Mayo Clinic Connect
Has anyone been diagnosed with Central Sensitization? If so I’d like to discuss.
Liked by Leonard
Hi @nataliereeves74 and @mblbirch,
I've moved your messages to the Brain & Nervous System group for two reasons:
1) To help connect you with others who've shared their experiences with Central Sensitization.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in and participate with other members wherever you feel comfortable.
2) According to the Institute for Chronic Pain or ICP, "Central sensitization is a condition of the nervous system that is associated with the development and maintenance of chronic pain." http://www.instituteforchronicpain.org/understanding-chronic-pain/what-is-chronic-pain/central-sensitization
With regard to the link between this disorder and autoimmune conditions, you might also be interested in reading this published study:
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Liked by Kanaaz Pereira, Connect Moderator
Thank you Kanaaz!!!
Liked by John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
Is there a connection between central sensitization and autoimmune diseases? Can one trigger the other? Thanks!
Liked by John, Volunteer Mentor
Sorry to be the bearer of bad news. But, the label "pain sensitization" or "central sensitization" is basically hocus-pocus. I have astrology books with more evidence. A few years ago, some researchers cooked up the theory that unexplained pain must be the patient's doing, somehow. Not only does this theory seek to lay the blame squarely on the patient's shoulders, it is also designed to facilitate referral of these patients to "pain management" patient mills, which seek only to perpetuate the patient's dependence on prescriptions and treatments – filling the coffers of the "pain management" corporation without ever intending to help the patient obtain resolution and independence. This is supported by the fact that the US government is currently launching a huge investigation of these "pain management" corporations, charging fraud and endangerment to the public.
The label "pain sensitization" or "central pain sensitization" is just another fad conjured up by researchers and pharmaceutical companies to make money. Nothing more. If you have been experiencing unexplained pain and hear the words "Fibromyalgia", "Chronic Fatigue Syndrome", etc. – you are in good company. I wouldn't be surprised if more than 30% of Americans experiencing chronic pain are currently being labeled with this fad nonsense. All I hear is the "cha-ching" of the pharmaceutical companies' pocketbooks. Your family doctor or internal medicine doctor is usually too overwhelmed and frustrated with their schedule to get more involved in any problem that is going to require more than 1-2 visits per year. It's just been found to be unprofitable for their business model, you see. Most doctors nowadays prefer just to hand out prescriptions and see patients once or twice a year for minor ailments. Their insurance relations and CPAs prefer this business method.
There is no such thing as "pain sensitization". You are not to blame for your pain. They just can't figure out what is causing your pain. It's not your fault. It is one of the biggest failures of our healthcare system. I advise you to help yourself by joining a club, church, or community group. Try to get more fresh air and exercise. Be of service to others. It will likely help you more than all of the prescriptions in the world.
@truegrit1213 I too believe this everytime I've gone to my pain Dr. I feel worse not better I'm a big proponent of natural herbs,spices and organic food along with exercise of Somekind I enjoy swimming aqua aerobics does more for me just getting out in nature There are serious diseases that require a Dr.s help with but if a person is only suffering aches and little pain this will help you
I was diagnosed with it in 2012 by the May Clinic in Jacksonville.
I am wondering how you are doing today with your diagnosis of central sensitization. I hope the treatment was a success for you and I would love to hear from you. This is another diagnosis I was given a while back so interested to see how you are feeling and coping with this daily pain.
Actually truegrit1213 is not speaking truth. Mayo's PRC treats CSS Centralized Sensitivization Syndrome by removing you from pain meds & Dr's. The first thing they teach you is they can't take away your pain or other Chronic desease. They educate you about about what is happening in your body, wean you off medications, they get you moving, exersicing, strengthing your body and help you live a functional life. When you follow their program you won't be cured (if you are curable you probably won't qualify to be in the PRC program), you may still be "diabled" but they will help YOU put Life back in your Life. I finished the program 3 years ago and although I still can't work I live better than before and without Dr's and Meds. I qualified for the program because of multiple uncontrolled pain and other issues that all the "ologist's" could not help me with. I was only disappointed there was not specific education on nutrition, food and diet and no follow up unless YOU go to expensive bimonthly after care lectures. My program had patients from a 16 year old high school student to a couple ladies well into thier70's in wheelchairs which they wouldn't get out of day 1 but by day 10 were walking to physical therapy class without canes!
