Hi everyone!
I recently heard from a reader who was looking for some suggestions on where to turn next, in terms of finding a medical professional to help him. He said he’d been struggling with central sensitization syndrome for three years now, and had yet to receive any significant help.
I thought his advice might be useful for many of you, so here’s what I said.
First, I recommended he watch this incredible video from Dr. Sletten of the Mayo Clinic, talking about the various causes and symptoms of CS.
https://www.youtube.com/watch?v=8defN4iIbho
Basically, this video is so awesome, I cried the first time I watched it. Not, of course, because it was so awful, but because it made me feel validated in a way I truly wasn’t expecting.
In the video, Dr. Sletten explains how central sensitization impacts our body’s ability to process certain types of information.
In other words, it takes all of these normal, everyday bodily sensations that our nervous systems depend on in order for us to survive– and it turns the intensity WAY up.
On my blog, I have written about this the most in terms of pain. You can feel a light touch on your skin, and have it be excruciatingly painful. Your nervous system is magnifying the sensation.
But there are many other types of stimuli and sensations that our nervous systems can experience more intensely. Noise, in my experience, can be a big one. If someone’s making noise– say, doing construction on the building next door, it can really throw me off and ruin my entire day. It’s like I just can’t block it out.
Heat, to me personally, is another one. I’ve been thinking about that a LOT recently, as we’ve had a wave of 95 degree July weather here in Massachusetts. It’s like… other people can sort of brush it off. With me, it’s like it heats me up to my very core and I just can’t think clearly. (Then I start to experience anxiety, which has been TONS of fun!).
So… back to our main topic.
This reader wanted to know if I had any suggestions for how he could look for help. (He didn’t give me any specifics about his symptoms, or what exactly he’d already tried). So here is my answer, written for a general audience.
It would be really great if you could find help in one place.
For example, the video from above is from the Mayo Clinic’s Pain Rehabilitation Center in Florida. This type of a program, ideally, is geared towards helping people with complex pain problems.
If you have the option of attending such a program, I certainly recommend it! However, this type of program is few and far between, and I’ll be honest with you– I think a lot of other pain clinics have a ways to go, despite how good they look on paper. (You can read about my disappointing experience at a pain clinic here in Boston a few years ago).
So, while I certainly don’t want to discourage anyone from seeking out help where appropriate, I want this post to provide additional options for people for whom that isn’t an option (or it didn’t work).
What I personally did to manage my symptoms was to work with the appropriate specialist to address each set of symptoms I was experiencing. Here are some examples, for symptoms that are common in people with CS:
Musculoskeletal Pain
The person who helped me the most with my chronic pain was actually a PT. He truly changed my life. He had advanced training in something called pain neurophysiology education, which taught me to view my pain as something that was there to protect me.
As a result, I learned to work with my nervous system, not against it. I developed a much better sense for when it was okay to push through the pain, and when I really had no choice but to sit and rest. PNE can’t take away all your pain, but it can help you learn how to work around it (which dramatically reduces the cycle of having setbacks).
There’s also a type of specialist called a physiatrist who specializes in musculoskeletal pain. Physiatrists work in the specialty Physical Medicine and Rehabilitation. Basically, they specialize in all of the ways to treat musculoskeletal pain, and they are trained to look at the whole person, rather than focusing in on one body part.
A physiatrist may ask you about your daily life, and how your sleep is. They may offer you medications such as Lyrica or Cymbalta (see below). They may also offer different types of injections, such as trigger point injections, to help with muscle tightness. In general, they can help you think of solutions you may not have thought of.
Other, non-musculoskeletal symptoms
There are definitely other symptoms and conditions that can be caused by central sensitization. Again, let’s remember that with CS, you’re taking what would have been a normal, helpful bodily sensation and making it extremely intense.
Digestive System
One type of sensation that can be intensified is in your digestive system– what’s commonly known as irritable bowel syndrome.
If you’re having these symptoms, it’s really important that you follow up with a gastroenterologist, to make sure there isn’t anything else going on that could be causing your symptoms.
It may be easy, for example, for your primary care doctor to tell you that it’s stress, or that it’s irritable bowel syndrome, but really, you want to talk to an expert, to make sure it isn’t anything else.
If your GI doctor doesn’t find anything else going on, then it’s time to look into solutions. There are a wide range of treatment options out there for IBS– there are medications you can take, and you can work with a nutritionist to eliminate dietary triggers. Stress, of course, is a bigger trigger and it’s important to learn how it affects you. But keep in mind that it is not the only factor, which is why you should investigate all of your options.
Bladder
Another sensation that can be intensified is the sensation that your bladder is full. This is one of the potential causes of a condition called interstitial cystitis, which many people with CS/fibromyalgia have.
However, there are other potential causes as well– an issue with the lining of the bladder, or a possible bacterial infection.
So again, it’s important to consult with a specialist (in this case, a urologist) to make sure you aren’t missing something bigger.
