Pain tolerance and quality of life as we age

Bobw235

Bobw235

Senior Member
Location
Massachusetts
As some of you will recall, my wife had spine surgery (fusion) last year in early September. Slippage between the L4 and L5 vertebrae in combination with a cyst on one of the spurs of the bone was causing nerve pain down her right leg. The surgery had seemingly fixed the issue and my wife was very eager to get back to walking regularly. I can recall her being so happy in the aftermath of the surgery, being free of pain after a long period when walking was increasingly difficult.

We find ourselves a year hence, back in a similar spot to before the surgery, searching for answers as to why the pain has returned with a vengeance. At this point she cannot walk or stand for more than about 7 minutes without having to sit to relieve the pain. Last night she cried quite a bit, so tired of the pain and lack of ability to get out and enjoy our retirement. It's put a damper on all that we'd planned to do this year. Now we find ourselves back in the routine of tests and doctor appointments to try to determine the cause.

I am at a loss as to how to comfort her as she's so discouraged. I'm normally an optimistic person, but it's hard to keep telling your loved one it's going to be okay, when there's a chance it won't be. She's afraid this is the new normal for her. Not sure what to do here but keep pressure on the doctor, but it's so frustrating. The doctor has not been good about being responsive, thus we may have to find someone new, but that just delays treatment. I wonder if pain medication is going to become a part of my wife's daily life until we get this resolved. In the mean time, the situation is just leading to a worsening of her existing depression.

Can anyone here relate to my situation? If so, how did you handle it? Any suggestions?
 

So sorry about your wife's suffering, Bob. I really hope something can be done and that you can begin to enjoy traveling and retirement.

Haven't really dealt with this, but my normally very healthy husband had an 'episode' back in 2003 which caused him to have serious vertigo. He tried to deal with for more than a year while working, but gave in and retired. He was quite upset that this condition may be permanent and was afraid he'd have to start walking with a stick. I didn't know how to comfort him except to say wait and see, it might be temporary. Fortunately, it was. Within about a year and a half he was fine. He used to have incredible balance before he got sick, now he normal balance like the rest of us.
 
Thanks Annie. This just sucks. She's depressed and sad and angry, not saying much today. Just really quiet unless I ask her a question, to which I get a really short reply. I know the signs. This is not good. Last night she cried for quite some time.
 

Bob, I'm sorry that your wife is experiencing this pain again and how it's compounding her emotions as well. I think anyone would feel at the very least pretty discouraged. I don't have first hand experience with this, but I know others will chime in to your request. I will say that the doctor not being responsive is a red flag, and finding a new practice, one that will help with her physical and emotional pain, is essential. For today, does your community have any mental health resources that she could see soon to talk about what's going on? As supportive and kind as you obviously are, it's important that you don't bear the whole weight and that you also have some support.
 
Sorry to hear that she is pain Bob. I have some understanding of her situation as I am currently waiting on a knee replacement after having has a hip replacement last year. There was a period of time after my hip operation when I was relatively pain free and it was wonderful. Now I am pretty much stuck in my chair again for most of the day and unable to stand or walk for very long.

My thinking is that where there is pain there is mostly a cause. If the current doctor is unresponsive it is time to consult one that will investigate that cause. Then, if there is something that can be done you have a way forward. If not, it will be easier to adapt to a new regime of pain relief and different mobility arrangements.
 
I would suggest you begin looking for another doctor, even if it's for a second opinion. I have gone through a whole lot of testing these past eight years and each time, have gotten no definitive answers. One doctor insisted on surgery while another performed a procedure that spared me that situation! I was on the verge of giving up, so sick of doctors.

I started by searching for a larger hospital and doctors associated with that hospital. Then I looked for doctors experienced in that specialty and senior partner. Checked credentials online. I was surprised how completely different the new doctor approached the problem--diagnosed and treated without the constant running back and forth for various testing! First, get the diagnosis. It may not even be the same problem she had before. There may be nonsurgical treatment available! Perhaps there is a less invasive type of surgery she could chose. Try to reassure her.

We have to be pushy and insistant sometimes! It's very hard to do this ourselves because it can be emotionally draining, let alone the pain and the worry. It sounds like she has gone through a lot already and it does leave you down, but then you have to get yourself together and continue to fight. I'm sure you advocate for her--you can deal with this together. See what pain treatment is available in the interim. I am sure there is a factor of frustration and disappointment, I wish you both the best and hope you can find the answers to help relieve her pain!
 
I will be going with her to the next doctor visit on the 18th, and plan to make sure we're all on the same page. In the interim, she just got a call from a dear friend who has chronic back pain and is somewhat of an expert in management of pain. He's giving my wife some advice as I type this, and has recommended she ask the doctor for Oxycontin in a low dose until we get to the bottom of what's causing this. In the interim she's already started to get the names of doctors who specialize in pain management until we get the nerve issue sorted out. It's so frustrating.

