Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Living with a spouse in non-stop pain

My husband is 24 years old, has debilitating back pain, and often confesses that he would rather die or lose function than live on like this. He has been diagnosed with spinal stenosis and spondylolisthesis. It hurts me so much to see him in so much pain, and to know that I cannot help him in any way except for to be there for him. It makes me feel bad when I want to go do things, but he simply doesn't want to or can't because the pain is unbearable. He is not sure who can help him, as it seems like every physician he has ever gone to see has not cared about his condition, and shrugged it off in a way that truly pains him and breeds a mistrust of doctors. Unfortunately, he started experiencing this pain a couple years into our relationship, and since then it has been a roller coaster ride of appointments, unhelpful treatments, rude doctors, and financial hardship. He is so angry at his problems, and sometimes he takes it out on me and my family, which makes things even more difficult, although I try very hard to understand what he is going through. He also has issues with his teeth, expensive ones that we cannot fix at the moment, which just adds to his already debilitating pain. He hardly ever sleeps, and when he does it's a light, restless, painful sleep. It is difficult for him to eat because of the pain caused by his teeth. What do you do when you're in so much pain, non-stop, all the time, without the resources to treat it? I work so much to support us, it is difficult for me to coordinate his care, and he despises going to the doctor and doesn't take charge of his own treatment. I honestly don't know what to do about it sometimes. He is skeptical that any treatment will help him, and doesn't want surgery at all; he says he thinks he will die before he is thirty, either because of his problems or by suicide because he can't take the pain any longer. On top of that, navigating a disability suit is something I don't have time for and that we can't really afford, plus we don't think he would get approved for it anyway, as we have read that it is difficult to get approved for. So he just sits at home, in pain, and alone. This has bred depression and anxiety disorders in him which just make things worse (he already had issues with this before the pain, they are FAR worse now). He was in the foster care system/a run away for most of his life - in fact, he believes that a back injury that occurred in foster care and went untreated is the cause of his pain and misery now. We are expecting our first child in December, and I am so scared that it will be too much for him... I just needed to get that all off my chest. I don't know what to do, and any advice would be appreciated.


  • LC84LLC84 Posts: 599
    edited 09/01/2014 - 2:59 AM
    Why does he refuse to have surgery? It sounds like nothing could be worse than what he's going through right now. Surgery can be successful in treating those issues you mentioned. Has he seen a spine specialist? Was surgery recommended? I'm not a Dr, but I was told that surgery was the best option for my spinal stenosis. Those are not issues that generally get better on their own. If he hasn't seen a spine surgeon yet, I recommend he start there, and he really should consider having surgery if that's what is recommended. Is he on medications to help with the pain? I use a TENS unit to help with my back pain. Mine is a small, portable unit that only cost me $40. It doesn't require a prescription but I would ask his Dr before purchasing it. He can always try ice, heat, and OTC creams. Physical Therapy may also be beneficial. He should try to walk, because lack of movement can make the symptoms worse in the long run, and it can cause a spiral of other symptoms ( spasms, weakness, joint stiffness, muscle loss etc). You should go to the appointments with him and let the Dr know exactly what's going on. If he's not going to be an advocate for his own treatment, then you should step in. I can imagine how hard it must be for you to see him in this state, especially when you're expecting. Just don't give up, keep seeking treatment until you find the right Dr.

