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.

@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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@salena54 I, too, work and care for my mother who has Alzheimer’s and Crohn’s (disease of the bowel which causes horrible diarrhea, she has had two sections of bowel surgically removed but it continues to spread). I have RA, Sjogren’s syndrome, fibromyalgia and spinal stenosis. I work part time (afternoons). My daughter-in-law stays with my mom the few hours I am away at work. I can truly empathize with the difficulty of taking care of your mom and yourself! It is extremely hard when I have a flare. Sometimes I feel so guilty as we just sit on the couch and watch t.v on those days or she naps and I nap. All of my siblings (three sisters) live out-of-town. Closest one is 6 hours away. Luckily my husband is helpful (he still works full time). My son and daughter-in-law and their 2 year old son live with me. Sometimes this is good and sometimes it just ads to the stress. My mom does seem to like my grandson’s company, but gets upset if he is too wild or is throwing a tantrum (like most two year old kids do). I also have three dogs which my mom likes very much. I also get great joy from my dogs. I try to keep positive and count my blessings. I can at least get out once in a while if my daughter-in-law agrees to watch my mom (and I watch my grandson for her). My mom is doing okay. Her memory is really bad. She can not cook, clean, do laundry, make even a simple meal, etc. She can still walk, even if it is slow. We sometimes get out to a movie or the store together. Sometime she has accidents when we are out, so I always carry clean underwear, clean pants, clean socks and a pad plus her Imodium. I am on anti-depressants, which have helped me a lot – has also helped with my fibro pain. I know how it is for family to not truly understand the depth of your pain and what you go through. It is hard enough to take care of a loved one with Alzheimer’s together with another chronic disease, but to do so when YOU also have chronic diseases is even more difficult. But I know it could be worse, so I am thankful for my blessings. I am thankful I can still walk and work and take care of my mom. I have been managing my medical conditions for over 15 years, so I know pretty much what will cause me to flare, and I try to pace myself. Sometimes a flare can’t be figured out. But I just do the best I can with what I have! My grandchildren (I have four – two live out-of-town which makes me sad as it includes my only granddaughter; one is 13 so he is into “teen” things; and the other grandson lives with his parents in my upstairs rooms) are a source of joy to me. Anyway, hang in there! There are others fighting the good fight, too. Those on this site can understand when others don’t. They know you are in pain even though there are no “outside” indications – like a cast or something. They understand the unbelievable exhaustion even though you’ve had 9 hours of sleep! I am praying for you and all those on this site who face the daily struggle. There is light in darkness. There is hope even in the pain. There are reasons to smile and to even laugh. There are reasons to be thankful!

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Hello @persist. I have fibromyalgia, RA, Sjogren’s syndrome spinal stenosis. For distraction from pain, I am glad I have my dogs. They distract me with their playfulness and love. I like to watch movies, especially comedies. I love to read. I also play video games. I listen to upbeat music. When the weather is nice, I like to eat out doors at a cafe and people watch. I love visiting with my grand children. I also work part time, so I can keep my mind distracted with work. I also care for my mother who has Alzheimer’s, so I distract myself with seeing to her needs. I also have a little Russian tortoise who I love to watch eat. Sometimes I let him out in the yard and watch him discover clover and dandelions to eat. (Yep, I keep some weeds in my yard because my tortoise likes to eat them!) I also do my best to count my blessings. I know things could be much worse! I can’t imagine having my conditions and having no access to a good doctor or medications. I am doing pretty well in spite of what obstacles I may face from day to day. I also pray for others. That helps to distract me, too. I hope you find lots of good ideas on this forum to help distract you from the pain. Hang in there! I will be praying for you!

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@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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@salena54, I compliment you for your ability to find ways to cope with everything that’s on your plate. My wife and I deeply appreciated our siblings who cared for our parents. We knew how much it affected their lives, and whenever we could, another sister and I helped give my sister a break. She was dealing with her own serious health problems, as you are.

After writing this note to you, I looked back and found that your mother had stepped into her new home with Jesus. How good for her, but maybe hard for you. After I wrote
what’s below, I read your note from June, so I came back and added this paragraph.

