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.

@gingerw

@julie2019 Welcome to Mayo Connect. We are a diverse group of people, patients and caregivers alike, who share their experiences and support to help others along their journey. One thing that stuck out to me was your comment "Each month is becoming more of a vicious cycle of flare ups, migraines and depression." Given your age and other factors, might there be a hormonal component to this all? If you have not had a workup by an internal medicine doctor, or endocrinologist, perhaps that might help solve your current issues? Any changes like a different living situation or work environment might be at play, with a reaction to something environmental. I hope this has given you some thoughts of pathways to pursue, and that you will let us know what you find out.
Ginger

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Thank you so much!! I definitely need to have my hormones checked! Could be very helpful

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@rwinney

Hi Julie and welcome!
I must say you sound like a brave, persevering woman who seems to be at the end of her rope. No matter the diagnosis, day to day chronic pain is absolutely exhausting. Then sprinkle in the kids, spouse, house, job…
there is only so much pushing one person can do. Important to understand when you've reached your limit. I lived and worked through alot as to not let my family, friends, employer, employees down. Ultimately my perseverance was admirable but, at the end of the day I did no favors for anyone including myself.

I eventually consented to short term disability and worked very hard at figuring out my health, having treatments, trying new medications. Thought I could figure it all out during that time and miraculously get fixed. My story was built around eye disease, chronic migraine and cervical/spinal pain. My temporary disability turned permanent and I later was diagnosed with Small Fiber Poly Neuropathy. This, after 3 years of searching, and alot of trial and error, finally made sense of my random wide spread sensations and pains. I used to wake up and feel like Id been hit by train.

I'm truly sorry to hear your story and do relate. My wish for you is that you recognize your needs, demand to be your best advocate (which you deserve), keep pushing Drs to explore or find new doctors like a neurologist, if you haven't already, to rule things out. Being on Connect is a great way to be your own advocate. Research, look and listen. You will find a wealth of knowledge and experience to learn from.

Good luck in your journey and all the best.
Be well.
Rachel

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Thank you so much!! I might have to take a break from work after this school year. Until then, I will continue to talk to various doctors, undergo more testing and trying anything I can to get some answers!!

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@rarelybees2889

Hi new here. I have autoimmune issues also chronic fatigue, pinched nerve. Trying the steriod shots soon for neck pain due to pinched nerves. Anyone go down this road?

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@rarelybees2889

I have arthritis in several places and bursitis in my shoulder. I'm a pianist, and the pain in the base of my thumb was making playing really painful. I had an excruciatingly painful cortisone injection under x-ray guidance, in four spots. Almost no more pain in the specific places he pumped it in. It will be unbearable again before I get another injection. My wife and I have had injections in shoulder, hip, and knees.

It is so good to have relief. The unfortunate thing is that it is a temporary fix, which is true for many medications and injections. It's almost worth the pain of injections to give me a respite.

I wish you well in your injection treatment. Is the pain non-stop? Do you sleep okay? Often, chronic, non-stop pain drains your energy, and can trigger depression. Are you doing ok mentally and emotionally? I pray that you'll get some relief from the treatments.

Jim

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@mlross4508

Have you looked into trying Myofascial release therapy or MFR? I too have had trouble standing or sitting for more than 5-10 minutes before my feet start to burn. Since I’ve been having MFR therapy, I have been able to do much more , still have some pain but is tolerable enough to enjoy life. I too was very active but a fall and 5 back surgeries, including a spinal fusion, a Neuro stimulator, and many more alternative options gave me no hope until I found the benefits of MFR. It’s a specialized form of PT, so if you do pursue, be careful to make sure the therapist has had the special training.
Good luck and hope things improve your quality of life !

