I’ve been in touch with my GP who is helping me with pain relief
Having tried morphine slow release she tried me on a low dose of oxycodone with fast acting capsules for breakthrough pain
Theses weren’t strong enough so she calculated a slow release dose for me which I started Monday...after two days I started to feel peculiar...blurry visio and feeling like I was going to pass out...I’ve started to slowly reduce the dose since Wednesday but still feel awful...just lying on the couch
Have any of you experienced these symptoms?... I’m not taking this stuff it’s poison...what’s the point of pain relief if you don’t want to do anything because of side effects
Barb xx
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Barbteeth
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I’m so very sorry to hear that you are still in pain. I’m even more sorry to hear that they just can’t seem to get you on pain meds that help you.
I’m so very fortunate not to be in much pain and still manage mine with ibuprofen or paracetamol... or the occasional g&t.
I wish I could be of more help. I hope the other ladies may be able to offer help.
On a brighter note, Bubble and Squeak, my chicks are just over six weeks old. I think I may have a hen and a rooster but still not sure.
Sending you a huge hug 🤗
Jo xx
Hi Barb,
I’m sorry to hear that you are still dealing with a lot of pain. If your GP hasn’t been able to help I’d go ahead and call your oncologist for advice on what to do next. Maybe a dose of radiotherapy could help with the pain. Or a different form of pain relief that doesn’t leave you feeling so awful. Almost passing out is serious. Do you have an emergency number for your oncologist or oncology nurses? I have only ever used it once, but I’m glad I did.
I’m worried as well....I’ve just taken one dose of cocodamol and some paracetamol and ibuprofen and hoping the weirdness goes away...this heat is not helping...usually I love sunbathing but it makes me feel sick
Is your husband with you? You don’t want to be alone. If you have that emergency number I would give them a call. I’m not coping in this heat either. Yesterday was unbearable. I’m only planning to step outside to put rubbish in the bin or clothes on the line.
Oh bless you Barb and I know how you feel. Cancer and being in pain does get in the way of a happy life and marriage at times. I think we often take things out on those we actually love most.
My husband Steve, hates talking about cancer and just wants to carry on as normal ..... easier said than done at times.
I hope you feel better and try and celebrate your 40 years of marriage tomorrow and I hope you’ve had many good times together!
My husband doesn't really like talking about cancer either. He talks about us growing old together and making plans for the future. I want to believe that I will reach old age. I still have a few decades to go though! But I do sometimes get down.
He acknowledges that he could be doing more to be more supportive. I have noticed that he's been more understanding lately. I think that with some men you just have to be really specific and let them know how they can help rather than shrug your shoulders and say you are fine. When I'm specific my husband knows what I need and steps in to help.
Barb, perhaps you should let your husband know what's going on. I'm sure if he knew how you nearly passed out he would be really concerned and want to take you to hospital if necessary. Even if things are still bad between you, he won't want you to suffer. Forty years is a great achievement, but if you are feeling down you probably don't feel much like observing your wedding anniversary. I wish I could give you a hug. Let's try and get together one of these days. I would like that.
I did tell him how poorly I was feeling and he was concerned...also he’d bought me a massive bunch of flowers for our anniversary...he obviously does care but doesn’t show it!!!
Now I feel a cow for being so nasty about him
Still feeling horrible...blurry double vision and feel queasy...I’ll email my GP later to let her know and hopefully the drugs will be out my system soon and I’ll pick up
Strangely after just taking ‘normal’ painkillers yesterday I didn’t have horrid pain but then I just sat about all day watching tv and trying to read a bit...maybe I’ll just have to hang up my spurs and accept I have to slow down...I just feel all mixed up
I hope that you are feeling better today. I’m glad you told your husband how you have been feeling. If you still feel bad today I would take action. Let him know just how bad you feel. Men are not always very good communicators when it comes to sharing their feelings, but they do often care. They just show it in different ways. I wouldn’t beat yourself up about how you were feeling yesterday. We all have our ups and downs. When we’re in pain we’re more likely to feel irritable or annoyed. The heat affects my mood. I find it harder to be patient when I’m not feeling comfortable.