I know it’s been a while since you wrote this note, and I hope you’re doing okay.

I was a minister for 35 years when I retired on Social Security Disability at age 55. I was approved for mental health disability the first time I asked, thankfully. I’m treated for depression, PTSD, anxiety disorder, suicidal ideation, and chronic pain from idiopathic peripheral neuropathy. The pain issue started about 5 years ago, and I’ve seen several neurologists, and various other doctors, leading me now to a pain specialist because none of the medications usually prescribed for neuropathy have helped me. I understand that the day may come when I’ll be in a wheelchair, if the condition continues to progress.

So, I support you in the pain/mental health balance. For me, depression was pre-existing to the pain, but I know full well how pain drives the depression. I’ve been taking antidepressants and anti-anxiety medication for 11 years, and they have saved my life, I’m sure.

One of the therapists I saw 5 or 6 years ago recommended a service dog, and I had recently lost my border collie and rescued a Border Collie, Australian Shepherd mix for companionship and therapy, so I trained him to be a service dog. (I found training requirements online.) He died suddenly in February, from some sort of brain event, which was very hard. In March, God led me to Sadie, whom I rescued from the Humane Society shelter, and she’s doing very well with her training. Having a psychiatric service dog has made a big difference in the level of depression I experience. An important part of her service is being with me everywhere I go. I haven’t had a panic attack out in public since I’ve had a dog.

We live out in the country, and are thankful every evening during our couples prayer time for all of our blessings. I know that having a home on ten acres, where it’s peaceful and quiet, is therapeutic. I’m continually grateful for the peace of God in my heart. What would we do without that?

So often, as I read the stories of people with chronic pain, I feel guilty about complaining about my pain, when I see how easy I have it, compared to many others. I don’t think I can even count all of my blessings.

I pray that you’ll continue to be aware of God’s presence, and with the Spirit’s strength and guidance, you’ll be able to keep finding ways to walk through the difficult times. God bless you and your husband.

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@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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Your pain is sufficient to you. I was an alcoholism and drug counselor and native American inpatient and outpatient treatment program director before fibromyalgia and became a personnel manager afterwards. I was vice president of the Seattle chapter of International Personnel Managers Association before being disabled at 53. 20 years later I’m still here and walking around. I died 4 times and was told several times I’d never walk again. Life is a gift, grab it.

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@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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One statistic no one follows is the number of chronic pain sufferers who have committed suicide because of inability to get opiods. It has been increasing. Even pain specialists are reluctant to prescribe ongoing opiods. I tried MJ but it was difficult to control dosage.
I’m a former chemical dependence counselor, educator and executive director. I know the dangers and never exceed dosage. If I become addicted, so what. I’ve been in constant pain since 1985.

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@19lin

@kelseydm: When do you think the revised web site you spoke of will be complete? I still have a lot of trouble with this system. It is hard to find an individual and reply to their post. On memorial day I made it to the cemetery to put some decoration on my families graves with my kids, but the rest of the time I stayed home the weather was changeable and that means more pain for me. I hope you and everyone had a better time. 19lin

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I’ve found its barometric changes and not the weather itself that cause my most severe pain.

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Weather! I have had big flare up due to 2 days damp, do better dry and cold. I have noticed barometric as well.

Hope your day is good one!

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Hi im nichele

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Not feeling well today

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@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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Hi Mikee, nice to meet you here. I am living in Sweden and have had fibromyalgia for 15 years. I was diagnosed with “unknown allergy” and given disability pension. I later moved to Singapore and the climate there was good for me. My disease got better so I started to work again in the IT-industry. Some years ago it got very bad again and I couldn’t continue to work, ended up in hospital with several chronic diseases, a heart attack with following heart problems and sleeping problems. I was also diagnosed with fibromyalgia. My wife and her family was very abusive towards me and as sicker I got as worse it became. Today I know for sure that the traumas I did go though in my marriage has caused both the heart and sleeping problems as well as the fibromyalgia.
I filed for divorce and had to leave Singapore. Back in Sweden doctors don’t care about people any more and all the money goes to refugees. I get some help for my heart problems and sleep problems but no one wants to address the fibromyalgia. The departments at the hospital are fighting about which one should handle it so no one does. I also have the right to get money from insurance for my living and disability pension again but I cannot get in this situation when the doctors don’t want to do anything. I got treatment in Singapore that really helped but it is so hard to get it here so I get worse day by day. I have been in a wheelchair in Singapore and the treatment helped me out of it. Now walk with a walker and will soon be back in the wheelchair if I don’t get treatment soon. It has also been close for me several times but I am keeping on fighting. I don’t think there is anything else to do.

