@johnbishop Thanks for the article. I will check it out. I've tried so much to help with the sleep.... the psychiatric meds have by far been the most help. Although it has taken over 10 months of tinkering, and playing around with different combinations and dosages. But, sometimes that's still not enough.
So I've started a "wellness" routine including trying to go to bed/wake up at the same times, not napping, eating at the same times each day, and doing some sort of physical activity every week, ideally 5 days for 45 minutes. @uldiver , I'm very interested in what you're saying about not exercising like a normal person. Have you found that less exercise helps you? Exercise seems to help my energy but it also gives me random aches and pains, when I seem to have plateaued.
I'm no medical professional, but I love to read about health/wellness so what books do you recommend?
Meditating also helps me a lot with sleeping, and sometimes gives me temporary relief from fatigue. One day I had debilitating fatigue, to the point I couldn't watch netflix even and everything sounded too loud. But I meditated for almost an hour, and was able to do normal activities for a couple hours after that.
I'm also going through a 12-week dialectical behavioral therapy program right now. We're starting by focusing on mindfulness. This is really helping me quickly, so maybe consider looking into this if you find that central sensitization has affected your mental health.
Have either of you heard about how medications can worsen central sensitization? I'm on viberzi for IBS, and about 5 psychiatric medications. I read somewhere that medications can worsen the condition...
A lot of questions here, I know - thanks everyone for the support as I continue down this journey.
@jgl15 I highly recommend 2 books written by Dr. Sood, a Mayo doctor with a mind/body practice. They are used in stress reduction classes and they are about mindfulness and reducing stress and anxiety. The Handbook for Happiness is like a workbook and the Guide to Stress free Living is more in-depth. I bought them both after looking at them in the Mayo gift shop and they are excellent. https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700
@jgl15 I highly recommend 2 books written by Dr. Sood, a Mayo doctor with a mind/body practice. They are used in stress reduction classes and they are about mindfulness and reducing stress and anxiety. The Handbook for Happiness is like a workbook and the Guide to Stress free Living is more in-depth. I bought them both after looking at them in the Mayo gift shop and they are excellent. https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700
Hi @jgl15, welcome to Connect. I'm tagging @relientkitten who shared the following link that may be helpful and she may be able to share her experiences with you here. This is the link she shared:
This is great info! I’ve been recently diagnosed with CS after 4 years of progressive inflammation which has now started to greatly impact my muscle tone, strength and stamina. I’ve been to dozens of doctors and finally Mayo. I’ve found that gym workouts (which was my form of therapy) leave me in a lot of pain late in the day in every joint. I wake up feeling great with no pain at all but by mid day, it’s a spiral downhill into massive inflammation. Has anyone else had this kind of experience? I’ve not found any medications that help.
@dwilkin, does the level of intensity of your workouts that you are using for your form of therapy make any difference in your pain level later in the day - if the workout is not as hard is your pain level better or worse later in the day?
@dwilkin, does the level of intensity of your workouts that you are using for your form of therapy make any difference in your pain level later in the day - if the workout is not as hard is your pain level better or worse later in the day?
If I work out even at a moderate pace (weights/Pilates/cardio) for 45 minutes (half at my rate 2-3 years ago) by 6 hours later, it can be very severe. Oddly, I could go on a bike ride for 20 miles and it would be better. I’ve found that the most I can now do without big payback by 7pm is a combo of just walking, moving, standing, being busy. But I’ve lost 10 pounds and lots of muscle mass and stamina. Lying down is the only thing that makes it go away after 45 minutes or so. I wake up with no pain! I note the progression though. More joints and more pain over the past 4 years - started in my knees. Now it’s pretty much every joint.
