I am just wondering what you find the best way to cope with flare ups is?
Earlier today I went to the cinema with Peter and about 10 minutes after sitting down was really sore.... I managed to ignore it, well tolerate it, until the end of the film. When I stood up I just screamed in pain without meaning to and spent the next 10 minutes or so to get the 20 meters to the car... with every step I whimpered or screamed. It was utterly humiliating.
I asked Peter to drive back home a long way to give me time to recover a bit before attempting stairs at this end, but even 20 minutes driving was not enough. I spent 15 minutes getting from the car to the front door literally crying all the way. It is 3 hours since this began and it has not got any better.
What can I do? Painkillers do not help. The heat pad is helping a little but not massively. I am embarrassed and ashamed and just want to cry non stop.
Go to the hospital! It is the only thing I can tell you, my friend of the pain pills do not work! Pain is a warning that something is wrong, if your pain is that intractable, it needs to be medically addressed! I am not a Doctor, but am sending you there if I can!
I think that is very wise! I think the first thing that they need to address is all of this bleeding, my God this has gone on for so long with you, I do not understand this on-going delay! I don't need to tell you that I'm not a Doctor, but have to for other reasons, I just know how long this has gone on, and how bad it is!
Glad to know that they got you all of the necessary Doctors in place so quickly! I am really impressed with their speed! Now they need to get moving! Please do not hesitate to go to the hospital if your pain is that bad. They may be the key to getting this sorted out if Scottish medicine is so efficient!
I care for you deeply and want you to get this addressed!
Thank you. I will do what I can to get it sorted as soon as possible. I have literally in the last few minutes began feeling a little better. I am off to sleep in a few minutes I think xx
Mike I’m so sorry to hear that it is so bad. If the heating pad is helping some you might try a hot shower or bath is you think you can stand it. The tub helps me a lot even if I have to have help getting out. Please don’t be embarrassed or ashamed its not our fault we are sick.
Lots of love mike.
Becca
how are you feeling today? I got to read your post last night, but couldn't respond. Literally the words didn't wanna go from myhead out where they make sense.
I mainly wanted you to know, that when I get a major flare-up, the pain maeds are completely ineffective, as they just make me sick. I take both Norco and Percocet for pain at pretty high doses. During times like you had yesterday, I wish I could give you a solution, but there really isn't anything I can offer. I'm sure you do the obvious things, with no avail.
I myself am having a day like yours today. I am trying just not to call my last clients of the day to reschedule, cuz I really hate doing that, but there is no comfortable place to lay down in a salon, beyond the mausseus table.....oh that sounds heavenl!!!!
anyhoo, I'm rambling, I mainly just wanted to see how you are today.
I really really hope this message finds you feeling better!!!
Try talking to your Doctor about taking something like Phenergan 30-60 minutes before taking the codeine, or perhaps, change to morphine. I have serious SE to codeine, have to take Phenergan before taking morphine, but it works! Took me a lot of suffering to figure it out.
Hey there, I am feeling a little better today. I feel twice as bad as I do on a normal day but ten times better than I was yesterday. I know exactly how you feel when you say the words did not want to go from your head. I get like that all the time. It is so frustrating, especially when people think you are not making sense on purpose when in reality you are struggling really badly with making sense and it is sending you up the wall anyway.
Just a sidenote... how can you stand being massaged. I find it utter agony having someone even attempt to give me a massage. You must be either very brave, or experience things in a slightly different way than I do.
I had a hot shower earlier, it helps but feels like it is setting me on fire all at once. The heatpad is the most wonderful invention. I wish I had a heat suit that I could climb into and set to work on different parts of me (or better still automatically respond to pain). I try not to be ashamed and embarrassed but I cannot help it. It is so humiliating for me to ask for help. I want independence but know that realistically independence will lead to me being injured more. It is not just physical health than I need looking after with and with the depression and self harm I feel even more embarrassed.
