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at what point did you realise that your illness was so bad?

strakerstraker Posts: 1,851
edited 06/11/2012 - 8:36 AM in Chronic Pain
my doctor asked me this one the other day ..what i tend to do when i visit him is write down how i am feeling and if there has been any changes since i last visited him .i said about 3 years ago .then asked why? he showed me a my 2 previous letter to him from me and i was shocked !! in 6 months i have gone from being able to swim 3 times a week /clean the car. walk the dog to being on my recliner all the time and having peeing and erection problems {hence the need to see the surgeons} ..i never thought at the age of 43 i would be in so much pain /dependant on opiate's and so disabled .when i was so fit befor the crash .i worked 10 hours a day for the largest alarm company in the world and i enjoyed it i was slim and healthy the bad back has robbed me of so much .including my first marriage career and loads of other stuff .i think the worst bit about a bad back is that it sound so ..innocent ..and that's why i think that people that don't have a bad back give us such a hard time ...its only when you read some of the posts on here you realise what a devastating effect a simple bad back has on peoples lives .


  • Hmm, I knew I was in trouble when after my back injury my leg started hurting. I realized it was BAD when I cried every day before,during, and after work from pain from doing the job I truly feel a calling towards(and that was with light duty.) I realized it was REALLY BAD when I had to ask my 12 year old son to help me put on a sports bra.
  • The first time I was at our mountain property for the weekend and came back from a short ride on The Blitz and about 2 hours later had such severe nerve pain, I thought I would die. I took about 5 advil and it didn't touch it. We had to go home and I had to go to the ER. Then I noticed anytime I walked too much, sat too long, ugh, and it got worse and worse. I agree, people who have never experienced nerve pain, have no clue what it is like. It does rob you of so many things and it is such crap. We had a weather change over the weekend and I laid on the couch most of sunday - which I HATE doing! I could pull my hair out, I want to be out doing soemthing in my garden, or brush my horse, anything but stuck in the house on the couch. What a sucky deal...
  • After I was diagnosed. Until then, I had 20+ years of being told I didn't have anything wrong with me.

    The meeting where Dr told me that he was wrong, and spent an hour talking about what it was and how sorry he was that he never thought of it. Well he was just trying to save himself from a beating from my cane.

    I was kind of in shock - "shoot - this is not going away", was my reaction.

    Now it remains all about trying to heal myself, even if it is so slow, I don't see any progress for months[and that is what it has been like this last few months]

    Cheers - David
  • you have my admiration for trying to heal yourself and i wish you well .having a long term health issue is awful the trouble is some people don't see a bad issue as a problem..>>>until it happens to them!!
  • post duplicated ..stupid laptop!!
  • I believe that we all live in egypt, as we tend to be in deeNile....(denial actually).

    I have had 5 surgeries, a cap placed in my right shoulder, a SCS implanted. Take Valium, Flexeril, Benedryl and Desipramine, and a mood stabilzer that I can never remember the name of, yet, in my mind it will all go away...

    I have had days, weeks, months that I knew I was screwed up but when things aren't so bad, I just let it all go and try and pretend I am ok.

    yeah, I'm ok....for now.

    I pray everyone here is, or will be soon.
  • Tony - PM - I have had 6 months of heck - check your box. David

    LOL - yeh Wrambler - denilee is it! On the other hand, I take no credit for improvements I have noticed this last 6 months and truthfully, I figured I was writing the last pages. Research with the brain is revealing that the brain can heal itself over time. If that is the case, then why not set the mind to work on fixing what is wrong with us. I am already stuck with this crap, I accept it, now I have to make the best of it, or fix it. My brain needs to work on something, fixing this may as well be one of those tasks. I have the time! WT heck else am I going to do? So I set my sub-conscious mind working away on fixing this and after months of noticing nothing, I notice looking back that things have changed.

    Just like - six months to a year ago - I was looking at the pile of doo-doo and going - shoot - that's a big pile of doo-doo - WTHeck am I going to do, give up[maybe then] For awhile I enertained that and then after wearing that jacket for awhile, it got really uncomfortable. It was not my normal attitude. My normal attitude was to fight this and after a down time, my will to try again came back and now 6 months later, I can say - yeh - it has changed. I may still have all of my problems, but I feel better! And I am willing to share that attitude and see if it helps just one more person! If so great, if not - oh well!

