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Another year of pain with no end in sight

Hello All,

Just about all ya'll know my history and stories.  Pain in the thoracic spine that no one wants to touch.  Since the last post I have seen 2 more surgeons that panned out to nothing.  Their diagnosis was arthritis and disc degeneration causing all the pain and nothing can be done to help me.

What I don't understand is how can a normal healthy 36 year old male not be able to stand up right after a short period of time walking around.  How can I be in so much pain doing laundry. 24 hours of thoracic pain and it's due to disc degeneration and arthritis? 

So that means this is all just going  to get worse every year.  So I figure by the time I hit 40 I will be in so much pain and won't be able to do anything because as the docs say, there is nothing that can be done.  What kind of life is that?? To know each year you lose more of your functions.  I am sorry but this is stupid.  All of the technology out there and the amazing things they can do but thoracic pain they can't do anything.

I've been having another issue that I don't know who to reach out to.  I continue to have nonstop spasms in my legs.  It's really bad at work because I hit my desk every time.  Sometimes my right arm will do it but more in my legs.  This isn't something I've always had but over the last month it is getting worse. It's so embarrassing to continue to have this happen.  What's really bad is when my right arm does it I always have something in my hand. At work I don't know how many times I've almost lost my mouse.  I've chucked my phone a few times.

I don't even know what could be causing these involuntary jerks.  I thought maybe because of my spinal cord stimulator but I'm not sure.  I have a pump refill appointment in 2 weeks so I'll ask them.  I already know they will say they aren't sure go see so and so.  

Has anyone ever had this happen before?  Did it get resolved?

On top of the uncontrollable jerks I have had a charly horse feeling in my right calf.  I've been stretching, using heat/ice and massage and it won't go away. I have had it for 2 weeks now.  What my wife read is it can be due to issues in my spine.  

I hate this, I hate it all!!! Sick of wasting my time seeing doc after doc to hear they can't do anything.  To then go back to the drawing board looking for another doc.  Pointless.

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Comments

  • Jbower, So sorry to hear you are having so many unresolved symptoms. I am being shuffled around between drs. trying to get my insurance to cover an mri for my neck and lumbar spine. I have had multiple symptoms of nerve compression and disc degeneration for 12 years. It’s time to update the mri and see what is going on. I hope you get some answers soon. I struggle with depression and anxiety, and I know it comes from pain and not knowing what is going on. Keep asking, your symptoms deserve attention and you and your wife need answers so you can get the right help. Good luck and keep us posted.

  • Jason,

    I am sorry you cannot find any answers.  I agree in the modern world you would think they would be able to figure this out for you.  I know this is of no consolation for you but for those of us who have had surgery there is no guarantee we will feel better.  I can say for myself having multi level fusion surgery did not help my pain. 

    Perhaps one day someone will figure our your situation.  Try not to give in to depression and despair.  Help may be just around the corner. 

    My prayers are with you

    God bless

    dale

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  • jbowerjbower wisconsin Posts: 158

    Thank you both.  I agree that surgery cannot guarantee relief or it can even make things worse.  So far all of mine has caused some other issues.  The spinal cord stimulator implant is what started all of my thoracic pain.  

    I would rather have my sciatic pain then my thoracic pain.  Especially since my sciatic pain in my right leg is nowhere as bad as it was before the stimulator.  But there was no way of knowing that then.

    Sometimes I wonder is a fusion would help because when my thoracic pain starts to get worse throughout the day the harder it is to stand.  It starts pushing me down and slump over.  It feels better to lay on the ground for a period of time before it feels a bit better.  I my mind I think a fusion would keep my upper back straight where it wouldn't get as painful.

    Another reason why I think that is I have a fitted upper back brace that I wear at times and while it doesn't take all the pain away it helps keep me up and straight where I don't start losing my posture from the pain.  Doe's that sound logical at all or is it in my head?

    Now the body spasms is something I have no clue how to fix because it just one day started and hasn't stopped since.

