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.

@blindeyepug

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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Thanks so much for taking the time to respond; I do appreciate that.  I am on 2 antidepressants, one of them being Cymbalta…have been since before this unbearable pain started.  We're a small rural town in Idaho so some resources aren't available.  I agree the right movies help, as does playing cribbage and pinochle.  I have partners right here in the house.  I do try to walk outside each day and to interact with the others on assisted living/infirmary floor.  Judging from many of the responses I have it much easier than many of you…and I know God is close, cares, asks us "to fill up what's wanting in His sufferings" to quote St. Paul.  Guess I'm just new at this…finding it hard to let go of driving, organ playing, reading, being involved with the direction setting part of community   and dr. appts with lots of tests that don't say anything are exasperating.  I do thank God I have drs. who care .  Hope you have a blessed Thanksgiving, Sister

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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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I take tramadol doctor prescribed it for me saying I could take it every six hours for pain if needed. She was giving me a two week supply. I have osteoarthritis in all my joints sever scoliosis and have had a THR in April. When I called a few months ago to have it renewed, two week supply lasted me 3 weeks was told I have to make it last a month. Have neck degeneration cannot carry anything more then ten pounds if a do I have a constant headache. Now am having problems with both of my knees. Sit down can hardly get back up. Blamed it at first on the THR. Still recovering from that. Have not been able to walk outside the home without the aid of a cane. I also take an herbal joint aid and Tumeric which has helped with my joints. I only take one Tramadol at night. You are right people don’t understand by looking at us. I have tried going to a chiropractor for my back because since my surgery pain has been bad. He has helped somewhat. At my daughters urging I have started going for Reiki sessions which has helped a lot. Come out feeling relaxed and am able to sleep better. Can’t believe the things she has told me. Without even touching me she told me about all my problems. Last session told me I was having a problem with my right knee and try to keep weight off it. Next day I went for my Swedish massage and she told me I had a problem with the muscle above the right knee leading to the hip didn’t feel that way other months. Told me to try and keep weight off it too. Recommended I see my doctor. Haven’t done that yet wanted to do another Reiki session and see what she says. Seemed strange for a Reiki master who didn’t touch me told me the same as my therapist.

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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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Thankyou so much for taking time to reply.  I agree, the combination of Lyrica and Tramadol take it down to the bearable stage.  I'm lucky I live in a rural area and have a very understanding family dr.I admire your courage and perseverance and hope you have a Thanksgiving that's joy filled and peaceful.  meggie

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Hello,I’m Diana and have a lot of experience with chronic pain.

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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 ,
I’m sorry to hear of your troubles and can certainly relate.I found this website to be be very helpful(if not easy)-
http://treatcfsfm.org/
Experimentation with diet,exercise ,sleep,massage as well as medication can be very helpful-having a chronic disease is never easy.The social aspect can be one of the worst problems we face.Hang in there and try to find something to laugh about-movies jokes whatever you find amusing.Also,(although I haven’t quite fiquired it out yet)try to learn to advocate for yourself to your family,friends and Doctors.If you haven’t seen it yet the spoons theory can be a good starting point-
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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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!

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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 Meggie, did you send this message by replying via email? When you reply by email the message still goes to the active discussion on Mayo Clinic Connect. However, the best way to know exactly where your reply is going when reading messages in an email is to click on the blue “VIEW & REPLY” button at the bottom of the Connect email. When you click on this button, you will go directly to the discussion on Connect so that you can read all of posts and know exactly who you are responding to.

If you have any other questions you can personal message me by clicking on my name and then in my profile clicking on the blue envelope system. By doing this, you will be sending me a private message between just you and I.

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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,

Thank you for sharing your symptoms; I’m so sorry that you are going through so much pain. I’ve moved your discussion to the Chronic Pain group, as you will see that there are so many members who face the same frustrations as you.

I’m tagging @tbeckys, @blindeyepug, @ladyjane85, @jeannen, @sandytoes14, @swamma08, @dante, @irene5 as I’m confident that they will be able to address your concerns.

Here is another conversation taking place about ways that other members of Connect cope with the pain, http://mayocl.in/2effi2l.
nanke99, please do not feel that your questions are redundant; stay positive, and continue to search for answers.

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@diana11

Hello,I’m Diana and have a lot of experience with chronic pain.

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Hello Diana, and welcome Connect. Here in the Chronic Pain group we have many active discussions on pain and the different causes for that pain. I encourage you to search for topics that are relevant to you and Connect with other members who experience similar things to you. If you need help finding a group feel free to send me a personal message by clicking on my name and then in my profile clicking on the blue envelope system.

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@diana11

Hello,I’m Diana and have a lot of experience with chronic pain.

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Hello, and thank you for the welcome.
Just so you are aware, I received a message intend for Meg? and also a doubled message from the above post-

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@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!

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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.

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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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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!

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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, 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?

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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 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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@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.

Liked by diana11

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