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.

@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Thank you so much for taking time to write.  My dad died of COPD and I was with him the last 9 months…hard.  I admire your strength to endure and accept the pain.  I'm hoping you have some special things planned for this holiday time.  meggie

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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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Jim * I became very concerned about you when you talk about depression and suicide. I am nowhere in the same pain as you, so I cannot relate to that. A few things you have not mention is acupuncture, foot massage, foot vibrator (a good one* mine cost $125 and that was eight years ago.), mixture of tree tea oil and frankincense. some of these might seem silly to you, because you have tried so much. My neurologist has recommended large doses of vitamin b-12 ( I take shots plus 5000 mgs under the tongue every day. I will be thinking of 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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Thank you so much for your response and your prayers.  It sort of helps to know Jesus suffered too.  May you have something special planned for these next weeks of holidays.  meggie

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Thank you so much for responding, especially when pain is really bad.  I admire your courage to think about others at such a time. meggie

Liked by diana11, blindeyepug

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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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Thank you so much for taking time to reply and to give suggestions.  Living in the present moment or awareness is a Benedictine discipline that is standing me in good stead.  I admire your courage to keep trying…and to take time to reply to a stranger.  meggie

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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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Thank you for taking time to respond.  It means a lot.  meggie

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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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@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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Hello Lari, I am so sorry to hear about your pain. What is “tbis?” No matter what causes it friends don’t always understand our pain and we don’t want to be a burden. I can’t take my grandchildren 100 miles up the highway to the butterfly exhibit because sitting in the car can be unbearable. Although my family is kind there are times I feel they don’t believe me. I have neuropathy which is the result of Thoracic Outlet Syndrome which went untreated for years. Fortunately my husband has stuck with me “for better or worse, and in sickness and in health.” I love him and he loves me and this is what gets us through the days. Have a heart to heart talk with your husband. If you can get him on your side things will be much better.
Additionally, if you have a good pain doctor he/she understands that fibromyalgia is the real thing. Nerve and muscle pain can take away your life. Good luck. I am sending positive thoughts your way!

Liked by kayelle

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@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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Hello @larilea2006, and welcome to Connect. It sounds like you are dealing with some new diagnoses and are struggling with the new life adjustments. Thank you for taking the time to tell other members of Connect what you are experiencing.

You may want to read through and join the active discussion taking place on Connect called “Fibromyalgia Pain.” You can find it here, https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/. Here you will meet other members who experience frustrations and symptoms very similar to yourself.

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@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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Hi, Lari. Along with others, I empathize with you on various levels. Many people don’t understand what they’ve never experienced, such as chronic pain. I frequently hear from my wife comments about how she doesn’t like me taking medications, even though she also deals with her own pain. Nor do people understand the effects pain has on our mental health. I’ve been treated for major depression and a couple of other mental issues for 13+ years, and I’ve heard some pretty inappropriate comments from people. I’ve been seeing a pain specialist, along with my primary doctor (and others), both of whom understand and take what I say seriously. They have worked for a few years, trying to find relief for me from peripheral neuropathy. It really helps to have doctors who listen and are proactive in their treatment, though nothing has yet worked to stop the burning pain. I asked the pain specialist about medical marijuana, and he was quite supportive of me trying it, though his group of doctors has a policy of not prescribing it – same with my primary care doctor. Seeing a prescribing doctor costs $175, and a medical card is $200, both of which are annual costs, and marijuana is far from cheap, so I’m still weighing the cost/benefit because I live on a not very large Social Security check. In the meantime, I purchased some at a local legal distributor (it’s legal here in Oregon), and it’s the first thing that has touched the pain. Recreational edible use is pretty low dose, so the relief is quite temporary. I’ve been using Lidocaine cream, which is incredibly expensive without insurance, and it numbs my feet so I can go to sleep. I think that in the fibro group that Justin referred you to, members will offer numerous suggestions of things that have helped them. I pray you find relief soon, and that you’ll be able to get your husband on your side. That can make a huge difference. Sometimes, just knowing you have someone’s support, even if they don’t understand, can lower our stress level, which can have an effect on our symptoms.

Liked by blindeyepug, kayelle

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@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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Because of pain for many, many years, from spine, and fibromyalgia, etc. I finally moved into a continuing care facility where I am in Independent Living. One's meals, housekeeping, and social life are right here, with medical help.  Just a suggestion…..   @ladyjane85

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@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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You are so right!  I'm lucky to be able to live on 2nd floor of our monastery where all those services are provided and chapel is just down the hall.  I do realize how blessed I am, part of the hundredfold I think.  Thank you for taking time to answer me.  meggie

Liked by persist

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@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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If it works I do hope you find a way it get an on-going supply at a reasonable cost.  It's not legal here in Idaho…God bless all our very conservative voters.  Thank you so much for taking time to write. meggie

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Aren’t you on an antidepressant? I have fibromyalgia, RA, Sogren’s syndrome and spinal stenosis. I am on an antidepressant. I do not take prescription pain meds unless the pain becomes totally unbearable (which is maybe once a month). I don’t like them. I am on trazodone to help me sleep, cevimeline for my sogren’s and cymbalta for my fibro and depression. I also find massage and warm jetted baths help. Try to keep moving – walking or swimming especially. It is so tempting to just lay down and succumb to the illness, but keeping yourself moving actually helps in the long run. But you can’t overdo it. Everyone who has this must find their own balance. Overdoing it means a flare and then you will have no choice but to be in bed for a day or so. But not moving much at all will actually keep you in more pain. I try to stay positive and count my blessings. I try to find humor in something every day. Watching funny movies, etc., can actually help. I will be keeping you in my prayers, sister. God is good. Lean on Him. I find I get what strength I have from the Lord! Hoping you find help in all of these different suggestions from those of us who have been battling this for years and years. Just know that you are not alone and you can still have a life! You are still you! Your body has just changed – and that happens with all of us in one way or another.

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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!!!!!

Liked by dott

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