  • jbowerjbower wisconsin Posts: 158

    Oh today sucked so bad.  My wife had to take our older son to a clinical study he is in about the changes in the brain as he grows up. He is 12 now and started at 11. He likes it because he gets paid to do it.  Today's appointment was 6 hours though.

    So it was just me and our 5 year old son.  We cleaned the house and have been doing laundry and playing with legos.

    The cleaning went surprisingly well, it was the laundry part that did me in.  My thoracic pain continued  to get worse.  By the time I finally sat down I was physically drained.  It's only 7:30pm and I am exhausted and could go to bed.

    My wife and son come home and I ask here what she thought about the house being so clean?  What do you want a gold star? You always say that when you clean.  Yeah I do because I feel like I was able to help for once while she's gone. It is a big compliment for me.  And now my back is screaming.  

    I really wish she could feel what I feel for a day, then maybe she would understand.  And don't ask what comments came from the laundry.  This goes in the dryer and that instead of being hung up to air dry.  What does it matter? It's crap like that which ends up putting me in more of a depression state.  Why do I even bother?  It's stuff like that which makes me feel worthless.  I hate this, I hate it all and I want my life back....

    Something that will never happen, so what's the point...........

  • You might not want to hear this or you might say, yeah, he's right, you did something much more important today than cleaning the house of doing the laundry, you spent the whole day with your 5 year old, think about that, all in all, you had a pretty good day.

    Chip

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  • jbowerjbower wisconsin Posts: 158

    Thank you Chip, 

    I take it you are one of those people that can find the good no matter what the situation is.  I wish I could do that but you are right, I was able to spend the day with my little guy.  Thank you for taking the time to point that out to me.  I really do appreciate that.

  • Hi jbower, I do understand you're frustration. Going from doctor to doctor with no answers is depressing. I go through the same cycle. I do have to say that it really makes a huge difference when I intentionally think about it in a positive light. It's been scientifically proven that our bodies respond to the way we think. I don't do it perfectly but I know when I think about the "what ifs" all the time, I can get really depressed. When I think about what I can do and attempt to live in the day, I do SO much better. And when I focus on others, that helps too. I'll just bet the time you spent with your son was precious to him. I hope you take these comments in the way they were meant. It's so much easier to see other people's situations than our own sometimes, that's why we need each other. 

    Also have to say, if you know that your wife's reaction is generally negative and going to hurt just try not asking for awhile and see what happens. Sometimes we just set ourselves up. If you are going to clean the house, just do it because it needs to be done. We all need encouragement and support but for whatever reason I don't think your wife is the place to get it right now. Remember too that 6 hours at the hospital or clinic is no picnic either. 


    I do hope and pray you can find some help. I know for me, acceptance is half the battle. A day at a time, right? And we DO care. 

  • Jason,

    One of the hardest things about being in chronic pain is dealing with a spouse.  I have said this many times, people who have not experienced chronic pain cannot possibly understand how hard a life this really is. 

    Also I don't believe spouses fully understand how much it hurts the chronic pain patient when they say things such as your wife said.  I know what she said to you hurt you deeply. 

    All that being said I would like to give you some advice which just might land me in hot water with the moderators.  Forgive your wife for the things she said as coming from someone who does not live the life we do.  The mental harm you do to yourself by dwelling on this will eventually ruin your life.  Jason my faith is what saves me.  What I have learned from God has changed my life completely.  How to both give and express love and live a life centered in love gives me a peace which passes all understanding.  I will leave it at that for now as I know religion is not allowed on SH.  I would be happy to share how much my life has changed with anyone who cares to talk to me in private messages. 

    What you did by sacrificing your body to clean the house deserves applause. Good for you sir.  I do the exact same thing myself whenever possible.  When my wife wants to clean I am right there with her whenever humanly possible.  My wife sees what it does to me but I do earn her praise and respect for trying my best. 