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Thank you I feel this is where I get healed

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Hi, My name is David and I have many health issues. I will mention the health issue which affects my quality of life the most. It's pain, pain that is hard to describe so others can understand, pain that affects those close to me, pain that has turned my life upsidedown, pain that has no cure only very limited treatment available to help one get through each day of suffering. My pain comes from a disease or condition, I added condition because I'm not sure calling it a disease is correct. I have been told by two different neurosurgeons I have arachnoiditis caused by the dyes that were used many years ago for tests involving the spine, and neither one of them could or would help me. I'm searching for a doctor who treats arachnoiditis in my area, as close as possible to my home. Traveling is almost impossible because of the pain or the lack of money. The only treatment that helped me have a decent quality of life was from opioids and we all know about our government's war on opioids. My opioids were reduced so much I went from being very active to in bed almost 24 hours a day. My ability to continue fighting this horrible is almost gone.I'm rambling on here and having trouble concentration I'll close for now.

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@dbk

Hi, My name is David and I have many health issues. I will mention the health issue which affects my quality of life the most. It's pain, pain that is hard to describe so others can understand, pain that affects those close to me, pain that has turned my life upsidedown, pain that has no cure only very limited treatment available to help one get through each day of suffering. My pain comes from a disease or condition, I added condition because I'm not sure calling it a disease is correct. I have been told by two different neurosurgeons I have arachnoiditis caused by the dyes that were used many years ago for tests involving the spine, and neither one of them could or would help me. I'm searching for a doctor who treats arachnoiditis in my area, as close as possible to my home. Traveling is almost impossible because of the pain or the lack of money. The only treatment that helped me have a decent quality of life was from opioids and we all know about our government's war on opioids. My opioids were reduced so much I went from being very active to in bed almost 24 hours a day. My ability to continue fighting this horrible is almost gone.I'm rambling on here and having trouble concentration I'll close for now.

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David, I know the feeling of terrible pain for which there's no known cure. I know that there's been an active discussion about arachnoiditis, if you can scroll down through list of discussions under chronic pain. I haven't figured out how to send copy and send links, but there are others who can. Maybe @johnbishop or @hopeful33250 could help out with helpful links.

I'm a lucky beneficiary of the government opioid fiasco, as well. But I won't write anything more so John or Theresa can see this message.

Jim

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Welcome and Good evening David, @dbk. It seems that you have been a member for several months. Thanks for deciding to jump in and reveal your major health concern. It is the same as mine…..pain. We dwell on things like…how much pain will we have and how long will it last this time. When it is chronic…we commit most of our waking hours in attempts to manage and control pain. If I understood your words correctly, constant pain is interfering with your ability to concentrate and reducing your quality of life immeasurably.

By the way, I think arachnoiditis is classified as a pain disorder. What is the area where you are searching for a clinic that can help you? Do you happen to live in or near a state that has legalized medical cannabis for chronic pain? That may be an alternative for you to explore with your chosen doctor. All three of my current clinicians have knowledge of my commitment to using medical cannabis. You can get a lot of assistance from the dispensary staff for initial product selection.

Sometimes pain can be reduced by distractions. Do you participate in any activities during your day? Are there times during your day when you are able to leave your bed and walk around the house? There have been quite a few older posts on Connect about arachnoiditis. I will place a link below. You can search for them using the search at the top of the page. Or you can start a new and updated discussion which may attract others with similar concerns.

Link on Connect
https://connect.mayoclinic.org/discussion/arachnoiditis/
May you be free of suffering if only for a few precious moments. I am putting you on my follow up list. Chris

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@dbk

Hi, My name is David and I have many health issues. I will mention the health issue which affects my quality of life the most. It's pain, pain that is hard to describe so others can understand, pain that affects those close to me, pain that has turned my life upsidedown, pain that has no cure only very limited treatment available to help one get through each day of suffering. My pain comes from a disease or condition, I added condition because I'm not sure calling it a disease is correct. I have been told by two different neurosurgeons I have arachnoiditis caused by the dyes that were used many years ago for tests involving the spine, and neither one of them could or would help me. I'm searching for a doctor who treats arachnoiditis in my area, as close as possible to my home. Traveling is almost impossible because of the pain or the lack of money. The only treatment that helped me have a decent quality of life was from opioids and we all know about our government's war on opioids. My opioids were reduced so much I went from being very active to in bed almost 24 hours a day. My ability to continue fighting this horrible is almost gone.I'm rambling on here and having trouble concentration I'll close for now.

