Newbie

will this illness ever go away,fibro haze is the hardest thing to cope with,never know when it will raise its ugly head

I’m the same way. It has hit me at all times and places. I make lists of everything I need to buy when I go out . I make a list of the things I want to accomplish in a day . I don’t use them on a regular basis but on the days that my fog does hit they do come in handy .

Unfortunately, it might not go away. But there are a lot of reports of people getting better through their hard work and efforts.

My fibromyalgia has gotten much better since I was diagnosed, and I feel almost normal most days now. It's been a lot of work and experimentation for very small improvements, accumulating over a couple of years. I've needed a lot of support from my husband and a lot of understanding from my employer and children. The things that helped were (note: I Am Not A Doctor; this is just me sharing my experiences):

Not stressing. The list below of things that helped is kind of overwhelming, but I didn't do it all at once. I did what I could handle, and took short-cuts and let things slide when I was tired. I was only consistent about prescription medications, and just did what I could manage for the others.

anti-depressants (Escitalopram) for pain, which I was able to get off of after about 18 months (good news because I started having side effects as I got better)

anti-depressants (Trazodone) for sleep (not generally recommended for fibromyalgia - can cause tachycardia), which I am currently trying to get off of

exercise - what I could handle to get a bit tired each day without getting post-exertional malaise, mostly walking but also gardening - pulling weeds seems to make me sore but not scary RSI-like pain. NO yoga for me, I got so sick after even a simple bit of it! Some folks swear by yoga - everyone is different.

diet - low-carb with an emphasis on Vit. D foods because Vit. D supplements combined with D-ribose affected my blood sugar too much.

supplements - D-ribose (this one is huge! helps with both pain and fibro-fog, takes a couple of weeks to really build up but I now feel it if I miss a few days), magnesium, Vit. C, Co-enzyme Q10, and (when I can tolerate it) Vit. D. I strongly recommend talking to your doctor about D-ribose. It's not a miracle drug, but I'd give it about 20% of the credit for how much better I feel these days.

Sunlight (vitamin D) and even tanning booths. I'd recommend supplements over these if they work for you, though - they just didn't work for me due to the blood sugar issues. I'll probably buy a sun lamp this winter to help w/ the Vitamin D.

Good sleep hygiene, including filter software to red-shift the spectrum of all of my screens near bedtime - computer monitor, phones, tablets, and looking into options for our TV now

Gloves, hats, and slippers for cold weather - there's evidence that the peripheral nervous system in these areas may not function correctly, so keeping head, palms, and feet covered and warm may be more important than keeping arms, legs, etc. covered. I found my temperature stayed more steady when I put fingerless gloves on before putting sweaters on.

Some physical therapy exercises seem like they might have helped, but my therapist got confused as my muscle strength came and went seemingly at random and seemed to come to the conclusion that I hadn't been trying during the periods when I was just weak. He also pushed me too hard against my protests, resulting in me getting so sick from post-exertional malaise that I missed two days of work before he started to listen when I said I needed to stop.

In general, I found that my doctors weren't able to give me good information on fibromyalgia; lots of new information was coming out (and more is still coming out), and they just weren't up-to-date. I really had to do the footwork. Hopefully your medical providers are in a better position, but don't be afraid to learn for yourself (if you get breaks in fibro-fog).

Friends with fibromyalgia tell me they get relief from massage. When I'm flaring, I generally don't have the energy to go to someone for care, so I haven't tried this.

Note that everyone needs different treatment - I found Teitelbaum's SHINE protocol was a helpful guide to brainstorming what might help with my own particular set of symptoms.

I found beating fibromyalgia was like a game of whack-a-mole. I'd manage one symptom, and then another would become really challenging. Things that helped when I first started coping now cause problems. Several times I overcompensated for symptoms only to cause myself new symptoms, which I resolved by moderating my treatments. I couldn't see overall progress unless I compared over a long stretch of time. I began to play a little game with myself I liked to call, "This time last (month, year, etc.)". For example, "This time last month, I couldn't push a shopping cart. Now I can, as long as it doesn't have too much in it." A year later it was, "This time last year, I couldn't push a shopping cart. Now I can push heavy carts, and even carry most shopping baskets, with only short rests occasionally." It's like the stock market: If you watch it too closely, you get caught up in the small ups and downs - but it's the long-term trends that really matter.

I hope this helps. I went from being unable to type at a computer for more than a couple of hours without severe pain, unable to drive safely for more than fifteen minutes because of the pain, falling asleep at work daily, sleeping hours during the afternoon every day I wasn't at work - to almost being normal, just some mild fibro-fog that I'm still learning to cope with and occasional flares of aches and pains that are annoying but don't really keep me from living. I was able to keep my job, and while my relationships were impacted while I recovered, I am now able to start rebuilding some of what I lost there (and my core relationships - husband and children - actually have thrived).

I know fibromyalgia can shift, and I am likely to go through flares again - but my toolbox is so much better, and I am so much more aware of what the messages from my body mean. I also am a lot better at ignoring "shaming" behaviors around me - implications that I am lazy, uncaring, and so on don't faze me much these days. There's a lot of confidence that comes from taking the best care of yourself that you can, even if it looks "lazy" to people who don't get it.

Hopefully I didn't write too much - I know it can be hard to read when having fibro-fog. Best of luck, hope this gives some ideas and encouragement.

I agree that fibro fog is the worst part of this. I lose my thought mid sentence, forget names and faces…ugh. It may not go away, but my attitude has gotten better. When I’m with my husband or daughter and the fog kicks in, I am able to laugh in frustration. For me, laughter is the best medicine. OK, so I have fibro, OK. I forget things. OK. :slight_smile: Good luck to you