    Another thing I would like to add Jason is never give up.  Keep trying to find answers from different drs.  Sooner or later you will come across a dr who will be able to help you.  Maybe not a complete cure but possibly a reduction in pain. 

    I will pray for you Jason and please know my faith has brought more joy to my life than anything I have ever done or tried.

    God bless

    dale

  • jbowerjbower wisconsin Posts: 158

    Thank you for the kind words joanne2 and Dale, I do appreciate it and I can see how I set myself up for a negative reaction.  Every time that happens I always think to myself what is the point.  Either I get the negative responses from helping out or I get it for not helping out.

    It happens so much that it does tear me down.  Do I wish I could go back to how it was and do tons of things around the house or fixing things, yes I do.  I have always been a handyman and not so much anymore because I physically can't.  36yrs old and I am lucky if I can finish the laundry.

    I work 10 hour days at my job as a Credit Analyst and by the time I come home I am exhausted.  And yes sometimes I fall asleep without knowing it.  God help me when that happens because I don't hear the end of it.  Things like that I always say I wish you could be in my shoes for one day.  Then you would be asking how in the world do I do it.

    One thing that stinks is when I hear not to give up that there is someone out there that can help.  I totally know it is meant in a good way, I understand that completely.  However, I don't think it will happen.  You can hear there is nothing we can do so many times before you give up.  I don't know what to do anymore.  

    I know I shouldn't be saying that and will there be a day I start trying again, yes there will be.  But for now I am done.  Mentally I cannot hear the doctors saying they can't help me anymore.  I have to step back and take a break from it all otherwise I am going to get deeper in my state of depression.  I can't let that happen.  Maybe someday it will happen and if it does it will be a long way down the road.

    The good thing is that we all have this website to share our stories and get things off our chest.  It does feel better to hear kind words from people you don't know.  Along with hearing others going through the same. If I didn't have this forum I am very afraid to think of what would have happened to me.

    So thank you to you all.

  • Jason,

    You have every right to feel the way you do.  It is not normal to be your age and in chronic pain.  I would consider myself lucky if I could work an eight or ten hour day at all.  I doubt I could even work two hours any longer.  Every one of us here probably feel just as you do if we are going to be honest. 

    I fought for a long time to find a great pain management dr to help me with my pain.  I am past looking for a cure but meds are available to help me get through my day.  I went to quite a few drs who's advice was to take advil or Tylenol and just make do.  Then we have the drs who say its all in your head and there is no reason for you to feel such pain.  One thing about it now, I have plenty of imaging to show herniated discs and canal stenosis so there is no way for them to say its in my head.  These words struck home to me last week at my pain management appointment.  My dr looked me right in the eye and said  "Dale you will never go off opiate pain meds"  My worst fear is the opiate crisis will cause me to lose my meds.  I don't even want to say my pain is worse than anyone here but I don't want to live my life in constant pain.  For those of you who live in pain with only OTC meds I salute you, I cant do it. 

    You might try to sit down and explain to your wife exactly how you feel and why you cant always help at the level she would prefer.  I hope she is the type of person to believe you about your pain.  If not--then heaven help her when something happens to her and she has to live as you do. 

    Don't worry though, all of us of like faith are praying for you.  I know for a fact there are many God reverencing people who visit this site.  I hope you feel better soon and find some answers to your pain.  Maybe leaving behind the attempts at a cure and focusing on pain management will give you some breathing space.

    God bless

    dale


  • Jason

    I really hesitated before writing that last night, I just wanted to remind you to look for the little joy's in life, for me, spending time with my boys was probably the greatest of those joy's when they were growing up. I know where you are at and it stinks, I had my first 2 lumbar surgeries at 23, the pain never completely went away, and I was angry about it all like you are, it's been 30+ years and several more surgeries since then, one of the things I have learned is to look for those little joy's, they are there but you have to look for them, if you don't, life will eat you up from the inside out.

