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.

@meggie

Hello everyone! I am 75, a Benedictine sister. While I was diagnosed with fibromyalgia years ago, that in itself did not cause too many problems. Depression was and is the biggest problem. However, a year ago I was in a car accident and have had severe (by my standards) pain ever since. After a LOT of dr. visits, experiments, etc. it’s ” we don’t know what’s wrong, we can’t fix it, manage the pain”. Problem is, the meds make depression symptoms MUCH worse…but without them I’m brought to tears, can’t think, etc. Is anyone else struggling with major depression and pain? How are you handling it? Thank you in advance

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@meggie Hello, It’s quite frustrating to have to deal with depression as well as fibromyalgia pain isn’t it? It is one of the many complexities of the condition along with IBS, sleep issues, etc. I have learned to listen to my body and limit what I do. But I make sure that on those days when I don’t want to get out of bed or off the sofa, I get up and move. I find turning on uplifting happy music helps, having a positive attitude and prayer are important too. Talking to others who understand is beneficial but only if the other person isn’t wallowing in self pity. Blessings to you.

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@meggie

Hello everyone! I am 75, a Benedictine sister. While I was diagnosed with fibromyalgia years ago, that in itself did not cause too many problems. Depression was and is the biggest problem. However, a year ago I was in a car accident and have had severe (by my standards) pain ever since. After a LOT of dr. visits, experiments, etc. it’s ” we don’t know what’s wrong, we can’t fix it, manage the pain”. Problem is, the meds make depression symptoms MUCH worse…but without them I’m brought to tears, can’t think, etc. Is anyone else struggling with major depression and pain? How are you handling it? Thank you in advance

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@jimjd I am responding to one of your comments, I would like it also, that when your are responding to someone comments to put their name of who you are responding to. I never know if some one is responding to me or someone else. Am I overlooking something?

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@meggie

Hello everyone! I am 75, a Benedictine sister. While I was diagnosed with fibromyalgia years ago, that in itself did not cause too many problems. Depression was and is the biggest problem. However, a year ago I was in a car accident and have had severe (by my standards) pain ever since. After a LOT of dr. visits, experiments, etc. it’s ” we don’t know what’s wrong, we can’t fix it, manage the pain”. Problem is, the meds make depression symptoms MUCH worse…but without them I’m brought to tears, can’t think, etc. Is anyone else struggling with major depression and pain? How are you handling it? Thank you in advance

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@hosta, you are not overlooking anything. Other than a member using your @ username, you can know if other members are responding to your post by how their post is indented. It can become a bit more difficult to determine who another member is responding to in a long discussion such as this one.

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@nanke99

hi! forgive me for being redundant, but i would love to get some more direct stories from people about their experiences, as i’m really having a hard time coping! i just don’t know what is next or where will i be in 1 years, 5 years, 10 years? i was diagnosed with RA & Fibro in last year and still fiddling with meds. currently on 2000mg sulfasalazine and 60mg cymbalta daily. they had been working but seem not to be so much anymore. i can feel my RA progressing, having difficulty squeezing shampoo bottle some days, pain is spreading to more joints & sometimes the pain at night is so bad (knees) i am literally writhing and crying in pain. and then it might not be moderate for a few days… i can barely climb a flight of stairs, and small amounts of activity leave me wasted. it seems like i have flares every other day. will i be confined in a wheelchair in a few years????

here are a few questions:

what were your first symptoms (either RA or Fibro) and how long before you were diagnosed?
what is your worst symptom/s?
are your RA symptoms symmetrical?
if you have joint pain, where and how would you describe it?
are you on disability, or are you able to work?
what medications have you taken that didn’t work, what do you take that does work, and what are your side effects?
have you suffered any liver or kidney damage from meds?
how often do you have flares?
what triggers them and how long do they last?
do you have any inflammation of any organs, and if so, how has it manifested?

thanks everyone!!!!!

