain

    Take care.


  • Hi!
    I hear you, altho my pain is not as bad as yours, I have not had a pain-free day since 2010 October.
    After my doctor extended my back (to examine if it hurts), I have had this chronic pain for more than a year now!
    I have a tiny protrusion in my back ever since he extended my back (he pulled my back while I was standing, and told me to tell him when it hurts--it actually didn't hurt much when he did it, but after a couple of minutes, I had a dull ache), but other doctors tell me not to worry about this protrusion, :s
    but how can i not worry about it if it was not there before?
    I also took MRI last year and I can clearly see that at my L5, my spinous process protrudes out a little bit more than the other ones, and it can be physically felt too...
    I think this is the cause of my pain, but no doctors are willing to take more time and look into it :( and this really frustrates me.
    what should i do? :((((( should i go see a chiropractor? but i'm very skeptical of "popping" the back

    and I use the university health system, and I've already talked with one of the doctors there, should I make another appointment with a different doctor and ask to examine my back again?
  • I wouldn't see a chiro if you have things bulging out of your back.

    What have the doctors said to you regarding the issue. That it's normal.

    You just have to be assertive when you talk to them. That's what I've learned if anything over the past 5 years. If they don't give you an answer, as them again. If you're not happy, let them know. There job is to take care of you. Don't be rude, just tell them what you expect.
  • I have seen many cases like yours. It sounds like your work up has been fairly extensive. There is no magic cure. Narcotics and NSAIDs don't work and usually make things worse. Cymbalta is sometimes effective, but rarely alone. Problems like yours often require a number of medications (three is the usual number) in combination with physical methods,such as yoga, massage and inversion therapy. As the pain gets better the goal is to wean you off of the meds.
  • sunnsuch27ssunnsuch27 CaliforniaPosts: 1
    Hi Jack83, my husband and I have been together for 10 yrs. Your story resonated with me. My husbands story sounds very similiar to yours.  His chronic low back pain (L5-S1 area) has been going on for the last 5 years.  We arent even 30 and our life feels like it has stopped.  We feel like he is headed towards needing a surgical opinion, how did you fare after your surgery in 2005?  Did it help your low back? Any advice?  Our stupid insurance is not approving our request for procedures (epidurals/injections) saying 'he isnt bad enough'.  Yet doctors are telling us to seek a surgeon. So jacked!!  Thanks for your response. 
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