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.

@jeriliz

Hi everyone,
My name is Jeri. I have a degenerative disc disease, spinal stenosis, and scoliosis. I had very unsuccessful shoulder surgery last year that left me in more pain than I had before. I also fell and broke my hip three years ago and have some residual pain from that. There’s more but not for now.

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@gailb Thank you for responding. Recently they have thrown an autoimmune disease into the mix but they can’t quite identify which one. They have apparently ruled out Lupus or so they say. I take strong pain meds but there are days they barely take the edge off. My balance is pathetic and I fall more than anyone should. The scoliosis makes my balance worse, of course. I am 75.

@janie56

Hi Justin. I have posted and talked with one member. I’m thinking I did that wrong. I apologize as I’ve never belonged to a site like this before. Im lost. Maybe this site is to advanced for me. Im older and not to good at this. This seems complicated to me. I thought you go to chronic pain site. Hit it and start a conversation. Again. Sorry if I did it wrong.

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@janie56, you have done nothing wrong, so no need to apologize! I’m here to help you get situated and comfortable using Connect. You are doing it correctly.

The best way to use Connect, if you are responding by email, is you hit the VIEW & REPLY button at the bottom of the email. This will take you the actual Mayo Clinic Connect site so that you can see the entire conversation.

@janie56, what brought you to the Chronic Pain group? What is causing your pain? I can help you find conversations taking place on specific diagnoses and topics. Don’t get discouraged, all things take time to learn regardless of age.

@jeriliz

Hi everyone,
My name is Jeri. I have a degenerative disc disease, spinal stenosis, and scoliosis. I had very unsuccessful shoulder surgery last year that left me in more pain than I had before. I also fell and broke my hip three years ago and have some residual pain from that. There’s more but not for now.

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No problem @jeriliz. I am here to help you! I will post the links again. To get to those discussions just click on the blue text, then you will be automatically taken to the discussion:

– Harrington rod and low back pain, http://mayocl.in/2njBBFH
– Herniated disc pain, what helps? http://mayocl.in/2m4lRFF

@judyringelestein

I look forward to many comments on general chronic pain. I Judy and have shoulder pain,knee pain, general all over pain. I am taking 200mg of morphine sulphate and up to 5 ovycodone 10 mg pills a day. It works very well for me. Keeping my fingers crossed.

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I believe perception of pain depends somewhat on your age. As I’v aged (75) I tend to let pain take its course thinking “Oh just another pain.” instead of going to the doctor for new pains. My son( 50) gets upset about it and wants me to go to the dr. right away. Because anew pain he experiences gets his attention and he’s not used to just accepting it along with other pains.

@janie56

My husband is so good to help out to. I just get feeling so bad for him that he has to do things that I used to do. Every time I go to the doctor they find something else. Gets very depressing. So I try not to say to much so I don’t depress him. The doctors want me to move more but some days is so hard to get moving. I do push myself. I refuse to give in to this pile of medical problems. Have you tried acupuncture for your shoulder Judy? I hurt mine about five years ago. Couldn’t move it without spasms. I found that helped me very much.

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I know the guilt of asking, asking,asking. If I try to do it myself he gets upset with me that I might hurt myself. I also take antidepressants When my depression began, I thought I had heart problems. I was tired all the time and could hardly get myself home from work crying all the time. I explained to the doctor and he immediately told. me I was depressed. Sure enough about a week after starting the medication I began to feel normal again. I actually feel mentally very good. I have a great husband, get to travel, to great children, a cute dog lol. Mental and physical feelings are opposite for me.

@judyringelestein

I look forward to many comments on general chronic pain. I Judy and have shoulder pain,knee pain, general all over pain. I am taking 200mg of morphine sulphate and up to 5 ovycodone 10 mg pills a day. It works very well for me. Keeping my fingers crossed.

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I am also 75. And I envy you. My pain is so intense some mornings i can barely get out of bed. My mix of spinal stenosis, scoliosis, and degenerate disc disease does a number on me. I have a good pain doctor who is always trying to find some way to help me. I get easily discouraged.

I am sorry for your pain. Are you enrolled in a pain clinic? Have you tried acupuncture or biofeedback? I use narcotics twice a week for chronic pain in my head, jaw, neck, back. I do not have spinal stenosis at this time (I am 50), but I do have arthritis, disc degeneration, and disc bulging along my entire spine. All contribute to daily, chronic migraine, in my case. Pain will spread eventually. I had radio frequency nerve ablation in my neck (they burned away a nerve, which will eventually go back.) Chronic left shoulder pain is much better; still waiting for pain in neck, head, to improve. I wish you all the best. Fight for low-dose narcotics if you are so inclined. Doctors are afraid of prescribing it, and you may be intolerant of the meds due to age, but fight for a treatment trial, or perhaps trigger point injections while under anesthesia.

@judyringelestein

I look forward to many comments on general chronic pain. I Judy and have shoulder pain,knee pain, general all over pain. I am taking 200mg of morphine sulphate and up to 5 ovycodone 10 mg pills a day. It works very well for me. Keeping my fingers crossed.

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What kind of doctor do you see for your back? I was just diagnosed with some of the same back issues you named. Thanks, christine

@judyringelestein

I look forward to many comments on general chronic pain. I Judy and have shoulder pain,knee pain, general all over pain. I am taking 200mg of morphine sulphate and up to 5 ovycodone 10 mg pills a day. It works very well for me. Keeping my fingers crossed.

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I’m not sure if that question was for me but I will attempt to answer. I’ve had two spinal fusions. One left me with debilitating pain and the other one supposedly saved me from imminent paralysis. I have no residual pain from the second one. So, of course, i saw surgeons at that time. Now I see only a pain doctor for my back. He is encouraging me to see a “back doctor” even though I constantly say that I refuse any and all elective back surgeries. He’s a good, decent man and an excellent doctor but he keeps a tight reign on pain meds. As long as there are people on street corners selling, for instance, vicodin at $10.00 a pop, it will get more and more difficult for people like us to get help.