    Take care

    Chip 

  • Jbower, I so agree with you and the thoracic area. I have pretty bad lumbar and cervical spine issues but they aint got jack ### on the thoracic. Every movement is the pits, it’s not meant to be painful to breath is it? Every arm movement, trying to enjoy a good hot coffee . But I do have two great distractions, my two 4 year old grandsons, when I have them I am so absorbed in making there days fun, we do lots of crafty stuff , they made awesome Christmas wreaths out of a gum branches . That  I do forget about me. But when they go home wholey dooley, but well worth the distraction.  Take care. Harpy

  • I hear and feel for you. Chronic pain has ruined my life. Had surgery October 2018, L5-S1 decompression and laminectomy, that surgery failed and I’m left with adhesive arachnoiditis and after many appts with dr, therapists, massage, acupuncture, etc. my quality of life is horrible. It’s ruining my marriage, what I can do with my kids, on long term disability from work and like you, still young, 43. 

    My wife this weekend is losing her patience, in fact telling me “ because of your pain you’re dying as a person, the person I fell in love with I don’t see anymore” she’s not willing to sacrifice her life anymore as our life together has been put on hold because of my health. I understand her frustration but her words hurt me so much. The love and support of family is so important when dealing with such pain. I’m losing hope and looks like my marriage. Trying to remain positive is slipping away.

    I’m booked in for hydrodissection in October but what the hell do I do in the meantime. I guess I’m replying to you to let you know your not alone and I’m here to chat when ever you need. I’m listening. Hang in there and know it’s alright to be pissed off at your current situation. 

    Joe 

  • Jbower and others, try reading a chronicle of books from Dr. John Sarno.  You may not buy all his dogma, but some of the mind body connection stuff is part of the New Science.  I have "real" physi al spi al issues including many bulging discs, facet arthritis,  stenosis, and degenerated disc disease.  SUX BIG TIME. I'm 68 and also contending with nerve inflictions,  peripheral nerve damage  all a result of the spinal issues.  My trauma initiated from developing a 1 inch shorter leg from a fractured right femur at age 15.  The left leg grew, but 3  months in a body cast prevented the right leg from growing because the growth plate was not reattached.  The doctors didnt know ablut  bone growth plates at that time, 55 years ago.  Nothing was done to address that and over the years, my spine developed scoliosis and twisted.  This has wreaked havoc all up and down the entire spine.  By the way, I have a specific T9 disc herniation, which IMO , is affecting  my breathing and stomach problems too.   Do your research, posture is a big part of this, PT can help,  but you  must do the daily stretches.  I am going into retirement or a disability outage from work.  Some people implore swimming pool therapy and Yoga, both of which I have not tried.  Read those books!!  How mental traumas affect your body years later!!! Anxiety and chroni  pain can spin out of control.  It does for me .  I keep trying to keep a lid on it , controlling and managing best I  can.  One day is OK, the  next not OK.  Be grateful for the OK days.  I continue to seek the Magic Wand, but my neural psychologist for chronic pain says there is no magic wand or pill that will do that.  Its a combination of all things that help, supplements,  meds on a limited basis, any exercise , meditation  and Advil at times.  God Bless all and particularly the chronic pain sufferors. 

  • Oh yeah, although I am guilty of not doing enough of this, Drink Lots of Water.

