How do you cope with constant pain?
Posted , 8 users are following.
3 years ago after previously having sciatica which went away it returned. L5s1 disc protrusion. I have had a nerve block 2 years ago which numbed the pain but didn't fully get rid of it. I see a private physio every 3 weeks and recently had an cadual epidural which didn't work. Bought every gadget, do every exercise given by physio. Over the past 12 months the pain has been getting worse and managed through naproxen and physio. My physio suggested a fusion because it doesn't take much for me to.go out of alignment. Also the hospital physio recommended I see the consultant as it had been going on for too long now and affecting my quality of life and suggested surgery.
I work full time but have been struggling to do a full week since last injection in July and now use my leave to work 4 days a week. I spoke with the consultant who said he doesn't think surgery will help my situation at all and would like me to try some more medication. He said there is too much of a space so not impacting nerve too much. He thinks its shrunk back a bit. Last time 2 years ago he said if no improvement would consider shaving the disc. But why so much pain. I recently came off amatrytline after 3 months of side effects, so was told my doc to come off them and they didn't really help. So next step is to try gabapentin or pregablin. He doesn't want to consider anymore injections either yet.
After battling this for 3 years and trying to remain positive I am now really struggling. I have no life outside of work, lost friends, don't go away on holiday etc, plan my entire day from start to finish and usually put on a brave face until I go home. My marriage is suffering as a result, and I am now considering reducing my hours at work. I have adjusted my life and have tried and managed to take pleasure in the simple things, meals out and going for walks when I can.
I think the consultant dismissing my pain has knocked me, not that I wanted surgery nobody does! But had come around to the idea.
I can't sleep again tonite, got bad spasms and feel constantly worried about my future. At 46 feeling pretty low.
Just wonder how everyone copes with chronic pain and accepting that this may be your life now.
0 likes, 21 replies
pauly504 AM1192
Posted
My Sciatic nerve was being trapped through narrow canal few yrs back and it's coming back again. I tried gabapentin, pre gablin, codeine and morphine towards the end. Injection didn't work and I begged for an operation. Had spinal decompression of L5/L4 to S1. It did help but im waiting 4 to 6 months on seeing my surgeon again as latest scan revealed more narrowing. Im currently taking codeine again as needed but id rather not as opiates aren't good. Ive found it gets me down mentally and I know how you must be feeling.
AM1192 pauly504
Posted
Thank you for your reply, and I am sorry to hear that you are going through so much. It really helps knowing there are others that I can share this with, as sometimes I feel quite isolated. I go to work and it's a hidden disability to others. There are also the people in life who like to tell you they have a twinge or sore back. Unless you have felt this pain you don't really understand.
wishing you all of the best.
pauly504 AM1192
Posted
Thank you. I hope you get sorted also in the long run. In the meantime get some pain relief that will help you, its not the cure but you do end up needing something for relief. As you say, and like most ppl that post on here, you've got to have it to understand it.
Kind Regards
AM1192 pauly504
Posted
I will do thanks for your support.
Seafarer123 AM1192
Posted
Hi,
Sorry to hear you are in so much pain. Here are a couple of suggestions:
First, you probably need to accept the fact that, barring good fortune, you are going to spend the rest of your life dealing with pain. I don't say that to get you depressed but to get you to realize that you have to take charge, get answers and be open to solutions that you might not have considered a possibility just a few years ago. It's a shame that you (and many of us) are in this situation, but bemoaning your fate is not the answer - taking charge and doing something about it is.
Second - I don't mean to sound dismissive of your pain, but if all you have done so far is physical therapy and naproxen, you haven't explored you pain medication options NEARLY enough. If a disc protusion at L5/S1 really is your main problem, then you need to give serious thought to taking gabapentin. It is remarkable for the kind of neuropathic pain caused by disc impingements. The only bothersome side effect of gabapentin is lethargy and sleepiness, but when compared to how much you are pulling away from life due to pain, it really is better to just be a little tired all the time than to not what to get out of a chair (or bed) virtually ever. You've tried an anti-depressant so far for nerve pain but for me, I think the drugs like gabapentin are superior, with fewer side effects. And if gabapentin doesn't do the trick then you need to consider taking some of the milder opioids, like Tramadol or codeine.
Third, you need to push your doctors to do more diagnostics and give you more answers and options. Has your doctor done an EMG/Nerve Conduction Study yet? This test is designed to show whether the pace of nerve destruction resulting from your nerve impingement is faster or slower than the rate of nerve growth to replace those impinged nerves. If the "denervation" is outpacing the "renervation," you likely need surgery. And have they done an MRI or CT Scan with contrast - RECENTLY? Films that are more than 3 or 4 months old are usually not very helpful, your condition could change.
