r/sarcoma • u/rAsna12r • Jul 14 '25
Patient Updates Pain unbearable
It's been a month since my limb salvage surgery in my distal femur. The pain is unbearable i cannot sleep properly at night. After taking pain medication i sleep for 4 hour or something then pain comes back and I lost my sleep. Anyone with this experience how long will it take to get proper sleep after surgery My oncologist Said pain will be last more than 6 weeks tho How can I manage and get a good sleep
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u/5GsPlease Undifferentiated Jul 14 '25
I had limb salvage surgery in my anterior tibialis two years ago. I've been off opioids completely for about 18 months. Started to very gently wean off about 3 months post-op, but I was on a LOT of medication both pre and post-op. Do you have a palliative care team? I had a palliative doctor assigned to me to manage both prescribing the pain meds and getting off of them. I couldn't have gotten through it on my own, and the palliative doc's entire job was to evaluate my needs. I wouldn't have been comfortable with a primary or even a pain management doctor managing this for me. If they aren't regularly responsible for treating cancer pain, especially with how sarcoma involves muscles and soft tissue, they likely won't understand how severe and agonizing the pain really is. [I lost 30lbs in 6 weeks pre-op. Not from chemo. Purely from pain.]
If your oncologist isn't giving you the help you need, perhaps see whether you have palliative care available to you. You may need someone who really gets this and who is supposed to focus solely on treating severe pain in cancer patients.
p.s. I still take 450mg Lyrica every day for the residual nerve pain. I will likely need it permanently.
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u/rAsna12r Jul 14 '25
Did you get endoprosthesis And aah the brainfog comes with pain meds are not good not good
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u/5GsPlease Undifferentiated Jul 14 '25
I had to look that up, and no, I didn't need endoprosthesis because the tumor did not invade the bone. I did lose my entire anterior tibialis muscle and a huge part of the peroneal nerve. I had a latissimus free flap to reconstruct my lower leg, as I lost about 1/3 of it. I experienced some bone pain pre and post-op, but man, nothing like what I just saw in the photos I looked up. You've been through it. I can see why your pain would be excruciating.
The brain fog was beyond frustrating. It was infuriating to deal with. I was so tired of searching for words, and I talk for a living. It took a long time for that to improve, but I'm almost back to baseline. (I'm also a woman and approaching menopause with every passing second, so hormones could be to blame as well.)
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u/jay-aay-ess-ohh-enn Jul 14 '25
Totally different surgery, but I am four weeks post laryngectomy for larynx cancer and I also cannot sleep. The surgeon believes my pain is from nerve damage and pain meds seem to have no effect. He said there are some psychoactive medications we could possibly try to mellow out the sensation, but I am hesitant to mess with my brain. It feels like I have road rash on my neck and then a chinstrap that's too tight is rubbing right on the road rash. The surgeon said it might take 12 months or more to fully resolve.
I don't have any solutions, but I guess I am saying that you are not alone.
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u/Crazy_Tourist_7817 Jul 14 '25
If the pain is severe and persistent, you might want to ask about a nerve block. There are temporary and permanent nerve blocks, depending on the type of pain. Each person’s situation is different and requires a doctors evaluation, but it’s worth bringing up with your team if you believe this could help.
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u/rAsna12r Jul 15 '25
Not persistent but it comes and go like a wave
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u/Crazy_Tourist_7817 Jul 15 '25
If it were me and the pain came and went several times per week and the severity was high. I would think it’s a discussion with having.
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u/C3POwn3dv2 Caretaker Jul 14 '25
Did you have radiation pre surgery? Has your doctor checked for signs of infection or anything? My wife was in immense pain before we found out she had an infection at her surgical site.