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.

@johnhans

That Bible verse is one of my favorites. I have had PN for many years, but I find that not wearing shoes or socks and staying off of my feet helps a lot with keeping the pain away. I can imagine what it is like not being able to do your life's work. This is where we trust in the Lord to bring to pass what we cannot do in what way He sees as best. That is not easy. I have a friend who was a pastor and now has PN. He only works part time now because of it. Also my brother has a dog named Faith.

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Well said about relying on faith ((whatever it is for you) is a big coping mechanism. I love Jesus and I have feltbHim carrying me many times in my life. Perhaps others have Buddha, or another god or just rely on their own inner strength. Whatever it is that you rely on in life, lean on it to carry you through the pain, the anxiety, the unknown. We can’t do it alone, and we can’t always rely on others to do it with us. Even when we have strong supporters, ultimately it is up to us to choose to take the next step. Blessings all!

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@davidstory. I truly feel for your struggles. I was an active local missionary when my cancer hit. The pain and I’m immuno-compromised state it left me with, made it impossible for me to continue my works. But I prayed to God, certainly this wasn’t all he had for me, right?

As much as we feel “called” to something, God sometimes has another plan for us. Our job is to open our minds and hearts to see what that might be given the current circumstances. I would encourage you to open your mind and your heart to other opportunities, specific ones you could be effective in given your current disabilities. Got is not disappointed in you!! Keep speaking His truth. You might also seek out other pastors who have experienced disabling pain, cancers, other health problems that have caused then to have to change their mission plans. You are in my prayers.

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Hi everyone I'm Teresa I live in Az. When I was 20 I was a victim of crime and my lung was spewing out air in er when theyes turned me over to stitch my back up after finishing stitching my neck the last thing I remember was dr.running around and stuck something in my chest and the whole left side of my body raged with pain and I must of went out when I woke up i could move my left side it hurt to breathe I couldn't life my butt to even get on bed pan I had tube in for 4 days and all that time I was in so much pain and no one would listen .man I feel it no just talking about it here .anyways 17 years later they say I have nerve damage and even since then it as been on rememedy to another I'm so sick of it I could die radio-frequency.,Nerve block, spinal simulator, the only thing that help was a never clipping it lasted 4 years and no one I mean Noone will do it again because when it came back its a 100 times worse but those 4 years were the best time of my life I had still felt tightNess but I could breathe, laugh, sneeze ,cough , bend up and down ,could touch my side ,man I just wish I could get done again .if it last 4 years than do it again why not

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@teress221

Hi everyone I'm Teresa I live in Az. When I was 20 I was a victim of crime and my lung was spewing out air in er when theyes turned me over to stitch my back up after finishing stitching my neck the last thing I remember was dr.running around and stuck something in my chest and the whole left side of my body raged with pain and I must of went out when I woke up i could move my left side it hurt to breathe I couldn't life my butt to even get on bed pan I had tube in for 4 days and all that time I was in so much pain and no one would listen .man I feel it no just talking about it here .anyways 17 years later they say I have nerve damage and even since then it as been on rememedy to another I'm so sick of it I could die radio-frequency.,Nerve block, spinal simulator, the only thing that help was a never clipping it lasted 4 years and no one I mean Noone will do it again because when it came back its a 100 times worse but those 4 years were the best time of my life I had still felt tightNess but I could breathe, laugh, sneeze ,cough , bend up and down ,could touch my side ,man I just wish I could get done again .if it last 4 years than do it again why not

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@teress221
Hi
I am so sorry for what happened to you and all you've been through.
Have you tried a medicine pump?
I never heard of the procedure you mentioned. Would you please explain.
Thanks
Ronnie (GRANDMAr)

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Hello @teress221 and welcome to Mayo Connect,

I am so sorry to hear of your struggle with pain. Please share more, as you are comfortable doing so, about the types of doctors you have seen. I'm sure you have probably seen pain specialists and neurologists. Any others?

Liked by lioness

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Hi I’m Karen and I’m new to all this, but ever so glad to be amongst others like me. I have rheumatoid arthritis, fibromyalgia, bulging disc, and heart failure. I have started – as you all have on the mildest of NSAID’S, and continued up the opioid path. They are just not helping. I purchased CBD oil and need some help. I also have depression, anxiety, and insomnia and don’t have any idea how much to take and when. Can anyone help me? Thanks!