  • Aldo60AAldo60 Posts: 5
    edited 02/17/2020 - 10:15 AM

    LfiveSone, your comments about your spouse, is very much similar to me.  I would Brow Beat  my wife of 45 years, al ost daily.  Been taken to Urgent Care on many occassions, ERs on some occassions ( "my legs were like concrete" , lightheaded, etc).  I sropped doing that.  Yes, I am a little better using therapies i discovered on line with research.  I have seen 7 surgeons, both neural and spinal surgeons,  no surgery for me.  Lumbar spine would need total reconstruction   no one will touch it said a very highly regarded  Neural Spine Surgeon,  Too much arthritis.  Until my wife had knee surgery 2 years ago for a torn meniscus,  did she realize to a Certain but not Full extent what it means to have chronic pain.  You become angry at yourself and seek constant compassion.  Try non surgical spinal decompression.   It helped me a little but was stopped because the Chiropractor who was doing it , thought it may have aggravated my cervical spine ( I was having decompression for the neck and lower back),.  After a 18th session, i felt my tinnitus and TMJ syndrome worse.  We stopped.  He told me to read John Sarno books on mind body connection.  Try everything !!!!!  You bave nothing to lose.  Watch Youtube videos from Best, Aldo68

    Edited to remove doctor and facility names

  • Jbower, I read your recent afflictions.  Yes, i have crampy calves, pain in the quads , right side worse, if I flex  my spine I get a sharp immediate sciatic  nerve pain in the right leg to my toes  leg weakness, and tingling in both arms with shoulder weakness and cold hands.  I have TMJ syndrome.  Now that is a direct result from my cervical issues.  Spine surgeons said NO., but my ENT said Absolutely.  The cervcal issues affect the many nerves into both upper and lower extremities.  I have bladder incontinence,  and really cant hold bowel movements too well either.  Do i get occassional twitches you describe....... Yes.  Eye twitches, bicep twitches, and numerous Weird Nerve feelings most of the time.  I take Gabapentin , Prozac on limited levels, and now starting to try Lyrica.  As noted earlier in my other posts, i try to limit these meds, and use all researched supplements : turmeric, ginger, cinnamon,  skullcap, feverfew, hops, and others to try to quite the nervous system.  Overly sensitized nervous system produces all the ailments, spinning to intolerable levels causing anxiety and depression.  Read my other comments.  TRY EVERYTHING !!!!! BEST REGARDS, ALDO60 (now 68) 

  • jbower, I haven't commented on here for quite a while, but after I read your post I have to reply. I also have spasms in my arms, and hubby and I have no idea why. I've thrown a bottle of aspirin across the room before. It's mostly my right arm - I drop stuff all the time, throw things across the room, etc. etc. etc.

    I guess I just feel relieved that someone else with spine issues has the same problem. It's not painful, per se, but it can be rather embarrassing.

  • jbowerjbower wisconsin Posts: 158

    Cath111 I had to laugh when I read that you have thrown a bottle of aspirin across the room.  I have done the same but it was my phone.  Have you brought it up to anyone?  I'm curious as to what a doctor would say.

    There are so many wonderful comments and people experiencing similar things.  I really didn't think I would get that many responses.

    Just to add I do have a SCS for damaged sciatic nerve and a pain pump for the thoracic pain.  But the catheter is too low as they can't put it higher because the stimulator is in the way.  

    I am on lyrica and I take 2 different medications for anxiety along with depression pills and excessive sweating pill, ritalin for chronic sleep issues and morphine extended release. I'm on a handful of meds which isn't fun.  

    Someone mentioned bladder control problems.  I have the same issue!  I couldn't control it at all.  What finally helped was going from taking lyrica 2 times a day to one a day.  I have to tell my pain management doctor this as well.  Last when I brought up the bladder issues she said to see my primary care doctor that nothing she's doing or has me on would cause that.  But it started happening after she put me on the depression meds.

    I wish I had better pain control as nothing helps when my thoracic spine flares up.  She's not willing to change anything.  So the only thing they are doing is helping me get through the work day.  I've told her over and over that what I'm on isn't doing anything when I start moving. I want the pain pump taken out as I don't believe it is doing anything besides helping my lower back.  

    That's the reason why I can't do much of anything around the house is my thoracic flairs up so fast I have to stop what I am doing right away.  When I tell the doctor this it goes in one ear and out the other.  This is why I'm saying each year I am going down hill and getting worse.  

    It is what it is.  I can't force the doctor to work with me to try and change things around for better control and I honestly don't even know if there would be any to help. 

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