Liked by John, Volunteer Mentor, Martin Jensen, Volunteer Mentor
Hello @robert58 — Welcome to Connect. Each of us is different when it comes to pain but I think you are correct. I have no medical training or background but have learned a person needs to be their own advocate and search for answers for what works for them. The more a person can educate themselves about their illness, the better questions they can ask their doctors and hopefully help them come up with a better treatment plan. With that said, there are a lot of people out there making money off of people in pain so that is another good reason to keep yourself informed.
For those not familiar with what you mentioned – Mayo's PRC treating Centralized Sensitization Syndrome, here are some links for more information:
Pain Rehabilitation Center
Pain Rehabilitation Clinic (PRC) Testimonial – Mayo Clinic — Patient Corey Plath explains about how chronic pain has impacted his life. Multiple concussions led to daily headaches then unimaginable pain. Corey found answers on how to handle this chronic pain when he visited Mayo Clinic's Pain Rehabilitation Clinic.
Liked by Colleen Young, Connect Director, Martin Jensen, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, robert58
I was recently given a diagnosis of Central sensitization syndrome….but I have told every doctor that pain is not my biggest problem. The neurologist that put thus in my chart did not mention it to me, only put ut in his notes. This makes no sense. I have very painful carpel tunnel in my arms, but I even told him that it is not constant. I dont get it.
@fortyisyoung I have a thought which might or might not apply to you. When I was about 40, I started having painful carpel tunnel in my arms. The docs I saw said nothing about other problems. But within a couple years I was having problems everywhere. joints, organs, glands, head, eyes, etc. Now, almost 50 years later I am being tested for various types of Amyloidosis Light Chain. I am pretty certain now that mine is Gelsolin, which is Systemic, primary, hereditary. It begins at conception and grows in your tissues and fluids until after you die. Most people, including doctors have never heard of it. Carpal Tunnel is one of the first signs that show up, and almost always in one's 5th generation. The testing is somewhat complicated, but not difficult. The better 1-AAA clinics and labs can do the testing for you, or if you have a local doc you trust, they can contact Mayo-AZ (Martha Grogan) or Stanford or Wherever, and ask what to do for the testing. My writeup of my history is available to anyone at https://bit.Ly/1w7j4j8, Amyloid and Old Karl. It is free, and in pdf so it can not be played with. I suggest you and your family and doc watch Martha Grogan's video on diagnosing Amyloidosis.
No but if u have or know anyone with Netflix it has a program called Afflicted about such problems.
Pretty sure I'm about to be diagnosed with CS, as Dr. Malavet mentioned it when I walked in on Monday and, so far, every other specialist has seemed to agree. There's a really good paper I found this morning, that is aimed more at doctors and practitioners, but has some good information about the symptoms of CS as well as what should be done about it with education and care. I'll post it once my "you're new and can't post links" timer has worn off. The basics seem to be that CS is a layer on top of fibromyalgia–you can have fibromyalgia without CS, and you can have CS triggered by something other than fibro (like severe arthritis.)
I was scheduled for the fibro two-day class next week before I even stepped onto Mayo Florida's campus. Not sure if I'll end up at the PRC, but if they can help me walk without this damned rollator again, I will take it!
sorry to hear of your pain and apparent Dx. Hope things go well for you.
I've had dreadful fibro for three decades, read everything and try everything pharmacological and otherwise, very little help. I haven't run across your article and look forward to your posting.
Hello @relientkitten, Welcome to Connect. Thank you for sharing with us. You should be able to post the link right now. There is no new member timer on posting links, images, etc. You just have to type or paste the link in your post.
Can you try and post it when you get a chance?
You're right. New members can only post links after they have been an active member (3 days or 10 posts). We do this to protect the community from unwanted spammers. However, I reviewed the link you were attempting to post and it is very useful to this discussion. Thank you for finding it.
– Central Sensitization Syndrome and the Initial Evaluation of a Patient with Fibromyalgia: A Review by Dr. Kevin Fleming and Mary Volchek, RN (Mayo Clinic) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4422459/
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