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Hello nanke99

I also have fibro, RA and psoriatic arthritis, raynauds syndrome, chronic rib pain and chronic pain syndrome all of them cause pain but I understand your desire to discuss meds etc. I tried and failed the following: methotrexate, (multiple times) Embrel, Arava, humera, stellara, Cimzia and a couple I can’t even remember. I am now on a monthly infusion of Remicade plus prednisone. I was diagnosed in 2008 and worked until 2015. Overwhelming pain issues and fatigue had me stop working coupled with sides effects from juggling drugs. I have been on pain meds since 2009 and don’t know if I could function without them. I was just approved for medical marijuana and am trying to wean off a couple of my prescriptions starting with my sleep med. I currently take hydrocodone and tramadol for pain. I use a cane for balance and a travel wheelchair for longer trips to mall etc. I walk behind the chair but have a place to sit when I need to. My hubby will push me if we are in a hurry. I plan to get a scooter. Doctor prescribed one but insurance denied it. Uggggh. My symptoms are generally symmetrical with the arthritis and the fibro is all over pain like I was beaten with a bat. I used to say I had more good days than bad but right now it’s about 50/50. I am working with cognitive behavioral therapist to help me see more positivity and lessen the negative self-talk most of us with chronic illnesses have :-). Don’t know if my reply helps or not but I thought I would share. I truly hope you find a med to help you. Oh, and my liver occasionally is high and I don’t drink so it must be the meds. Good luck!

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@nanke99

hi! forgive me for being redundant, but i would love to get some more direct stories from people about their experiences, as i’m really having a hard time coping! i just don’t know what is next or where will i be in 1 years, 5 years, 10 years? i was diagnosed with RA & Fibro in last year and still fiddling with meds. currently on 2000mg sulfasalazine and 60mg cymbalta daily. they had been working but seem not to be so much anymore. i can feel my RA progressing, having difficulty squeezing shampoo bottle some days, pain is spreading to more joints & sometimes the pain at night is so bad (knees) i am literally writhing and crying in pain. and then it might not be moderate for a few days… i can barely climb a flight of stairs, and small amounts of activity leave me wasted. it seems like i have flares every other day. will i be confined in a wheelchair in a few years????

here are a few questions:

what were your first symptoms (either RA or Fibro) and how long before you were diagnosed?
what is your worst symptom/s?
are your RA symptoms symmetrical?
if you have joint pain, where and how would you describe it?
are you on disability, or are you able to work?
what medications have you taken that didn’t work, what do you take that does work, and what are your side effects?
have you suffered any liver or kidney damage from meds?
how often do you have flares?
what triggers them and how long do they last?
do you have any inflammation of any organs, and if so, how has it manifested?

thanks everyone!!!!!

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Welcome @jerseygirl926. I hope you’ll also join the discussion in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

Your reply certainly does help. Your cognitive behavioral therapy results come shining through in your message. It can be a challenge to see the positive while managing relentless pain. What tool or practice have you learned through CBT that helps you the most?

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My name is Renee, and I have severe Trigeminal Nerve Pain. I am currently taking the generic form of Tegritol 2X a day, along with gabapentin 3X a day ( which I have been on for the past 3 years for back pain). I feel sick to my stomachs, and very dizzy when I lay down since starting the 2nd dose of generic Tegritol. Not sure I have the flu, or if this is common with Tegritol . I was fine with one a day, but pain came back after 2 weeks of being on it. Any ideas or comments about this?

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I’m Mikee. I was diagnosed with fibromyalgia in 1985. I’ve had 17 surgeries on my back and neck. Two neck surgeries this year and two broken necks. One needed surgery and the other put me in a brace that I get off December 9th. I had two successful careers lost to injuries and pain. I’ve got the longest plumber crack in the world. From butt to top of neck.

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@mikee

I’m Mikee. I was diagnosed with fibromyalgia in 1985. I’ve had 17 surgeries on my back and neck. Two neck surgeries this year and two broken necks. One needed surgery and the other put me in a brace that I get off December 9th. I had two successful careers lost to injuries and pain. I’ve got the longest plumber crack in the world. From butt to top of neck.

