Debilitating yet intermittent Head/Neck/Back Pain. Psychosomatic?

Posted by karen1945 @karen1945, May 30, 2021

I have tried everything to relieve my pain. After seeing my PCP, as well as neurologists, who have found no cause for the pain, and seeing a chiropractor, massage therapist, physical therapist, and acupuncturist with no relief, I am about at the end of my rope. My pain journey began 20 years ago, when I had cancer. Since that time, I have had intermittent, debilitating pain. I can go for weeks with no pain, only to have it return and remain for weeks before departing again. Pain meds have had no effect on it, nor have muscle relaxers. I just have to live with it until it departs again for however long it chooses. I go between the heating pad, neck massager, and cold packs to try to alleviate it as much as I can.

The odd thing is that I can be distracted from it if I am totally engaged in an enjoyable activity or in a lively discussion. Only to have it return as soon as the distraction was over. This all tells me that my pain is most likely psychosomatic, rather than having any physical cause. The last thing I want is to be put on some kind of mood-altering medication, or some powerful addictive pain medication. I need pain management, but probably of a psychiatric nature. Has anyone else had this type of pain? How have you dealt with it?

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

@rwinney

@adjude3 Hello there, welcome to Connect. I believe you're replying to @karen1945 regarding similar symptoms. Hopefully she will chime in with an update on how she is doing since her post of 2021.

Much of your symptoms mimic Central Sensitization Syndrome (CSS) which sort of helped me explain the unexplainable when I was experiencing symptoms like yours with pins and needles, flares that would come and go, and crazy feelings throughout the body. Our central nervous system can be upregulated in ways that amplify pain signals whereas you feel things more than someone else might. Central sensitization can happen from traumatic life events, surgeries, even Covid. So much of the symptoms are tied between cognitive errors, emotional distress, physical deconditioning, and chemical use. So, yes, psychosomatic plays a role. Perhaps watching Dr Sletten's video on CSS will help shed some light on what you may be experiencing.

Mayo Clinic's Dr. Sletten- Central Sensitization Syndrome:

After watching the video will you get back to me and let me know if any thing you learned resonates? I'll be looking forward to your response.

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@rwinney Thank you so much for your reply. Yes I watched Dr Sletten's video and I feel he hit the nail on the head. So I immediately sent a message and the video link to my PCP. I have an appointment with him on 2/28/24. I'm so ready for a diagnosis and cure or relief that it will never occur again.
Best regards,
April

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@adjude3

@rwinney Thank you so much for your reply. Yes I watched Dr Sletten's video and I feel he hit the nail on the head. So I immediately sent a message and the video link to my PCP. I have an appointment with him on 2/28/24. I'm so ready for a diagnosis and cure or relief that it will never occur again.
Best regards,
April

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April, I'm happy to have given you a sense of new direction. Hopefully your PCP is receptive to learning along with you and embraces thinking outside the box. Best of luck at your visit this week! It's a great place to start understanding the why behind the what and working with your PCP. Please keep me posted on how all goes. And by all means, stay hopeful.

PS: If interested, poke around my profile and conversations where you'll learn more about my CSS experience and time spent at Mayo's Pain Rehab Center in FL. Getting a proper diagnosis after several years and going through that 3 week program was life-changing for me. I'd be happy to help further if you have any questions but I don't want to overwhelm you with too much info right now.

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@rwinney

April, I'm happy to have given you a sense of new direction. Hopefully your PCP is receptive to learning along with you and embraces thinking outside the box. Best of luck at your visit this week! It's a great place to start understanding the why behind the what and working with your PCP. Please keep me posted on how all goes. And by all means, stay hopeful.

PS: If interested, poke around my profile and conversations where you'll learn more about my CSS experience and time spent at Mayo's Pain Rehab Center in FL. Getting a proper diagnosis after several years and going through that 3 week program was life-changing for me. I'd be happy to help further if you have any questions but I don't want to overwhelm you with too much info right now.