@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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I have a very good doctor who really listens to me. Objectively I know my pain is bad. I literally scream when trying to pull up pants. I have to bend over so my husband can pull them up. Night is really bad with my shoulder hurting so bad I cry. Emotionally I feel really good. Doesn’t sound possible but for me it is true. After trying several antidepressants I’ve found one that is really working (thank god). I’ve been taking it for 2 years now and it is still working well. I am able to really enjoy cruises and other travel and we do it alot. I almost feel guilty posting here because mentally I feel so good.

@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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You’re very lucky you can travel. Scoliosis and spinal stenosis make it painful to sit and walk far. I don’t sit st home. Takes classes at gym for yoga and Pilates. Painful but I work thru it. I volunteer at my grandsons elementary school once a week to read to the students. I’m not doing everything I want but I refuse to give in to pain. Be well

@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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Good for you edieguinn ….. you can be very proud of yourself for your tenacity.
abby

@briansr

Hi 19lin. I’m to the point that I can’t take this much pain. Surgery or
pills are a waste of time. I’ve always said , no offense to people that are
suffering with cancer, but after 33 yrs of this I’m backing in to a corner
with no way out. This is like cancer but no dr can tell me how long I have.
I’m now looking into marijuana use in my state. The govener is
decriminalized as of Jan. 2017 and there is a large push to make it legal
for medical use. I want to try it but if my dr tested me I will lose him,
we’ve had that discussion. I just don’t know if it would help, so I’ll wait
and see what happens in November when the people in this state will be
given a chance to vote for or against medical use. Both bills won’t make it
until Jan. The federal government. has all the the Drs scared because of
the misuse of narcotics. To many people pretend to be in pain just to sell
there medicine, I’ve seen it add 4 to 500 to there monthly income. This
puts narcotics in the wrong hands. Excuse me for rambling I’m just lost and
don’t know which way to turn. briansr

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Briansr and all you other souls with terrible pain ……. you just mentioned it Brian, and I was thinking the same thing. Now I’m not a drug advocate by any means, but it does seem that medical marijuana really helps a lot of people. I can’t imagine living with the kind of pain some of you are describing. Surely there is somewhere you can go to get an Rx for medical marijuana …. at least to give it a try and see if it helps.
abby

@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don’t have pain in the sense of “hurt”, but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks–there’s nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I’ve said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

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I’m thankful for Refresh, as well, @reneewise50, and use gel at night and lubricant during the day, as you do. The only difference is that it doesn’t seem to matter to my eyes what brand I use. Equate, from Walmart, is what I use now, as it’s the cheapest. Living on Social Security Disability, cheap is good – most of the time. I started using it when my ophthalmologist told me that my dry eyes were the probable cause of double vision. I still have double vision, but my eyes do feel better. Maybe the cataract surgery I’m having next month will help that.

Jim

@tompet

Hi, my name is Tommy and I have several chronic diseases. I am not living in the US and am moving from Singapore back to my home country Sweden. I was first sick in 2001 in Sweden and got wrong diagnose and disability pension in 2004. In 2005 I moved to Singapore and the climate made it a lot better so I started working and cancelled my disability pension. But it got worse and I haven’t been able to work for some years and I got help from the health care system here after ending up in the emergency.

It has taken time and the first diagnose was that my knees was worn out and that I had multiple polyarthritis and was put in a wheelchair. I got physiotherapy in warm water and it has helped me a lot. Now I am diagnosed with fibromyalgia, arthritis, chronic sinusitis and chronic pelvic pain syndrome as my prostate and urine bladder gives me problems. On top of that my left lung is collapsing, I have Meckel’s Diverticulum (a pocket on the colon) and when they examined that, colonoscopy, they found the beginning to colon cancer. At this time it was benign but they could not see the whole colon clearly and want it to be done again in Sweden. Like that wasn’t enough I also had a heart attack 26 August last year with following surgery and in the middle of November I was back to hospital with heart problems. My heart was beating to slow and irregular. Tomorrow I will be admitted for a sleep study as I suffer a lot from insomnia.

I also have an abusive marriage and starved so I lost 25 kg and was diagnosed with malnutrition. Thankfully I got help from the social welfare so I could at least eat one meal a day. I am very thankful for the help I have got here in Singapore; they have done a lot for me. After several years of struggle in court I finally got help from legal aid and am getting a divorce from my wife and can return to my home country. I have tried to leave before but my wife has stopped me and now I have to leave because I will lose my PR because of the divorce.

But I have nowhere to go. I am going back to a place I have lived before but because of the refugee situation in Sweden there is no housing available. Even the health care system is trying to make it hard for me to come there. I have a daughter and grandchildren there and my daughter is helping me but fighting with the bureaucrats is horrible. I just have to go there and just hope they will help me otherwise I will end up on the street without health care. The catch 22 is that I can’t stay with my daughter because then they will say I don’t need help. The Swedish system is for refuges not for helping returning citizens. And they misdiagnosed me before. I hope I at least can refill my medications as I am not allowed to take everything with me into the country and I so badly need a wheelchair. Hope I can get help with it.

Sorry for writing so long but I am in a lot of pain and the situation is desperate so I need all the input I can get. Thank you.

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@tompet

I know this was posted last year, but I just now came upon it. I really hope that you’re in a good position right now. Things weren’t going so great last May. I’ve been using a CPAP machine for around 15 years, and it has changed my life. Before then, I was chronically fatigued, from waking up so many times at night.

Maybe I’ll be able to find more recent posts from you. I’ll look.

Jim

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