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Fibromyalgia -- Need help on how to handle severe pain

Fibromyalgia | Last Active: Oct 29, 2023 | Replies (156)

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@delia74

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.😊🌺

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Replies to "So sorry to read about your experiences, and I do commiserate since I am almost 75..."

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!

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.