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Aug 18, 2017 10:57 AM

Having a pretty rough night/day. I am usually able to push through the day whether I slept during the night or kept awake by the pain. Opioids seem to work short term but they don't seem to help over the long haul. So I'm not on any at this time, though right now I kinda wish I had something for breakthrough pain. I'm taking Nucynta which seems to take the edge off and at times with physical activity take away most of the pain. However when it's this bad it doesn't seem to help. I can write down how I'm feeling but it's pretty difficult to carry on a conversation (yeah, pain is that bad. A true 8/9 out of 10). I'm not complaining, as I've accepted these circumstances. I'm thankful for the good days and am always happy on the outside. Just sometimes this gets to me but I don't let anyone (family and peers) know what's going on. Doesn't seem like they understand and my parents think I'm abusing meds even when I'm not on any opioids. Somehow they think chronic pain and opoid epidemic go hand in hand... ugh. Usually I can ice of heat my leg but nothing is helping. I'm open to suggestions. I've tried walking, heat, cold, wearing long socks and long PJs, massage, positive-thinking, deep breathing, and calming meditation. A lot of that helps with the anxiety which comes hand in hand with severe pain.

What works for you when you're having a really bad pain flare-up?

I have been diagnosed with RSD/CRPS (phase 3). Been living with this since 2006 but it's spread from a small spot on the ankle to the entire limb and part of the other. Back pain is due to three spinal surgeries to implant spinal cord stimulator. First two didn't work due to lead migration and paddle placement and painful stimulation. Currently a beta tester for new Boston scientific spinal cord stimulator.

Aug 18, 2017 11:04 AM

Follow-up...
My doctor doesn't believe the pain is bad as I say it is. He doesn't seem to have a suggestion outside of saying "it's just pain, it won't kill you". I've tried PT, Dry needling (I don't recommend this for nerve pain, it made mine worse), and the other things listed in the original post.

Aug 18, 2017 11:10 AM

Hi πŸ‘‹πŸΌSorry your in such a bad flair up, Maybe when you can talk to the doctor about just having some medication to take when the pain gets this bad just so you have some. You're not complaining sometimes it helps to come on here and tell people how your feeling I've done it lots of times. Sorry your family doesn't give you much support I have had lots of problems with family not understanding what I'm going through.... I don't really have anything to suggest others than the things you've already tried, I really hope the pain eases of a little bit soon. I will be thinking of you and if you ever want a chat then message me πŸ’•πŸ˜˜

Aug 18, 2017 11:11 AM

My doctors like that too she never believes I'm in as much pain as I say I am and she always says "well it's not dangerous so you can live with it" πŸ™„

Aug 18, 2017 11:15 AM

Thank you LittleLola. I appreciate your words and insight. I haven't seen a way to message individuals on the app, you can only post to a discussion, right?

Aug 18, 2017 11:17 AM

Well ScruffyCub...I've decide to say it like I see it and screw being political correct...your doctor is an idiot or a liar or both....chronic pain can kill you in more ways than one...my comment won't help your pain, but neither will his abuse, and that is mental and emotional abuse...Id tell him where to get off and that you're reporting him to every medical organization or oversite place there is to try and get his license to " not treat but rather torture" his patients...so he can't continue to cause people to live in hell... this treatment won't stop until we all do this and get control back from the govt and medical industry... We hire them to do a job,....help us feel better....you wouldn't take this treatment from say a maid...that trashed your house instead of cleaning it...you wouldn't thank her ever so meekly, pay her and apologize for having your house to clean... sorry I made it so hard for you to "f" me....

Aug 18, 2017 11:17 AM

I have just tried to send you one, Your using the old version of the app you need to download the PainCompanion app 😊

Aug 18, 2017 11:20 AM

@BrokenBlosems I have had lots of doctors tell me that they can't help me and that the pain can't kill me!

Aug 18, 2017 11:37 AM

@BrokenBlossems I told them that you can't treat me like this..... I'm on a waiting list to see a pain clinic but it's a 2-3 month wait and from what I have heard they probably won't prescribe me anything as there main approach is CBT πŸ™„

Aug 18, 2017 11:40 AM

We'll good for you! Now report them! I'm going to start a new thread on this... don't have time right now ...dealing with obligations...

Aug 18, 2017 11:42 AM

I can't report them there's been so many! But I will start doing if it happens again πŸ’•

Aug 18, 2017 12:01 PM

Well as of right now they DID get away with treated you that way...did you pay the bill? How have you shown them "they can't treat you that way" and what does the number of them have to do with it...of course there is going to be alot if them...this is the prevailing attitude in the medical industry now...and because everyone is so scared to stand up and be counted...there is going to continue to be alot of them...there is no magic bullet ( or bomb) rather that is going to deal with them all at once...
I don't care what country we all live in...there has been revolutions in every country on the globe...and don't think Im a nut for using the word revolution...that's what it's called when the people stand up to their govt and say NO MORE! We will not live under your tyrany...and I can't think of a better word for it ... the peoples of this earth have always fought against cruelty, and injustice and causing 1000s probably 100s of 1000...pain and suffering...our "talking" it to death isn't going to do a damn thing to change what is being imposed on us...it isn't going to give us our lives back....sorry gotta go....13 puppies don't understand I'm in pain...got to get about the business of getting thru another day

Aug 18, 2017 12:07 PM

I didn't pay the bill as I'm in the uk so it's free, And we don't get letters with the names of the doctors I have seen so I can't remember there names now! And I was stupid for not standing up for myself more but I'm so exhausted that I didn't have the energy to make a formal complaint as here in the UK making a complaint against a doctor is really hard! But from now on I will do.

Aug 18, 2017 12:11 PM

Not stupid...just bullied beyond our breaking point! I just know...no matter how much pain..
If we can sit and type on this thing we can type letters and not just to doctors...how about newspapers and radio stations and tv? They certainly get their message out there...and where has our voice been...here and places like here are fine...but it's not helping to change anything...

Aug 18, 2017 12:34 PM

Yes I know, I'm going to start standing up for myself πŸ˜€

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