Fibromyalgia -- Need help on how to handle severe pain

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.

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.😊🌺

There are blood tests for imflammation (SED rate and C Reactive Protein) that can help diagnose PMR. I'm 72 and have had the tests before and they were always normal. I will ask my Dr about checking again.

Very good information, thanks for sharing. I've tried Flexeril (Cyclobenzeprine) as well as Tizenadine but couldn't handle the side effects. I did find Darvocet-100 to be the best pain relief years ago but it has since been taken off the market. Now it's just the Tramadol and Ambien at night. Some afternoons I take Tylenol because the Tramadol interferes with my sleep if taken after 2pm even with 5mg Ambien and I'm not keen on upping that. I've been on this combination and prior it was Soma for sleep since 1999 or so.
Finding what works is so important.

I distract myself with household tasks, short walks outside, and going on the computer. Right now I'm having a hard time accepting the fact that this might be my "new normal" as it has significantly changed my life. Thank you.

Interesting info about the meds that you tried. I've never taken Tienadine nor Darvoce-100 (while it was on market) but I have been prescribed Tramadol (as in Tylenol with Tramadol) and the Ambien. The tramadol is Never to be prescribed for a patient who is on cyclobenzeprine, as I discovered when the same doctor (my then-rheumatologist who had diagnosed the fibromyalgia) added the Tylenol-Tramadol medication. ONE dose and I had frightening hallucinations. When I returned and informed her, she gave a nervous laugh, and said "sorry, I didn't know..." You are supposed to know these things as a medial professional for goodness sake! So I left her practice, just couldn't and wouldn't deal with that. That's when I went to my husband's wonderful rheumatologist, the one who was so knowledgeable and ALWAYS cross referenced supplements and meds to rule out complications. Then another doctor prescribed Ambien for my inability to sleep longer than 20 minutes to an hour and jerking wide awake and stressed out. Supposed to help with sleep...had reverse effects on me. Slept up to two hours, then starkly awake for the day (as early as midnight!) and then overcome with desire to close eyes and sleep by noon time, and in a "drugged" state. So I dropped that pill. Can't take morphine or codeine either (hallucinations/night terrors). I could write stories based on my experiences that would make Stephen King take notice! Not much help when my system reacts so strongly and negatively to medications. I'm going to research the Soma that you include in your post, for personal knowledge and to add to my "data base." BTW: other meds that I cannot take are ALL antidepressants (night terrors, hallucinations, inability to follow a conversation, pounding headache with one in particular along with sensation of impending death), ALL statins, as well as Topamax and Depakote (both had been prescribed for severe migraines, but instead each had serious side effects). Had to get off Imitrex injectable, prescribed for those serious migraines due to having had pain INTENSIFY instead of decrease after injecting, making my brain feel like it was about to burst....Doctors just either are interested in working with me and helping, or they give off vibes of "hey, you are more trouble than what I want to take on..."👀. I advocate for myself. Exhausting on so many levels. BUT, I forge forward, and have plenty to be appreciative about.

I had earlier posted about my pain of fibromyalgia and no more meds. I used to be on Tramadol-APAP. 3 YEARS and had hardly any pain if at all. I had to stop it because they put a ban on taking it. But Tram-Apap is tramadol with acetaminophen. It was good. But now with neuropathy in my legs and feet in and severe lower back pain I just might look into PT. I will give it a good try. Hang tough!

Very good information, thanks for sharing. I've tried Flexeril (Cyclobenzeprine) as well as Tizenadine but couldn't handle the side effects. I did find Darvocet-100 to be the best pain relief years ago but it has since been taken off the market. Now it's just the Tramadol and Ambien at night. Some afternoons I take Tylenol because the Tramadol interferes with my sleep if taken after 2pm even with 5mg Ambien and I'm not keen on upping that. I've been on this combination and prior it was Soma for sleep since 1999 or so.
Finding what works is so important.