1. < Fibromyalgia

Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Alumna Mentor @sandytoes14, Aug 19, 2019

Usually I am not one to share much of my personal story but here goes...I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing...I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 2, 2019
In reply to @parus "Greetings everyone. I have been scarce here at connect as of late. I recently had sedation..." + (show)
@parus

Greetings everyone. I have been scarce here at connect as of late. I recently had sedation for a bladder biopsy a couple of days ago. I have had this raging sore throat and the feeling of phlegm stuck in my throat. I finally took a flashlight and took a look. OMG they murdered part of my uvula!!! Necrosis of my uvula. I have also been experiencing so much more pain which is worse today. Now a severe sore throat and knowing part of my uvula (little hangy down thing in the throat) will rot off-I could choke to death and no one would know why. I requested to have the biopsy done under a local and it was not allowed. I know how the body is treated once the patient is out. A biospy of my bladder has cost me part of my uvula. Will this cause other problems? Opposite end of the poles...laughable if it were not so painful.

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@parus Well, dang it!!! Like you don't have enough going on, right? I wonder if it is temporary trauma due to insertion of trach tube, and will clear up? Does gargling with an antiseptic mouthwash ease any of the discomfort, and allow for healing? Over 20 years ago I had one wisdom tooth extracted [why do all four when only one was an issue??] They wanted me to do a general anesthesia, and sign off that they would not be responsible if they broke my jaw during extraction. Uh, no! I told them a local only, and indeed I would hold them responsible if they committed that act!
Ginger

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 2, 2019
In reply to @lioness "@ gingerw THe article I sent about the brain connection and fibromyalgia said that arrangeing flowers..." + (show)
@lioness

@ gingerw THe article I sent about the brain connection and fibromyalgia said that arrangeing flowers they found beneficial for us as well as any art forms. So you and Parus are right there for relaxation it takes our minds of are pains.

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Shortly after my SFN diagnosis, my father, who I love to pieces, has personally delivered me flowers every two weeks faithfully. When he is out of town and misses, he says, "you should really fire that flower guy, he's slacking!".

I take pride in arranging those flowers and they are therapeutic. I'll be sure to tell him that I shared this. He will get the biggest kick out of knowing he's helping me more than he already thinks.😊
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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 2, 2019
In reply to @rwinney "Shortly after my SFN diagnosis, my father, who I love to pieces, has personally delivered me..." + (show)
@rwinney

Shortly after my SFN diagnosis, my father, who I love to pieces, has personally delivered me flowers every two weeks faithfully. When he is out of town and misses, he says, "you should really fire that flower guy, he's slacking!".

I take pride in arranging those flowers and they are therapeutic. I'll be sure to tell him that I shared this. He will get the biggest kick out of knowing he's helping me more than he already thinks.😊

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Sounds like a pretty awesome dad Rachel @rwinney!

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Mamacita, Alumna Mentor | @mamacita | Oct 2, 2019
In reply to @parus "Greetings everyone. I have been scarce here at connect as of late. I recently had sedation..." + (show)
@parus

Greetings everyone. I have been scarce here at connect as of late. I recently had sedation for a bladder biopsy a couple of days ago. I have had this raging sore throat and the feeling of phlegm stuck in my throat. I finally took a flashlight and took a look. OMG they murdered part of my uvula!!! Necrosis of my uvula. I have also been experiencing so much more pain which is worse today. Now a severe sore throat and knowing part of my uvula (little hangy down thing in the throat) will rot off-I could choke to death and no one would know why. I requested to have the biopsy done under a local and it was not allowed. I know how the body is treated once the patient is out. A biospy of my bladder has cost me part of my uvula. Will this cause other problems? Opposite end of the poles...laughable if it were not so painful.

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@parus, bless your heart! I would be so frustrated right now. There just are no words. Where do you go from here?

Lots of virtual hugs and prayers that you get better very soon!

Mamacita

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Oct 2, 2019
In reply to @mamacita "@parus, bless your heart! I would be so frustrated right now. There just are no words...." + (show)
@mamacita

@parus, bless your heart! I would be so frustrated right now. There just are no words. Where do you go from here?

Lots of virtual hugs and prayers that you get better very soon!

Mamacita

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@parus, Oh my, I have not seen that word, uvula, or thought about it for over 50 years. My first year out of college, I got a sore throat and a cough. After fighting the freeways in LA I arrived at a specialist's office to have my uvula removed and tested. However, once they hogtied me to the chair because of my over the top gag reflex and the doctor began the removal, I swallowed it. Everyone just stood around....hiding a smile.

