1. < Chronic Pain

Canadian needs desperate help: What can I do for all over body pain?

Posted by chronicpaincanada @chronicpaincanada, Apr 16, 2022

I've been suffering from all over body pain so bad it's difficult to walk in the mornings and throughout the day also plus ongoing issues with headaches and nightmares and never ending chest infections and so much more.

I'm to the point where the doctors keep sending me everywhere as they don't have answers.

Can I speak to someone at one of your facilities about options.?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

chronicpaincanada | @chronicpaincanada | Apr 22, 2022
In reply to @rwinney "Hello @chronicpaincanada. I'm sorry to learn about the loss your chronic conditions have caused. I understand..." + (show)
@rwinney

Hello @chronicpaincanada. I'm sorry to learn about the loss your chronic conditions have caused. I understand you are frustrated and disappointed, and I empathize.

After 20 years and only being age 42, I encourage you to reassess your circumstances. Do you think doctors have been incompetent? Do you think there may be a magic fix, cure or medication that can help you? Its confusing and draining when all we chronic pain sufferers want is to be better.

Based on my experience with chronic pain throughout my body, doctors having no answers, and taking opiates, I strongly encourage you to take a look at this video from Mayo Clinic's Dr. Sletten on Central Sensitization Syndrome. It may bring a new perspective. Here it is:


Do you mind getting back to me with your thoughts on this video?

Also, @loribmt posted a link to Mayo Clinic for you to apply. Have you yet? If not, do you plan to?

Jump to this post

Hi

I've been through similar with all my treating doctors and this is
definitely something that lead me down the path of physical therapy and
specialized workouts and meditation that didn't work.

147 medications and 14 treatment facilities offering physical treatment
and psychological intervention that all failed and that put me into a
deeper pain level and sleepless nights. Over 20yrs of hearing all these so
called treatments and people saying just go for a walk or swim LOL
hilarious, I move a leg or arm and I can't walk or talk.

REPLY
3 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 23, 2022
In reply to @chronicpaincanada "Hi I've been through similar with all my treating doctors and this is definitely something that..." + (show)
@chronicpaincanada

Hi

I've been through similar with all my treating doctors and this is
definitely something that lead me down the path of physical therapy and
specialized workouts and meditation that didn't work.

147 medications and 14 treatment facilities offering physical treatment
and psychological intervention that all failed and that put me into a
deeper pain level and sleepless nights. Over 20yrs of hearing all these so
called treatments and people saying just go for a walk or swim LOL
hilarious, I move a leg or arm and I can't walk or talk.

Jump to this post

@chronicpaincanada What are your diagnoses? Do you mind sharing what your daily routine looks like? How about what small sliver of joy you manage to find? It is helpful if you share a little more about yourself so other members may chime in with suggestions. Most importantly I want you to know that there is hope, if you open your mind to hope. What motivates you to be in a better place?

REPLY
skeleton | @skeleton | Apr 24, 2022
In reply to @rwinney "Hello @chronicpaincanada. I'm sorry to learn about the loss your chronic conditions have caused. I understand..." + (show)
@rwinney

Hello @chronicpaincanada. I'm sorry to learn about the loss your chronic conditions have caused. I understand you are frustrated and disappointed, and I empathize.

After 20 years and only being age 42, I encourage you to reassess your circumstances. Do you think doctors have been incompetent? Do you think there may be a magic fix, cure or medication that can help you? Its confusing and draining when all we chronic pain sufferers want is to be better.

Based on my experience with chronic pain throughout my body, doctors having no answers, and taking opiates, I strongly encourage you to take a look at this video from Mayo Clinic's Dr. Sletten on Central Sensitization Syndrome. It may bring a new perspective. Here it is:


Do you mind getting back to me with your thoughts on this video?

Also, @loribmt posted a link to Mayo Clinic for you to apply. Have you yet? If not, do you plan to?

Jump to this post

Most informative video I have ever heard. I wish I lived in Fl so I could partake of this brilliance. Dr Sletten gets it. He makes me feel there is hope for me after all. I am going to ask my PT to watch this video. Thank you so much for sharing.

REPLY
1 reply
willows | @willows | Apr 24, 2022
In reply to @chronicpaincanada "Hi I've been through similar with all my treating doctors and this is definitely something that..." + (show)
@chronicpaincanada

Hi

I've been through similar with all my treating doctors and this is
definitely something that lead me down the path of physical therapy and
specialized workouts and meditation that didn't work.