For the longest time she was miserable until the surgery, and then was so happy in the aftermath. No pain after more than a year of misery, but then this started up again in January. Nothing has worked between injections and PT, so I'm thinking she may need surgery again.

Thanks everyone for your thoughts and advice. Much appreciated.
 
Bobw235 said:
I will be going with her to the next doctor visit on the 18th, and plan to make sure we're all on the same page. In the interim, she just got a call from a dear friend who has chronic back pain and is somewhat of an expert in management of pain. He's giving my wife some advice as I type this, and has recommended she ask the doctor for Oxycontin in a low dose until we get to the bottom of what's causing this. In the interim she's already started to get the names of doctors who specialize in pain management until we get the nerve issue sorted out. It's so frustrating.

For the longest time she was miserable until the surgery, and then was so happy in the aftermath. No pain after more than a year of misery, but then this started up again in January. Nothing has worked between injections and PT, so I'm thinking she may need surgery again.

Thanks everyone for your thoughts and advice. Much appreciated.
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Good luck to your wife and you. I have little tolerance for pain so I sympathise. Surgery may be needed. I have a friend who has had her back 'rebuilt' twice. She had very serious issues with her spine. She only has a bit of pain now.
 
Bobw235 said:
I will be going with her to the next doctor visit on the 18th, and plan to make sure we're all on the same page. In the interim, she just got a call from a dear friend who has chronic back pain and is somewhat of an expert in management of pain. He's giving my wife some advice as I type this, and has recommended she ask the doctor for Oxycontin in a low dose until we get to the bottom of what's causing this. In the interim she's already started to get the names of doctors who specialize in pain management until we get the nerve issue sorted out. It's so frustrating.

For the longest time she was miserable until the surgery, and then was so happy in the aftermath. No pain after more than a year of misery, but then this started up again in January. Nothing has worked between injections and PT, so I'm thinking she may need surgery again.

Thanks everyone for your thoughts and advice. Much appreciated.
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Being no stranger to chronic pain from back issues (and hips, though I got those fixed), were I in your wife's shoes I would seek out a different, board certified practitioner in a different practice. I would also want to see both an orthopedic surgeon and a neurologist, and see what they each say. I'd also see if there was anyone I could see who sort of subspecialized in failed back surgery (yes, such people DO exist); the trouble with keeping going back to the same person is that many are reluctant to admit that their surgery has failed for some reason or that their diagnosis was off. You don't want somebody to just keep whacking away at the same problem if it's the wrong problem.

I lived with that debilitating pain down the leg thing for almost two years before I found the answer. If your wife is going through what I did, I sincerely sympathize with her. It takes over your entire life, because you cannot do any of the things you want to do and the pain wears you down in the worst way. I am not surprised she is depressed; it is an awful thing to deal with -- all the joy in life just slips away, and your feelings of having a future along with it. Adding to the pain and frustration, you have the fact that you see more doctors than friends, and many of the diagnostic tests for back stuff are no picnic, to say the least.

DO insist that she be provided good pain relief! There is no excuse for allowing a patient to continue to live with unrelenting pain while the physician tries to figure out what is going on.

I certainly hope she can find the answer, and that it can be fixed.
 
Bob, I hope you can find solutions for your wife's pain misery.

Those of us not currently in pain have blessings that we should give thanks for.
 
Butterfly said:
Being no stranger to chronic pain from back issues (and hips, though I got those fixed), were I in your wife's shoes I would seek out a different, board certified practitioner in a different practice. I would also want to see both an orthopedic surgeon and a neurologist, and see what they each say. I'd also see if there was anyone I could see who sort of subspecialized in failed back surgery (yes, such people DO exist); the trouble with keeping going back to the same person is that many are reluctant to admit that their surgery has failed for some reason or that their diagnosis was off. You don't want somebody to just keep whacking away at the same problem if it's the wrong problem.

I lived with that debilitating pain down the leg thing for almost two years before I found the answer. If your wife is going through what I did, I sincerely sympathize with her. It takes over your entire life, because you cannot do any of the things you want to do and the pain wears you down in the worst way. I am not surprised she is depressed; it is an awful thing to deal with -- all the joy in life just slips away, and your feelings of having a future along with it. Adding to the pain and frustration, you have the fact that you see more doctors than friends, and many of the diagnostic tests for back stuff are no picnic, to say the least.

DO insist that she be provided good pain relief! There is no excuse for allowing a patient to continue to live with unrelenting pain while the physician tries to figure out what is going on.