Fourth, I'm surprised folks are telling you that surgery is not viable for you (or that fusion is your only option). If you haven't had a back surgery before, and if an L5/S1 compression from a disk bulge is your main/only problem, then I would think that a nerve decompression surgery (i.e. a laminectomy/discectomy) would help a lot. And those procedures can be done as micro-surgeries, which means you go home the next day and you are back at work in 3-4 days. But whoever is telling you to consider a fusion (sounds like it was your physical therapist - do NOT take medical advice from them!) - that is a SERIOUS operation and I suspect is way too premature for you at this point.
Also, do more research yourself on your options. For example, most nerve blocks or other types of injections aren't even designed to last more than 3 months at most, so talking about having had one 2 years ago is a waste of time. You may need a regular set of back injections, until such time as they start losing their efficacy (e.g. don't last more than a week or two). At which point you might want to talk to your doctor about a radio frequency ablation, which can last upwards of 6-9 months and can be done multiple times if the pain comes back.
It sounds like you need to do a lot more exploring and you need to really get in the face of your doctors and tell them you need answers. Go in to see them prepared - ask them why aren't you getting a sequence of injections, being told about ablations, perhaps a spinal stimulator, a micro-decompression surgery, a nerve conduction study, mild opiods, etc. Perhaps there are good reasons those won't help you but MAKE the doctor tell you why, in words you understand.
And most importantly, don't be resistant to the use of pain medications. While there definitely are pain meds out there that are risky, there are also meds that aren't, that can be very helpful. Do a lot of research and ask a lot of questions.
Good luck...
AM1192 Seafarer123
Posted
Thank you for your full response. I really appreciate the advice and recommendations given. I know I need to take control of the situation and feel recently that it has been taking over me, which is not like me. To be honest I think a part of me always hoped this would go away. I had sciatica many years ago and it did. But I know this is my reality now it's just hard to face.
I have booked a doctors appt for next week and plan on raising everything that you have mentioned ref further testing. I plan on getting some more medication as suggested. let's see how it goes.
doreen18567 AM1192
Posted
Good luck. I hope you can move forward so you get out of pain soon.
Seafarer123 AM1192
Posted
Good luck with your upcoming doctor visits. One other thing that I would mention - while I usually urge people to be tough on their doctors and demand answers, it does help to know how doctors think in these circumstances. As the baby boom cohort ages into the elderly years, millions, if not tens of millions of people are coming to their doctors with back-related pain issues. They are swamped with this.
So it helps to know and understand the protocols that doctors follow in these situations, since they are so common - protocols that are drilled into doctors either based on medical association recommendations and/or what insurance companies (or the NHS) insist on seeing in order to approve compensation for the requested treatments.
The protocols doctors use are basically to start with conservative treatments first and then get more aggressive if those fail. So if somebody comes to a doctor with back pain they will first recommend ice, heat, rest and over-the-counter pain meds. If the pain is still present after a few weeks they will order up various diagnostic tests, starting with x-rays and moving up to MRIs or CT scans. If they see problems, they will first almost always recommend weeks of physical therapy, coupled with stronger (but still mild) pain medications. They also may request additional tests if they see problems, like a nerve conduction study if they see evidence of nerve impingement.
If weeks of physical therapy doesn't work, the next step in the protocol will be various injections, including epidural, facet blocks, nerve blocks, etc. Those will be approved to be done repeatedly, subject to certain medical limitations for the number you can have per year. If you eventually start "failing" those injections (not getting at least 50% relief for a month or more is a typical "failure" criterion), doctors may put you on stronger medications, including finally mild opioids. The doctor may also consider, in addition to (or as a replacement to) injections, what is known as a radio frequency ablation - this procedure is kind of like "cutting the nerve" that delivers the pain to your brain. It's not as severe as it sounds - it only stops pain, not feeling or motor control, and the nerve eventually heals in about 6-9 months. At which point you can have the surgery again (and again and again into the future) if it works for you.
Eventually they may consider surgery, usually a simple decompression surgery. The general rule of thumb about surgery, though, is twofold: first, the doctor needs to see at least six months of the diagnostics and treatments mentioned above and second, he has to hear from the patient that their pain (or medication side effects) now interfere with a reasonable quality of life. Often (in the US), insurance companies need to see this to approve the surgery.
After such a simple surgery the doctor will generally insist that you give it about a year to recover, and will insist on post-operative physical therapy. It can very often take that long to get relief from the surgery (it did in my case).