May be you are getting dehydrated with the medication. Be careful. Try the local hospice, they have a pain management team. Before I started my treatment programme they helped me a lot. Your gp, oncologist can refer. But I think you can just contact them.
Barb, I can't take those pain killers either! Acupuncture used to help me. Think more about using an acupuncture mat as Sophie posted. Dig yours out and give it a try.
Even if you can't sleep with it, maybe laying on it for awhile will bring some relief.
You could be right about men being from another planet! Seriously though, I have learned over the years how to talk to my husband in a way that he understands. So no "I'm fine" or "there's nothing wrong" because he doesn't get that, and why would he? It makes sense when you think about it. I get a much better response when I tell my husband what I am thinking or ask for specific help with something. Then he sees what needs to be done and responds appropriately.
I’m on the Fentanyl patch as well. I was started on the lowest dose and went up one dose only as well. The first weeks I was on it I really couldn’t say how I felt. I had been on so many other pain killers plus prednisone plus radiation that I just felt bad! Once I was done with radiation and off the prednisone I started feeling better. Now I don’t even know I’m on it, just like lynzer. I love it because I only have to remember to change my patch every 3 days.
I wonder if part of your problem could be low blood pressure? Can you take it? Mine has been running low enough that I have been light headed everytime I stand up. I stopped taking my very mild blood pressure pills and that went away.
But my other advice would be to take a week, don’t do anything but sit in a comfortable chair or nap and read and tell your husband that for your 40th you want to be totally waited on for a week. Let your body get used to the medication that week and since you aren’t doing too much, it could be the lowest dose. After that slowly push it up to what it should be. It just takes our bodies time to acclimate to different circumstances. And drink lots of fluids and don’t get constipated because that will make you feel awful too.
I do wish that you could find the right combo for you because you will feel so much better. That might take some patience while you get used to it and that is so hard sometimes...especially with pain!
My mum takes oxycodone, she hasn’t had fussy spells but was really sleepy until she got used to them unfortunately her pain has increased since she is currently in the woodlands (hospice) to try get the pain under control they did before hoping they do again! Maybe worth a look to see if there are any near you that could help you they monitor your symtems and pain and then swap meds if needed my mum takes ketamine also which has helped at the start but since progression is finding pain relief is no longer working so they are trying to figure out what does! Hope you get sorted soon it’s so horrible to be in pain x
Happy 40th anniversary Barb💐 I hope that you won’t be in pain on your special day. I read from one of your replies that your husband gifted you a big bunch of flowers. So he is a nice guy after all😄. And I hope that you find the right pain medication that won’t give you bad side effects. Wishing you well.
Hi Barb: Sorry you are going through all the pain and reactions. My thought on the meds is that you should ask for a referral to a pain specialist. They can get you sorted out very quickly. I have found out that my Oxycodone is only one percent plus Tylenol. So maybe yours just needs an adjustment. Found that out from the pharmacist. I was surprised. I think your doctor means well but is not well enough versed in meds.
As to men, most have no idea how to show emotion or deal with them. After all they are trained not to show any! Can't imagine how they must feel. We women are just the opposite.
My husband, like yours, tries to connect, like bringing flowers, but his own needs get in the way. Oh well, just my thoughts. Sorry this anniversary isn't so good, however maybe future ones will be better! 40 years!
Wishing you well in both departments. Cheers, June S.
Hello Barb: I understand. Some pain relievers just about knock you out. There must be something out there that gives you some relief. I hope your doctor can keep trying until they find something. I was put on cymbalta for severe knee pain and I felt just like you. Couldn't get off the couch. I went back to tylenol and a pain patch plus something for inflammation which does help some. Not completely pain free but at least I am not in zombie land!
