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Reached the end of my rope

I hit that point tonight. All I have done for the last couple hours is cry. I am so tired of hearing "if you would stretch" "if you would do this or that" "if you don't do this or that". My spouses don't understand that even when doing the exercises constantly my pain is through the roof. I'm 30. I got the crap end of the stick on genetics. Nobody else in my family has these problems. Its getting harder and harder to smile and pretend I am ok.


  • You don't need to smile & pretend everything's ok. It's NOT ok!!!! You HURT. You HURT physically, emotionally, spiritually. Chronic Pain sucks!! You're only human. I've been through stages where "I can't do this! I can't live like this!" is my daily mantra. Of course it's important to stay positive, have a plan, keep pushing for answers but it's also important to face your feelings & let it all out sometimes. I think if we're all honest here we've all been sobbing wrecks on occasion.
    I hope you're having a better day today. If this starts to become a regular thing seek help. There is so much evidence out there that chronic pain causes many changes in our bodies & brains. Anxiety & depression often go hand-in-hand with chronic pain. I think doctors should consider this more & treat chronic pain as a whole condition & not 'just' pain & it's cause.
    I'm glad you've found this site. It makes me feel better to be able to vent & talk to others who understand.
    Osteoarthritis & DDD.
  • Thanks. Today isn't much better. Work is taking its slow sweet time making a decision about getting me a different chair. All day I have wanted to break down. I am so tired of hearing "just stretch and it will be better". My partners don't understand that it doesn't help it makes things worse. Just so frustrated.
  • tannim28 said:
    Thanks. Today isn't much better. Work is taking its slow sweet time making a decision about getting me a different chair. All day I have wanted to break down. I am so tired of hearing "just stretch and it will be better". My partners don't understand that it doesn't help it makes things worse. Just so frustrated.
    Sorry to hear. I'm 30 and just had my fifth surgery, so trust me, I get it. Just try to keep busy. The worst thing you can do is think about it. I've been there. Still am until I get past this fusion.

    People who never experienced back pain will never fully comprehend living with it. That's just how it is.
  • Ugh! I know the frustration. I never really noticed how frustratingly slow the world moves until I was in 24/7 pain. A couple of years ago I broke down crying to my doc. Another med hadn't worked & he was saying "Let's try this. I'll slowly titrate you up....". I sobbed "Do you know how long a month is between appointments? It feels like a year for me!". He was great but that's not really the point is it?
    Growing up my Dad had terrible spine problems. He'd be bed ridden at times. I could never understand why the doctors couldn't help him. I'd nag him to go back & say this or say that...I must of driven him crazy!! Now I know for myself. People mean well but they just don't understand & they get frustrated too. They want us fixed. They want to live in an innocent world where you hurt, you go to the docs & everything is made better. Now even my Dad says things like "Go back to the doctor & tell him....." Hahaha! We're all the same. ;-)
    I was talking to a PM doc & he was saying that a number of his patients have terminal cancer...even he kind of whispered the word cancer! The human race can stand too much reality. I'm sure your partners mean well. I know it doesn't make things any less frustrating but if they accept that there isn't any simple fix like changing your diet, wearing a special bracelet or doing your stretches they're accepting that it can happen to anyone...it could happen to them!!

    I don't really have any advise or pearls of wisdom. I'm in the same boat & it sucks sometimes....sometimes it doesn't & they're the moments I try to treasure. Sometimes it all gets too much & I come here to vent & rage! Sometimes reading other posts & trying to help others & empathize helps a bit....
    Osteoarthritis & DDD.
  • It is always something. Now work is saying I need a new note from my doctor to get a new chair. I brought one note in 2 weeks ago but it didn't have enough details for corporate to buy a different chair. My specialist won't do a new note unless I make an appointment and it is $40 per appointment just for a piece of paper. My primary will fax the note for $10 without the appointment. More hoops to jump through. Grrrr.
  • dilaurodilauro ConnecticutPosts: 9,874
    You do not need to excuse any reason to smile, cry, or have various feelings.

    When you start to live with pain every day, it becomes harder and harder to do what you always used to do. You understand that limitations that you have, that you cant do this and that... But, for others around you its not so easy. They may not see any reason why you cant do it.

    Its very difficult to go through all the physical pain, but when you start to add on the emotional pain, that makes it so much harder.
    You want your spouse to understand. You are not trying to get away with anything, but you just cant do things. How to get your spouse to realize that? The only way that works, is one on one true and open communications. No arguments, no, IF you did this, I would do that, etc.

    You understand what you are going through.. But I would bet that your spouse does not. They dont feel the pain, the discomfort you are going through. What they see is a diminished person, someone who used to do so much and now they cant. Its hard for them to understand that. There is no magic for making all of that right.

    What is important , is for you to deal with the emotional aspects of your condition with your spouse and family. When that is better understood, I would bet that you have a long way to go before you reach the end of your rope.
    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
  • Thanks. Communication has always been a big part of our relationship. My husband has been with me for almost 9 years. Our wife has been with us for 3 years now. James has been a part of a lot of my back issues. Melinda has been with us since just after my first surgery. It is hard to get them to understand what my body can and cannot do is different from what doctors are saying I should be able to do. I am a different person than the emergency room doctor with a bad disc. It's just annoying when your spouses go "they do it, so you should too".
  • Tannim. I'm very fortunate with my doc (not so much in my personal life!) it took a long time to build our relationship but now he writes 3 months of prescriptions at a time so I don't even have to pay for monthly visits. I've known several others in the same situation. There was a member here who was a teacher & jumped through seemingly endless hoops to get his accommodations (including his chair!) but in the end everything was smooth. Know what I mean? It takes a while to settle into a chronic pain life. I'm just shining a light at the end of the tunnel! ;-)

    In your situation I bet (I hope!) that you have better communication than most. I can't imagine an alternative life style working any other way long term. Have you read "Letter to Normals" & "Spoon Theory"? (they're posted on the chronic pain forum) maybe reading those with your partners, or even sharing other parts of the forum, could help to educate them. We are all different! I can be guilty of being 'over positive' at times. Giving the impression that if you 'just' do all the elements of 'The Blend' (All the different things we use to manage pain, stretches etc) everything will be ok. I do it ALL & I still have times that I'm a frustrated, depressed, sobbing wreck!!
    Osteoarthritis & DDD.
  • Our communication is usually pretty good. The spoon theory and letter to normals are very good referrence points. I have shown them to my partners. Right now I have an appointment with a pain management doctor in August. I don't see my primary doctor until later this month. Right now I am off of my pain meds and the weather in north Florida right is driving me crazy. It is a combination of things right now.
  • gfishggfish Pittsburgh PAPosts: 160
    You have to have the pain to fully understand how bad it hurts. I had a 7 level T4-T10 fusion. Cant tell how many times I have heard you need more exercise from my family. My wife does complain and said I should try harder. Or you dont look like it hurts. Another good one.. You better learn how to live with it, looks like your stuck this way. I away say.. You would not last one hour with my back. Some dont understand how bad it is. Everyone here does. We are here to share our pain.
    Greg fisher
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