Patients have discussed the need for more effective pain medication. Many regularly use various painkillers available to reduce and mask the pain but of their reluctance to be on them long term because of side effects. They will also have to pay later for the activity they did while the pain was masked.
Ibuprofen
K6a patient “Once a week at church or jail when has to stand a lot 3 to 4 pills. Depends on how much she walks takes about 45 mins to start working. Hang in there but if standing and doing stuff three hours later pain breaks through” If pain breaks through. Going on vacation depends on what is going on maui go in morning booked events water supposed to be calmest so do pain pills try and stay on top of it. Once she feels them she kills them
K6b patient “What pain medication do you guys take? Ive always tried to avoid where possible and only take ibuprofen when i really need to however i think im getting to a point where i need something a but more substantial.”
K6a patient “Ibuprofen, but on special occasions only. Avoiding being on my feet is the only long-term solution, really. I have an office job that does not require much walking and I have someone come and help with cleaning the house etc. I do understand the feeling of being left out. When I was younger, I tried to hang with the others and asked a pharmacist which painkiller she would recommend if I was out drinking. The look on her face… (She said ibuprofen, btw). Even with that, so many nights I would come home, collapse on the floor and just cry. Maybe trying to make friends through activities that we can do is one way – a reading circle, painting classes… “
K6a patient “If I take prophylactic ibuprofen ahead of a party where I’ll be on my feet, I definitely suffer less the next day”
K6a patient “I have been taking meds for my PC k6a since I can’t even remember..just to be able to do anything!! Tylenol, Excedrin, Ibuprofen..(also surgery for a bleeding ulcer because of it all). Just to be able to walk is worth it. I am taking Tramadol extended now. When the meds wear off the pain is worse.”
K6a patient “I usually take an 800mg ibuprofen with breakfast. I call it vitamin “I”. This allows me 4 hours to do the things that need to be done. I have a stash of percocet for the bad days. Neither eliminates the pain. When the meds wear off, I pay dearly.”
K6b patient “I took ibuprofen for 10 years in order to dance. I paid in two ways. The next day I was in agony and after 10 years I developed Barrett’s Esophagus which luckily did not turn into cancer. Because it did not turn to cancer, it was worth every minute but I would not recommend it to anyone. Now, i can’t take it at all and had to leave behind many of the foods I love, forever.”
K6a patient” I take ibuprofen once or twice daily. If I have an activity I know is going to be rough, I take a norco. So example, I plan on mowing my lawn and doing yard work in an hour from now so I just took a Norco. I’ll back that up with 2 ibuprofen in 2 hours. Then I shouldn’t be in too much pain when I’m done and I can get off my feet for the good part of the rest of the day”
K6b patient “I took ibuprofen for many years and now it’s chewing through my stomach lining so I’ve had to quit now I take cbd oil 25:1 and it’s helping but it took some adjustment to get used to it.”
K6a patient “Yes you pay for it afterwards. Usually ibuprofen could get me through a wedding (I used to photograph weddings) for around 8 hours. But then Ibwas down the entire next day. Once on vacation in a tropical setting I used ibuprofen to sight see. The next day the same. And the next. By the fourth day of solid walking around all day my feet grew blisters, and inflamation in the form of redness and swelling. Ibuprofen didn’t help at that point. I had to take the day off and stay in hotel room. I could barely walk the rest of the trip. So I think at least with my experience on skipping tropical sightseeing unless I’m doing it from a ship or train or car without walking everywhere. Because you really can only use ibuprofen for a short term purpose because of the long term side effects but also it’s effectiveness wears out long term. But that’s just how it is in my case.”
Naproxen
K16 patient “I take naproxen for the pain (stronger anti inflammatory than ibuprofen). I use it sparingly, so occasionally as required.”
K6b patient “I’ve got naproxen but it didn’t do anything for me except make me feel tired and headachey”
K16 patient “Medication only when I need to do something, naproxen. Yes I pay afterwards but does help with the pain at the time to a degree.”
K6a patient “I have been relying on multiple doses of Excedrin daily for more than 60 years because of the pain. I learned long term use results in anemia. I chose pain relief.”
Paracetamol and Pregabalin
K16 patient “I can’t take anti inflammatories because of my kidneys, so I take paracetamol as I need it but I also take Lyrica (pregabalin is the drug name) 25mg morning and night, it’s really good for nerve pain so helps a lot with the burning/shooting etc. You can take much higher doses of it but I’m very sensitive to meds that make you drowsy (as I already have severe fatigue) so I stay on a low dose, but I know people that take 600-800mg per day so there’s plenty of room to take as much or little as you need or can tolerate!”
K16 patient “I take panadeine forte daily which is codeine 30mg and paracetamol. I got to the point where I don’t want to have any limits on what I can do and one tablet every 4 or 6 hours is enough to keep the pain at bay, if I am spending alot of time on my feet I will take two at a time. I also take tumeric/Curcumin and fish oil daily as an anti-inflammatory or ibuprofen if I am in alot of pain but try to avoid it because of tummy damage in the past. Codeine is prescribed, they’ve got very strict here with codeine as it used to be OTC until this year, was easier to get OxyContin at one stage! Tumeric and Curcumin is health food shop. Actually one more I’ve tried is Mobic an anti-inflammatory which is a bit gentler on the tummy, is prescription but makes you quite tired so I don’t use it much.”
K6a patient “I take these antibiotics (Lymecycline Capsules, hard 408mg). I used to get infected blisters. I was ill January 2019. These really do work if you get cellulitis. That’s what they called it. I was on high dose when I had it. I’m on low dose to stop infection.”
