What a crap four days I have had!!! Pain bad head wanting to do things pain going "err not today Josephine" Not my actual name but one my dad gave me when I was little.
I think after crying all day and writing myself off as knackered it is time to get a grip and get moving on a way to improve my lot a plan B. I WILL go back to my Dr and pain clinic. I will sit repeat my medical history AGAIN describe a "bad day".
Hopefully plan B will not include a weekly course (which I cannot commit) due to pain.
Hopefully I will NOT have to do breathing acupuncture or aroma therapy or learn about the medication types etc etc etc😕😕 Just sort my Medication out please after over ten years on the same stuff i still get more bad days than good. I want something to stop the pain offer a break from it but do not what to spend my life high as a kite!!
So do any of you have a plan B that worked?? Is there any point in going back? Or do I carry on waiting hoping that any OK days will be enough to stop me feeling so trapped and frustrated the rest of the time ANY thoughts please 😬
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Winniepooh1976
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Hi, crying as I type and to start off do not give up. Cry but don’t give up, you are stronger than you know. Just writing that means pain does not define you. You are doing all the right things am sure. I have lived with this thing called pain since I was 10 and am now 45. I have tried so many plans and there is one plan that helps and I hope it helps you and anyone who reads this. My kind of pain I was born with and will die with, you would think life would just not add to it but in 2009 I suffered a serious back injury at work as a nurse. I have recently had hysterectomy because of pain and I am a Sickle Cell sufferer. The list is long but I would stop there because PAIN IS PAIN regardless.
Now to my plan which is not B or C but it helps more than any medication, therapy or health professional.
My plan - is learning how to live with the pain. The body gets used to the meds, you can get as high as a kite and still be in pain. One day is amazing and next minute hell breaks loose and you want to just give up but somehow you survive it. It’s like a rollercoaster that you never get off. No one understands you and you get snide comments from people even those close to you.
Pain is not just physical and I don’t need to tell you that but you have to learn to live with it. Our bodies are amazing, they may broken but they are the best machine on this earth. It gives back what you give it. All these medication we take are supposed to mimick what is already in us. Am not saying do not take the medications far from it. But it is your body work with it and you will get a pay back. Learn to live with your pain, the few and far between good days really enjoy them do something fun, I said fun not crazy because the silly pain is just waiting to pounce and ruin it. But start enjoying little things that don’t mean anything and on the bad days go through them and look forward to the good days. Re-educate your mind and your body will soon follow. I was in excruciating pain last night, did not sleep for 3 nights but today (Sunday) is a good day and I laughed so much and enjoyed every moment of it. I don’t know what tomorrow will bring but whatever it is I will enjoy it or get through it. Fear is one thing that makes anything worse, we know what the pain is like so as soon it shows it’s ugly face we send a message full of fear and we get an immediate response. What if we retune our minds, instead of sending fear message we send a message of hope, of resilience, positivity. I won’t guarantee that it will cure your pain or even reduce it but you get back control and learn to live with it.
Others on this amazing platform may have the answers that you want but my 2 cents is JUST LEARN TO LIVE WITH IT. It takes time and patience but worth a try. It makes the meds and therapies work better. Life is not fair but know that it’s a ride that has good and bad, it is up to you to choose it’s impact on YOUR life.
Thanks for post below, I have to agree with live with it. I was lucky enough to live my early adulthood without intractable pain and disability. We all must learn to live with the pain.
Thats said finding your right med mix will help to stay functional whatever that looks like for you. My partner can easily reflect to me the 2-4 pain level I operate in as 'normal' as opposed to the no inteligible speaking high level one in which I simply cannot even really describe in numbers but you ll know it if you get this.
For me medical means is finding the sweet spot where you can concentrate enough to function (maybe a 3 - 5 in pain number scale) and do those things that help you to improve, like eat nutritious food but are not over medicated. Reflecting back to you your post yes it certainly sounds like you do need trip back to your primary medical care provider to talk it out/ swap out the meds. If only to have a 'plan B' on hand. Remember they have not experienced the pain and unfortunately we must be our own best advocates. You will know the appropriate combination of medicines and adjustments to life. An intractable pain expert warns not to rely on one medication but to have a strategy. A good medicine combination, It wont take the pain away but if it's right you ll be functional to do what you need to do. I often wish I had a magic carpet to whisk me around on bad days including to doc appts.. . Sadly that remains a fantasy... Best of luck and wishing you low pain days and that your treating docs are good listeners going forward.
Hi again, you mention are you in process of going off a medication that helped you that you were on for many years? Was this your own plan driven by your own pain management goals or was this someone else's idea? Either way it sounds like you need to see your pain doctor as soon as possible to talk out the options. Good luck
It's great you are feeling more positive and determined ... so please don't give up hope. Tell your Gp how you feel about the meds and everything else. There has got to be something else else to try which won't make you feel like you're in a stupor. You don't say what's the cause of your pain or the meds you're on so can't offer any advice there, but being positive as you are now will help to get things rolling again. So go for it...
I'm a great believer that certain foods and the type of diet we eat does have an impact on the body, sometimes increasing pain levels.... so maybe it's worth looking at that too.
Also, my pain psychologist suggested imagining the pain as a grumpy kitten (I love cats), lashing out because it's tired and hungry and thirsty. I've found that caring for it (feeding myself, drinking enough, getting rest, etc.) has definitely helped, but I think the thing that's helped the most is that I no longer (well, not often, anyway) think of the pain as my enemy. Instead, it's a small, vulnerable creature with no understanding of the distress it's causing, so I can think of it as something I have to carry around, but which I want to care for. It really seems to help!
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