    I wish you both the best of luck!
    Progressive DDD
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • I'm really sorry to hear about these problems your family is experiencing. I also was 24 when I discovered my pain was going to a life long journey that 95% of doctors refuse me treatment for. Mostly it's because doctors don't want a failed surgery on a 25 year old on there wrap sheet. Just try and be there for him. As for getting help from doctors you really have to keep on them. Bother them as much as possible. They really hope most problems solve themselves and when they don't is when they actually do something about it. If he is on pain medication ( opioids ) mood swings and the like are rather common. Once your kid comes into the world is when things can fall in one of two directions, one way, he will snap out of it and realize he needs to be alive and continue to try at life and teach your child so much. I have been with my little everyday since she was born. She's only 1 1/2 and is potty trained and knows her alphabet! Or.... He will see the kid as a burden and himself as useless and slip further into depression. I went through both actually. Constant pain is a terrible thing to live with. Everyone supporting the ALS challenge should donate elsewhere. ALS PATIENTS SUFFERING EVENTUALLY END! People like us are told we just have to deal with our pain and suffer for the rest of our lives ( 60 years of pain is a loooong time). Just try and be there for him. My wife left me and my kid to go be a stripper. Please do not do that lol. As for disability....good luck. Ready for this..... Temporary disability only covers 7 months ..... You need to be out of work for at least 2 years before you can apply for permanent disability but once filed it will take 3-4 YEARS to hear a yes OR no answer from them. It's the worst system ever. By the time people like us get the financial help we deserve we've already lost everything.

  • Lcochran4: That's the thing, the spine specialist we saw about six months ago was so nonchalant about it. He was like, "well, you can have surgery, but there's only a 50/50 chance it will work. You may just want to live with the pain..." I was dumbfounded that a doctor could ever say that to a patient in such pain. All it did was serve to demoralize him even more. He was also very worried about surgery, because he thinks there are multiple complicated issues with his back, and he doesn't want them to open him up without knowing exactly what is wrong... He basically doesn't want to be in a wheelchair for the rest of his life if something does go wrong.

    He isn't on medications, he hates pain meds because he says they hardly help, but instead just make him feel messed up AND in pain. Doctors don't like prescribing pain meds to 24 year old men anyway... they always talk to him like he's faking or something, it's like, look at the damn XRAY you just took! I guess we have just had a succession of really bad doctors. His physical therapist was a cool guy it seemed, but the exercises after doing them for two weeks made it feel far worse, because he has conflicting problems. So the exercises for the bulging disk he was doing irritated his stenosis and he couldn't walk for a couple days. After that he developed his own pt regimen, but I know we should probably go see a different pt now that we've moved (we moved out of state about a month ago and haven't transitioned to new docs yet). We walk A LOT, and sometimes he feels okay, other times it makes him hurt. We know it's good for him though. The TENS machine worked for like a week, then he said it didn't really help anymore.

    I am being an advocate for his treatment, he's just in so much pain all the time that he is terrible at dealing with people without getting frustrated with them, because they don't seem to understand the life he is leading. It's like, I'm the one who has to make the appts and everything, because if I don't then they don't get made, because he doesn't want to talk to people. However, he did ask me very nicely yesterday to make an appt for him, so I did, because he didn't sleep the night before and was feeling very sick. We will keep fighting and try to find some physicians that give a damn, thanks for your help.

    Jerseypipedreams: I am so sorry to hear about your pain. : ( Your post is like exactly what we have experienced. He found out that he was going to have to keep fighting the system even to get treated, and that he might not be able to walk in thirty years. It's a lot to handle when you're only 24, especially when your wife is your only support group (foster home, his family are bums etc). Luckily, ever since he found out we were pregnant his spirits have been lifted ten fold. Whenever he gets in a slump I tell him to think of the baby, so I definitely think she's on his mind. He loves talking to my big ol' belly and whenever we talk about the future he's more positive, he just has those terrible days that he is in excruciating pain and I can't do anything to help him. Those days I worry for the future, but I am sticking around to help him. I could never leave him, I love him so much and I want to see him get better.