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@mikee I agree with you on the issue of suicide. I worked as a counselor and social worker with suicidal clients and one thing I found is that once they got help for their problem they lost interest in suicide. I feel the same would apply to chronic pain suffers, if you deal with the pain they will no longer consider suicide, but there are few good treatments for pain and some pain journals I have seen reports of suicide rates as high as 50% among chronic pain suffers even with treatment.
This is why I want an objective method of measuring pain in individuals as well as better research to find more effective treatments for pain. I feel that many pain suffers would agree that the current drugs based on opioids and not that good or effective, but since they are all we have restricting them is not the answer. They will simply exchange death from overdose, to death by suicide of the chronic pain suffers who have no relief from their pain. Additionally many pain suffers continue to work and contribute to society, but without pain relief they may not be able to work which will put a bigger drain on the economy resulting in loss wages and taxes. 19lin

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@mojoearle

Hello group! I’m almost 34 years old and suffer from Chronic pain. I have had 16 surgeries and have been a patient at the Mayo Clinic in Scottsdale for almost 3 years now but I live in Idaho and have to travel down to Arizona every three months for a month or so of treatment and testing and Doctor appointments and just even thinking of packing and flying down makes me hurt even more. But in all seriousness I do struggle with the long trip down to Scottsdale and then making it to all of my appointments and giving hundreds of vials of blood and doing all the test and my existence is just painful all the time 24/7! I have a pain Doctor in Boise but they make everyone at their clinic only take extremely low doses of pain medication a day and DONT GET ME WRONG I WOULD KILL TO NEVER HAVE TO EVEN LOOK AT A NARCOTIC PAINKILLER AGAIN BUT I DONT EVEN GET TO A 5-6 ON THE PAIN SCALE!

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May I ask what was the cause of your chronic pain? Thanks

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@blindeyepug

Hello @persist. I have fibromyalgia, RA, Sjogren’s syndrome spinal stenosis. For distraction from pain, I am glad I have my dogs. They distract me with their playfulness and love. I like to watch movies, especially comedies. I love to read. I also play video games. I listen to upbeat music. When the weather is nice, I like to eat out doors at a cafe and people watch. I love visiting with my grand children. I also work part time, so I can keep my mind distracted with work. I also care for my mother who has Alzheimer’s, so I distract myself with seeing to her needs. I also have a little Russian tortoise who I love to watch eat. Sometimes I let him out in the yard and watch him discover clover and dandelions to eat. (Yep, I keep some weeds in my yard because my tortoise likes to eat them!) I also do my best to count my blessings. I know things could be much worse! I can’t imagine having my conditions and having no access to a good doctor or medications. I am doing pretty well in spite of what obstacles I may face from day to day. I also pray for others. That helps to distract me, too. I hope you find lots of good ideas on this forum to help distract you from the pain. Hang in there! I will be praying for you!

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I like your attitude, my dear. We have similar viewpoint of world. Dogs are such a gift from God! Have a good day!

Liked by 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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Hello Sister…I greatly admire and appreciate your life of devotion.

It’s a moment to moment life, my great friend who happens to be a nun taught me this years ago, so I try living by. It not only helps get through the hard minutes of life, but makes the happy ones sweeter.

Please remember how many prayers you have said for others and they are bouncing back to you.

God Bless 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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Humor and laughing! If you want to see a really silly show, I recommend Impractical Jokers…cable. Anyone else have shows that make you laugh?

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