Has anyone been diagnosed with Central Sensitization?

Posted by leh09 @leh09, Apr 4, 2016

Has anyone been diagnosed with Central Sensitization? If so I'd like to discuss.

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Profile picture for goldleaf @goldleaf

I woke this morning and spent some time reviewing what I posted. Since someone has taken an interest in me, I would like to add a couple of present medical problems that my doctors can’t or won’t respond to. I am chemically sensitive to all pharmaceutical drugs. I now have allergic reactions to a lot of natural foods that I didn’t have before that surgery. I can’t even use natural medications. I still have medical problems to deal with. Incurable ones. I have thyroid disease and I have to use a pharmaceutical med for that. There have been some very bad problems that have occurred when having to say go to my primary doctor. I had to recently change to a new one because he doesn’t understand Central Sensitization Syndrome even though I spent time trying to explain it to him. After spending my appointment time doing this, he said the stupidest thing to. “ So now you are desensitized”. What a waste of that time. The bad result of this happened when I had my annual blood test for the thyroid disease. It showed that the level was to high. So he adjusted the dosage. That adjustment probably wouldn’t have affected before that operation but it did this time. For me it was way too low and I reacted like someone just set me on fire. I am still trying to adjust to this level and it has been over 8 months. I dropped that doctor and started seeing a new one. This primary doctor, after finding out that I have Central Sensitization Syndrome and the very bad reaction to the thyroid medication, doesn’t want to deal with it. The last time I saw him he told me that he wants to let my neurologist deal with it. Stupid reasoning. Yes my neurologist went out of his way and spent sometime looking into this and had me take a couple more blood tests. When the results came back, they showed that I was in some kind of normal range and I didn’t need to see a endocrinologist. He explained that stress from having Central Sensitization Syndrome will affect my thyroid gland.The reality is I am still having problems because of that change. Since this affects my entire nervous system, I think you see my point. As of now I really can’t trust any doctor who isn’t familiar with Central Sensitization Syndrome. So here is my dilemma, if I have any kind of old or new medical situation, who do I see and where can I go to for help? I can’t prescribe meds for myself I am not a doctor and as far as I am concerned, they aren’t either. I am 71 and I will eventually start having more medical problems, Mother Nature will see to that. I have the neurologist who has been very helpful in dealing with my pain through injections. But that only lasts for awhile and I can barely live with that. The prospect of more pain is there. I will never be able to have any surgery. My reality sucks.

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@goldleaf I understand your condition. I was diagnosed with this in 2014 after decades of hypersensitivities, migraines, chronic anxiety, chronic pain syndromes (fibromyalgia, pudendal neuralgia, occipital neuralgia and now "idiopathic" small fiber peripheral polyneuropathy). Im 72 now, have had these issues to some degree since an extremely stressful, abusive childhood.

I didn't understand that diagnosis given by a migraine specialist and no details were given. However, this vague explanation was to be the only educated info I received through the years. No other doctors seem to know what it is at all, greatly preferring to assume I'm just a hypochondriac and need intense mental therapy.
Note that I am also autistic which is a risk factor for this since I am naturally more sensitive.

Understanding that this condition is a documented syndrome has lessened the anxiety a tiny bit, which I appreciate because anxiety worsens the deep burning, itching pain and increases migraines. GI symptoms, heart pounding, urinary urgency, chest tightness.

I may not be able to completely cure the SFN but I can improve this overall hypersensitization by lessening the anxiety level which hypersensitized my brain. I'm learning that is possible. Dont give up.

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Profile picture for sugaplum69 @sugaplum69

Hi there. I am having a unique situation with my nerves and I just had a doctor mention maybe I have "Central Sensitization Syndrome" so I'm trying to learn more about it. My situation is this....I started noticing nerve issues with my teeth several years ago. What was supposed to be a couple of small fillings, ended up becoming root canals and crowns. The nerve in the tooth would get so mad, they would have to remove it.
Later we found if I took high does of NSAIDs for like 2 weeks the nerve would settle back down but it was too late by then. I thought it was a Diabetes thing, since I was newly diagnosed at the time. Figured my nerves were just more sensitive at that point. Now....a year later, I had a tooth crack at the root somehow so eventually we found the only way for this pain to stop was to remove the tooth (even though still good) with roots and nerve. After the implant went in and has been a year, I am still having a nerve issue in my mouth. It is not a tooth and it is no longer painful, as I've had the dentist and the surgeon check. EVERY day my gums, cheeks, teeth are irritated after a certain point in the day, chewing on cheek or clenching my teeth. I go to sleep and when I wake up....it's gone until later in the day.
There are other things that have now happened as well. If I get an injury to a body part, things then randomly hurt. I started with an overuse injury of my left thumb. Doc gave me a steroid injection which helped for awhile. Then I got an "overuse" injury on the inside of my elbow on the same arm which seemed to tag team with my thumb but randomly. Once the "overuse" part was mostly resolved then it moved up my arm to my shoulder. They thought maybe Thoracic Outlet Syndrome but everything is again random and not consistent now.
What really freaked me out was about a month ago, I let the doc give me another injection in my thumb joint (he said it was now arthritis in the joint) and the joint was so swollen, he couldn't get all the steroid in it. Later that night after all numbing wore off, I woke up with the most excruciating pain in my life. Every nerve in my left arm was set off and no pain pills (I took 4 throughout the night) and NSAIDS helped. I had two babies without meds and this was definitely worse. By 4am I was so exhausted, I held my arm to my body and forced myself to lay down. Fell into a stooper and when I woke up..........all nerve pain had receded. I kept waiting for it to come back but it was just sore from being poked. I have been looking but everything I can find talks about Neuropathy with Diabetes and this is not that.

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@sugaplum69. I have had a simular experience in my mouth had to have all teeth pulled and implants put in top and bottom. Then had to have 3 implants out do to inflammation had all the top post taken out and now I have bottom post but they still hurt. Same as you about 3pm I have to take them out its a vicious cycle . Head neck shoulders and left arm just hurt. I am trying to get an appointment in Jacksonville in Oct. but they said they didn’t have any time for me. I am on the shirt end of everything.

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Profile picture for capefibro @capefibro

As Colleen's article noted, there are a number of disorders which have central sensitization as a hallmark symptom, with FM being one. I like the article suggesting that "mild aerobic exercise" lowers central sensitization pain. There is no "mild" aerobic exercise, it's either aerobic ( very difficult, especially for us) or not aerobic. My pain management specialist, who recently fired me and said, essentially, suck up the day-to-day pain and do aerobic exercise for an hour each day, was clueless. I sent her a nasty letter and copied it to the chief medical officer at the hospital. It's very unfortunate that my FM pain got much worse the last three years as the "opioid crisis" caused doctors to throw people in real pain under the bus. This is a difficult time to have chronic pain in America.

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@capefibro I am so sorry that happened to you. I had a surgeon do that to me last year which flabbergasted me. No idea why.

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