    Yea, that disability stuff is bull, it's so frustrating. I think I will go ahead and apply and try to get on it, but it just seems so time consuming...
  • with a board certified spine surgeon. The second thing is that they will most likely send him for an updated MRI. Lcochran is correct, those conditions, spondylolysthesis and stenosis can be corrected by surgery. While there are no guarantees with spine surgery, having surgery for pain relief alone is not the goal, it is to correct an anatomical problem in the spine, which may offer pain relief as a bonus. So , while he may be looking for pain relief alone, fixing the problem may offer him some relief from the pain, once he heals.
    I will tell you that spine surgery is no picnic and the recovery can be rough, so it is important that he get support from a therapist while he undergoes this.
    The next thing you need to do is get him into some supportive counseling. He is far too young to be going through this wanting to die, or threatening suicide.
    The next thing you need to do is get him into a dental clinic somewhere. Almost all communities have some resources for medical care for patients who are under insured or have no insurance. Some dentists will work with patients who have no insurance if you don't....
  • Something else to consider is that if the drugs he was taking was not working, he probably needs the right medications that work on nerve pain. Opioid medications don't work on nerve pain. If the nerves are causing his pain Lyrica, Neurontin, Cymbalta, etc. may work for him.

    My doctor told me surgery was a 50/50 thing as well. It may be worth the risk if he is as miserable in pain as you say. It's horrible to always hurt and not have a way to feel better. But with a better doctor, he may find relief.

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • I agree with Sandi about getting a second surgical opinion. My MRI changed significantly in 6 months so it may be worth having it repeated. Like Keith said, there are several medications used specifically for nerve pain. An anti-inflammatory may help with the back pain. You should discuss medication options with his Dr, there are other options besides opiates.

    Progressive DDD
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • that stubborness and pride is going to hurt in the long run. Do you guys live in a large city or have access to a good neurologist ? If I were him I wouldn't wait. I waited till 36 until I had mine. My wife watched me for years crawl around on my elbows around the house.
  • lpathessllpathess Posts: 4
    edited 09/07/2014 - 5:35 PM
    I know your husband's pain way too well. I've been dealing with it for 18 years since I was 35 from a bad car accident. I don't know how I did it, but after the accident, I still worked full time, sought PT up to 5 nights a week and took care of two small children. As mentioned previously, your husband needs to get into some type of depression counseling in order to learn how to deal with his issues on a daily basis as well as becoming more independent, because once your baby is born, most of your attention will be to your newborn. And, he may also fall deeper as he realizes that he's no long number 1 for your attention and he will have to do things for himself. It is easy for us to say we are in too much pain to talk to anyone, but he is an adult and no matter how bad he feels, he should be calling the doctors himself because really, he's the only one who knows how bad he feels on any particular day. As for surgery, as also mentioned, an MRI is drastically needed, so he needs to go to a good neurosurgeon or Spine Specialist. Not an Orthopedist or a Chiropractor. Someone who specifically knows and understands the spine. In the first 4 years I went through over 25 doctors that were quacks, but I didn't stop looking until I found the doc I've now been with for 14 years. He has done 4 spine surgeries on me and there's more to come. I am fully disabled, live on pain meds 24/7. I also have severe Fibro Mialgia with is part of the nervous system and if he has anything in that type of paradigm, Cymbalta or Lyrica are your best choices. And, the Cymbalta will help with his depression as well. I've been taking it for about 7 years now and thank goodness. He must be patient and wait the entire 30 days for him to get the effectiveness of what it is being prescribed. I'm also on 160 mg Kadian, 5 Percocets and up to 8 Flexeral a day just so I can move. Though I hate taking meds too, without them, I'd be where your husband is right now. They at least allow me the ability to get the things done that I need to do, even if it's relief for only a couple of hours. As for Social Security Disability, without valid doctor's records, forget about it. However, if you have all his medical records in order and they specify exactly his problems and the doctor agrees he should be on disability, it may not be as hard as you think. I got benefits in five months. However, because he is only 24, he may not have enough working credits to collect from Social Security Disability, but he may be able to collect SSI if you have low income for a family of 3. I wish you both the best of luck with the upcoming birth of your baby and to your husband getting some good answers and the help he needs.
    Lisa Hess
Sign In or Register to comment.