Pain management
Pain is complicated. Everyone is different and levels of pain differ, so our doctors have a difficult job sorting it all out, but I have the impression that female patients are not taken very seriously when we complain about our aches and pains, including not taking ourselves very seriously sometimes. l We are conditioned to tough it out. I am anyway. I've always been pretty active, snowboarding and racquetball, working out, working hard and playing hard. I've had a lot of bumps and bruises and sprains, a couple broken bones so maybe have a generally high pain tolerance. When I did finally complain about a backache at a twice yearly followup with the oncologist after finishing treatment for early stage breast cancer, the suggestion was massage and stress management. This was in 2020. There was no CT or anything. Four months later I went numb from my ribs down and had emergency surgery for spinal cord compression from metastatic cancer. There was also a pathologic rib fracture.
I guess I should have complained more? All my fault for not advocating for myself enough? I kept getting the think positive speech, you know the your Labs and markers look great and you need to try to move forward. Why are we curing the cancer if people are just going to be depressed and worried about recurrence?
That was 3 years ago. I am grateful for all the advancements that have allowed me to continue walking and survive this long. But it should never have gotten that far along without at least a follow-up CT to find this earlier. Now I'm having constant issues with muscle spasms from the spinal cord damage. I still have clonus and gradually worsening numbness from the ribs down. My feet are sort of half numb and I have issues walking. I can't sit straight up in a chair like at a restaurant without getting uncomfortable cramps. It wakes me up at night when the methocarbamol wears off. I get charlie horses in my legs, ribs and diaphragm that makes me feel sort of sort of breath sometimes. This is on top of obviously pain from having a fusion from t4 to t8. And then there's the Faslodex injections which hurt for days. I'm not on any of the narcotic type medicines and I can't take NSAIDs because I'm on Eliquis. Tylenol is as effective as chalk for me for some reason. Anyway they always ask you what's your pain level from 1 to 10? I usually say four because I've had so much worse but it's not really going away either. I'm still hitting this sort of wall when I try to talk about the pain. The latest was the pain was considered possibly related to depression which I also managed to complain about a little. Well, maybe depression medicine helps my mood a little but it does nothing for muscle cramps. I think maybe he just doesn't really understand the issue because it's not his specialty. I don't really have any follow up with the neurosurgeon because basically it seems like once your surgery is healed and nothing is wrong with your hardware they are not following up with you about the aftermath. I'm going to try to make an appointment. My radiation oncologist has suggested possibly considering pain management clinic, but I don't want just Norco or whatever to mask everything and numb me out and make me even more tired. I'm still very active and trying to do things and what I want is to be able to do these things without having miserable muscle cramps every time I make a wrong move which is a lot of moves. For example I can't swim unless I wear a snorkel and stay flat. The twisting to lift one arm and my face sets off cramps. Bending over and pulling a weed will set off cramps (but that gets me out of chores haha) I feel like this could and should have been prevented too with earlier detection of the metastasis so I would have better quality of life right now for the rest of it. Metastatic patients are living longer sometimes and we shouldn't just be put on a death spiral carousel of mediocre management. That includes pain and also the actual cancer part. I want aggressive treatment of both and not this oh your stage four it's a lost cause just follow the cookbook protocols. I want something to be learned from my case that helps other people and not just put in a treatment cattle chute.
I'm sort of rambling and maybe this belongs on the rant page but I think what I'm trying to get at here is there's a lot of room for improvement in management of pain especially in female patients. What are other people's experiences (that includes guys) ?
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Yes, pain management is complex. I am lucky cos I have been relatively pain free and any pain I have tends to be from other non- cancer related things - like dental pain. Aspirin works for me, but paracetamol and other across the counter pain killers don't. Can't use aspirin because of the kisqali so medical team want me to use opioids. Small problem is that most of them don't work for me, either. Oxy-codone, codeine, pethidine we are working our way through the list. To the team's consternation - each time I come back and say - nope - doesn't work. I know morphine works cos when my appendix burst I was on morphine. But I don't want to have to use morphine until absolutely necessary. My pain management is gradually becoming a thing of concern to me. While not needed now, in the future I will need a reliable pain killer.
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malleemiss251 it's odd how one medicine will work for somebody but not somebody else. I hope you find some treatment that helps. Dental pain is the worst ugh I've had several root canals...
Maggie15 I'm glad something helped you. I'll consider going if they refer me. I've done all kinds of physical therapy and that is one of the main reasons I can walk at all but the muscle spasms haven't let up or improved. The numbness improved at first but then plateaued and hasn't changed.
