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Mentor

Central Sensitization - please share your stories

Posted by Rachel, Volunteer Mentor @rwinney, Apr 14, 2020

Hello everyone
I would like to better understand this diagnosis from personal experiences and compare what I feel to others accounts. I have not been diagnosed with central sensitization however, it seems to line up. Thank you very much and I look forward to reading your stories.
Rachel

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

tara333 | @tara333 | Apr 22, 2020

Hi all,
At the start of the year I was in the hospital for two weeks due to really intense migraines. I’ve had these migraines and neck/back pain , IBS and other general pain for years without ever having answers. When I got released they basically said go see a therapist and go to a chronic pain clinic. So the other week I finally spoke to a person from the chronic pain clinic (couldn’t see her in person due to covid-19) and after the standard conversation repeating everything I’ve been through and all my pain I was so worried she was going to put it all down to “mental health issues” like so many other doctors have told me. At the end of the conversation I said please can you tell me what you think is actually going on and she then mentioned how she believes it is central sensitisation ( the s is there cause I’m from Australia) she then went on to say she’ll call me in a couple weeks after speaking to her team and my doctor about a plan. After the phone call I burst into tears whilst reading about central sensitisation because after all these years I actually have a name/reason for my pain. It wasn’t all in my head. Now I’m trying to read up more about it and stumbled upon this conversation and just hearing that other people are going through what I’m going through is just crazy to me. It’s so hard to keep repeating I’m in pain knowing that no one is actually understanding that I am in pain cause they can’t see a physical reason for it. So sorry for ranting but I just wanted to share my experience so far. I should be hearing back from my pain clinic soon and hopefully they have a good plan for me.
Thank you if you’ve actually read all this.

REPLY
3 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 22, 2020
In reply to @tara333 "Hi all, At the start of the year I was in the hospital for two weeks..." + (show)
@tara333

Hi all,
At the start of the year I was in the hospital for two weeks due to really intense migraines. I’ve had these migraines and neck/back pain , IBS and other general pain for years without ever having answers. When I got released they basically said go see a therapist and go to a chronic pain clinic. So the other week I finally spoke to a person from the chronic pain clinic (couldn’t see her in person due to covid-19) and after the standard conversation repeating everything I’ve been through and all my pain I was so worried she was going to put it all down to “mental health issues” like so many other doctors have told me. At the end of the conversation I said please can you tell me what you think is actually going on and she then mentioned how she believes it is central sensitisation ( the s is there cause I’m from Australia) she then went on to say she’ll call me in a couple weeks after speaking to her team and my doctor about a plan. After the phone call I burst into tears whilst reading about central sensitisation because after all these years I actually have a name/reason for my pain. It wasn’t all in my head. Now I’m trying to read up more about it and stumbled upon this conversation and just hearing that other people are going through what I’m going through is just crazy to me. It’s so hard to keep repeating I’m in pain knowing that no one is actually understanding that I am in pain cause they can’t see a physical reason for it. So sorry for ranting but I just wanted to share my experience so far. I should be hearing back from my pain clinic soon and hopefully they have a good plan for me.
Thank you if you’ve actually read all this.

Jump to this post

@tara333 Hello and welcome to the conversation. I most definitely read your entire post! I'm right there with you in questioning whether its imagined pain and why I feel so much when others may not. Wow! Thank you so much for responding and helping to validate myself and others who experience this diagnosis.

I had a similar moment when I watched the Mayo Clinics video on Pain Central Sensitization. I cried and was so moved by its accuracy to me...it was like my very own blue print. I highly recommend you watch it.