    Cheers - Edit to add some stuff
  • I knew for years before the doctors found my problem that I wasn't imagining my pain. The limping, the lack of relief with over the counter meds, and not getting a doctor to take my pain seriously.

    When I woke one morning and could not move my legs I knew something had gone seriously wrong. My doctor ordered bed rest until I could have an MRI 4 days later. 2 days after the MRI I got a phone call from a frantic doctor telling me I needed surgery ASAP. It was all downhill after that.

    Waking up from surgery with a numb left foot and numb right arm were key in my knowing things didn't go right. When I asked the surgeon about my foot and arm all he said was "OOPS". I knew I was doomed.

    I still tried to keep a positive attitude about my recovery and that I would be better. It has been 7 years and there are days when I still think that maybe one day even though my back still controls what I do and can't do, that one day I will at least have a better Quality of Life.

    I know I will never be pain free, but for me now all I want out of this ordeal is to be able to truly enjoy being a Grandmother to Madison. I want to take her to the park, stroll her around the zoo, or simply take her out to lunch without needed someone there to help me. I am 49, and my older siblings get around so much better than I do and some of them are much as 15 years my senior.

  • That's easy -- when I lost my job because of it. I have a great regard for pain as it pulled the rug out from under me both physcially and financially.

    But adapt we must to survive -- so I carry on!

  • It was when the pain in my feet and legs did not go away.
    I lived with it for about a year before I talked to my Doctor about it.(foot & leg pain)
    At that time I was being treated for heart failure so my Doctor did not really listen to me.
    I went about 2 more years with my savage pain under treated.
    I begged to be sent to a Pain Clinic!! I could no longer live with the pain...I was in agony, I no longer had a life, my business went down hill. I could no longer stay on my feet long enough to prepare my meals!! I was in bad trouble and I knew it and I needed help!!
    Since my fall all the pain is back, worse than ever now. My pain meds help very little so I am back to square one again. Only this time i have an injured rotory cuff to deal with along with the back, foot and leg pain....oh yes my bum knee too!!
    It's a nightmare folks.
    Patsy W
    Patsy W
  • dilaurodilauro ConnecticutPosts: 9,862
    my illness being so bad???
    I dont know, do I have bad problems?
    I am so much luckier than others
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • doctors and i thank my self lucky that i have a firm but caring doctor that know about pain and is not a pain in the arse about pain killers ..some of you have to almost beg to get pain relief ..i am disgusted! its a basic principle of a doctor to do no intentional harm and to relive suffering .i think that you are all wonderful people and putting up with the horrors of intractable pain every day takes special people not every one can do it .bless you all you are a wonderful bunch
  • It finally hit me on March 23, 2009 when a neurosurgeon I went to see for a second opinion explained what was going on and validated my pain. Then, the next reality check was when I was approved for social security disability the first time I applied. I heard it's really hard to get approved the 1st time. Then, recently I've been so busy that I really haven't noticed my pain as much and thought I was starting to get better, then I brushed my teeth and got stuck in that bent over position again. At 31 I never expected to be in this much pain and still no answers to the cause even after surgey.

    I can only suggest that we all hold our heads up high and try to think of positive things in our life. Somedays are harder than others to find positives. I'm very greatful that I have such a great, understanding and supportive group of friends here on SH to help pick me up when I am at my lowest. I try to repay the favor when I can.
  • What an interesting question. I think my first inkling of trouble was in May 2008 when my back locked-up like quasi-modo and I've been like that ever since-apart from 2 ESI's which gave me a couple of hours of standing upright again. Its amazing how much floor covering I've seen whilst staggering around, now I have a wheelchair but the pain levels have increased to where the only outings are to medical places. If I let myself think about what was my life and compare to now, it's too sad,and I'm crying with the helplessness but have seen a top surgeon last week and he has given me hope that there is something to start me on the road to improvement.So long as we have hope in any aspect of life I will keep trying to regain more mobility, pain control and becoming a better person. Good question to stretch my brain, thank you. Hugs n' Loves - Paula
  • Right now....My husband and Mother are hounding me to move up my surgery date (Jan 2010) and I think they may be right.

