Central Sensitization - please share your stories

@lorirenee1 I loved your words! Perfect. Thank you for them. Rest well this evening and... may tomorrow bring you happiness. Rachel

@lorirenee1 Hello. Just wanted you to know that I woke this morning and 2 things popped into my mind...

1. your post from yesterday, which I found very real and honest, and will screen shot for future reference

2. yesterday, I called my PT and he agreed to see me today out of necessity

I have some hope for the day and that is refreshing. Day by day we go...I wish you a day of comforting thoughts, peace and love.

Thanks again for being so kind and supportive. I appreciate you.
Rachel

@rwinney Hi again, Rachel. Your responses to me made me cry. You have one kind physical therapist to see you today. I hope that somehow, you feel better from going. Yesterday, I was filled with CBD oil and marijuana all day long, reflecting on how bizarre it was, and how I could not imagine ever enjoying marijuana. It does help with pain, and I would be nuts without it, but I am nuts with it, as well. Just trading walnuts, for pistachios, so to speak. This is a perfect example of not being able to just give in, and go with it. Let the river wind as it wishes.....Today, if I wind up needing marijuana all day, I want a different journey. One that just sails peacefully in the waters....that is my goal. I wish you release from pain. I wish you to love yourself, how you are. We all belong to God, in the end...….Lori Renee

Touche

@lorirenee1 My PT will only allow 1 patient in office at a time after which he sanitizes before the next. He and I both wore masks. He is a wonderful therapist...kind and caring...he goes the extra mile with his care and concern. That is what separates good Drs from poor Drs. He and I discussed adding occupational / physical therapy to my myofacial whilr I continue to wait to get to Mayo. I had a successful visit and really needed it after a month away. Blessed. Be well today. 🌈

@rwinney I am so glad it went well for you today. Your PT man is a gem. A real keeper. Hang in there, lady. I am glad you will do more with him. God Bless, Lori

@rwinney There is some possible help for neuropathy. There is a Facebook group called "the protocol works" and "the protocol 525" (newer version). You have to dig a bit, but you can find their exact protocol and with the 525 they ship it to you. It involves lots of supplements and minerals and LOTS of healthy fats (nerves like healthy fats). In my two years of chronic myofascial pain, I had developed.my own protocol with all supplements (lots of different flavinoids (ORAC green energy), and many supplment flavinoids and higher Vitamin C (<2000 mg/day split up with meals), etc., and hemp seed oil, and turmeric, milk thistle extract, ginger, etc.. These definitely helped my neuropathic and sciatica pain. However, some of my symptoms match up with a neuropathy, too. That's the really short version of my supplment program- but the supplements I use have really cut my pain. So did doing the TRX core suspension exercises and some Pilates reformer exercises (I have bulges, stenosis), etc. too but all my pain including nerve pain is from tight muscles clamping on nerves. Sltrengthening and working particular muscles greatly helped my pain.. As long as I stretch, exercise and take my supplements I’m pain free. It cut my pain and I'm no longer on antidepressants for nerve pain. When the pain goes down, the centralization issue may go down (one would hope it did for me, to a large extent; The pain monster takes on a life of its own). Some good books about pain are: "life after pain" by Dr. Jonathan Kuttner (who discusses centralization; he has some programs that deal with this online). "Life after pain" is a $10.00 book and easy to read. However, you'd have to buy some of his other stuff to really get the treatment detail - but some is affordable and online. Also, Dr. Greg Fors, "Why we hurt and how we heal". He discusses a lot and speaks about diet a lot in his book. So, all that being said, have you (and anyone else) looked at your diet? Add lots of green stuff - including supplements. Be sure to monitor blood pressure on supplements as they can alter it. Also, research the doses you need and don't over do those, either.