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@mikee, I’m impressed by the number of surgeries you’ve had. Were they work related? It seems that a lot of people suffer with the pain of fibromyalgia, and it’s hard to imagine how it must feel. I fell 12′ a few years ago, and had 3 compression fractures in my lower back, which really only hurts when I overuse my back. I found that I have idiopathic peripheral neuropathy a few years ago, and I’ve seen several neurologists, and now I’m seeing a pain specialist because none of the medications usually prescribed for neuropathy have helped. I’m taking Cymbalta now, though I don’t think it’s really doing anything, and I take 30mg 3 times a day of morphine sulfate contin, which helps as long as I sit in the recliner all day. I just started trying Marijuana, and I think it would help, but the recreational strength isn’t enough to do much. I think I’m going to get a green card so I can get medical Marijuana. I’ve been taking medication for depression, anxiety disorder, suicidal ideation and PTSD for 13 years, and the combination of depression and pain is hard to deal with. Does your chronic pain affect your mental or emotional status? I’m 66 and retired 11 years ago on Social Security mental health disability. That ended my career. Sometimes I can’t decide which is worse – chronic pain or the pain of chronic depression.

I’ve noticed that a number of people I know who have fibromyalgia also have back problems. I’m wondering if there’s some kind of connection. I surely hope you’re done with surgeries for a long time.

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Hello! I have read some posts and I like you have moderator as well. I am 61 and due to wreck 26 years ago I have lots of broken bones, arthritis, fibromyalgia, nerve damage…yadayada. I visited the Mayo couple years after the wreck for several days tests, appointments that were exhausting. On the final synopsis with husband and sister there, they said nothing could be done…lucky to be alive…I asked prognosis for future as only 36 then, 2 teenagers…expect to be in wheelchair within 10 years.

Soooo…I am still walking. I feel mind body connection biggest factor in dealing with pain. I volunteer at different places and even though difficult at times, it takes me out of myself, improves moments for others and puts good karma in universe. Plus added bonus of oxytocin hormone in body.

My dog Doll is best medicine of all. Husband good guy but…

I Persist and prayers up for you all.

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@persist

Hello! I have read some posts and I like you have moderator as well. I am 61 and due to wreck 26 years ago I have lots of broken bones, arthritis, fibromyalgia, nerve damage…yadayada. I visited the Mayo couple years after the wreck for several days tests, appointments that were exhausting. On the final synopsis with husband and sister there, they said nothing could be done…lucky to be alive…I asked prognosis for future as only 36 then, 2 teenagers…expect to be in wheelchair within 10 years.

Soooo…I am still walking. I feel mind body connection biggest factor in dealing with pain. I volunteer at different places and even though difficult at times, it takes me out of myself, improves moments for others and puts good karma in universe. Plus added bonus of oxytocin hormone in body.

My dog Doll is best medicine of all. Husband good guy but…

I Persist and prayers up for you all.

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I totally understand. Nothing can be done for my scoliosis either. Same as you. I keep distracted as much as I can. The wheelchair will be coming for me too at some point.

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@persist

Hello! I have read some posts and I like you have moderator as well. I am 61 and due to wreck 26 years ago I have lots of broken bones, arthritis, fibromyalgia, nerve damage…yadayada. I visited the Mayo couple years after the wreck for several days tests, appointments that were exhausting. On the final synopsis with husband and sister there, they said nothing could be done…lucky to be alive…I asked prognosis for future as only 36 then, 2 teenagers…expect to be in wheelchair within 10 years.

Soooo…I am still walking. I feel mind body connection biggest factor in dealing with pain. I volunteer at different places and even though difficult at times, it takes me out of myself, improves moments for others and puts good karma in universe. Plus added bonus of oxytocin hormone in body.

My dog Doll is best medicine of all. Husband good guy but…

I Persist and prayers up for you all.

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Hello persist, and welcome to Connect. It sounds like you are bringing a positive attitude with you despite the troubles that you face. I think you will find that other members share your positivity here in the community and will also appreciate yours.