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@rwinney OMGosh you had eye surgery too. I've had RK at 30yo (6/85), Cataracts at 62yo (10/17) and most recently right eye cornea transplant due to a hereditary eye disease called Fuchs Corneal Dystrophy. I'm guessing left eye will be next. My first episode "head to toe" pins and needles started in 8/2018. I've had many surgeries in-between and often wondered if one of them triggered the entire pain issue.

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@adjude3

@rwinney OMGosh you had eye surgery too. I've had RK at 30yo (6/85), Cataracts at 62yo (10/17) and most recently right eye cornea transplant due to a hereditary eye disease called Fuchs Corneal Dystrophy. I'm guessing left eye will be next. My first episode "head to toe" pins and needles started in 8/2018. I've had many surgeries in-between and often wondered if one of them triggered the entire pain issue.

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That very well could be the case for you. CSS is something that can't be proven through a test so it's more along the lines of process of elimination and connecting the dots.

I had corneal transplants and cataract surgeries on both eyes when I was 43. My father passed along Fuchs dystrophy to me. My eyes are doing great now, thankfully, just sensitization symptoms from CSS.

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Please check out Rachel Zoffness' Pain Management Workbook. Pain is never just mechanical or psychological.

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@rwinney

That very well could be the case for you. CSS is something that can't be proven through a test so it's more along the lines of process of elimination and connecting the dots.

I had corneal transplants and cataract surgeries on both eyes when I was 43. My father passed along Fuchs dystrophy to me. My eyes are doing great now, thankfully, just sensitization symptoms from CSS.

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Jaw drop. I don't believe Fuchs is common. I see my eye and primary doctors tomorrow. I'll definitely share this with him. Thank you Rachel.

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@adjude3

Jaw drop. I don't believe Fuchs is common. I see my eye and primary doctors tomorrow. I'll definitely share this with him. Thank you Rachel.

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Nope, Fuch's is not common. Wow, you've got a full day tomorrow. Good luck at your appointments!

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@rwinney

Nope, Fuch's is not common. Wow, you've got a full day tomorrow. Good luck at your appointments!

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I spoke to both doctors. Neither had heard of any correlation of Fuchs to CSS or Fuchs to Celiacs. Fuchs and Celiacs is discussed on Celiac website, search under blogs (I was warned I cannot post links) topic 85636 fuchs dystrophy.
I cannot find anything anywhere on Fuchs to CSS. Both doctors were very interested and said they would do some research on both. Seriously it's not a big deal either way, I just found our commonalities very interesting. And btw I do not have celiacs.
Eye doctor said my eyes have not changed since 6 months ago. I only had right eye DMEK and wear sclera lens on both. He said second surgery not necessary rn.

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@adjude3

I spoke to both doctors. Neither had heard of any correlation of Fuchs to CSS or Fuchs to Celiacs. Fuchs and Celiacs is discussed on Celiac website, search under blogs (I was warned I cannot post links) topic 85636 fuchs dystrophy.
I cannot find anything anywhere on Fuchs to CSS. Both doctors were very interested and said they would do some research on both. Seriously it's not a big deal either way, I just found our commonalities very interesting. And btw I do not have celiacs.
Eye doctor said my eyes have not changed since 6 months ago. I only had right eye DMEK and wear sclera lens on both. He said second surgery not necessary rn.

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Good morning @adjude3 - Oh dear, my apologies for any confusion on how I presented my CSS case to you. Fuchs itself did not cause my CSS, I believe the stressful experience of it happening and how I responded at that time in my life (*psychosomatic*), contributed to the central sensitization upregulation of permanent changes within my central nervous system. I began experiencing CSS symptoms when I was young and throughout my life symptoms had gone through ebbs and flows of flares and quieter times.

Fuchs to CSS or Fuchs to Celiac is non-related from a perspective of no, neither directly causes CSS however, central sensitization syndrome can be triggered by traumatic childhood events, surgeries, death, chronic conditions like Fibromyalgia, IBS, etc. - basically when a person's nervous system is persistently in a high activity state.

Here is an excellent resource for better clarity -
National Institutes of Health - Central Pain Syndrome:

- https://www.ncbi.nlm.nih.gov/books/NBK553027/

I'm glad you don't have Celiac disease. Check that of the list. And great news on not needing another eye surgery presently. Smooth sailing for now!

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