Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@12061948

Great! my GI dr just told me take daily. It’s completely safe. Does not enter the blood stream etc. never know what to take anymore. I’m so confused
Neuro dr says I have Tardive dyskinesia. Which can cause stiffness and slow motility it’s a reaction to certain drugs. . Only drug I took 3 times in a years time was cipro. First 10 days of pills. Then few months later in an IV. WHICH THEY REMOVED RIGHT AWAY BECAUSE I WAS HAVING A REACTION. RED HIVES VEINS TURNING RED IN JUST SECONDS. then several months later in a nasal wash. For sinus infection. Had body tremors after 3 days so stopped it. It’s been hell since 2014.
Pain all over my body. Nerves muscles skin. Hives. GI ISSUES.
Guess I’ll look at the fda warnings on miralax.

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Try plane unsweetened dietary fiber after every meal. Along with an occasional does of generic miralax works for me.

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@joannemaisey

Hi I have constant facial/nose pain for 15 yrs which is getting worse. This happened after extensive sinus /nasal surgery. Has anyone been diagnosed with Empty nose Syndrome but have the major symptom of trigerminal pain.Thanks Joanne

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No I do not have empty nose syndrome but have nose/facial pain as well. The nose pain started over a month ago. I didn’t run to dr right away because it started off and on and I thought it was referred pain from an extracted tooth- pain got worse and like a fool I waited over a week to see an ent. He checked up nose and doesn’t know why the pain. Thought maybe nerves. But it isn’t fitting. 2 weeks later I see another sinus specialist and he said he doesn’t know why my nose hurts and said I could get a scan. I just got one today. I am finally on an antibiotic Incase it was something but feel like this has gone on too long. I got it from another dr. My nose has been acting weird with sensations. It hurts and I am freaking out. I will get results of sinus scan on Monday.
Anyway- I am thinking of going to Mayo Clinic to get answers on my nose pain. I am angry at myself for letting it go so long- but then when I did go to the “specialists” they didn’t treat it. It hurts! I need help!

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@dreamer63

Hello..thanks for the warm welcome.
I'm 63 yr old dreamer of being pain free some day…i have pain 24/7…intensity goes up n down throughout the day. I have many diagnosis that has brought me to my knees with pain..litterally. it's been ongoing for long time. Was forced to leave nursing after 25 years due to my health. Was very active prior to my disability..Have had numerous surgeries….hoping to b able to converse with other people that are in chronic pain n can relate .Dx's..arthritis..sm nerve neuropathy..pelvic floor neuropathy 2nd to pelvic surgeryx3 made worse by each surgery…left with mesh to keep things together but made things so much worse..another to remove n repair..left with more pain..1 hip replaced other one needs to b replaced like now..but refusing to get it done for now..also spinal stenosis with lot of degenerate disk disease..anemia….etc..last one is fibromyalgia..lot of tests n treatments done with no relief. Traveled to different hospitals n seen by different doctors…now I say I'm done with it all..whats done is done ..i can't go back. Just trying to live with the new me which has been extremely hard..my mind races like I'm 26 but my body feels like it's 106 yrs old..the golden years..not what i planned for retirement…one day at a time..continue to stay strong n pray..i will. Looking forward to getting to know everyone here……dreamer 🌈somewhere over that rainbow….
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@dreamer63 hi dreamer, I am here to welcome you! I also fight pain but not like you. You have a lot going on yet at the end you mentioned your strength. We’ll try to stay strong together. I am 61 years young and have fibro and rheumatoid arthritis. Look forward to commiserating with someone who knows constant pain. Karen W

