Restless Legs Syndrome (RLS) Discussion Board

Wondering if anyone here has this diagnosis--related or unrelated to their RLS. Or, if anyone here has personal knowledge about the condition.

Link: http://www.instituteforchronicpain.org/ ... sitization

Very interesting.

Are you recently diagnosed? Doc diagnosed me with fibro, but it doesn't seen right to me. Not sure this is, but it may be closer. Myofascial pain syndrome is another I have looked at.

My hubbie and I both have times that a simply stroke on the skin can be painful. That is such an odd feeling. Mine comes and goes, as does his, but mine is increasingly more constant.

Wonder if there are some forums for people who have these issues...maybe like you, I am searching for some answers and simply cannot seem to find them.

Would love to hear about people's experiences, too. And diagnoses. And what works. I currently cannot sit for more than a few minutes because of the chronic pain in my hips, buttocks, and thighs. Enough to type this and then I will pop up to go vacuum.

VA,

I know you are an internet super sleuth. The only Q&A type link I have found is this:

https://connect.mayoclinic.org/discussi ... d-like-to/

I have not been diagnosed, and the syndrome was mentioned to me by a top notch physical therapist who has been working with me due to post surgical issues and pain. Mmmmmm! After what reading I have done I'm thinking that it could be me--or not. At least 50/50 this minute and a 100% at other times. I think it is a bit of an obscure diagnosis or one many doctors are not familiar with. It may also fit in the "think horses not zebras" category. I am afraid this is me which causes me to be less energetic in searching for the truth. Why? Based on some readings, the diagnosis/criteria etc. may be a bit too theoretical, under standardized, or even a bit murky. Sounds a lot like where RLS diagnosis was many years ago. But, you have to ask yourself, "Can the Mayo Clinic be wrong?" Further, I am afraid because the treatments are few, often unsuccessful, and, many of which, as an RLSer, I have already tried or am currently using i.e. gabapentin, opioids. I read one article that mentions cannaboids sp? as having some positive effect. I guess I also worry that if diagnosed with this syndrome doctor's will not take other real pain concerns seriously. Just as with RLS, I think this may already be the case with some of the other chronic pain syndromes such as Fibromyalgia. As part of my reading, one of the researchers mentions Opiod Induced Hyperalgesia or OIH. This was interesting to me because I have frequently mentioned to my health care provider that I often seem to feel worse after taking my hydrocodone and even my gabapentin. Seems to fit right into one theory of syndrome diagnosis. My RLS takes the form of the electroshocks and to a large extent just pain. Could the pain be more related to central sensitization than RLS. Don't know.

Views, I hope this does not confuse or complicate your clinical picture. I plan on reading more and will, at some point, most likely take it up with my medical care provider with whom I have absolute confidence in. Doctors often can access data bases that are much more comprehensive than what you or I can navigate. I hope your pain become more transient. Thank you for being part of the heart and soul of this board.

Wishing all who visit here some peace this night.

Thank you, Sojourner. I honestly don't think anything could complicate my clinical picture, lol. The crazy things my body is doing...high SED rates, high ANA, but not lupus, hypothyroid, post-menopausal bleeding, and skin issues are just a few of the lovely things that go with all that pain .

I appreciate your thoughtful comments and sharing what you've learned.

I've mentioned this book here elsewhere, but in the context of this post, it's even more worthwhile to mention. The book is Explain Pain by David Butler and Lorimer Moseley. A few years ago I became interested in pain for a while, and ended up reading a couple of books and reading reviews and summaries of a few more. Only this one was not condescending and judgmental. It explains how our bodies interpret stimuli as pain, and how that system can go out of whack, and how we can put it back on track.

Understanding is the first step, though I didn't understand why when I first started to read the book. A stimulus cannot be painful until the message that the stimulus has been received hits the brain; and even then it will not be painful unless the brain decides that the stimulus represents a danger to you. So if you feel pain, it's because your brain thinks you're in danger. If you don’t know the cause of the pain, your brain might elevate the level of threat and therefore the degree of pain. If your brain perceives you to have taken action to eliminate the threat (for example, by going to an Emergency clinic because of a severe gut pain) then it might remove the pain before the doctor even looks at you.

In other words, thoughts are just neuronal impulses, and they can affect the brain the same way that signals of danger from sensory nerves can. Once you fully understand that there is no tissue damage associated with the pain you’re feeling and that the pain is due to a faulty alarm system, that faulty alarm system will begin to fix itself.

I would do the book a disservice if I tried to summarize it. They do a really good job of explaining the things that can go wrong physiologically to lead to chronic pain (eg. peripheral nerves grow more branches toward the main danger-signalling nerves in the spinal cord, meaning that normal stimuli like touch can trigger a danger/pain response; those danger-signalling nerves create more receptors for excitatory neurotransmitters, meaning they fire more easily; etc).

Then the authors show how graded exposure to stimuli – at a lower level than will cause pain – can re-train the brain, over time increasing your pain threshold back to a normal level. I think it's the only approach that stands a chance of working with chronic pain, because the pain isn't related to any original injury or insult - it is related to overly sensitized pain signalling in the nervous system. To heal it requires changes to the nervous system, and it's unlikely that a medication that alters the levels of one neurotransmitter will achieve the required changes.