If I work out even at a moderate pace (weights/Pilates/cardio) for 45 minutes (half at my rate 2-3 years ago) by 6 hours later, it can be very severe. Oddly, I could go on a bike ride for 20 miles and it would be better. I’ve found that the most I can now do without big payback by 7pm is a combo of just walking, moving, standing, being busy. But I’ve lost 10 pounds and lots of muscle mass and stamina. Lying down is the only thing that makes it go away after 45 minutes or so. I wake up with no pain! I note the progression though. More joints and more pain over the past 4 years - started in my knees. Now it’s pretty much every joint.
Also I'd love feedback from anyone on this post about PTSD and it's relationship to CS. Over a period of 18 months prior to the onset of symptoms, I had life-changing events that were not of the good kind. I nearly died from twisted intestines and it was MAJOR emergency surgery. Subsequently, I had 4 other extremely traumatic events that elevated my stress level no doubt for an additional 18 months, on top of a high level exec job in NYC. I've read some links between elevated cortosol levels over a long period and that can lead to "re-wiring" of your neurology so that this stress state becomes the learned response constantly. Then my symptoms started. Anyone have info on this condition being tied to trauma? Thanks all.
Also I'd love feedback from anyone on this post about PTSD and it's relationship to CS. Over a period of 18 months prior to the onset of symptoms, I had life-changing events that were not of the good kind. I nearly died from twisted intestines and it was MAJOR emergency surgery. Subsequently, I had 4 other extremely traumatic events that elevated my stress level no doubt for an additional 18 months, on top of a high level exec job in NYC. I've read some links between elevated cortosol levels over a long period and that can lead to "re-wiring" of your neurology so that this stress state becomes the learned response constantly. Then my symptoms started. Anyone have info on this condition being tied to trauma? Thanks all.
When I read your post and hearing how you had emergency, major surgery, I thought that you might find our PICS discussion group of interest. This group discussed post-intensive-care-syndrome. All of these folks have discussed the emotional ramifications of emergency/major surgery. For many, it left some very difficult memories. I would encourage you to read this discussion and see how this syndrome might apply to what you are experiencing now. Here is the link,
I have only the highest praise for Mayo's Pain Rehab Program. I went through the program the first time 18 year's ago in Rochester. After continuing my exercise program and doing all I was told to do after finishing the program, I was completely pain-free within 3 months! At that time, I had been diagnosed with whole body complex regional pain syndrome. Before I went to Mayo Rochester I weighed 60 lobs and was being cared for by Hospice nurses. Mayo saved my life! The second time I was in PRC was in Mayo Jax program - again with complex regional pain syndrome - as the result of a serious accident. I cannot say enough good things about this program and its staff! I would recommend it to anyone with any sort of pain program that is impacting their life and their function. The program is robust and if you do exactly as asked you will come out having made enormous strides! I want to direct something to those writing about Central Sensitization. I think some of what has been said here is not accurate or is misinformed. I would like to see an expert in the field address this issue here online. I suggest the director of PRC, Mayo JAX. He would be an ideal person for talking about it.
Connect
Connect
Like
Helpful
Hug
@jgl15 I highly recommend 2 books written by Dr. Sood, a Mayo doctor with a mind/body practice. They are used in stress reduction classes and they are about mindfulness and reducing stress and anxiety. The Handbook for Happiness is like a workbook and the Guide to Stress free Living is more in-depth. I bought them both after looking at them in the Mayo gift shop and they are excellent. https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700
-
Like -
Helpful -
Hug
2 ReactionsOkay, thank you! I will definitely check those out
-
Like -
Helpful -
Hug
1 ReactionThis is great info! I’ve been recently diagnosed with CS after 4 years of progressive inflammation which has now started to greatly impact my muscle tone, strength and stamina. I’ve been to dozens of doctors and finally Mayo. I’ve found that gym workouts (which was my form of therapy) leave me in a lot of pain late in the day in every joint. I wake up feeling great with no pain at all but by mid day, it’s a spiral downhill into massive inflammation. Has anyone else had this kind of experience? I’ve not found any medications that help.
-
Like -
Helpful -
Hug
1 ReactionHi @dwilkin, welcome to Connect. @kelseylmontague, @legalese1972, and @menville are other members here who might be able to share some suggestions with you.
