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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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@irr4et

For 13 Yrs i was able to control Fibro pain well but the added pain from neck surgery and a botched T 3 epidural made my diagnosis change to Central Pain Syndrome. It’s very high pain. I take Lyrica and have medical Cannabis on hand but I avoid it bc it constipates me badly and that has caused its own set of diff problems. All this is consuming my muscles bc cortisol stays elevated. I know I will go to heaven sooner than I thought I would in my younger healthier years which was prior to age 50. I am now 72. I’ve fought hard! Hey going to heaven is a fabulous thing! I just hate to sadden my friends, husband, children and grands.

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Replies to "For 13 Yrs i was able to control Fibro pain well but the added pain from..."

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.😊🌺