147 medications and 14 treatment facilities offering physical treatment
and psychological intervention that all failed and that put me into a
deeper pain level and sleepless nights. Over 20yrs of hearing all these so
called treatments and people saying just go for a walk or swim LOL
hilarious, I move a leg or arm and I can't walk or talk.

Jump to this post

So sorry for your problem. I can sympathize because I had pain that lasted for many years. Thankfully it is now under control with medication. Your journey seems daunting. I do believe that if you keep searching you will stumble upon the right answers.

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 24, 2022
In reply to @skeleton "Most informative video I have ever heard. I wish I lived in Fl so I could..." + (show)
@skeleton

Most informative video I have ever heard. I wish I lived in Fl so I could partake of this brilliance. Dr Sletten gets it. He makes me feel there is hope for me after all. I am going to ask my PT to watch this video. Thank you so much for sharing.

Jump to this post

@skeleton You are very welcome. Dr. Sletten's pain rehabilitation program is offered at all 3 Mayo Clinic locations, Minnesota, Arizona and Florida.

REPLY
1 reply
mikaylar | @mikaylar | Apr 25, 2022

Have you been checked for Lymes?

REPLY
oldkarl | @oldkarl | Apr 25, 2022
In reply to @chronicpaincanada "Hi I've been through similar with all my treating doctors and this is definitely something that..." + (show)
@chronicpaincanada

Hi

I've been through similar with all my treating doctors and this is
definitely something that lead me down the path of physical therapy and
specialized workouts and meditation that didn't work.

147 medications and 14 treatment facilities offering physical treatment
and psychological intervention that all failed and that put me into a
deeper pain level and sleepless nights. Over 20yrs of hearing all these so
called treatments and people saying just go for a walk or swim LOL
hilarious, I move a leg or arm and I can't walk or talk.

Jump to this post

Geez, @chronicpaincanada, That is a rough one. I know, because I have had much of the same crap. However, a few years ago I was started by a smart doctor down the path of genetic searching. I was so naive genetically I did not have any idea that I had myeloma (a form of Cancer) all over my body, and that it was mutating into Amyloidosis, Gelsolin and some others. I was too cheap to spring for the whole genome analysis, however, so The answers came slowly. But now I am getting the whole thing from Nebula. But I have learned I have a snoot-full of disorders and diseases and syndromes, each of which has its own dirty linen. Anyway, tell your doc to not be so greedy that they cannot help you get the answers which are probably found in a whole genome analysis from one of the better labs, such as Nebula, GeneDX, Sequencing.com, etc. Then talk with a genetic counselor about what it means. oldkarl

REPLY
sasilinsky | @sasilinsky | Apr 25, 2022
In reply to @rwinney "@skeleton You are very welcome. Dr. Sletten's pain rehabilitation program is offered at all 3 Mayo..." + (show)
@rwinney

@skeleton You are very welcome. Dr. Sletten's pain rehabilitation program is offered at all 3 Mayo Clinic locations, Minnesota, Arizona and Florida.

Jump to this post

My daughter found his 3 week program in Jacksonville, FL to be very helpful for her chronic pain.

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 25, 2022
In reply to @sasilinsky "My daughter found his 3 week program in Jacksonville, FL to be very helpful for her..." + (show)
@sasilinsky

My daughter found his 3 week program in Jacksonville, FL to be very helpful for her chronic pain.

Jump to this post

@sasilinsky Thanks so much for sharing positive feedback about your daughter's Mayo Pain Rehab experience. I'm pleased to hear it. How long ago did she attend?

I personally refer to it as my re-birth. I got more out of it than I could have ever imagined, physically, emotionally and behaviorally.

What positive changes in your daughter were you most aware of?

REPLY
1 reply
sasilinsky | @sasilinsky | Apr 25, 2022
In reply to @rwinney "@sasilinsky Thanks so much for sharing positive feedback about your daughter's Mayo Pain Rehab experience. I'm..." + (show)
@rwinney

@sasilinsky Thanks so much for sharing positive feedback about your daughter's Mayo Pain Rehab experience. I'm pleased to hear it. How long ago did she attend?

I personally refer to it as my re-birth. I got more out of it than I could have ever imagined, physically, emotionally and behaviorally.

What positive changes in your daughter were you most aware of?

Jump to this post

So glad it helped you. I think one of the most helpful things for her was related to ways of dealing with other people’s assumptions, attitudes and short-comings (which everyone has). Communication is key! I think she went about 10 years ago but (if I remember correctly) went for a little “tune-up”/reunion about 6 years ago.

REPLY
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