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@teress221

Hi everyone I'm Teresa I live in Az. When I was 20 I was a victim of crime and my lung was spewing out air in er when theyes turned me over to stitch my back up after finishing stitching my neck the last thing I remember was dr.running around and stuck something in my chest and the whole left side of my body raged with pain and I must of went out when I woke up i could move my left side it hurt to breathe I couldn't life my butt to even get on bed pan I had tube in for 4 days and all that time I was in so much pain and no one would listen .man I feel it no just talking about it here .anyways 17 years later they say I have nerve damage and even since then it as been on rememedy to another I'm so sick of it I could die radio-frequency.,Nerve block, spinal simulator, the only thing that help was a never clipping it lasted 4 years and no one I mean Noone will do it again because when it came back its a 100 times worse but those 4 years were the best time of my life I had still felt tightNess but I could breathe, laugh, sneeze ,cough , bend up and down ,could touch my side ,man I just wish I could get done again .if it last 4 years than do it again why not

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@teress221 I had two kidney surgeries. A couple of years later I developed chronic pain in my low back, sacrum, buttocks, hips and thighs. I've had two surgeries on my hip thinking that was the source of this new pain. After three years of therapy, injections, and testing, insurance change, having to change my therapist, etc. A fresh set of eyes and new perspective has come to light. The theory is that the kidney surgeries caused scar tissue and nerve entrapment, the source of my pain. I wonder if the chest tube caused the same perfect storm inside of you. The recommended treatment has been myofascial release. This is done with manipulative therapy. I had been getting a weekly (and extremely painful) deep tissue massage, but that's not what myofascial release entails. It's a very light touch. The first time I thought it was voodoo and what kind of quack is this. Laughingly I asked what I could expect over the next few days. She said I wasn't going to like her very well. Actually I HATED her over the next few days. I couldn't walk more than 90 seconds at a time. Then I got back to my baseline. While my husband was away from home for a vacation, I had my girlfriends over for a board game night. I spent the day cleaning my house and cooking and setting up card tables. By that night, I was having another flare in my pain. Back to 90 second walks again. I've seen this therapist a total of four times now. I can't believe how much improvement I've made since my first time!! One day last week and one day this week, I woke up with ZERO pain. Usually I toss and turn trying to get comfortable and when I can't take it any more I get up for the day. The first time I woke up with no pain, I literally thought I was dreaming. I was looking at my alarm clock thinking this is such a wonderful dream and I don't want to wake up, wishing myself back to sleep. Then my alarm went off and I realized I was awake! Of course my pain started up again once I was up and moving but what ecstasy to have those few moments after years of constant pain. I am a believer in this massage therapist! Problem is her availability. I only get in once every other week or so. There is an intensive program in Sedona AZ that I'm looking into. You get 3 hours daily of this therapy and it's 2-3 weeks long. I am so anxious for this pain to end and I am seeing a light at the end of the tunnel. I'm ready to sprint to the finish line! I am trying to figure out how I can make it work with my finances, insurance, and time off from work. If you haven't tried myofascial release therapy, find a John Barnes trained therapist and give it a few sessions. They should be able to tell you at the first session if they feel scarring and can help you. I mention John Barnes therapists because many massage therapists believe they're trained in myofascial release but it's not the same thing. I've received both. There's a difference. If you're close to Sedona, I've heard that you can book appointments for a single session instead of the intensive program.

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I have been dealing with Fibromyalgia for many years and have managed to rideout each episode. However, over the last few years the pain has increased, my nervous system is in overdrive and I have trouble performing the simplest of chores. I am in a constant flight or fight mode an unable to relax, socialize or enjoy any aspect of my life. Doctor to doctor and all they can tell me is you have FMS, sorry. I have had many types of injections and a spinal chord stimulator implanted. I live in the San Diego area and can not find a doctor who will take an interest in helping to improve my quality of life. Has anyone had success with any kind of treatment?

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@pharis022

I have been dealing with Fibromyalgia for many years and have managed to rideout each episode. However, over the last few years the pain has increased, my nervous system is in overdrive and I have trouble performing the simplest of chores. I am in a constant flight or fight mode an unable to relax, socialize or enjoy any aspect of my life. Doctor to doctor and all they can tell me is you have FMS, sorry. I have had many types of injections and a spinal chord stimulator implanted. I live in the San Diego area and can not find a doctor who will take an interest in helping to improve my quality of life. Has anyone had success with any kind of treatment?

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@pharis022 hi welcome to this wonderful group lots of people talk about Fibromyalgia ,me included Ive had it for a long time All the prescription meds didn't really help in one way or other .Finally I went holistic using a product called Fibro Malic from Vitacost .com As long as I take it I dont experience pain.I have osteoarthritis so am on Meloxicam for this. I do chair exercises water aerobics ,stay active .For tight muscles I have a Tens unit that relaxes my muscles ,isometric exercises will help.When Im on edge I take Nerve Tonic its a homeopathic med that works for me Its been a uphill battle since Dr,s dont know cause or cure so we Fibro warriors have to find out what helps .

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@pharis022

I have been dealing with Fibromyalgia for many years and have managed to rideout each episode. However, over the last few years the pain has increased, my nervous system is in overdrive and I have trouble performing the simplest of chores. I am in a constant flight or fight mode an unable to relax, socialize or enjoy any aspect of my life. Doctor to doctor and all they can tell me is you have FMS, sorry. I have had many types of injections and a spinal chord stimulator implanted. I live in the San Diego area and can not find a doctor who will take an interest in helping to improve my quality of life. Has anyone had success with any kind of treatment?