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Hello @dbk,

Here is the link to a Connect conversation about arachnoiditis that @jimhd mentioned in his post to you. Just click on the link and read the many posts.
https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/
Here is a link from Mayo's website about pain treatment for this disorder, https://www.mayoclinic.org/departments-centers/pain-medicine/sections/conditions-treated/orc-20450067

After you read these links, will you post again?

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@dbk

Hi, My name is David and I have many health issues. I will mention the health issue which affects my quality of life the most. It's pain, pain that is hard to describe so others can understand, pain that affects those close to me, pain that has turned my life upsidedown, pain that has no cure only very limited treatment available to help one get through each day of suffering. My pain comes from a disease or condition, I added condition because I'm not sure calling it a disease is correct. I have been told by two different neurosurgeons I have arachnoiditis caused by the dyes that were used many years ago for tests involving the spine, and neither one of them could or would help me. I'm searching for a doctor who treats arachnoiditis in my area, as close as possible to my home. Traveling is almost impossible because of the pain or the lack of money. The only treatment that helped me have a decent quality of life was from opioids and we all know about our government's war on opioids. My opioids were reduced so much I went from being very active to in bed almost 24 hours a day. My ability to continue fighting this horrible is almost gone.I'm rambling on here and having trouble concentration I'll close for now.

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Hello David and welcome to Connect. I'm very sorry to learn of your suffering. Chronic pain is a world in which no-one can understand until living in it. You have found a team here of chronic pain allies. If nothing more may this experience bring you compassion and encouragement to keep fighting. I feel for you regarding opiods and the fact that in many cases of chronic pain there simply is no substitute. I'm an opioid user and by choice keep trying other options to reduce my need for opiod pain management. Currently I'm exploring medical cannabis and steadily climbing until hopefully I find a match for my pain. My heart goes out to you. I watched my mom (Chronic pain suffer of 40 years) get flat out cut off of opiods from her pain management Dr because she refused stimulator implants and injections. She was able to work with her PCP who she had a long, strong relationship over the years and continue her opiod treatment as she is by no means an abuser. My wish for you is that you find comfort in talking about your pain here on Connect, learn from others experience with your diagnosis and develop a plan going forward of how you will not let pain defeat you entirely. Here for you.
Rachel

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@dbk

Hi, My name is David and I have many health issues. I will mention the health issue which affects my quality of life the most. It's pain, pain that is hard to describe so others can understand, pain that affects those close to me, pain that has turned my life upsidedown, pain that has no cure only very limited treatment available to help one get through each day of suffering. My pain comes from a disease or condition, I added condition because I'm not sure calling it a disease is correct. I have been told by two different neurosurgeons I have arachnoiditis caused by the dyes that were used many years ago for tests involving the spine, and neither one of them could or would help me. I'm searching for a doctor who treats arachnoiditis in my area, as close as possible to my home. Traveling is almost impossible because of the pain or the lack of money. The only treatment that helped me have a decent quality of life was from opioids and we all know about our government's war on opioids. My opioids were reduced so much I went from being very active to in bed almost 24 hours a day. My ability to continue fighting this horrible is almost gone.I'm rambling on here and having trouble concentration I'll close for now.

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@dbk I'm so sorry you are in so much pain. I have fibromyalgia which affects not only my muscle nerves Besides the arachnoditis do you have other autoimmune problems. ? For me exercise helps a lot I do take Tramadol have since 2005 when I had a fracture of my back. I hope you can find something to give you relieve. Best wishes to you

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@rwinney

Hello David and welcome to Connect. I'm very sorry to learn of your suffering. Chronic pain is a world in which no-one can understand until living in it. You have found a team here of chronic pain allies. If nothing more may this experience bring you compassion and encouragement to keep fighting. I feel for you regarding opiods and the fact that in many cases of chronic pain there simply is no substitute. I'm an opioid user and by choice keep trying other options to reduce my need for opiod pain management. Currently I'm exploring medical cannabis and steadily climbing until hopefully I find a match for my pain. My heart goes out to you. I watched my mom (Chronic pain suffer of 40 years) get flat out cut off of opiods from her pain management Dr because she refused stimulator implants and injections. She was able to work with her PCP who she had a long, strong relationship over the years and continue her opiod treatment as she is by no means an abuser. My wish for you is that you find comfort in talking about your pain here on Connect, learn from others experience with your diagnosis and develop a plan going forward of how you will not let pain defeat you entirely. Here for you.
Rachel

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I’m a chronic pain sufferer and my doctors will not even offer opioids for pain!