Be well and best of luck with your team approach for helping you.
Rachel

REPLY
Tony Hart | @TonyHart87 | Apr 22, 2020
In reply to @tara333 "Hi all, At the start of the year I was in the hospital for two weeks..." + (show)
@tara333

Hi all,
At the start of the year I was in the hospital for two weeks due to really intense migraines. I’ve had these migraines and neck/back pain , IBS and other general pain for years without ever having answers. When I got released they basically said go see a therapist and go to a chronic pain clinic. So the other week I finally spoke to a person from the chronic pain clinic (couldn’t see her in person due to covid-19) and after the standard conversation repeating everything I’ve been through and all my pain I was so worried she was going to put it all down to “mental health issues” like so many other doctors have told me. At the end of the conversation I said please can you tell me what you think is actually going on and she then mentioned how she believes it is central sensitisation ( the s is there cause I’m from Australia) she then went on to say she’ll call me in a couple weeks after speaking to her team and my doctor about a plan. After the phone call I burst into tears whilst reading about central sensitisation because after all these years I actually have a name/reason for my pain. It wasn’t all in my head. Now I’m trying to read up more about it and stumbled upon this conversation and just hearing that other people are going through what I’m going through is just crazy to me. It’s so hard to keep repeating I’m in pain knowing that no one is actually understanding that I am in pain cause they can’t see a physical reason for it. So sorry for ranting but I just wanted to share my experience so far. I should be hearing back from my pain clinic soon and hopefully they have a good plan for me.
Thank you if you’ve actually read all this.

Jump to this post

Welcome to Connect @tara333! I'm so glad you found some comfort and answers. It's definitely helpful to have a name for what you are going through and now it sounds like you are doing a great job with doing continued research on it. Please do report back when you get a plan from the pain clinic too. How have you been treating your pain before your diagnosis?

REPLY
1 reply
tara333 | @tara333 | Apr 22, 2020
In reply to @TonyHart87 "Welcome to Connect @tara333! I'm so glad you found some comfort and answers. It's definitely helpful..." + (show)
@TonyHart87

Welcome to Connect @tara333! I'm so glad you found some comfort and answers. It's definitely helpful to have a name for what you are going through and now it sounds like you are doing a great job with doing continued research on it. Please do report back when you get a plan from the pain clinic too. How have you been treating your pain before your diagnosis?

Jump to this post

Hi tony,
It’s been a mixture of different pain medications and muscle relaxants. It’s all been trial and error to see what helps and at the moment the medications don’t seem to be helping that much but my doctor isn’t going to change them until we hear back from the pain clinic. Another way I’m managing is trying to get a routine down of daily activities even the smallest things like brushing my hair and teeth. Trying to focus on things outside of my pain (it’s quite hard) such as reading or writing. A lot of doctors put my pain down to mental health issues so even though I always fought to say no I know that’s not the main reason I have started to see a therapist and start a good mental health plan. So really I’ve not been doing anything to help the pain it’s more so what can I do to distract myself from the pain as long as possible. It gets quite hard though when i put the pain off for so long and then I go three to four days of intense pain.
I also want to mention a few months back I broke my ankle and ended up Surgery to fix it. Now a normal person would of bounced back from that now but I am still in the same pain I was when I was recovering so even though my ankle is healed my body is still treating it as if it is broken. I also had two spinal taps when I was in hospital earlier this year and they did then so incorrectly that I now have terrible nerve pain down my legs and pain in my lower back. Due to my central sensitisation these two instances are now Incredulity more painful for me than someone who doesn’t have central sensitisation.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 22, 2020
In reply to @tara333 "Hi tony, It’s been a mixture of different pain medications and muscle relaxants. It’s all been..." + (show)
@tara333

Hi tony,
It’s been a mixture of different pain medications and muscle relaxants. It’s all been trial and error to see what helps and at the moment the medications don’t seem to be helping that much but my doctor isn’t going to change them until we hear back from the pain clinic. Another way I’m managing is trying to get a routine down of daily activities even the smallest things like brushing my hair and teeth. Trying to focus on things outside of my pain (it’s quite hard) such as reading or writing. A lot of doctors put my pain down to mental health issues so even though I always fought to say no I know that’s not the main reason I have started to see a therapist and start a good mental health plan. So really I’ve not been doing anything to help the pain it’s more so what can I do to distract myself from the pain as long as possible. It gets quite hard though when i put the pain off for so long and then I go three to four days of intense pain.
I also want to mention a few months back I broke my ankle and ended up Surgery to fix it. Now a normal person would of bounced back from that now but I am still in the same pain I was when I was recovering so even though my ankle is healed my body is still treating it as if it is broken. I also had two spinal taps when I was in hospital earlier this year and they did then so incorrectly that I now have terrible nerve pain down my legs and pain in my lower back. Due to my central sensitisation these two instances are now Incredulity more painful for me than someone who doesn’t have central sensitisation.