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@pharis022 Can you access Scripps Institute n La Jolla? I know from personal experience that the staff at Scripps Green are very good in their chosen specialties. Like you @lioness and others, I suffer from fibro, plus other autoimmune disorders. This sudden change in the weather has me flipping out.
Ginger

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@lioness

@pharis022 hi welcome to this wonderful group lots of people talk about Fibromyalgia ,me included Ive had it for a long time All the prescription meds didn't really help in one way or other .Finally I went holistic using a product called Fibro Malic from Vitacost .com As long as I take it I dont experience pain.I have osteoarthritis so am on Meloxicam for this. I do chair exercises water aerobics ,stay active .For tight muscles I have a Tens unit that relaxes my muscles ,isometric exercises will help.When Im on edge I take Nerve Tonic its a homeopathic med that works for me Its been a uphill battle since Dr,s dont know cause or cure so we Fibro warriors have to find out what helps .

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@ginger Thanks

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@gingerw

@pharis022 Can you access Scripps Institute n La Jolla? I know from personal experience that the staff at Scripps Green are very good in their chosen specialties. Like you @lioness and others, I suffer from fibro, plus other autoimmune disorders. This sudden change in the weather has me flipping out.
Ginger

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@ginger I agree with you weather changes are not fun

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Hi Ginger. I am certainly NOT happy ur flipping out from pain but at least there might b hope for me! I tried to sit straight and not hunched over- I am getting a fast advancing scoliosis- that is goving me mid and upper back spasms. Anyone give me any hints. I am very frightened as I live alone and my son's m i l lives in his basement. He has 4 kids and 3 brs and they r all up a flight of steps. I am worried about what will become of me. I am an unusual 74 y o with a much younger sort of bf. He gave me a massage which hurt but helped a lot. Cannot afford them every day and only see him on occasion. He lives 1 and a half hours away and if he works all day – usually 6 days a week, he is too tired to give me the long massage he did yesterday. He got rid – temporarily- of a lot of spasm. My family hates him and doesn't know I am still seeing him..
Even if I wanted him to live here it would be iimpossible and he is lazy. As my gf says he thinks he is on vacation. No no help there. So I am stuck. Any suggestions? Trying to get to PT but having a flare of of gastroparesis which causes me extreme fatigue.Thanks for listening.
Toni.K

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@marcyk

Hi Ginger. I am certainly NOT happy ur flipping out from pain but at least there might b hope for me! I tried to sit straight and not hunched over- I am getting a fast advancing scoliosis- that is goving me mid and upper back spasms. Anyone give me any hints. I am very frightened as I live alone and my son's m i l lives in his basement. He has 4 kids and 3 brs and they r all up a flight of steps. I am worried about what will become of me. I am an unusual 74 y o with a much younger sort of bf. He gave me a massage which hurt but helped a lot. Cannot afford them every day and only see him on occasion. He lives 1 and a half hours away and if he works all day – usually 6 days a week, he is too tired to give me the long massage he did yesterday. He got rid – temporarily- of a lot of spasm. My family hates him and doesn't know I am still seeing him..
Even if I wanted him to live here it would be iimpossible and he is lazy. As my gf says he thinks he is on vacation. No no help there. So I am stuck. Any suggestions? Trying to get to PT but having a flare of of gastroparesis which causes me extreme fatigue.Thanks for listening.
Toni.K

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@marcyk hope you don't mind me interjecting here. I heard that chiropractic treatment can help with scoliosis I live in a senior building and a man who has scoliosis ask me so I did ask my chiropractor he said he could help if its early . Just information for you I have a lot of back issues and use a Tens unit maybe before your byf. Massages he could put Tens on first it relaxes the muscles

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@pharis022

I have been dealing with Fibromyalgia for many years and have managed to rideout each episode. However, over the last few years the pain has increased, my nervous system is in overdrive and I have trouble performing the simplest of chores. I am in a constant flight or fight mode an unable to relax, socialize or enjoy any aspect of my life. Doctor to doctor and all they can tell me is you have FMS, sorry. I have had many types of injections and a spinal chord stimulator implanted. I live in the San Diego area and can not find a doctor who will take an interest in helping to improve my quality of life. Has anyone had success with any kind of treatment?

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@phariss022
I dealt with Fibro for many, many years until I came upon things that helped me. The regimen took approximately 2-3 years for it all to come together to help me. It's alot, but it worked.
1. I went on a low does of Amitriptalyn (spelling?), about 10 mg. This was used not as a psychotropic drug but as a drug to help me get into a deep, healing sleep.
2. I started aquatic PT. The warm water worked wonders.
3. I went for a THERAPUTIC massage every other week.
4. I went to a chiroprator in between.
5. I lost weight on Weight Watchers.
6. I started walking. My hubby actually had to drag me around until I could do it on my own.
7. Once I was able to walk on my on, I started to exercise….tread mill, weights, etc.
Now, although I no longer have Fibro pain, if someone presses in on one of those points, ouch!!
I did all this while I worked full time and went to graduate school.
Hope this helps.
Ronnie (GRANDMAr)

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