Living with Fibromyalgia: Introduce yourself & meet others

@rex1971 I was diagnosed in my early 20’s (I’m in my 40’s now). My Mom was diagnosed with fibro when I was in college although she had it since her 30’s and I know understand why she be in bed for days with fatigue, remove necklaces saying that they hurt her neck and skin, and the list goes on. After a bad flare with horrible fatigue she told me that I needed to take time to mourn my old self- one that could wake up in the morning feeling rested, go to school or work, then do a million other things without thinking if I’ll be bedridden from fatigue and pain the next day, and all while not once feeling my muscles and skin burning or the slightest touch causing pain.
I now never wake up feeling rested (ever), I feel tired and drained all day, and there are many days when I try to put off taking a shower bc the water hitting my skin/muscles feels like being hit with tiny steel baseball bats.
I’m so sorry you’re going through this. It’s the pits. I did end up mourning my old body and life and it actually helped.

Hello All,
I was diagnosed a couple of years ago following my first bout with COVID. It took a while to rule out other items. Finally, the rheumatologist diagnosed Fibro. It really changed my life. I had lost a lot of weight before COVID, was exercising, and feeling so strong. Then COVID, a heart issue, ongoing brain fog (this part really sucks), and lethargy. Besides my own physical, mental, and emotional struggles with the condition, when I tell people I have it, or where I'm struggling on any given day, I have close family and friends who don't believe fibro is a real thing. My husband doesn't get it either (I wish he would research it on his own so he could understand it better), and so he doesn't know how to help or let me vent.

Most recently, I stood up too quickly and blacked out. When I fell, my ankles rolled and I broke both of them -- yes, both. Easily the most painful experience I have ever had.

As far as the medication, I'm not on anything currently for Fibro. Through the diagnostic process, I took everything from steroids to duloxetine. I gained so much weight through the process, but nothing ever really made the pain go away. Brain fog moments still occur, and some days are just an overwhelming amount of fatigue. These are some of the reasons I chose to retire a few years early.

I'm grateful to have found this board. It's somehow comforting to read others' posts about their experiencing and what has worked or has not worked for them.

@quilterfingers

I'm sorry for both you and your daughter, BUT guilt is not going to do anything positive for your health or hers. Maybe try to see it as something that will deepen your bond? Thank goodness she has you to talk to, ask questions of, etc. While there is a hereditary component (8 times greater chance of developing it), there are other factors, too - as I'm betting you're aware of - environmental triggers (such as infections, trauma, or stress). Please be nice to yourself!

God Bless all of you with Fibromyalgia. I have had it for 30+ years. I have found (discussed with friends who have it too) that Raynaud's Syndrome, Migraines, Allergies, Sinus Issues, Brain Fog, Short Term Memory Loss, Daily Headaches, Extreme Fatigue, Soreness, Achiness, Osteoarthritis, Thyroid Disease, Lupus, Costochondritis, Tingling, Burning, Skin sore to the touch, Weakened Immune System, Sensitivity to a lot of noise & smells all tend to go along with Fibromyalgia.

I have found not found any medication that I can tolerate and I refuse to take Cymbalta due to the side effects of two friends that had to come off it. I have reacted to every medication I have been given, even in low doses. I use a pain cream and take Tylenol, rest, use heat packs. If you can soak in the tub with Epsom Salts it helps take the edge off. Sugar & Caffeine makes mine worse so I try and steer clear of these two. People with Fibro need more protein, so I usually do a
protein shake in the morning.

Naps during the day help (I also have Long Covid which has increases fatigue), a light massage helps once a month and if I overload myself, I am going to have a flare. Weather plays a big part in my pain level too with the barometric changes.

Look up the Spoon Theory and perhaps it will help explain to your family the limitations of your energy and stamina.

I have been to an Integrative Medicine Doctor, Rheumatologist & Chiropractor and none of them were able to
help me.

I have chronic asthma so its very hard to find a salt water pool that doesn't have some chlorine in it.

I move as much as I can to keep from getting stiffer.

Please do not heap guilt upon yourself. You are not lazy. Your body is just not cooperating.

I can plan something, but, it doesn't mean I will be able to attend.

I have found a Fibro/Arthritis Specialist doctor who will be giving me trigger point injections in the not-too-distant future. I have not tried red light therapy yet,
but it can help some people. I take Magnesium Glycinate 200 mg , B2, Vitamin D3+K2, Vitamin C, B Supplements, 2.5 mg, Zinc and occasional NAC 500 mg (I
only take 250 mg of this as it is drying to the mouth and eyes).

I am a Christian and I trust the Lord for each day, pray, read my Bible and also I find laughter is a very good medicine.

Praying for each of you. Blessings & Prayers....

@brandic Funny, I was in my forties when I started salsa dancing (at suggestion of my therapist) and joined a community that went out dancing and classes 2-4 times per week. San Francisco had so many dance places. I overdid it. I mean hard fast dancing for hours without breaks. Danced til 1am came home energized with endorphins and couldn’t get to sleep until around 4am. Got up at 5:30am. Went to work. I was on cloud nine. Then slam!!!!! My body wouldn’t work, so much pain, fatigue, etc. went through specialist after specialist. Tested for MS since I could hardly walk. I’ve never been the same or even close to it. Although a few minutes of constant walking (going to grocery) will cause pain, I’m much better, even stopped the Cymbalta (my choice) cause took it for so many years. When I flare up it gets bad BUT a big help for me has been chiropractor. Find a chiropractor that sees fibromyalgia patients. I Use it all, biofreeze heating pad red light therapy belt, still use just 400 mg of Gabapentin, recently started LDN and have high hopes due to recommendations on here. It can get better. Especially cause there’s so much more that can be done as other Fibro patients can advise. It seems different things work for different people and sometimes you have to change to other treatments, as something stops working. Your daughter is so lucky to have you. God bless.

What got rid of my fibro pain was seeing a nutritionist. I don't eat a lot of sugar, I think spinach in smoothies helped me A lot. I have a smoothie with Greek yogurt, spinach, and frozen fruit every other day. Sometimes with chia seeds I started eating the spinach I got out of pain. I rarely have fibro pain since then for thirteen years. I have a sweet once a week and sometimes low-fat pudding with it once a week. I eat a lot of chicken and fruits and other veggies. I exercise right now 2-4 times a week. I walk on the treadmill and do yoga. I have no fibro pain. I am struggling with fatigue really bad. I have problems sleeping. I can sleep two nights in a row normal. After that I can't get to bed or wake up.

@healthy12 Oh no. I eat a lot of sugar. Does that contribute to fibro pain?