Living with Fibromyalgia: Introduce yourself & meet others

Tagging @onetowatchst, @wendyhobbie, @covidstinks2023, @dianecostella, @rwinney, @marye2, @lacy2, @mayopam, @susanfalcon52, and @dwc62 to get the new group started. You have all recently met one-another in Fibromyalgia: How do you cope - https://connect.mayoclinic.org/discussion/fibromyalgia-3/ discussion.

How are you all doing in your fibromyalgia journey? Any positive trends to share, or pitfalls for newcomers to watch out for?

I joined The More Good Days Group and found their advice and program very helpful in managing my fibromyalgia.

Justin Thank You!, I numbered these as it will make it easier to read. I have had fibromyalgia for 28 years and below are symptoms & coping mechanisms that I hope will help others. God Bless You all and praying for you all that have this. It is not an easy road.

1) Fibro can cause burning, aching, pain to the touch, stiffness, muscle spasms, migraines, IBS, daily headaches. brain fog, deep pain that even feels like its in the joints....buts its the in the fibrous tissue & muscle. Extreme fatigue. Chronic Fatigue Sydrome & Fibromyalgia go hand in hand. Us Fibro folks are also sensitive to a lot of things that other people are not.

2) Thyroid Disease tends to go along with Fibromyalgia, so please get all of your thyroid levels checked: TSH, T3, T4 & Thyroid Antiglobulins & Antibodies. You can have more than 1 thyroid disease. I have Hashimotos & Graves Disease.

3) Arthritis tends to go along with Fibromyalgia.

4) I find rest is helpful, hot bath soaks in Epsom salt or a hot shower if you can't get into tub, heat packs (Bed Buddy on Amazon), Voltaren Gel rubs (a few times a day) and I use Flexeril 5 mg for spasms. I take a lot of supplements. Magnesium is good for Fibromyalgia. Make sure that your D3 and B12 are in check and you are not low as this can cause pain and more fatigue.

5) Extra strength tylenol 650 mg as I cannot take NSAID such as Motrin, Advil, Aleve or prescription Mobic. I have tried so many meds and I can't tolerate most of them for Fibro.

6) Somedays a short nap with heatpacks helps. I turn the ringer off on the phone. I may feel good for an hour and then start hurting all over and become exhausted for no reason. Crazy, isn't it?

7) I cannot overplan my calendar. If I am invited to something, I say, "I'll see how that day is going for me". It's hard to commit to something with fibromyalgia.

8) Keep moving even if you don't feel like it or you will get stiffer. Stretch in the morning when you get up. If you can tolerate a massage, it helps.

9) If you see a change in the fibromyalgia, see your primary physician as other things can mimic fibro such as: Lupus, MS or RA.

10) Birthdays for family & holidays can be hard as you have more to do. Try and pace yourself (I am a type A and this is hard for me!) and do a little something each day to prepare. Order gifts online. Use gift bags instead of wrapping...that aggravates my hands (I have arthritis in my hands).

11) Order groceries online and bring bags in the house making more trips rather than fewer or you can flare yourself up. There are actually some grips you can put on grocery bags to take the strain off of your hands. I think Amazon has them.

12) Try to avoid stress (I know!) and a steady diet of negativity such as the news & people that always have so much drama in their life. Emotional turmoil can cause a flare up. Extreme weather change can cause a flare. Also, caffeine & sugar are not your friend. If you have extra weight on you, try and get it off. This has helped me greatly and I still have a few pounds to go. 1 pound of extra weight is 4 pounds extra on your knees!

13) Women are more prone to fibromyalgia than men. I believe that having Epstein Barr and chonic sinus infections for many years triggered this for me.

14) COVID ramped up my fibromyaglia a lot.

15) Wear good supportive shoes.

16) When I have a good day, I cannot over do it or I will have a flare up. Pace yourself on the good days! Mornings are the worst time for me and so I try and not plan early morning appointments.

17) Laugh! Be around people that are postiive and make you laugh. "A merry heart doeth good like a medicine....but a broken spirit drieth up the bones" Proverbs 17:22

18) I have 2 dear friends that have fibromyalgia and we talk a lot and pray for each other. It feels so good to unload sometimes.

