New here, but not new to “the disease of no known origin”

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New member
Aug 15, 2023
I am 65y/o female who has had fibromyalgia/chronic fatigue since I came down with mono in college….a very long time ago.

It wasn’t listed on my medical record until decades later. However, listing it didn’t change much of anything.

I have always approach it with exercise (get in the pool is my advice) Diet (Mediterranean) avoiding sitting or standing for long periods and by using self-calming activities. Rest when you need to, but not too long. I start my day with 2 cups of coffee and swimming, then I act like a normal person for maybe 4 hours, at which point my day usually deteriorates quickly.

I take Ibuprophen for pain when it gets bad and have a prescription for Lunesta that I only take when I am desperate for sleep.( It can become habit forming, gives me the blues, and if I take it for days in a row I can’t sleep when I go off of it. ). I also take thyroid medicine. When I have really overdone it I have needed muscle relaxers to recover. I do drink electrolytes when I exercise. It keeps the AFib at bay.

Oddly, a shot of whiskey (yuck) helps quite a bit. I read that is because it raises serotonin and dopamine. I do react weirdly to drugs. Morphine has no effect on me whatsoever (hysterectomy). IV potassium made my whole arm feel like it was on fire (dehydrated) Valium does not put me out at a full legal dose, but it does numb the pain (dental work) Keflex gave me an allergic rash. I have a high tolerance for hard liquor, but I can only have one beer or glass of wine. So, something is weird with my receptor sites. Note: I didn’t drink at all for most of my adult life. Probably started it in my 50’s, but here again I avoid because I could easily become an alcoholic.

I am not a depressed or anxious person. I have had depression in the past, but I am over it. Nothing is going to steal my joy. All the meds that I tried for depression made me feel crazy. I have really come to depend on my faith.

My sister also has this wonkey condition and I watched her get addicted to opioids and become very inactive and depressed. That is one of the reasons that I have worked hard to treat mine with diet, exercise and self-care. #1 on the list of self-care is learning to say NO with no guilt or regret. It is a very hard lesson for a lot of women, and especially so when people can’t see anything wrong with you from the outside.

My main symptoms are widespread connective tissue/muscle pain and sensitivity, stiffness, widespread severe muscle cramping and overwhelming fatigue, sleep disturbance, mental fogginess, and a completely broken internal thermostat. Plantar fasciitis too.

I recently discovered that magnesium at bedtime is helping the muscle cramps. My watch says I am sleeping better too.

My only other health issue was Polycystic ovary syndrome with endometriosis. Amazingly had 7 kids despite that.

All my blood work is usually normal except my total WBC count is always a little low. I did have a positive ANA test but the rheumatologist tested me for every auto-immune disease known to man it seems and every test was negative.

After I turned 64, I developed a large kidney stone and later had an episode of AFib. My blood work now has values that go too high or too low, but nothing is consistent.

I have always had sensitivity to light and sound and have a ridiculous startle reflex.

Now, here I am at 65 and I just sent my Dr a note stating, “I surrender! Ready to try drugs.” This is after developing a lot of back pain with trouble standing up, along with worsening fatigue.

She has ordered Savella, but I see there is a hitch with the insurance company in getting it
filled. They are working that out

Did not mean to say this much. Must be repressed thoughts pouring out.

Everyone’s journey looks different.I say keep searching for answers, accept the reality in front of you, and find a way to keep on living despite the trials we endure.
@ImHere123 , you deserve a lot of respect for your excellent attitude and everything you have done and are doing to benefit your health. Good for you!

I truly hope that the medication helps you without having side effects that are not tolerable. And that you will let us know, because it's all good information for others, even though everyone is different in how they respond to drugs.
So for, I have not found one that is that for me, and I do my very you have avoid taking anything at all. It's not a fun game, huh?

But I know for certain that the right attitude towards it all, which you clearly have, is the largest contributor to living a good life in spite of everything.

I wonder about your startle reflex, only because I have had that as well and it was due to PTSD. Once I got that under control, the startle reflex became much closer to normal. Don't know what it is for you, of course, just thought I'd mention that. I also have sensitivity to sound, and need to live as I do in a place away from people that is very quiet. But I don't think that in my case that has to do with fibro. Not that I know for sure, of course.

Everyone’s journey looks different.I say keep searching for answers, accept the reality in front of you, and find a way to keep on living despite the trials we endure.
This is it in a nutshell.

And by the way don't be the least concerned about how much you write here. Write all you want to.
And, from me, I thank you for not putting it all in one long huge paragraph, but putting spaces in your writing, which makes it a lot easier for everyone to read, especially those of us with wonky eyesight!

Welcome to the forum, and I hope you stick around because maybe something here can help you, and I know that you can be a good influence on others.
You didn’t overshare at all! We all have complicated journeys and need to support each other. I thinkIwill try swimming although it’s hard for me to get to a pool.
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