Jump to this post

@tara333 I'm real sorry to hear of your pain and frustrations. So much of what you say resonates with me. It's wild. I concur on the psychological impact chronic pain has, then you mix it in with why is this affecting me this way. It does not seem normal or like others.

I, like you, spend alot of time focusing on mindfulness and meditation to help escape my pain. Sometimes, it's all I have left after maxing out all other options like medications, procedures that dont work. I'm also interested in hearing how your pain clinic plans on treating you. My findings and what Mayo's Pain Rehabilitation program indicate, are an all hands on deck approach with physical and occupational therapy, cognitive behavioral therapy (retraining the brain), psychology, medication overhaul, etc...A plan to desensitize. I will eventually enter this program for 3 weeks and hope for the best.

Thank you again for reaching out and sharing your experience.
Rachel

REPLY
Tony Hart | @TonyHart87 | Apr 23, 2020
In reply to @tara333 "Hi tony, It’s been a mixture of different pain medications and muscle relaxants. It’s all been..." + (show)
@tara333

Hi tony,
It’s been a mixture of different pain medications and muscle relaxants. It’s all been trial and error to see what helps and at the moment the medications don’t seem to be helping that much but my doctor isn’t going to change them until we hear back from the pain clinic. Another way I’m managing is trying to get a routine down of daily activities even the smallest things like brushing my hair and teeth. Trying to focus on things outside of my pain (it’s quite hard) such as reading or writing. A lot of doctors put my pain down to mental health issues so even though I always fought to say no I know that’s not the main reason I have started to see a therapist and start a good mental health plan. So really I’ve not been doing anything to help the pain it’s more so what can I do to distract myself from the pain as long as possible. It gets quite hard though when i put the pain off for so long and then I go three to four days of intense pain.
I also want to mention a few months back I broke my ankle and ended up Surgery to fix it. Now a normal person would of bounced back from that now but I am still in the same pain I was when I was recovering so even though my ankle is healed my body is still treating it as if it is broken. I also had two spinal taps when I was in hospital earlier this year and they did then so incorrectly that I now have terrible nerve pain down my legs and pain in my lower back. Due to my central sensitisation these two instances are now Incredulity more painful for me than someone who doesn’t have central sensitisation.

Jump to this post

Wow. That's quite the string of hard circumstances you've had @tara333 with a broken ankle and two rough spinal taps. I'm sorry you've had to endure it. You certainly are in good company here with dealing with chronic pain (especially around Central Sensitization) and perhaps @rwinney, @richman54660, @lorirenee1, @bonnieh218, and others can help give you some tips beyond meds that have worked for them for pain while you wait to hear back from the pain clinic.

REPLY
lorirenee1 | @lorirenee1 | Apr 23, 2020
In reply to @tara333 "Hi all, At the start of the year I was in the hospital for two weeks..." + (show)
@tara333

Hi all,
At the start of the year I was in the hospital for two weeks due to really intense migraines. I’ve had these migraines and neck/back pain , IBS and other general pain for years without ever having answers. When I got released they basically said go see a therapist and go to a chronic pain clinic. So the other week I finally spoke to a person from the chronic pain clinic (couldn’t see her in person due to covid-19) and after the standard conversation repeating everything I’ve been through and all my pain I was so worried she was going to put it all down to “mental health issues” like so many other doctors have told me. At the end of the conversation I said please can you tell me what you think is actually going on and she then mentioned how she believes it is central sensitisation ( the s is there cause I’m from Australia) she then went on to say she’ll call me in a couple weeks after speaking to her team and my doctor about a plan. After the phone call I burst into tears whilst reading about central sensitisation because after all these years I actually have a name/reason for my pain. It wasn’t all in my head. Now I’m trying to read up more about it and stumbled upon this conversation and just hearing that other people are going through what I’m going through is just crazy to me. It’s so hard to keep repeating I’m in pain knowing that no one is actually understanding that I am in pain cause they can’t see a physical reason for it. So sorry for ranting but I just wanted to share my experience so far. I should be hearing back from my pain clinic soon and hopefully they have a good plan for me.
Thank you if you’ve actually read all this.