I replied below about how I am feeling now just a min ago so I will let you read it there. I am not sure when my next appointments are but they are in the pipeline so to speak. I had another bad moment today (did not harm myself) but adamantly refused to go to see a doctor because I do not want them wasting money on someone like me when they have worse off people to be looking after xx
Mike have you tried having a massage from someone who works with people like us? I won’t go to someone who doesn’t know how to deal with us cause they can make it worse. The last time I had one it helped and I need to go again but it’s expensive.
Becca
I have not... if I can find the money to I will ask... I know that the physio therapy place at the hospital on the island is a self referral and they do massage so I might ask if they know about fibro and see what they say xx
Mike I just now read your post. Can you bring a heating pad that you heat in the microwave when you go out in the car? Can you handle ice? If so, you could bring ice packs for your worst spots.
Sounds like your body is telling you that it won't take outings as long as you went on. Why not try doing shorter excursions? Maybe you can handle them better.
Mike, it concerns me that you push aside your own medical needs saying that others need the doctor more. I don't agree with your conclusion and here's why: what if your pain is something more than fibro? SK has already pointed out quite effectively to me that autoimmune diseases are often hard to diagnose at first but are oftentimes very similar to fibro in symptoms AND can also co-exist with fibro. I think you need to keep an eye on this, with more tests. Yes, it does seem that some folks reach the high pain level with fibro but what if it's something more? If so, then you need immediate treatment. So I think you really do need to keep up with the doctors. Just my two cents but your pain level is through the roof. Tina, this applies to you as well, come to think of it.
I cannot handle ice at all... it makes me contort in pain lol. I have a few chemical heatpads left, that work when the packet is opened and they are exposed to oxygen in the air so I have packed a few in the car. I think shorted excursions are in order if I am honest.
You are going to tell me off for saying this but even if the pain is something more I do not deserve to waste the doctors time. There are other people who are good people and lead good lives, I am not a good person so they deserve to be seen before me. I will end up seeing the doctor because I will be bullied into going by Peter :( xx
Do you have other issues around cold things? Do your hands turn white or purple from the cold?
Okay, make sure you travel with those heat pads then. And try the shortened excursions. Why torture yourself if you can't take the long ones?
No, Mike, I'm not going to tell you off. But I know it's the abused person talking when you think you're not a good person. Those of us who've been abused struggle with believing that we're good or good enough. I believe that given some time with a good counselor, you will start to see a different perspective on yourself. And i am VERY proud of you for resisting the urge to self harm. That in itself is quite an accomplishment.
Good for Peter for making you see the doctor. He SEES the good in you and believes in you. Do you think that Peter has such bad judgment that he'd be attracted to a bad person? He sounds far too mature and good of a person himself to make that sort of choice. So if you believe in him, believe in his belief of you.
I have to believe in him because he is the only reason I am still alive. Before I found this site I had tried several times to end my life, most of them before I knew Peter. Although I am not out of the woods yet in terms of wanting to die I spend less and less time feeling suicidal.
As for the cold, I do not have any other issues with it other than it hurts me. My fingers stay the same colour and so does the rest of me xx
.SK- I have gone the phenegran route already. But thanks for the suggestion.
Mike-I cant handle the massages. I used to but no more. No ice for me either. I was curious, did the sucidal thoughts and things come from your pain? If so, I wanted to tell you that I have been suicidal myself solely because of the pain I go through. Its a hard road to be on. Especially when yours seems to be so much worse than others. No relief found. Only when blessed sleep comes-as rarely as it does, you can find escape
Well, then it sounds as if you are definitely getting stronger mentally. Someday you will fight back against the "I'm bad," messages. It'll come, Mike. Give it time. And Peter sounds like the find of a lifetime. Bless him, what a wonderful guy he is too.
I was wondering if you have Reynaud's Syndrome, due to the issues with ice and cold but I think the fingers turning white then blue then red is a tell-tale symptom. So it's good that your fingers are still staying nice and pink (tho cold!) :-)