@richman54660 Hi and thank you so much for your informative reply. I have followed the Facebook neuropathy protocol for over 6 months and feel that it has helped. I add turmeric and CoQ10. I pay attention to my food and know I have room for improvement. I work my body by stretching and as much movement as possible. I have myofacial treatments weekly but just not enough to deal with my whole body. Working on beginning physical/occupational therapy to learn how best to use my muscles for a favorable outcome. I'm also accepted to Mayo's pain rehab program and am pending scheduling (Covid). I hope to gain ample knowledge and direction while there to better my existence Thank you for the book references. I've jotted down and will get to reading. You're a great asset and very much appreciated. I believe all of what you've said and agree that it makes a ton of sense...need to keep applying. Thanks again and take care. It sounds like you are doing a fantastic job!
Rachel

Also, I'm curious...did you have pain and debilitation after myofacial release therapy? I've been going weekly since last July and the day (or hours) after, I'm 10x worse. The area worked on flares beyond normal pain. This happens with use of my body as well and believe me, I push, push, push and keep moving despite pain because I keep thinking I will reap the benefits eventually. That's how I'm wired, I never give up. Regardless of my continual striving to break the intense outcome to my body, I seem to remain the same. This is why I feel I need a professional team to assess and assist me.

@rwinney The issue we all have is this - what is causing the pain? What is the nature of your pain and where is it at? I believe I partly understand the source of my pain. At one point, I got reactive pain from sitting or rolling on balls or rollers with trigger point release. I don't do much trigger point release anymore - but I also don't need to as most of the trigger points are gone (at one point I literally had chains of trigger points and tension from the psoas and diaphragm all the way down the legs). I often use a percussion massager on my glutes almost every day now. At one point, I had sciatica if I did that. So something has changed for the better because that doesn't bother me now and in fact, it helps - as long as massage is brief. I believe my pain was at least in part from fibrosis (specifically, from fibrin deposition). I also took some unusual supplments: the enzymes nattokinase, lumbrokinase and serrapeptidase which I think help remodel myofascial tissue. If you are experiencing pain, I wouldn't recommend that massage treatment at this time. Maybe later, things will change (they sure did for me and it may be the particular combination of supplements I've worked out is magic for me). For me, the healing came relatively suddenly once I made the dietary changes (including the enzymes), I had been exercising for a long time and I added the enzymes. For me, my back pain (2.5 years + backache) ended literally the day I started doing pikes with the TRX system. I haven't had a backache in 1.5 years and I'm very active. Yes, I most likely have lower lumbar DDD and, if I go off the supplments, pain (probaby benign cramp fasciculation syndrome with more cramps than fasciculations (muscle twitches); that part is a self diagnosis). The cramps cause the pain - but they aren't there if I take the supplements. So, I have no pain or tension to speak of if I use the right level of supplements and keep exercising. Many people also find their "magic" stretches and exercises that can dramatically lower their pain. But that is me.

I have posted many times under the pudendal nerve entrapment and also the pain in the butt, can't sit down thread. This is a long post I'd made to another person who was having some glute region pain, but explains what I did and also reviews one of the books I mentioned (Dr. Fors' book). Here goes:
Prior post: "I've posted many times in this thread and pain in the butt can't sit down thread.
Yes, I had some type of fibrosis and myofascial pain in the glutes and legs including piriformis issues and also tension up and down glutes and legs, sciatica, etc. I managed to get rid of it. I'll tell you how below. Please give it a try. Here is a book review I wrote for a book called "Why we hurt and how we heal" by Dr. Greg Fors (buy the white cover edition on Amazon). Proper stretching, nutrition and supplements helped me and most of my sitting pain is now gone. Bear in mind, if you compress a nerve inside tight muscles, it creates nerve pain. It's all in my review. For exercise, I use a TRX suspension system and all other manner of stretching (but also have a pilates machine (Aeropilates 700) and a Lifepro Rumblex 4D vibration plate and go to the gym for weights on machines and I stretch out daily. Good luck. Add the supplements, get moving in ways you can tolerate.

My review:
Dr. Fors book. Why we hurt and How we heal.
I've had some chronic myofascial pain in glutes and legs and I've found essentially the "cure" on my own. In the meanwhile I'd read other books such as "A headache in the pelvis". That book talks about the problem but doesn't specifically give you the cures (only some "cures"). However, Dr. Fors book is the go to book with practical tips and suggestions. His own story "case study" could practically have been my story with sitting pain and muscular tension. In his book Dr. Fors talks about oxidative stress on tissues, etc. For a person who's interested perhaps you could read it all. However, you can skip some and just go to the practical parts and use that information instead. I personally believe it is poorer circulation and poorer tissue remodeling as we age that causes these issues like myofascial tension and pain (including neuropathic pain). Apparently, I had some fibrosis / extra clotting going on as I got older (i.e. 58-ish). I believe the fibrosis in tissues / veins was causing poorer circulation and stiffness. While speculative, it may be deposits of fibrin (the blood clotting protein) that causes issues when deposited in veins, arteries and tissues and that tends to recruit cells of the immune system (granulocytes) and, hence, you also get "inflammation" (there is your low-grade autoimmunity tie in; these are my opinions; not something Dr. Fors mentioned). I believe this was true in my case (I'd had phlebitis in a leg; plantar fascitis in the feet years before, etc., all consistent with some fibrosis of tissues. Western medicine does not seem to understand this well and it seems to go relatively untreated - until you get put on warfarin or some such drug. Supplements may alter and reduce this process. Read below for specific suggestions – many of which were mentioned in Dr. Fors book (I added 2 supplements to my regimen as a result of Dr. Fors' suggestions).

