Fibromyalgia -- Need help on how to handle severe pain

It looks like Dan is making a pretty penny selling a book and some 10 minute video therapies. Correct me if I'm wrong?

I'm sorry you are having such a hard time getting a medication that clearly helps you. If you happen to be in Oregon, I know many prescribers who work with patients with chronic pain.

I am always interested into new insights about pain and recovery from it, so I immediately jumped to the YouTube channel and listened to his first 8 videos. I am left with this question "Where's the Beef?" In this hour, he did not offer one single concrete exercise or example - just kept saying "listen to the interviews." So then I jumped to the "ANS Rewire" site (ansrewire.com) and learned this is all a sales pitch to sell his online program - this is definitely NOT for me.

I am attending a Pain Rehab Clinic offered through my health care network, working with numerous professionals (all covered by my insurance.) I get personal attention, a structured program of PT designed for me, visits with a psychologist, pain management doc, and more.

My go-to reference (I have finally ordered my own copy for under $20 so I don't have to keep borrowing from the library) is "The Way Out" by Alan Gordon & Alon Ziv. It is based on a great research study they did (and are still doing.)

Sue

It is more of a morning ritual of centering. When I get out of bed in the morning I go out to the living room and place my yoga mat on the floor(I don't do yoga now). I squat down and place my hands in front of me and lower my head until I can scrunch face down. I feel the stretch in my ankles, back, shoulders and knees. I go quiet and breathe calmly, celebrating the silence. I put my hands out and slowly come up and push with my hands towards the wall in front of me and feel the stretch in my back and ankles. I slowly come up a little and roll to my side and lay on my back. I reach for the wall behind my head and I push my heels toward the opposite wall as hard as I can and feel my spine lengthen. It feels so good.
I tell myself when I get onto my back to close my eyes, unfurl my brow, and then I breathe from my core. It is calming and for a few minutes I feel peace. Some days I forget to do this. Obviously, don't get on the floor if you have mobility issues.

So sorry to read about your experiences, and I do commiserate since I am almost 75 and was diagnosed with fibromyalgia more than 40 yrs ago. At first, I fought the diagnosis, telling the doctor that I had no time in my life for dealing with a diagnosis that did not have "a cure" since my world was filled with many "more important" factors including raising 3 young children at that time. So I tried just coping but found it exhausting and draining on not just my body, but also my emotional and psychological wellbeing. After dealing on my own for about 8 years, I finally sat down with another doctor experienced on the disorder, to actively listen to her proposal for dealing with my pain, etc., and the emergence of Raynaud's syndrome. Her plan included taking cyclobenzeprine. The medication DID help, especially with falling and staying asleep but the next day I'd still be so doggone zombied. Not so great when you have young children, including a toddler, and attending college as well. She reduced the dose, and that helped with eliminating some of the day-after effects. Definitely helped with most of the pain. FAST TRAC A COUPLE OF DECADES, and the fibromyalgia pain had spread to the point that I struggled to go through my day, but was oftentimes overcome by energy-consuming fatigue and overwhelming pain throughout my body, as well as the brain fog which affected concentration and memory. Amitriptyline was added, and the two combined helped, but I began to have hallucinations😳! Combined with other meds prescribed by the then-neurologist for severe migraines, I then began to have night terrors and horrid nightmares😱. I got weaned off those drugs (not wise to go cold-turkey), but kept the cyclobenzeprine. While I continued to experience periods of classic fibromyalgia symptoms, I did have periods without the fibromyalgic brain fog and systemic pain. Life became a bit more bearable. The then-neurologist strongly urged me to consider Lyrica or Cymbalta to help with symptoms but I adamantly refused since I have a propensity toward having whatever nasty side effects are possible with majority of prescribed meds. So for several decades now, CYCLOBENZEPRINE is all I take for the fibromyalgia. As for how to deal with the pain that invades periodically, this is what I do:
•Very warm showers (I can't get in/out of tubs so baths are impossible). Especially helpful before bedtime as it also is a soothing routine along with body wash scented with lavender.
•Blue Emu cream (like Ben Gay without the smell!)
•Large Heating pads
•Alleve or aspirin (other meds are contraindicated)
•Lying down and giving in to the body telling me that I MUST rest and even NAP. •ELIMINATED ALL GLUTEN FROM MY DIET. THAT has made a significant difference, especially when it became known that I have non-Celiac gluten sensitivity (interestingly my mom and daughter were both diagnosed with Celiac disorder). It also eliminated the crushing, horrid migraines! AND reduced the sense of overall unwellness, fibro brain fog, etc.

