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New Member- Young, In Chronic Pain, & Frustrated

2

Comments

  • 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

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
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  • 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.

    Jack
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  • 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. https://www.spine-health.com/forum/chronic-pain/letter-normals-a-person-chronic-pain

    take care.

    tracy



  • 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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