Living with Fibromyalgia: Introduce yourself & meet others

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.

Can you ask to be referred to a ‘Pain Clinic’ Arabella, because they really do understand fibromyalgia - and can recommend suitable meds for your levels of pain. I have found them truly invaluable and, now work as a volunteer peer support worker for people that have been through the pain clinic here in the U.K.

Hello! My name is Arabella. I was diagnosed with FM in 2014. However, I did not realize it until 2024 that I had it. My symptoms are worse and can no longer be ignored. I’m struggling with Kaiser Permanente to get acknowledged, treated and supported. It is really frustrating to navigate this solo. Giving support groups a try.

Hi daisy17, I too would love to hear more recommendations. My sister introduced me to Daytrip 25mg cbd fizzy drinks. It helps her anxiety. I experimented with other brands available at a local store in Northern California, but only Daytrip gave me a little relief from burning legs on days with heightened pain signals. Based on my research, broad based terpenes in Daytrip drinks and gummies was the only difference I could ascertain. One brand with 50 mg cbd did not provide relief. You can read more about terpenes on the Daytrip website.

I also tried delta9 thc gummies purchased online from cbdmd, one of the lower cost delta9 the online vendors. A doctor told me that a ratio of 5 cbd to 1 thc is recommended for pain management.

I stopped further research as I am halfway through 6 weeks of chemo radiation. Unfortunately radiation of pelvic lymph nodes has severely increased burning leg pain. I need to focus on management of cancer treatment side effects and recovery right now, but I would love to hear other experiences with cbd fibromyalgia pain management. I have been unable to find a functional medicine doctor to work with on alternative pain management methods. My body doesn’t react well to all of the recommended FM pharmaceuticals. I need to find other pain management solutions.

Best of luck to you and everyone trying to manage FM pain. It’s a lifetime journey.

My son gets my cannabis (CBD & THC combination) for me at a dispensary less than a mile away. He buys it at a reputable cannabis store so I feel safe using it (1/2 tsp or less). Oregon highly regulates retail cannabis which is reassuring. It came in a tiny syringe with a thick gooey substance that I put into 1 cup of melted butter ghee and mixed thoroughly.
My doctor wouldn't prescribe any pain meds for my fibromyalgia so I asked him to refer me to a pain specialist but he wouldn't. He stated that fibromyalgia doesn't qualify for a pain specialist.
My doctor before him was a woman and she prescribed hydrocodone/acetaminophen 5/325 for twice a day but she moved her practice to another city so I had to change doctors. Those 5 years on that drug made the pain much more tolerable for me and that dose is not addicting; I had to quit it cold turkey with no side effects. I prefer female doctors because they understand women's issues better than males.