Liked by eliana5

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@hello Karen00 n to all others that r fighting chronic pain everyday. Thanks for the welcome. It's been a long road to travel. Living day to day..really can't plan much because my pain..always contols my days….so many different emotions..eventhough I'm still in constant pain I'm kind of relieved that I finally come to the end of all the doctors, tests n treatments…unless of course something new comes along…so far not..n nothing I've done has helped ..told my doctor want nothing more n have a DNR in place..Now I'm just trying to b comfortable in this wrecked body. Accept that I'm just getting worse. Yes I'm depressed n have anxiety which I find goes hand n hand with chronic pain..so besides medications I go to therapy which has really helped me..went through classes of cognitive therapy which has been more useful than not..taking myself to lala land n dreaming …like goin to Hawaii n being young n beautiful n in the best of health…i make up my dream as I go..some may think it doesnt work but when im at high level of pain n nothing else is working I just lay down n pray for sleep n relieve n take myself far away …eventually I fall asleep n pain eases enough to tolerate…thats it for now..will keep u all in my prayers…keep the faith.n stay strong..🌹

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Hi, my name is Samantha, and I am suffering from post-concussion with a TBI, and now suffer from RND which is a pain syndrome. Has anyone ever had and help in getting a diagnosis, since I am just sick of it, not having a diagnosis. Does Mayo Clinic have Doctors who specialize in pain management involving TBI's?

Liked by eliana5

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I don't know about Mayo but I know that m-health has a marvelous pain clinic that works with surgeons Physicians and neurological Specialists of every short you can think of. I remember seeing several of them at my intake a few years ago. M health is part of the Fairview, University of Minnesota Health System and I can't say enough good things about them. I will try to post their phone number in Minneapolis Minnesota when I go to my computer

Liked by eliana5

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@dreamer63

@hello Karen00 n to all others that r fighting chronic pain everyday. Thanks for the welcome. It's been a long road to travel. Living day to day..really can't plan much because my pain..always contols my days….so many different emotions..eventhough I'm still in constant pain I'm kind of relieved that I finally come to the end of all the doctors, tests n treatments…unless of course something new comes along…so far not..n nothing I've done has helped ..told my doctor want nothing more n have a DNR in place..Now I'm just trying to b comfortable in this wrecked body. Accept that I'm just getting worse. Yes I'm depressed n have anxiety which I find goes hand n hand with chronic pain..so besides medications I go to therapy which has really helped me..went through classes of cognitive therapy which has been more useful than not..taking myself to lala land n dreaming …like goin to Hawaii n being young n beautiful n in the best of health…i make up my dream as I go..some may think it doesnt work but when im at high level of pain n nothing else is working I just lay down n pray for sleep n relieve n take myself far away …eventually I fall asleep n pain eases enough to tolerate…thats it for now..will keep u all in my prayers…keep the faith.n stay strong..🌹

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Hi, I can definitely relate. I too suffer from pain. I think and look at a picture of me on front stairs..about a year and a half ago. I looked nice, photo was on Facebook..I was on pain meds for severe degenerative back disease from fall off horse at horse show at the age of 21. I'm now 56..was on pain meds for a very long time..too long along with trigger point injections, steroid shots, but at that time, the shots and muscle relaxers worked great. I had the horrible constipation that pain meds are notorious for causing, but at that time I was younger, had a social life, outgoing..then I had a stupid idea to go cold turkey off pain meds. Never should have done that. My digestive system has been ruined, now I am coping with even more debilitating constipation..I live on stool softeners and a stimulant laxative every Sunday just so I can flush. I have lost over 100 pounds, and I don't even look like the same person I no longer have any quality of life due to IBS, cramping with even the smallest meal..weekly laxative use..my life revolves around my bowels and just feeling lousy. Nothing seems to work..fiber, Probiotics, etc only makes things worse. All tests seem to be okay. I get "dismissed" by uncaring gastroenterologists, constant trips to ER for impaction..when I to in, severly constipated and crying, at my wits end, nurses and ER doctors roll their eyes at me
. I have no family left, no significant other..my friends all have given up on me, as I had to always cancel plans to to IBS. Since my constipation is chronic and severe even on stool softeners, I have to "strain" and now from that, my right shoulder is so painful. I have no idea what kind of Doctor to see for my right shoulder pain. I too think about my time in Maui back in 1995. How happy I was, I was working at a job I enjoyed, Maui was so beautiful and romantic. Living in Seattle at that time, had met a man and was falling for him. Feeling so happy and in love, euphoric in Maui. Now I sit here, alone, no friends. Missing my cats, and knowing tomorrow I will be on the toilet all day, in pain from a harsh stimulant laxative. This has been my life now going on six years. The good news, I am no longer loosing weight..have gained 4 lbs, so may not have to be put on a feeding tube after all..yet my life that was, is no more.