    I weeded in the garden for 15 minutes and am suffering dearly for it. Driving more than 10 minutes is causing horrible pain, which is new.

    Also, after/while I walked my dog last night, not only did my back hurt but I had pain shooting down both legs, to the knees (also new). I have been spending more and more time on my laptop and recliner.

    For me it seems that my symptoms are rapidly increasing and there is no denying it. Time to look The Beast in the eyes and kick its butt!!
  • I meant to mention that I was not "boo-hooing" for me, just stating the facts.
    Ron said it very well, there can be so many bigger problems out there to deal with, my situation pales in comparison to what many others have to go through.
  • I realized how bad I am when I saw my Post Laminectomy Syndrome diagnosis checked off on a medical form. I sorta knew but I too resided in Egypt ;) for a long time (that's funny Wrambler). I found myself passing the days in bed; despite all the meds I'm on, I haven't had a pain free minute ever since my back problems started. I also had an epiphany when I was told my nerve damage is irreversible and permanent. This means that my legs won't ever be the same again and I'll keep hobbling around with my cane because of the weakness. Yes, this felt like a big gut check for me.

    I know there are worse things in this world and that I must keep on living my life however difficult it is. Chronic back pain alone isn't life-threatening so I'll be sticking around for a very long time.
  • i understand that permanent nerve damage thing and not a pain free day ..its the pits ! take care my friend.one of my long time no see friends came around to my house yesterday {i have not seen him for 10 years!} and i was out in the back yard as you call it ! having a fag as i cal them and he gave me a lecture on smoking .my response was to him saying that it will shorted my life .i said that i did not want to live until i was 80 with this pain and with the drugs i take ..do me a favor i will be lucky to hit 60!! {and he is a heavy drinker!~}
  • i understand that permanent nerve damage thing and not a pain free day ..its the pits ! take care my friend.one of my long time no see friends came around to my house yesterday {i have not seen him for 10 years!} and i was out in the back yard as you call it ! having a fag as i cal them and he gave me a lecture on smoking .my response was to him saying that it will shorted my life .i said that i did not want to live until i was 80 with this pain and with the drugs i take ..do me a favor i will be lucky to hit 60!! {and he is a heavy drinker!~}
  • I hear what you say...who'd want to look forward to another 40-50 years of agonizing pain? I sure hope in the near future that there will be medical advances that will drastically cut down our pain and make things more bearable for us. Til then, hang tough my friend
  • was during an eye exam, about 7 months after my fusion. My blood pressures have always been 90/60 my whole life, but this past year it goes up to 130-140/90s when the pain is bad. When the eye doctor told me he saw the affects of the high blood pressure in my arteries in my eyes - that freaked me and made me accept I needed more help with pain management.The pain was doing as much damage to my body as it was to my mind & soul. I probably am in Egypt with some of you too - I still am holding on that I'm going to get better and go back to my "prior" life, when I should do the mourning/grief & let it go thing.
  • What's rediculous is going to the ER when your dr is unable to see u for whatever reason and you go in, not wanting a prescription becuz you already have one just in need of a shot in the booty to get some kinda relief from the pain that is so savage you could think of better things like breaking an arm just to take your mind off the constant crippling pain in your neck and back..... But that's too much to ask for and the dumb dr in the ER doesn't even examine you... Then after waiting forever and you get back in a room and thinking all I need is a shot to just breakthrough this crappiness!! And all he wants to do is give you a prescription, again remember you already have the strong but not strong enough for this crazy flareup Meds, and he wants you to try something less effective than what u already have. Tell me the logic in that? So then u have to wait anyhoo after all that crap to see your dr the next day, to get shots into the areas of pain just to numb it. Get enough relief at least for a day or two to get some rest and your mind calmed back down from where the pain was so bad you could go postal on someone if someone just didn't do 'SOMETHING' to just give me a break already!! K, end ranting.. It's been a horrible week. Yeah, thank god for the ones of you in pain that it's not this severe... I wouldn't wish it on no one!
  • How are you suppose to live through this torcher for another 30 years when the last 30 have been nothing but straight downhill??? I am scared to get old if I feel like this at 38. who wouldn't be if they had nothing but hard core chronic misery to look forward to. Sheeesh!! It's tough, and you have to struggle daily for the any relief u can get. You welcome any relief u can get!!
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