This is what I suggest to you if I may:
•Consider the inclusion of the cyclobenzeprine. I take a low dose of 10 mg since the higher dose contributed to the day-after drugged sensations. Ask your rheumatologist.
•Discuss with your doctor which OTC pain reducing med to take that would be most beneficial for you.
•Allow yourself the gift of napping when needed. Don't fight it. I used to think of naps as "a wasteful interruption in my day." No -- it's a necessity that gives your body a chance to deal with what your body needs, and you wake up more refreshed and able to go one with your daily activities.
•Here's a biggie: Aim to reduce/ELIMINATE sources of stress. I refuse to watch any programs/shows/movies that tense or stress me. Also no texting or use of computer within 2 hours of bedtime, and invest in blue light computer glasses. Available as readers also.
•Pair down your routine and activities, so that you are not overdoing and exhausting yourself.
•Lose the guilt of turning down requests/invites that invade your schedule/time. It is indeed difficult to firmly but politely saying "I'll have to pass on that." "No, I'm not available for...."
•Ask a family member/partner for gentle massage of areas that can tolerate touch. There are days in which even the slightest touch is painful, so my husband doesn't get offended when I indicate that even a gentle hug can be painful.
•Avoid extremes in temperatures, which can intensify or even trigger painful body responses.
I turn direction of AC flow in cars AWAY from me, especially my face/neck. Avoid being in cold/hot spaces, whether indoors or outdoors. Especially important with Raynaud's.
•Invest in a large-area heating pad. My daughter gifted me a Sunbeam model that is heavenly.
•If you can, invest in a full-chair massage pad. I have one that is great for gentle massage from the neck/shoulders down to my buttocks/thighs. Yes, I have fibromyalgia pain spots in those areas as well. Avoid the "hard kneading/pounding" mode that can be VERY painful.
•When having your BP checked at any medical facility, don't be shy about informing the nurse about fibromyalgia pain points in arms (I will not allow super tight cuff compression because it HURTS as well as give report of severely high BP, which is not helpful or accurate.)
•Eliminate as many stimulant foods/beverages as possible. Learn to appreciate decaffeinated ones, and learn about the foods/nuts/beverages that can naturally aid the body/relaxation.
•Consider eliminating gluten. To be effective, can't do "just a little GF" needs to be all inclusive. It is a bit difficult at first, setting up a gluten-free kitchen/cuboard/menus, but I am grateful for the many resources that are available for guidance. And I'd be happy to help if you would like.😊

I apologize for areas that may be repetitious and for the length of this post. But I wanted to share what has and hasn't worked for me, in the hopes that you may glean a few useful ideas.
Best of luck, and do reach out if you want help in considering eliminating gluten. Read up on the topic and how it's been helpful to so many who suffer from several of my neurological and autoimmune disorders. I would love to have you post back what you decide to do, and how effective or not those choices are.😊🌺

Amen to your comments concerning Fibro and how you deal with it. I have had Fibro for 28 years and other autoimmune diseases & osteoarthritis & recently borderline Lupus. I empathize. I did switch from a low dose of 1/2 tablet of Flexeril 5 mg to recently 1/2 tablet of Tizanidine 2 mg and it has helped a lot. I am also on 1/2 tablet of Plaquenil 200 mg for pain & inflammation and it has been a lifesaver. I am ultra sensitive to meds and can't take much. You are spot on! Best regards to you and Bless you!

I appreciate your taking time for your words of support, and for the info shared about the medications that you are taking. You share being sensitive to medications just as I am. I will look into the Tizanidine and Plaquenol to educate myself on those.
My husband and I were both patients of a rheumatologist (retired about 7-8 yrs ago😞) who was highly educated on alternatives to prescription medications, and he recommended Zyflamend as a means of addressing the inflammation that my hubby experienced with his pervasive rheumatoid arthritis. It is somewhat pricey but can be obtained for less on certain reputable online sites. Does help considerably. Like me, he doesn't want medications if there are warranted alternatives. About 5 years ago, at age 70, he experienced nausea-causing, crushing pain in his hands (also has osteoarthritis to complicate the matter and peripheral neuropathy), especially both thumbs and sides of hands near wrists (also knees and elbows). An orthopedist told him "Surgery will take care of your hands, specifically where you've lost all cushioning." He didn't want surgery. The new rheumatologist recommended Humira, which he also refused. Thankfully, these specific pain issues are not 24/7. He'll continue with Zyflamend and his fish oil supplements, and also avoids activities that will impact on those joints. I will share your info with him. It hurts me to see how he melts with pain whenever those areas are set off by even a slight action. He researched and found that applying Vicks on the affected areas (and covering with gloves, socks, or light bandaging to keep the ointment off clothing, etc.) amazingly brings relief😊. I detest Vicks so I'll use Blue Emu instead (no odor). With especially bad episodes, he'll apply Voltaren but uses it sparingly. I refuse to use Voltaren, based on what I learned through journals, medical sites.
Gracias again!

I was told by my rheumatologist that the same set of symptoms are called “fibromyalgia” if patient is less than 50 y/o, and “PMR” if older than 50 y/o.

He is mistaken. My fibro symptoms are miles different than PMR.
Sounds like a scale he uses and if he is prescribing prednisone to fibro patients, that won't help them.
Or perhaps he was simplifying the difference?
I've mentioned before that a rheumatologist once told me to swim in order to manage fibromyalgia, period. Now that can help assuming someone has access to pool and doesn't overdo it... but as a cure-all? No.

Actually ANS Rewire is a very intense program. It presents that fibromyalgia, CFS, ME, etc., have at their core, an autonomic nervous system that has been made awry by physical and psychological stressors, causing the various symptoms. It aims to reset the ANS using the ability of the brain to change (plasticity). There are ~35 minute video lessons covering diet, exercise, sleep, thought patterns, personality traits, trauma, etc. There are training sessions on sleep and meditation, and a LOT of homework. If a patient is stuck or has a question, feedback is given readily.
I am finding it useful because even if homebound/bedbound, I can continue my “therapy.” It does not take the place of a doctor or a PT, but I find it as a very helpful adjunct.

J