1. < Chronic Pain

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.

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

diana11 | @diana11 | Nov 22, 2016
In reply to @lynettegable "Ive had 17 surgeries on my leg after infection with a knee replacement. Long story short..." + (show)
@lynettegable

Ive had 17 surgeries on my leg after infection with a knee replacement. Long story short the surgeon that performed my original knee replacement would not recognize that the prostheses needed to be removed. Thanks to Mayo Clinic I am alive but ended up with a fused leg. I also have a tronchanteric hip fracture and hip dysplasia on the same side as fused leg. Now I have back problems, nerve impingement and do have nerve ablations done that helps some of the pain. Because of the stress put on my good leg that knee is now bone on bone. I had a scope done a year ago and they removed several bone pieces and most of the meniscus. Ive tried shots but they did not help snd recentlt had stem cell and PRP done on that knee which was an out of pocket expense. I hopeful this will help with the pain. There is not much else that can be done and Im tired of pain pills. My recent visit to Mayo we discussed going through the Pain Rehabilitation Program. Looking for people that have gone through the program
Thanks!

Jump to this post

Hello, I'm sorry to hear about what you've been through. I've not been through the Mayo Pain Rehab Program but while going through some of the older posts noted that Medic7054 and dawn_giacabazi had-I've gone (and am still going through) a Pain rehab clinic and found it to be very helpful.Congrats on the stem cell procedure-I hope it helps with the pain!Take care.

REPLY
diana11 | @diana11 | Nov 22, 2016
In reply to @meggie "Hello everyone! I am 75, a Benedictine sister. While I was diagnosed with fibromyalgia years ago,..." + (show)
@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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I'm sorry to hear of your struggles-it's difficult and frustrating to hear "just manage" when obviously we wouldn't be seeking help from the medical community if we could-diet,exercise,hot pads,massage pads,medication,dietary supplements,humor and remembering to be grateful for every blessing that comes my way has been the most helpful for me.I wish you well!

REPLY
nanke99 | @nanke99 | Nov 22, 2016
In reply to @nanke99 "hi! forgive me for being redundant, but i would love to get some more direct stories..." + (show)
@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!!!!!

Jump to this post

hello, and thanks. i appreciate your concern about chronic pain, but i really need to get answers about RA and Fibro specifically, since that's what i am being treated for. i will be most likely switching meds soon and need to make decisions about that. i need input about what my expectations should be, which may help with frustration. can my post be in BOTH sections?

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Nov 22, 2016
In reply to @nanke99 "hi! forgive me for being redundant, but i would love to get some more direct stories..." + (show)
@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!!!!!

Jump to this post

Hello @nanke99. I apologize about getting bounced around a bit on here. Here is what I suggest we do. Like Kanaaz suggested, I recommend posting your above post to the active discussion about fibromyalgia here, http://mayocl.in/2effi2l. In that group you will meet many other members who are experiencing things very similar to yourself. They may be able to help you with some of your questions regarding Fibromyalgia.

I was not able to turn up a central discussion centered around Rheumatoid Arthritis, but many other members have talked about RA in the past. Here is what I think we should do. I encourage you to start a new discussion in the the Autoimmune group specifically for your questions regarding RA. You can do that by going to https://connect.mayoclinic.org/group/autoimmune-diseases/ and then clicking on the START A DISCUSSION box. From there you could start a whole new conversation where other members could come to discuss Rheumatoid Arthritis specifically. I think this would be helpful for not only you but the Connect community as a whole.

If you have any questions, comments, or concerns about this process, please do not hesitate to send me a personal message by clicking on my name and then the envelope symbol in my profile. Then you could send me a private message between just you and I. We will get you connected other members!

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Mentor
Jim, Volunteer Mentor | @jimhd | Nov 22, 2016
In reply to @larilea2006 "Hello my name is Lari West I was diagnosed with chronic firbro last year after a..." + (show)
@larilea2006

Hello my name is Lari West I was diagnosed with chronic firbro last year after a car accdent in 2014 after they could not find nothing to explain the pain I was in . I know deal with all tbe symptoms to firbo . I dont know how to deal witb tbis . I take no meds for it but i am losing friends and family my husband over tbis . Please help me !!

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It helps me when people say to whom they're responding, too.

REPLY
Jen, Alumna Mentor | @sandytoes14 | Nov 22, 2016
In reply to @meggie "Hello everyone! I am 75, a Benedictine sister. While I was diagnosed with fibromyalgia years ago,..." + (show)
@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

Jump to this post

@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.

REPLY
hosta, Eve | @hosta | Nov 23, 2016
In reply to @meggie "Hello everyone! I am 75, a Benedictine sister. While I was diagnosed with fibromyalgia years ago,..." + (show)
@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?

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Nov 23, 2016
In reply to @meggie "Hello everyone! I am 75, a Benedictine sister. While I was diagnosed with fibromyalgia years ago,..." + (show)
@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

Jump to this post

@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.

REPLY
jerseygirl926 | @jerseygirl926 | Nov 23, 2016
In reply to @nanke99 "hi! forgive me for being redundant, but i would love to get some more direct stories..." + (show)
@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!!!!!

Jump to this post

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!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 24, 2016
In reply to @nanke99 "hi! forgive me for being redundant, but i would love to get some more direct stories..." + (show)
@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!!!!!

Jump to this post

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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