Headaches/Fatigue/Dizziness
These are also some common symptoms of CS/fibromyalgia. However, like everything else, it’s really important to make sure that’s all it is, and there isn’t anything wonky going on in your nervous system.
Your primary doctor, of course, will be the one to direct you where to go in all of these cases, but just to give you an idea, these symptoms would probably be good to check out with a neurologist.
What you will likely find is that all of these specialties will be familiar with CS, as it relates to their own system of the body.
Each specialist may use slightly different terminology, or explain it to you in a different way. A physiatrist will be talking to about pain. A gastroenterologist will be talking to you about different types of sensations, as will a neurologist.
But ultimately, these are all different ways of looking at the same thing– the fact that your nervous system is processing information differently than it used to.
So… it isn’t really possible to get help for all of your symptoms from one person. Because you need to get the information from a specialist.
There is no one specialist you can see who’d be able to rule out other potential problems in your joints, in your digestive system, in your bladder, etc. You have to go to someone with specialized knowledge, for each of these different types of symptoms.
So, in the end, I think the most important thing is that you have a supportive and thorough primary care doctor.
You will need this person on board to direct your care, write referrals, etc.
I have recently had an epiphany that there are probably better primary care doctors out there than the one I was seeing.
The woman who was my doctor for over 10 years didn’t really believe fibromyalgia was a real condition, so needless to say, she didn’t treat me for it.
Fortunately, that never stopped me from seeing all the specialists I needed to. It’s not like my doctor was going to say no, and refuse to write me a referral if I said I was having a problem.
However, I am currently in the process of seeking out a new doctor, because our knowledge base is changing all the time. And because, of course, I’d prefer to have a doctor who actually believes me!
But I know what it’s like to struggle for answers, and not know where to go for help.
I wrote this post for you, if you’re in the same boat. Hopefully I’ve given you a good idea of how you can work within the framework of the health care system to get help.
For more ideas, you can check out the following post. It’s actually an old post, but I just went back and re-worked it before I answered this reader. It has a little more detail on various treatments:
Don’t worry! You can still get help, even if you can’t find a doctor who treats fibromyalgia!
Okay… that’s all I have to say for now!
Wishing you all the luck on your road to healing!
geomickb
August 15, 2018 at 4:23 amI too have central sensitisation, it’s great to hear that someone else is sensitive to heat and noise. I thought it was just me. Have you found a good way to stop being distracted/irritated by noise?
Sunlight in Winter
August 15, 2018 at 6:46 pmHi there! Unfortunately, I haven’t really found any ways to reduce my sensitivity to noise. The one thing that seems to work is really trying to soundproof my environment as much as possible. For example, I use “home-theater” blackout curtains in my bedroom– basically, the top tier of quality that you can buy– and that actually helps cut out a TON of noise. I’ve had more luck modifying my environment in that way, than anything else.
geomickb
August 16, 2018 at 4:50 amIt’s difficult isn’t it. My biggest problem is when I go camping, the slightest little noise makes me really irritable. I have only just been advised that I have this problem. I have just read a book called Explain Pain and that helped me understand (and believe). I am trying to carefully pace some exercise and yesterday managed a 12 minute jog (hurrah), I am also hoping I can do more hiking again. Your blog is great, really helps to read about someone else with a similar problem.
Sunlight in Winter
August 17, 2018 at 7:59 pmYes, Explain Pain is great! I also really recommend another book by Lorimer Moseley, called Painful Yarns. It has some really great anecdotes in it that demonstrate how pain is here to protect us– not always to tell us accurately whether we are injured or not: https://amzn.to/2OJGl50
That’s really awesome about the jog– congrats! And thank you for the kind words about my blog– I’m really glad to hear it’s been helpful!
Ski
August 16, 2018 at 8:52 amI have 4 clear cut trigggers: cold temperatures, vibrations, touch and stress.
I have CRPS (Complex Regional Pain Syndrome) and it has changed my life so much! I’m stubborn and refuse to give up so I try to keep moving and try to understand what works and what makes me feel worse. Each day is a new challenge but I refuse to let it get me down.
Sunlight in Winter
August 17, 2018 at 8:07 pmAbsolutely, Ski. The more you can understand your symptoms, the better! That’s great that you’ve been able to identify these triggers. I imagine it wasn’t easy.
geomickb
August 15, 2018 at 4:23 amI too have central sensitisation, it’s great to hear that someone else is sensitive to heat and noise. I thought it was just me. Have you found a good way to stop being distracted/irritated by noise?
Sunlight in Winter
August 15, 2018 at 6:46 pmHi there! Unfortunately, I haven’t really found any ways to reduce my sensitivity to noise. The one thing that seems to work is really trying to soundproof my environment as much as possible. For example, I use “home-theater” blackout curtains in my bedroom– basically, the top tier of quality that you can buy– and that actually helps cut out a TON of noise. I’ve had more luck modifying my environment in that way, than anything else.
geomickb
August 16, 2018 at 4:50 amIt’s difficult isn’t it. My biggest problem is when I go camping, the slightest little noise makes me really irritable. I have only just been advised that I have this problem. I have just read a book called Explain Pain and that helped me understand (and believe). I am trying to carefully pace some exercise and yesterday managed a 12 minute jog (hurrah), I am also hoping I can do more hiking again. Your blog is great, really helps to read about someone else with a similar problem.