Jump to this post

@rwinney @tara333 Ladies, Do not ever let doctors tell you that your pain is all in your head; that it is a psychological problem. Of course, intense pain leads to anxiety and depression, but the pain is real. The whole idea of central sensitization is that the brain is amped way too high, and gives you pain way beyond the initial injury, diagnosis. It is a problem of brain malfunction. Most people with Central Sensitization do have a pain history. Perhaps they have had fibromyalgia, achey joints, muscles; but the brain signals up the pain, way too much. However, you do have something wrong with your body. You are not just a psych patient. There is nothing wrong, too, about getting emotional support from being in pain. One of the things I love to do is listen to a cellist named Hauser. His music is stunning, and so is he. Oh my goodness, the man is way gorgeous. I just get taken in by him, and time goes by, and I notice that my pain is not bothering me. I have always liked men, so I can get easily distracted by a gorgeous face. Am I bad, or what? Whatever works! Go check out Hauser. I want to marry him. Don't tell my husband. Lori

REPLY
1 reply
lioness | @lioness | Apr 23, 2020

@lorirenee1 I,ll have to look up this handsome hunk . You tube is a blessing right now and all the music that is specials on T.V. right now along with the amazing pictures people are putting on here thanks John

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 23, 2020
In reply to @lorirenee1 "@rwinney @tara333 Ladies, Do not ever let doctors tell you that your pain is all in..." + (show)
@lorirenee1

@rwinney @tara333 Ladies, Do not ever let doctors tell you that your pain is all in your head; that it is a psychological problem. Of course, intense pain leads to anxiety and depression, but the pain is real. The whole idea of central sensitization is that the brain is amped way too high, and gives you pain way beyond the initial injury, diagnosis. It is a problem of brain malfunction. Most people with Central Sensitization do have a pain history. Perhaps they have had fibromyalgia, achey joints, muscles; but the brain signals up the pain, way too much. However, you do have something wrong with your body. You are not just a psych patient. There is nothing wrong, too, about getting emotional support from being in pain. One of the things I love to do is listen to a cellist named Hauser. His music is stunning, and so is he. Oh my goodness, the man is way gorgeous. I just get taken in by him, and time goes by, and I notice that my pain is not bothering me. I have always liked men, so I can get easily distracted by a gorgeous face. Am I bad, or what? Whatever works! Go check out Hauser. I want to marry him. Don't tell my husband. Lori

Jump to this post

@lorirenee1 Lol! You crack me up!! Thanks for that today. 😊

I'm on board with understanding this theory and diagnosis. It takes work for sure but, can be helpful when understood and accepted. It's great and so healthy to get caught up in happiness and distraction that can refocus your brain.

Without even knowing, I took the ability to just live comfortably without a care in the world, for granted. Wow, what a lucky place to have been.

Rachel

REPLY
1 reply
lorirenee1 | @lorirenee1 | Apr 23, 2020
In reply to @rwinney "@lorirenee1 Lol! You crack me up!! Thanks for that today. 😊 I'm on board with understanding..." + (show)
@rwinney

@lorirenee1 Lol! You crack me up!! Thanks for that today. 😊

I'm on board with understanding this theory and diagnosis. It takes work for sure but, can be helpful when understood and accepted. It's great and so healthy to get caught up in happiness and distraction that can refocus your brain.

Without even knowing, I took the ability to just live comfortably without a care in the world, for granted. Wow, what a lucky place to have been.

Rachel

Jump to this post

@lioness @rwinney Yes, do look up Hauser. His girlfriend is Benedetta Coretta, and she sings with him in some videos. She is gorgeous, too, of course. If you see a girl singing with him, with only her mouth and hair showing, that is Benedetta. They are one lovely couple, and I am so jealous of her. Steal him just for a few nights....what feet? I have feet? Seriously though, Rachel, it's been 2 years since I lived without a care in the world. Never could have imagined this. So I find distractions. Handsome ones. Lori

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