If the surgery eventually fails then the doctor will consider various last-ditch efforts which include: (1) really strong opioids; (2) implantation of various devices (like a spinal stimulator or a "pain pump") that can help; or (3) a more complex surgery, like a fusion or a complex installation of various metal support devices into your spine. That's pretty much the end of the line for most spinal-related problems, there isn't much more they can do beyond this last stage of treatment.
Understanding that this is how doctors think can help you in talking to your doctor, because you will understand why he is pushing back - usually because you haven't tried enough of the "conservative therapies" first, and because he knows more aggressive steps won't be approved until you have.
Again, good luck and always see you doctor mentally prepared.
sylvia38199 AM1192
Posted
I totally sympathise with you as I have been suffering excruiating pain for over 2 years and am currently in a wheelchair as cannot walk or stand for long.I spent five weeks in hospital in April when my lower discs prolapsed.
I was due to have surgery next Tuesday and have been just counting away the days. However, I received a phone call following my pre op saying my surgery has been cancelled due to my liver function being too high. It is my birthday today and I am absolutely devastated at this news as all I wanted for my birthday was my surgery, nothing else.
I am really worried now and so fed up.
Sylvia
AM1192 sylvia38199
Posted
Hi Sylvia,
I am so sorry to hear your news. That must have been a real blow not to have the surgery, I hope that they re test your liver function soon so you can go ahead. I hope you find some small pleasure on your birthday. I sometimes find any small distraction can change my mood totally. Even if it's something like just watching a nice film eating chocolate and cuddling my cats. Wishing you all the best.
CHICO_MARX AM1192
Posted
Cope? You don't. What you do is fix the problem.
I've had many cases of sciatica over decades that were all fixed by chiropractic either immediately or over the course of a few weeks. All except one... After doing chiro, PT and pain shots for one sciatica event, I went to my neurosurgeon who found a bone spur crushing the sciatic nerve root at L4. Same day decompressive laminectomy removed the spur and he also repositioned the nerve so it was now unimpeded. Immediate relief with the remaining inflammatory pain gone less than a week later.
Get it done. You don't have to live in pain.
AM1192 CHICO_MARX
Posted
Thank you for your response. Yes you are correct, feel like I need to take charge and be a bit firmer when I see the doctor next week.
The consultant is against doing surgery just based on the two scans I have had over the last 3 years which show the disc has shrunk back a bit. So he feels I am in the fortunate or unfortunate position of it's not pressing on he nerve enough. I still don't get why I am in so much pain if that is the case?
Tried chiropractic found physio works better for me.
Thanks for sharing your story.
Seafarer123 AM1192
Posted
Here's something to bring up with your doctor when he says "hey, I don't see a whole lot of impingement in your scans, so there shouldn't be a problem."
I've had several doctors tell me, and I've also read studies online, that say this isn't true. Medical studies have shown that there is NOT a strong correlation between the level of impingement (e.g. the size of a disc bulge) and the level of pain people feel. There are people who have only a small disc bulge who come in reporting excruciating pain, and there are people who have large disc bulges (or sometimes even disc herniations) who barely feel any pain. Doctors know that impingement can lead to pain, but they are still in the dark as to why people feel the DEGREE of pain that they do. There just is not a clear connection between level of pain and level of impingement - we just know that impingement CAN cause pain, and it CAN cause (or not) severe pain, regardless of observed degree of impingement.
So don't let the doctor dismiss your pain just because he claims your impingement is "not that bad." That's not the way it works, and an experienced doctor (like a neurosurgeon or an orthopedic surgeon) should know that...
doreen18567 AM1192
Posted
Sounds to me that you need surgery. I was on strong painkillers for 5 years, Gabapentin, codeine, paracetamol, naproxin, and had surgery at L4/L5 July 2018. I had numerous nerve root block injections to establish where pain was coming from as MRI scan didn't show anything. I didn't have any pain reduction with injections so no positive evidence. Neurosurgeon said we could try surgery at L4/L5 but no guarantees. We decided we should try surgery as there was nothing else. Op was quite long as surgeon found facet joint as well as nerve being pinched. I am now pain free but it was very hard coming off painkillers, like being a drug addict coming clean.
I've had 3 back surgeries over 35 years, each one successful but done by a neurosurgeon rather than orthopaedic. Would suggest you go back to your consultant or change to another one.
AM1192 doreen18567
Posted
Thanks for the post, really appreciate hearing a positive outcome and glad surgery has worked for you and that you are able to come off the medication.
It does concern me what the scan doesn't show so appreciate your story. My physio says my SI joint becomes stuck and impacts on my nerve. Everything get stiff/stuck and out of alignment as a result.
I tried to explain to my consultant that if I didn't see him every 3 to 4 weeks I wouldn't be in work.
I think I need to push the issue.
Thanks again.