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@jfsherley

I use to have the same problem with the pain meds but I can’t do without them so I found something that helps me a lot called Psyllium husks caps , I take 4 to 5 a day plus I eat a dried prune every night plus a 1 probiotic every night and it has solved that problem ! I suffered for a long time before I finally got it figured out, if I happen to get consulates again I’ll just take some sting laxative

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Nothing has worked for my chronic constipation. I only produce "pellets" with stool softeners. When I was on pain meds prescribed Linzess and Movantik specifically for opioid induced constipation. Did not work. A nurse at pain clinic told me to take Senna, a stimulant laxative. I take every Sunday. Hate living like this..this is no way to live. Fiber only makes things worse for me, have tried it all..including flaxseed, Probiotics with BB-12, VSL 3. Nothing. Can you please tell me what probiotic you take? Please don't tell me to "take Miralax" there is an black box warning on it on FDA website..It will soon be taken off market I think. It makes me cramp too much..

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@samgray1217

Hi, my name is Samantha, and I am suffering from post-concussion with a TBI, and now suffer from RND which is a pain syndrome. Has anyone ever had and help in getting a diagnosis, since I am just sick of it, not having a diagnosis. Does Mayo Clinic have Doctors who specialize in pain management involving TBI's?

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Hi @samgray1217,
Mayo Clinic has one of the largest and most experienced practices in the United States, with campuses in Arizona, Florida and Minnesota. Staff skilled in dozens of specialties work together to ensure quality care and successful recovery. https://www.mayoclinic.org/diseases-conditions/traumatic-brain-injury/doctors-departments/ddc-20378562

Samantha, you may also be interested in taking part in this discussion on Connect:
– Adult Life after a Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/

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@eliana5

Nothing has worked for my chronic constipation. I only produce "pellets" with stool softeners. When I was on pain meds prescribed Linzess and Movantik specifically for opioid induced constipation. Did not work. A nurse at pain clinic told me to take Senna, a stimulant laxative. I take every Sunday. Hate living like this..this is no way to live. Fiber only makes things worse for me, have tried it all..including flaxseed, Probiotics with BB-12, VSL 3. Nothing. Can you please tell me what probiotic you take? Please don't tell me to "take Miralax" there is an black box warning on it on FDA website..It will soon be taken off market I think. It makes me cramp too much..

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@elliana5 When I had to go to urgent care about my constipation the Dr. there told me to take fiber pills and probiotics I just bought them at the pharmacy Dr. also told me to take or eat prunes it took about a week of doing this regimen but all is well hope you find a solution . I don't do many Rx by Dr. instead I do herbs and magnesium at different times before I had to go to urgent care I would drink Citrate of Magnesium that really did the trick but it unplugged me . Just remembered about this My Aunt relied on Cod Liver Oil every day. I couldn't get it pass my nose . For me now if I eat fruit at every meal and a prune at nighttime is all I need . good luck

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@lioness

@elliana5 When I had to go to urgent care about my constipation the Dr. there told me to take fiber pills and probiotics I just bought them at the pharmacy Dr. also told me to take or eat prunes it took about a week of doing this regimen but all is well hope you find a solution . I don't do many Rx by Dr. instead I do herbs and magnesium at different times before I had to go to urgent care I would drink Citrate of Magnesium that really did the trick but it unplugged me . Just remembered about this My Aunt relied on Cod Liver Oil every day. I couldn't get it pass my nose . For me now if I eat fruit at every meal and a prune at nighttime is all I need . good luck

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That’s exactly what I do also . I’ve read where some of you are using CBD oil , I’m really wondering if it really is better for pain than tramadol or gabapentin ?