I am saying prayers for your relief. You deserve it. You are so helpful to those of us on this site. --Madlyn
Hi Barb, so sorry you continue to have such bl...y pain issues, it must be exhausting and depressing. If you could just get a pain specialist/hospice? help then that little voice of hope we have inside us will surface again I am sure. As for men I find we need to inform and spell it out then they do their best to help. I think much younger women are probably better at that, certainly than my generation. Happy anniversary, spoil yourself, hugs, Fayx
Barb,I hate to hear you are in pain.In the US there are pain specialists(MDs) who are supposed to be better at prescribing and advising about pain than regular MDs.
I've never tried one but I've read about a lot of them and always feel that when I need them that's where I will go. I'm not sure if you have those in the UK but I'm hoping you do
That is what my onco did when my pain was no longer gone when using 800 mgs. of ibuprofen. She referred me to the palliative care dept. at the cancer center where a pain specialist is there to deal with cancer patients with advanced pain. My onco does not handle that aspect of it. I still see my onco (next week) for my meds and injections and see how I am doing but then I go down to the palliative care dept. to meet with my pain specialist. She handles the pain part of it.
So sorry you are dealing with so much pain. I am a light weight when it comes to painkillers. Maybe you been through this but radiation literally took the pain away. I hope they figure out something.
Can you imagine being hooked on Oxy. I don’t know how people do it.
As I mentioned, they do not really give morphine here in in the US (I got it once during the groin surgery). I am on 40 mgs of oxycodone now and what a relief. But I had another friend who had had stage iii, went through chemo, both breasts removed and radiation and then three years later it came back although she is not stage iv. She was given oxycodone pills like myself but she said she could not tolerate them because they made her dizzy and nauseous so she didn't take them unless absolutely necessary.
I do not feel sick on them. On in the very beginning when the pain specialist put me on them, I got that "nice feeling" which is why for some they are so addictive. But after a week, that "nice feeling" went away and now they are just more pills I take.
We have major major problems with opiod addiction here in the US. More than any other country and what happens is these people (and believe it or not middle aged women are the largest group of addicts) need to keep taking more and more to get the same feeling and then they have to keep taking them bc the withdrawals make you really sick.
I remember about two years ago, a man and a woman (both opiate addicts) went into a small neighborhood pharmacy, killed the two customers in there plus both pharmacists to get their hands on the percocets (which I get). Thank God they found them and they are in jail.
That is why the laws were changed and doctors, even if you really need them, do not want to give them to a patient bc the govt. is watching. Only if you have advanced cancer, is it no longer a problem.
But like with any medication, we all have different effects. I have no problem and sometimes they give me a little burst of energy and I can't take them too late at night bc they keep me awake rather than sleepy. But my friend had a hard time them with like you and avoided taking them unless she was in very severe pain.
She had a dinner party and late that night after everybody left and she was feeling severe pain, she went to her medicine cabinet in her bathroom and they were gone. One of her guests had stolen them. Rule no. 1 in USA, never put them in your medicine cabinet.
Yeah, I just noticed. A GP (general practitioner?). They would NEVER EVER be allowed here in US to write out those kind of drugs. My onco referred me to the palliative care dept. of the cancer center where a pain surgeon working ONLY with cancer patients helps determine what type of pain meds work best for you. My onco does not even prescribe them. The pain specialist does. Not sure if they have that in UK.
Hi Barb - I also experienced many side effects with oxycodone and some of the other pain med options, but after seeing a pain management specialist found reliable relief. She recommended fentanyl patches and we had appointments every few days to find the right level/number of patches as well as dilaudid pills only as needed for breakthrough pain. I have extensive bone mets (hips and pelvis) as well as liver mets. One hip required radiation for nearly a month. The patches have been life changing and improved my quality of life. I don't feel terribly sleepy or disoriented. I highly recommend giving the patches a try, and the steady dosage reduces the highs and lows of pills. An added plus is avoiding nausea that can often accompany pills. Wishing you all the best.
Search infrared sauna in this group...I use one for pain but again I don’t know your situation but you may want to research...your regular onc may not understand
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