Sunlight in Winter
August 17, 2018 at 7:59 pmYes, Explain Pain is great! I also really recommend another book by Lorimer Moseley, called Painful Yarns. It has some really great anecdotes in it that demonstrate how pain is here to protect us– not always to tell us accurately whether we are injured or not: https://amzn.to/2OJGl50
That’s really awesome about the jog– congrats! And thank you for the kind words about my blog– I’m really glad to hear it’s been helpful!
Ski
August 16, 2018 at 8:52 amI have 4 clear cut trigggers: cold temperatures, vibrations, touch and stress.
I have CRPS (Complex Regional Pain Syndrome) and it has changed my life so much! I’m stubborn and refuse to give up so I try to keep moving and try to understand what works and what makes me feel worse. Each day is a new challenge but I refuse to let it get me down.
Sunlight in Winter
August 17, 2018 at 8:07 pmAbsolutely, Ski. The more you can understand your symptoms, the better! That’s great that you’ve been able to identify these triggers. I imagine it wasn’t easy.
Ski
August 16, 2018 at 8:45 amI’m in southern Ontario, are there any central sensitization clinics here or on line courses I can take part in. I’ve got Complex Regional Pain Syndrome in my R lower leg since 2013 and also in my R hand, arm, shoulder, upper back and neck area since a car accident in 2016.
Sunlight in Winter
August 17, 2018 at 7:55 pmHi Ski, I have few recommendations for places you could start. Some of these ideas will require a bit more research on your part, but hopefully they’ll turn out to be helpful.
–The Pain Science Division of the Canadian Physiotherapy Association– you could contact them and see if anyone with an interest in pain science is practicing in your area https://physiotherapy.ca/divisions/pain-science
–Neil Pearson is a great educator– he taught the PT who helped me with pain neurophysiology education. Much of what I say about coping with pain comes from Neil. Here is his website where he offers online resources and meditations: https://lifeisnow.ca/ Since he is based in Canada, he may be able to connect you with a PT who has taken one of his trainings (I don’t believe he treats patients himself at present)/
–Just over the border is the Mayo Clinic campus in Minnesota, where they also have a Pain Rehabilitation Center. This is just a thought, but you could try contacting them and see if they can recommend any doctors or similar programs in your area. https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview
–Pain BC (British Columbia) is also a great organization! Again, they would probably be worth contacting to see if they know of anyone in your area. They also publish a bunch of great videos and online talks. https://painbc.ca/
I hope this helps!
Anonymous
September 11, 2018 at 11:18 pmThank you so much. I have just been diagnosed and didn’t know where to go. I feel better just seeing this website.
Sunlight in Winter
September 13, 2018 at 11:03 pmHi there, I’m really glad my site was helpful!
TC
September 16, 2021 at 10:28 amHi SKI, I am also in Ontario Canada and I am wondering if you found help? I am need of help as well. I wish you well.
Ski
August 16, 2018 at 8:45 amI’m in southern Ontario, are there any central sensitization clinics here or on line courses I can take part in. I’ve got Complex Regional Pain Syndrome in my R lower leg since 2013 and also in my R hand, arm, shoulder, upper back and neck area since a car accident in 2016.
Sunlight in Winter
August 17, 2018 at 7:55 pmHi Ski, I have few recommendations for places you could start. Some of these ideas will require a bit more research on your part, but hopefully they’ll turn out to be helpful.
–The Pain Science Division of the Canadian Physiotherapy Association– you could contact them and see if anyone with an interest in pain science is practicing in your area https://physiotherapy.ca/divisions/pain-science
–Neil Pearson is a great educator– he taught the PT who helped me with pain neurophysiology education. Much of what I say about coping with pain comes from Neil. Here is his website where he offers online resources and meditations: https://lifeisnow.ca/ Since he is based in Canada, he may be able to connect you with a PT who has taken one of his trainings (I don’t believe he treats patients himself at present)/
–Just over the border is the Mayo Clinic campus in Minnesota, where they also have a Pain Rehabilitation Center. This is just a thought, but you could try contacting them and see if they can recommend any doctors or similar programs in your area. https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview
–Pain BC (British Columbia) is also a great organization! Again, they would probably be worth contacting to see if they know of anyone in your area. They also publish a bunch of great videos and online talks. https://painbc.ca/
I hope this helps!
Anonymous
September 11, 2018 at 11:18 pmThank you so much. I have just been diagnosed and didn’t know where to go. I feel better just seeing this website.
Sunlight in Winter
September 13, 2018 at 11:03 pmHi there, I’m really glad my site was helpful!
TC
September 16, 2021 at 10:28 amHi SKI, I am also in Ontario Canada and I am wondering if you found help? I am need of help as well. I wish you well.