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Just woke up after I realized I only got 3 hrs sleep not 4. Excruciating occipital headache. It's time to tell my story. Will do it soon. I'm so exhausted. Yes, I have lidocaine cream 4% an 5%. I have 5% lidocaine patches as well. Everyday I scrape the patches with my fingernail with 4% lidocaine cream mixed in just to rub it on affected areas of chronic pain where the patches won't stick. Half of day later I washould fresh and do it all over just to make sure I'm not overloading the lidocaine. I've tried everything. So tired and exhausted and suffering. Thanks to you both

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  • Posted

    Thank God I'm on permanent disability but I'd much rather be a normal healthy or somewhat healthy person. I see them everyday passing by my house, mowing their lawns, and leaving home with their families. I am married and have to watch my wife leave without me all the time. I wave bye from my garage with a totally broken heart. It even happens when we have guest or family. Then I'm alone and fighting back the tears. My social life is doctor's appointments. It ain't good nor healthy this way. Always suffering. I beg for help everyday to no limit. Nothing changes except for increasing pain. Like I said to my wife before she went to bed, I'm not asking for attention just answers. Still though I'm fighting.

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    • Posted

      Hi I am so sorry you are going through this. My heart goes out to you. I don't know what state you live in I live in CA. where you can buy cannibus products legally. My daughter bought me some 10 mg. cookies and some 20 mg. gummies. That us a very low dose of the THC cannibus but they really help with the pain and sleeping. I ate one of the gummies and a half a cookie and slept till 7:00 this morning. Before taking these U was waking up at 2:00 or 3 in the morning with the pain. It doesn't make me loopy if I only take the 10mg cookie or gummy but if I take the extra 5mg. I really sleep good. I hope this will be helpful to you. I have never smoked pot or used cannibus products before this but I am so grateful that it takes away the pain quite a bit. Praying that you can get relief soon. Don't give up! Let me know if this was helpful to you.

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    • Posted

      I live in SC where it's illegal of course. I wish that I could move but I can't. Of course I'm on zanax, tizanadine, hydrocodone, gabapentine. My case is extremely severe and getting worse. My left ear is so red, deep red and throbbing all the time. There's much more. I'm out of answers. Thanks debbie.

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  • Posted

    Can you get out to PT?  It does help and it gets you out of the house and around people.  I find that even when I am really down and depressed just going makes me smile.  My place has a nice heated pool, that would be really nice to just float in and try to coax some movement out of your achy joints, wouldn't it?  

    I have tried the lidocaine patches on my CRPS area and it doesn't work.  My super-duper prescription cream with everything in it doesn't do diddley either.  It has a prilocaine/lidocaine base.  

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    • Posted

      I wish that I could. I even had to miss my only daughter's college graduation today that was 2 states away. I am completely frozen in chronic pain and muscle spasticity. My legs are okay except spasms in left. It's my upper body, neck, and head. My complex diagnoses are baffling the doctors. My head is mounted surgically to where I cannot move it at all and the chronic pain won't cease. I can even sit. I cannot stand for long and I can only lay on my right side. Over 2 yrs now stuck on my worn out couch like this. Occipital and trigeminal neuralgia and CRPS type 1. This is a desperate situation I'm in and it's progressing. Meds are running low and without refills. Damn these new regulations. Nothing is really working anyway. Very bad days and months have goNE by with no hope in sight. No good news here tonight.

      Thank you Anne

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  • Posted

    Well, I guess we really are your support group, that's a role I don't mind.  I have been getting more active in the chronic pain movement against this fake opioid crisis and how it is victimizing the chronic pain patient population.  My credentials at least carry a bit more weight with lawmakers when I say something.  But, things have really gotten out of control with the tightening regulations, pain patients are being abandoned and while some of them turn to the street ending up as overdoses, others are turning to suicide.  You know how you feel with your meds running low, imagine having no avenue left to turn to?  I am ghoulishly hoping that Steve Scalise, with all his operations and hospitalizations after that terrible shooting will be a bit more understanding about our issues as he is living them.  I highly doubt he went home after this last surgery with the recommended 5 days only of pain meds LOL.

    You mention overloading with lidocaine, do be careful with that, it truly is possible to overdose on all the topical and IV anesthetics.  They then do nasty things to your heart rhythm, or can cause a seizure. Just for grins, I looked up the maximum doses on some sites and I am sure you are way over them, as I was when I was using patches for back and neck pain.  They say for the cream, no more than 5 gm at a time, for a total of no more than 20 grams in a day. Or, if you are using patches no more than 3 patches at a time for 12 hours in a 24 hour day. If you combine both than the totals for each are lower, ie you can use 2 patches and 10 total grams cream.  LOL I guess I should have had many many grand mal seizures as I regularly walked around with at least 5 big patches on, oh and used cream on places the patches didn't stick to. I was much more serious about IV toxicity guidelines and never went over those, but I never trusted that the patches actually put out as much as they say.  I also think there are too many factors that affect how much you absorb, like if you sweat, or have lotion on, etc.  Anyway, the warning signs are feeling funny around your lips, ringing in your ears, feeling light headed.  If you ever feel like that, rip off all your patches, wipe off all that cream pronto.  Be careful, but I do believe that the guidelines are way too low. Hope you are having an OK day, Rocky!

    Lynn

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    • Posted

      Lynn, everywhere I have described on on head (after shaving it), neck, face, and jaw I wear 24 hrs a day. 4 patches cut to fit. I'm super extremely miserable without them. The risk is something I have to take. The cheekbone one is pretty close to my left eye. Without patches I wouldn't be able to, well say say, go on. Occipital and Trigeminal Neuralgia would go to another level that is beyond any pain scale. Opiods do not help. Antii seizure med are not effective for me for these conditions. Believe me, I have tried everything. Every cream that I know off online and prescribed by pain physicians. Any the muscle spasticity in my neck and left arm is not responding to muscle relaxants. Inflamed red left ear I put Aspercreme and Aspercreme with 4% lidocaine to help with this. And of course I wear a blue latex tight fitting glove 24/7 on my left hand. My right hand is slowly but surely catching up. I can hardly even bend or raise my left arm. I made it extremely clear to the pain management doctor at MUSC yesterday that I cannot do PT in this condition mostly because of the inability to move my head because of the device that was surgically implanted due to the craniovertebral instability. I have constant muscle spasticity in my neck and if I attempt to move it them spasticity gets extremely worse. Most of this is on the left side. As soon as I awake and start to rise all of this starts and stays until I try to sleep a few or slightly more hours in the early hours after midnight. Everyone that I have seen, and there has been many, have no answers.

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