19) Do things that relax you. I love crossword puzzles, music, singing, writing, Pinterest recipes, journaling, sitting in the sunshine, watching birds, baking, writing cards to others to gets my mind off of myself. Pain can consume your thinking. Be others minded. On days I am able, I make extra soup for my family so I can drop off some at someone's door that has COVID, the flu or other illnesses.

20) Most of all, I love reading my Bible, Praying for others. My personal relationship with the Lord all these years is what has sustained me and kept me going. Chronic suffering has changed my prayer life to trust Him more and pray for others fervently that are suffering.

21) When I have a pity party (and I do) I must get out of that kind of thinking really quickly. "As a man thinketh in his heart, so is he" Proverbs 23:7. I remind myself there are others a whole lot worse off than me.

22) I'm getting ready to try red light therapy and possibly try a chiropractor. Stay tuned....

23) Find at least 5 things daily you are grateful for.

24) Cooking huge meals is something I no longer can do. The standing is hard for long periods of time. I keep my meals at home simple and use the crock pot a lot.

25) If I have a doctors appointment or errands for that day, I get a takeout meal and bring home if I do not have leftovers. I know that I will be exhausted.

God Bless You All Greatly. I empathize. I care.

I have had fibro for years, but after following, I am beginning to think I may have PMR.. has anyone else been brought to the same conclusion of this condition?

Hi Justin (and all), thank you for the invitation to add my 2 cents. While I don't have Fibromyalgia, I do have Central Sensitization Syndrome (CSS) which is the umbrella to fibro and many other chronic conditions that stem from the central nervous system.

Mayo's Dr. Christopher Sletten explains CSS -
https://youtu.be/vJNhdnSK3WQ?si=Qdv9HsQHE13s-cza

I'm doing pretty well and manage symptoms one day at a time. Life is a bit of a chess match and can be challenging to ride the ebbs and flows of chronic flares and such. I try to focus on what I can do in each moment. Yes, I break it down to moments because symptoms shift and when one body part is flaring, I shift mindset to find what IS working better in that moment and focus there. Moderation and modification are keys to successfully manage getting through days. Finding the balance of activity and rest helps bring better stability and function.

There are 4 components I learned at Mayo Clinic's Pain Rehab Center which ring truest in pain-management:

1. Physical - hurt does not always equal harm, once diagnosed with a chronic condition. Moderated physical activity is a must to avoid deconditioning and stay strong, not only physically, but mentally. Motion is lotion! Daily stretching, some form of cardio, like walking or riding my recumbent bike, keeps muscles gently moving, plus weights and resistant bands for strength building. All started in moderation and graded exposure.

2. Emotional - ongoing work on mental health. Learn coping strategies and stress-management skills to sustain living with a chronic condition, and understand it's toll from grief and loss, to acceptance. I speak to a therapist and continue to problem-solve, while balancing my emotional needs while living with chronic conditions.

3. Behavioral - understand that behaviors influence pain as does emotional well-being. Be aware of "pain behaviors" - anything you do, say or think that reminds you of pain. I've worked on reducing pain talk and touching body parts that hurt, for example, which over time helps reduce reminders of pain to the brain hence accessing those nasty pain pathways. Cognitive Behavioral Therapy (CBT) helped tremendously teach me how to change my behaviors for the better.

4. Chemical - outside of medically necessary medicines, try to reduce or omit the amount of meds depended on, as chemicals may have an adverse affect on the central nervous system and add layering additional side effects. Opioids, in particular, may create hyperalgesia which is an increased sensitivity to feeling pain and an extreme response to pain. I was able to clearly identify a positive change after my own chemical reduction from multiple medications.

All in all everyone is on their own pain-management journey and it may look different for each. My advice is to find what works best for you. Be open to self-help and work at shifting dependency from doctors and the medical world, to taking ownership and power of how you can help yourself. Self-advocacy and small steps can lead to big wins. What small steps have you taken to help manage fibromyalgia symptoms? Do you have tools to share?

I have just been diagnosed with Polymyalgia Rheumatica and have been prescribed Prednisone 3 5mg tablets each morning only on day 5 but having really bad brain fog each day which is driving me mad but the pain and stiffness is reducing insomuch I can bend better and raise my arms above my armpits