I am not going to ask how things turned out except to say that I am just one of a group of colleagues wishing you health and wellness. Hopefully, my little memory will bring a smile to your face. Chris

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Parus | @parus | Oct 4, 2019

@artscaping I am not finding anything about my current situation to smile about nor your words. That kind of treatment is abusive!!! Nothing funny there.

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Parus | @parus | Oct 4, 2019
In reply to @gingerw "@parus Well, dang it!!! Like you don't have enough going on, right? I wonder if it..." + (show)
@gingerw

@parus Well, dang it!!! Like you don't have enough going on, right? I wonder if it is temporary trauma due to insertion of trach tube, and will clear up? Does gargling with an antiseptic mouthwash ease any of the discomfort, and allow for healing? Over 20 years ago I had one wisdom tooth extracted [why do all four when only one was an issue??] They wanted me to do a general anesthesia, and sign off that they would not be responsible if they broke my jaw during extraction. Uh, no! I told them a local only, and indeed I would hold them responsible if they committed that act!
Ginger

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@gingerw Yes, once your under you cease to be human. Anything goes wrong they are not accountable as the patient can prove nothing. I did finally shake the bushes enough to get a call from an anesthesiologist who said I could come in to have it looked at which I am physically unable to do right now. He did admit it rarely happens. All I know is my teeth, throat and upper palate still hurt like crazy! All of this for a simple biopsy of the bladder. Typically it can be done without sedation. Not as much money in it and an inconvenience. I am sure there were reasons other than what I know. So I am at my wits end at this point. To make matters worse the results from thyroid panel showed a TSH of 3.5 which is in the normal range although high normal. Explains why I suddenly gained 5 lbs and bottomed out prior to the surgery. Now this on top of everything else has me at my wits end. Not even capable of having my grandson over to play. The only reason I keep trying.
@sandytoes14 I know you understand this flare thing as many of us here. No matter what we try nothing helps. All we can do is hope it will get better. I could easily sing bass in a quartet. Sad attempt at humor.

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Parus | @parus | Oct 4, 2019
In reply to @gingerw "@parus Well, dang it!!! Like you don't have enough going on, right? I wonder if it..." + (show)
@gingerw

@parus Well, dang it!!! Like you don't have enough going on, right? I wonder if it is temporary trauma due to insertion of trach tube, and will clear up? Does gargling with an antiseptic mouthwash ease any of the discomfort, and allow for healing? Over 20 years ago I had one wisdom tooth extracted [why do all four when only one was an issue??] They wanted me to do a general anesthesia, and sign off that they would not be responsible if they broke my jaw during extraction. Uh, no! I told them a local only, and indeed I would hold them responsible if they committed that act!
Ginger

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@gingerw BTW...did they pull the one tooth under a local??? Forgot to ask in my first whining post. I continually try to not be so critical of the medical profession. It is hard enough when I need an interpreter for their English much less the medical terms. All of this has me in pretty much PTSD and fearful of everything and everyone. I know I do not want to have general anesthesia again. I did ask the physician calling that it be addressed and maybe they could be more careful in the future.
I once thought highly of the medical profession. Saddens me deeply.

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1 reply
lorirenee1 | @lorirenee1 | Oct 4, 2019
In reply to @rwinney "Shortly after my SFN diagnosis, my father, who I love to pieces, has personally delivered me..." + (show)
@rwinney

Shortly after my SFN diagnosis, my father, who I love to pieces, has personally delivered me flowers every two weeks faithfully. When he is out of town and misses, he says, "you should really fire that flower guy, he's slacking!".

I take pride in arranging those flowers and they are therapeutic. I'll be sure to tell him that I shared this. He will get the biggest kick out of knowing he's helping me more than he already thinks.😊

Jump to this post

@rwinney You have one special dad. Mine died almost 50 years ago, and I think about him just about every day. I wish you well. I read of your struggles all the time, and I pray for your wellness. Just so many kind people here. Lori Renee

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 4, 2019
In reply to @lorirenee1 "@rwinney You have one special dad. Mine died almost 50 years ago, and I think about..." + (show)
@lorirenee1

@rwinney You have one special dad. Mine died almost 50 years ago, and I think about him just about every day. I wish you well. I read of your struggles all the time, and I pray for your wellness. Just so many kind people here. Lori Renee

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Thank you very much. I'm with you as well and sorry about losing your Dad so long ago.

Don't be surprised if I randomly post a picture of flowers...they will be for you.

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