I certainly hope she can find the answer, and that it can be fixed.
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Thanks for your insights here, Butterfly. Much appreciated. Her friend gave her a long lecture on the phone about pain management, and how she MUST get out of pain. My wife still has some hydrocodone, so she's going to try that first to see if it helps, but if not, will be reaching out to the doctor for something else. I agree with you, we need to be prepared to go elsewhere. The doctor she's seeing now was referred by her surgeon (whom we loved) after they determined that the surgical site was healing properly. She's now seeing a physiatrist, someone who is supposed to diagnose the cause of the pain.
 
tnthomas said:
Bob, I hope you can find solutions for your wife's pain misery.

Those of us not currently in pain have blessings that we should give thanks for.
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Thanks Thomas. I have my share of aches and pains, but nothing like what she's experiencing. I am truly thankful.
 
Bob, sorry to hear of your wife's suffering and yes I can relate. Got to the point I just got tired of visiting the pain doctors and specialist, even after switching as they kept wanting to repeat procedures which did little to solve the long term issues, sometimes even causing more.

It took me some time to figure out it was a previous procedure that put me in one of the situations I've been in the past few years now, that being, I am unable to sleep in a bed. I haven't a clue what it feels like to sleep in a bed anymore, let lone what's it's like to take a nice walk and I'm still in my 50's for another year and a half for crying out loud. I'm not sure what you can do to comfort her except, not offer off the cuff advice as so many often do thinking they're helping. We've been there tried that, don't need people who haven't walked in our exact path to think what works for another will work for us as often times most things we've researched and tried ourselves in the past along with suggestions from doctors and our physical therapist. Just your understanding is the best comfort you may be able to offer many times.

I'm not saying don't make suggestions, it's not good to become complacent either, but, I am saying try not to get impatient, being in pain and having others telling you what you already know doesn't help, if there's some new medical things that might be out there, it's fine to see if she wishes to talk about it, just don't ever push and. Just be there and let her know you sympathize and don't blame her for not being able to participate in the active life you hoped you'd both have as part of your retirement.
 
I'm so sorry to hear that your wife is in pain again. If her doctor hasn't been responsive, she should seriously consider finding another. In the past I've had common medical problems that were pretty straightforward but misdiagnosed by more than one doctor until I finally found one who asked the right questions and treated it correctly. With something like back pain that's more complicated, it's even more important to find a doctor who knows what questions to ask. Maybe the pain isn't easy to fix, but she should at least have a doctor who is responsive and that she feels confident in.
 
Bob, I am in the same position as your wife, on a good day I might be able to stand 5 minutes without severe back pain. I had one surgery, and it did help for a while. At that time the doctor told me I would very likely have more back surgeries he himself had had 3. However we have found some helps for me, I have a tall chair with wheels for times in the kitchen if I have to stir something for any length of time. Oddly enough the place where I am most comfortable is in a grocery store.the carts are just the right height I can lean into and get around very well with almost no pain. So that gave my husband an idea, he got me a walker with 4 wheels, and altered it so I can treat it almost like a shopping cart when we are somewhere with no carts. We both have disability scooters so we can get out and about as we wish. I am now told that before I can have another surgery I have to lose control of my bladder and bowels. Cheerful idea. The other possible help for your wife might be marijuana, some states it is legal and people can buy the type with more CBD's than ThC. I can't buy it with the CBD's here but I do bake it into cookies and on occasion will have half a cookie to help me sleep.
 
Thanks everyone. She had an EMG test this week and next Friday we go to see the physiatrist to get the results and talk about next steps. She's so frustrated and depressed over this.
 
Bob - So sorry to hear about your wife's ongoing pain issues. And I understand from first hand experience the frustration you are dealing with. As I noted on here before, I lost my first wife to ALS about 14 years ago and my second wife to cancer about 7 months ago. Many days you just wish there was a way to hold them tight enough that you could transfer some of your own life energy to them.
 
Butterfly said:
EMG tests are no picnic, either -- the needle ones, I mean. I had one years ago and I will NEVER have another one.
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She has now had two of them, one of which was prior to last year's spine surgery. She gritted her teeth and did another in the hope that it will lead to a diagnosis and successful treatment.
 
Hoot N Annie said:
Bob - So sorry to hear about your wife's ongoing pain issues. And I understand from first hand experience the frustration you ae dealing with. As I noted on here before, I lost my first wife to ALS about 14 years ago and my second wife to cancer about 7 months ago. Many days you just wish there was a way to hold them tight enough that you could transfer some of your own life energy to them.
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Thanks. We're making the best of it. She's okay sitting down, but wishes she could be more active. Doesn't want to take pain meds. Just wants this to get better. Has been dealing with it for a few years, and after the hope that she had following last year's surgery, this is really depressing for her.
 

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