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Well I contacted my neurosurgeon's office and get kind of a lame response from the PA that my spasms and cramps are expected after what I've been through and to take Ibuprofen and get a massage. They don't want to see me in an appointment. Hello, I can't take ibuprofen cause I'm on Eliquis... I'm not asking for more surgery… I need help managing this spasticity. They didn't say anything about maybe looking at my medication dosage or anything like that. I feel like they kind of just blew me off. If I was a famous movie star or athlete I would be getting all kinds of treatment and therapy.
Does anybody else have this endless cramping issue from spinal cord damage? I mean I know I'm supposed to be grateful that I'm not paralyzed and suck it up and carry on or whatever think positive blah blah. It takes a lot of energy to claw my way out of the black hole and make myself do things. The trouble is almost everything I do I have to modify or can't do at all because of these stupid cramps plus the instability from my feet being half numb, or else it's just the fatigue and then I have to stop. The oncologist blames pain on depression. Well I've been on the anti depressants for months and the pain hasn't changed. If anything is worse because I feel like doing more things but I overdo it and get cramps. Sigh.
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I've tried to categorically set into motion what I feel that I need from health care to deal with physical, mental and even spiritual needs. My latest advocacy was for better pain management. Gabapentin was helping a bit, but it didn't touch the bone pain. MY GP recommended a Pallative Care NPR. It's been 2 months and I am very happy (so far) with the care. I finished radiation and started on an opiod. I've learned from my former neurologist (I have MS 23 yrs) to get in front of the pain, not wait till it's overwhelming. I was quite adverse to opiods because I was on Low Dose Naltroxone for years, and opiods are prohibited. I gave up the LDN and after a few week, started Hyrdocodine. I'm happy that I now no longer sit in my chair all day. Oh it may be a false temporary fix, but it's nice to get out to the garden and go to lunch on the way to doctor appts. You are worthy of proper care. If your needs are not being met, tell your provider. It's not like we are some person seeking drugs without a damn good reason!
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Hi Sorry about all the pain.
I had a similar situation, when i discovered my mets i already had 3 broken vertebrae. I ignore the pain for too long, thinking it was muscle pain. And at the hospital they missed all my scheduled visits with covid excuse.
So in about 2 weeks after diagnosis I was in a hospital bed, couldn't even move.
For me opioids didn't work, i only got the SE of them. Surprisingly it work better paracetamolo. I think is weird, as it used to not even make my headache go away, but for some reason worked on my bones.
When I had too much pain i was using a bust and a collar, it did help.
Weight berring exercise helped too. It feel weird at first, but end up been very useful.
But the things that give me more reliefe was a super cold shower on my back and hip! I stay for 7/9 minutes with the shower water on my back. It is about 5 Celsius degree here. It seem crazy at first, but it is nothing compared to my pain. And after about a minute you wont feel anymore. I do that when I have pain. I stay super still and before do any movement, I stay other 5 minutes under hot shower.
At this point is very difficult to state my pain from 1 to 10. I sometimes have this very constant pain that I can't even guess if i imagine it or is just always there...probably before mets I would of give it a good 7 or 8, and 10 for the cramps. Now i give it a 6 maybe, and it is benn a while the crazy cramps disappeared.
Fortunately in the last period, two years after secondary diagnosis, i got days that i almost forget about thefractures, and almost feel weird not yo be always in some sort of pain...
If you find anything useful please update us!
I was thinking about agopuncture or other, but to me cold showers are so effective at the moment. Also meke me sort of high! 😅
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Ask to be referred to palliative care specialists. They are experts in pain management.
They do not just give you pain medication they will look at everything to do with the activities of daily living.
As well as recommending a medication plan they will refer you for various therapies and support.
My very good oncologist said to me when I asked for a referral for a palliative specialist said my need for it was low but she would make the referral anyway.
I found it very helpful.
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Agree about palliative care. Right after my diagnosis they really helped me become functional again.
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I also agree that you should ask for a palliative care specialist. Mine coordinates what is prescribed by my sub specialists in two hospitals. He happens to be an anesthesiologist who thinks pain relief and functioning as well as possible is important no matter what is causing the problem. He does not just prescribe meds; acupuncture, PT, nerve blocks and adaptive aids have all been helpful. If something is no longer needed or doesn't work he discontinues it. It's a dynamic process since your body and its reactions are constantly changing.
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