I do believe the supplements are the key to promote healing and proper tissue remodeling / regeneration which may go awry as we age and don't heal properly without the correct supplementation. Said differently, as you age you may need to supplement your diet with various plant substances and minerals, etc., for best health. His book is worth the price of that information alone which he details in a chapter on supplements / nutrition – but he doesn't mention adding a little hemp seed oil, etc. (I'm just writing this off the top of my head – there is a lot in this book – maybe he did mention healthy fats). As you take supplements, do check your blood pressure as these can vary it.

For me, proper supplementation (I added on a couple of Dr. Fors' suggestions, along with stretching and exercise) have largely "cured" my tension and pain in the lower back and glutes. I have lower lumbar degenerative disc disease (which is most likely a “perpetuating factor” for myofascial pain) but all my pain comes from muscular tension and pain – which can be controlled without NSAID's and without antidepressants for me (although for a time, I did use some nortryptline for nerve pain). Honestly, if you cure your gut health (Dr. Fors has a whole chapter on that) and take the right supplements, your myofascial tension and pain may go away on its own without needing to do a bunch of trigger point work (possibly; that is what happened to me – but he has a whole chapter on trigger point removal and has invented a tool you can buy separately for trigger point work – instead of using the usual balls and rollers for this). As one other book reviewer said, until the root problem is cured the trigger points might simply come back – they did for me, too, at one time.
He has whole chapters about each topic. Especially, adding various supplements such as Flavinoids and flavolignins can really help you heal. Some of the supplements Dr. Fors mentioned such as ginger extract to calm digestion and Milk thistle extract (source of flavinlignins) is one of many you can take (silymarin, the active ingredient in milk thistle extract, is a bunch of flavolignins, I believe; I also take diosmin / hesperidin (vein health) and some quercetin (stay below 500 mg or so daily; I discontinued that as of now, though); these are all flavinoids, I believe / resveratrol; ORAC energy greens (full of plant stuff and – you guessed it flavinoids), a low dose rutin (vein health) and extra vitamin C (staying below 2000 mg daily) and a tblsp of hemp seed oil, and turmeric.

The regimen I use along with stretching and exercise reversed or is cutting down on my sitting pain / neuropathic pain in the legs and glutes (i.e. less "sciatica") and reduced fibrosis in the muscles/veins, etc. My legs don't swell as much, either. I also supplemented with enzymes nattokinase / serrapeptidase and lumbrokinase, too, taken between meals to help with possible fibrin (or other amyloid type deposits) in veins / tissues. These are counter-indicated if you have clotting disorders or about 10% of people simply don't tolerate these in the gut. These have never bothered me and helped tremendously. Unfortunately, Dr. Fors did not mention those supplements that might reduce depositions of proteins in veins / tissues and are thought to be anti-inflammatory. However, these might still be considered “alternative medicine” in the west despite being used in Asia for years. Regardless, you might cure your issues with the right supplements alone, without those enzymes. I found milk thistle extract, recommended by Dr. Fors, was a good addition to the above substances as a source of flavinoids. Yes, cut down on added sugars, too, as Dr. Fors (and everyone else in the universe talks about). I had tried some of the other supplements he mentioned (like devils claw – but found it increased my blood pressure). Many others actually lowered my blood pressure! Be sure to monitor your blood pressure.

Thank you Dr. Fors for an excellent book. It was helpful and practical. I was not compensated for this review."

End of that post with minor revisions. I hope this helps. It may give you ideas. While the idea of myofascial release seems appealing, the tissue might need some help remodeling from the enzymes, etc. I am not sure Western doctors are familiar with them. My doctor did a search and found not much info - but not much harmful, either. Good luck.