I did find a couple of interesting articles but not sure if they are helpful:
Rehabilitation of a Young Athlete With Extension-Based Low Back Pain Addressing Motor-Control Impairments and Central Sensitization
-- http://www.natajournals.org/doi/abs/10.4085/1062-6050-238-16?code=nata-site
Pain amplification—A perspective on the how, why, when, and where of central sensitization
-- https://onlinelibrary.wiley.com/doi/abs/10.1111/jabr.12124
@dwilkin, does the level of intensity of your workouts that you are using for your form of therapy make any difference in your pain level later in the day - if the workout is not as hard is your pain level better or worse later in the day?
John
-
Like -
Helpful -
Hug
1 ReactionIf I work out even at a moderate pace (weights/Pilates/cardio) for 45 minutes (half at my rate 2-3 years ago) by 6 hours later, it can be very severe. Oddly, I could go on a bike ride for 20 miles and it would be better. I’ve found that the most I can now do without big payback by 7pm is a combo of just walking, moving, standing, being busy. But I’ve lost 10 pounds and lots of muscle mass and stamina. Lying down is the only thing that makes it go away after 45 minutes or so. I wake up with no pain! I note the progression though. More joints and more pain over the past 4 years - started in my knees. Now it’s pretty much every joint.
-
Like -
Helpful -
Hug
1 ReactionThat was a very interesting abstract you sent. Thank you - I’ll share it with my doctor.
-
Like -
Helpful -
Hug
1 ReactionAlso I'd love feedback from anyone on this post about PTSD and it's relationship to CS. Over a period of 18 months prior to the onset of symptoms, I had life-changing events that were not of the good kind. I nearly died from twisted intestines and it was MAJOR emergency surgery. Subsequently, I had 4 other extremely traumatic events that elevated my stress level no doubt for an additional 18 months, on top of a high level exec job in NYC. I've read some links between elevated cortosol levels over a long period and that can lead to "re-wiring" of your neurology so that this stress state becomes the learned response constantly. Then my symptoms started. Anyone have info on this condition being tied to trauma? Thanks all.
-
Like -
Helpful -
Hug
1 ReactionHi @dwilkin, I did find an article doing a quick search that may be helpful until other members join the conversation.
Evidence for acute central sensitization to prolonged experimental pain in posttraumatic stress disorder.
-- https://www.ncbi.nlm.nih.gov/pubmed/24738563
Hello @dwilkin
When I read your post and hearing how you had emergency, major surgery, I thought that you might find our PICS discussion group of interest. This group discussed post-intensive-care-syndrome. All of these folks have discussed the emotional ramifications of emergency/major surgery. For many, it left some very difficult memories. I would encourage you to read this discussion and see how this syndrome might apply to what you are experiencing now. Here is the link,
https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/?pg=12#comment-65501I look forward to hearing from you again. Will you post and let me know how you are doing?
-
Like -
Helpful -
Hug
2 ReactionsI have only the highest praise for Mayo's Pain Rehab Program. I went through the program the first time 18 year's ago in Rochester. After continuing my exercise program and doing all I was told to do after finishing the program, I was completely pain-free within 3 months! At that time, I had been diagnosed with whole body complex regional pain syndrome. Before I went to Mayo Rochester I weighed 60 lobs and was being cared for by Hospice nurses. Mayo saved my life! The second time I was in PRC was in Mayo Jax program - again with complex regional pain syndrome - as the result of a serious accident. I cannot say enough good things about this program and its staff! I would recommend it to anyone with any sort of pain program that is impacting their life and their function. The program is robust and if you do exactly as asked you will come out having made enormous strides! I want to direct something to those writing about Central Sensitization. I think some of what has been said here is not accurate or is misinformed. I would like to see an expert in the field address this issue here online. I suggest the director of PRC, Mayo JAX. He would be an ideal person for talking about it.
-
Like -
Helpful -
Hug
3 Reactions