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@dbk

Hi, My name is David and I have many health issues. I will mention the health issue which affects my quality of life the most. It's pain, pain that is hard to describe so others can understand, pain that affects those close to me, pain that has turned my life upsidedown, pain that has no cure only very limited treatment available to help one get through each day of suffering. My pain comes from a disease or condition, I added condition because I'm not sure calling it a disease is correct. I have been told by two different neurosurgeons I have arachnoiditis caused by the dyes that were used many years ago for tests involving the spine, and neither one of them could or would help me. I'm searching for a doctor who treats arachnoiditis in my area, as close as possible to my home. Traveling is almost impossible because of the pain or the lack of money. The only treatment that helped me have a decent quality of life was from opioids and we all know about our government's war on opioids. My opioids were reduced so much I went from being very active to in bed almost 24 hours a day. My ability to continue fighting this horrible is almost gone.I'm rambling on here and having trouble concentration I'll close for now.

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Prayers for you

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vklittle61, where are you? I have had trouble getting tramadol and adderall in Virginia and Delaware. Draconian laws made by politicians who don't have chronic pain are hurting real patients who need real medicine. I bought some cold medicine in a drug store and the clerk had to check my I.D. even for that because she said that teenagers are abusing regular cough syrup like dextromethorphan. I don't know what they are doing with it, I don't see how it could make them high, all it does is stop cough and barely that. Peggy

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@artscaping

Welcome and Good evening David, @dbk. It seems that you have been a member for several months. Thanks for deciding to jump in and reveal your major health concern. It is the same as mine…..pain. We dwell on things like…how much pain will we have and how long will it last this time. When it is chronic…we commit most of our waking hours in attempts to manage and control pain. If I understood your words correctly, constant pain is interfering with your ability to concentrate and reducing your quality of life immeasurably.

By the way, I think arachnoiditis is classified as a pain disorder. What is the area where you are searching for a clinic that can help you? Do you happen to live in or near a state that has legalized medical cannabis for chronic pain? That may be an alternative for you to explore with your chosen doctor. All three of my current clinicians have knowledge of my commitment to using medical cannabis. You can get a lot of assistance from the dispensary staff for initial product selection.

Sometimes pain can be reduced by distractions. Do you participate in any activities during your day? Are there times during your day when you are able to leave your bed and walk around the house? There have been quite a few older posts on Connect about arachnoiditis. I will place a link below. You can search for them using the search at the top of the page. Or you can start a new and updated discussion which may attract others with similar concerns.

Link on Connect
https://connect.mayoclinic.org/discussion/arachnoiditis/
May you be free of suffering if only for a few precious moments. I am putting you on my follow up list. Chris

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Hi my name is Edyie but I like to be called smilie. I suffer from depression and arthritis. I’m usually in the other group. How does anyone grocery shop, the bags are usually too heavy?

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@pfbacon

vklittle61, where are you? I have had trouble getting tramadol and adderall in Virginia and Delaware. Draconian laws made by politicians who don't have chronic pain are hurting real patients who need real medicine. I bought some cold medicine in a drug store and the clerk had to check my I.D. even for that because she said that teenagers are abusing regular cough syrup like dextromethorphan. I don't know what they are doing with it, I don't see how it could make them high, all it does is stop cough and barely that. Peggy

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I'm so sorry Peggy you can't get your Tramadol and your other Med so far
here in here where I live I've been able to get my Tramadol without any
problems from my doctor I don't know what the the bigger draconians are
doing to us it's not fair it's not right we need those meds we're not on
the StreetSquare not on the street

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