You may be interested in joining the active discussion taking place on fibromyalgia here, http://mayocl.in/2effi2l. There are many other great conversations covering many topics here on Connect. If you have any questions do not hesitate to ask.

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@persist

Hello! I have read some posts and I like you have moderator as well. I am 61 and due to wreck 26 years ago I have lots of broken bones, arthritis, fibromyalgia, nerve damage…yadayada. I visited the Mayo couple years after the wreck for several days tests, appointments that were exhausting. On the final synopsis with husband and sister there, they said nothing could be done…lucky to be alive…I asked prognosis for future as only 36 then, 2 teenagers…expect to be in wheelchair within 10 years.

Soooo…I am still walking. I feel mind body connection biggest factor in dealing with pain. I volunteer at different places and even though difficult at times, it takes me out of myself, improves moments for others and puts good karma in universe. Plus added bonus of oxytocin hormone in body.

My dog Doll is best medicine of all. Husband good guy but…

I Persist and prayers up for you all.

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Thank you! What’s your favorite pain distraction?

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@mikee

I’m Mikee. I was diagnosed with fibromyalgia in 1985. I’ve had 17 surgeries on my back and neck. Two neck surgeries this year and two broken necks. One needed surgery and the other put me in a brace that I get off December 9th. I had two successful careers lost to injuries and pain. I’ve got the longest plumber crack in the world. From butt to top of neck.

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Hi Mikee, welcome to Connect. I am glad you have already met @jimhd, as he is an active member in our community and has many experiences similar to yours to share.

We have had many existing and new members begin to talk about fibromyalgia. You may want to participate in the very active discussion happening about fibromyalgia pain here, http://mayocl.in/2effi2l. There is also a discussion in the early stages centered around back injuries and the various treatments that other members have gone through as a result that you may want to check out and participate in, http://mayocl.in/2fK5zBJ.

I look forward to seeing more posts from you Mikee.

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@persist

Hello! I have read some posts and I like you have moderator as well. I am 61 and due to wreck 26 years ago I have lots of broken bones, arthritis, fibromyalgia, nerve damage…yadayada. I visited the Mayo couple years after the wreck for several days tests, appointments that were exhausting. On the final synopsis with husband and sister there, they said nothing could be done…lucky to be alive…I asked prognosis for future as only 36 then, 2 teenagers…expect to be in wheelchair within 10 years.

Soooo…I am still walking. I feel mind body connection biggest factor in dealing with pain. I volunteer at different places and even though difficult at times, it takes me out of myself, improves moments for others and puts good karma in universe. Plus added bonus of oxytocin hormone in body.

My dog Doll is best medicine of all. Husband good guy but…

I Persist and prayers up for you all.

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Great question. I play guitar, exercise, and when I really need to turn the brain off completely I play video games. I am glad you brought this question up because it reminded me of another great discussion you should check out regarding this exact question, “what distracts you from the pain?” http://mayocl.in/2dzZdD9.

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@persist

Hello! I have read some posts and I like you have moderator as well. I am 61 and due to wreck 26 years ago I have lots of broken bones, arthritis, fibromyalgia, nerve damage…yadayada. I visited the Mayo couple years after the wreck for several days tests, appointments that were exhausting. On the final synopsis with husband and sister there, they said nothing could be done…lucky to be alive…I asked prognosis for future as only 36 then, 2 teenagers…expect to be in wheelchair within 10 years.

Soooo…I am still walking. I feel mind body connection biggest factor in dealing with pain. I volunteer at different places and even though difficult at times, it takes me out of myself, improves moments for others and puts good karma in universe. Plus added bonus of oxytocin hormone in body.

My dog Doll is best medicine of all. Husband good guy but…

I Persist and prayers up for you all.

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Persist, I have a psychiatric service dog, who’s always with me. She, and the dog I had before her, is an important part of my support team. I’m still training her. My last service dog died suddenly in February, and I found Sadie a month later at the shelter. She had things from her past to overcome, and we’re working on them. My wife is wonderful, but…

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