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Yes I have lower back pain. I have seen many doctors who just want to do shots which I agree to do. But the shots did nothing but make the pain worst. No doctor is will to do the operation because of my weight. I am to do the point where it hurts to breath, walk, sleep, and sitting. I can't do long car rides it is so painful. I am wondering if there is anyone out there that can help me. I have done the shots, P.T., and pain meds. If someone could help me that would be great I have been dealing with this pain since Feb. 28,2018.

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@walesewicz

Yes I have lower back pain. I have seen many doctors who just want to do shots which I agree to do. But the shots did nothing but make the pain worst. No doctor is will to do the operation because of my weight. I am to do the point where it hurts to breath, walk, sleep, and sitting. I can't do long car rides it is so painful. I am wondering if there is anyone out there that can help me. I have done the shots, P.T., and pain meds. If someone could help me that would be great I have been dealing with this pain since Feb. 28,2018.

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@walesewicz Welcome to this wonderful group of people on here Its a problem we all face the debilitating pain If you can start to walk more each day outside this will help you or go back n a pool its easier on your back and knees Dr told me this will help alot For myself I have same with my lower back plus back fracture in 05 but by doing chair exercises and water aerobics my pain level has dropped considerably My suggestion also is buy some ginger -Tumeric tea Trader Joe's has it its for inflammation and this helps relieve the pain also Im a retired nurse and hopefully this will help you. Of course losing weight will help all but its hard to do.Best of luck Linda

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@walesewicz

Yes I have lower back pain. I have seen many doctors who just want to do shots which I agree to do. But the shots did nothing but make the pain worst. No doctor is will to do the operation because of my weight. I am to do the point where it hurts to breath, walk, sleep, and sitting. I can't do long car rides it is so painful. I am wondering if there is anyone out there that can help me. I have done the shots, P.T., and pain meds. If someone could help me that would be great I have been dealing with this pain since Feb. 28,2018.

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@walesewicz Gosh, that sounds familiar. After two surgeries which failed miserably, I decided to try something different. It is simple, but needs to be done every day. Lay flat on your back, without a pillow. Start by bringing your knees, one at a time, as far toward your chest as you can. Do as many as are comfortable, then do another group late in the day. After a month or so, just repeat, then lift each leg about six inches and make little circles. Do what is comfortable. Then repeat tomorrow. It will tighten your belly muscles, which are the muscles which support your spine. It may take a few months, so don't hurry it past being comfortable. Oh, and walk if you want, but only as far as is comfortable.

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@walesewicz

Yes I have lower back pain. I have seen many doctors who just want to do shots which I agree to do. But the shots did nothing but make the pain worst. No doctor is will to do the operation because of my weight. I am to do the point where it hurts to breath, walk, sleep, and sitting. I can't do long car rides it is so painful. I am wondering if there is anyone out there that can help me. I have done the shots, P.T., and pain meds. If someone could help me that would be great I have been dealing with this pain since Feb. 28,2018.

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@Wales I sure wish there was something I could do for all of us and our pain. I am praying that Marijuana will be approved throughout the country. I know there are some who do not believe in it, but if it works and it is legal…Then just know I will be using it. I am 76 and I have had a great life. I have suffered from pain for the past 20+ years. If I can be comfortable for the rest of my life, I will be thankful. I am moving to Independent living. I do not want to end up in Assisted Living, so I will work hard to get used to the pain. No one understands your pain like another who is also suffering. I believe drs have forgotten the oath they took.

Liked by lioness

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