Struggling with "Fibromyalgia"

[CathyA]

I put that in parentheses because I'm not sure what the hell that really is. I was diagnosed about 20 years ago, but it probably has been longer than that......and maybe I was even born with it.

Yes, I have pretty bad arthritis in my knees and hands. I have refused a knee replacement and finger surgery (in part due to the fact of how my fibromyalgia might react to that).
I can't take NSAIDS or Glucosamine condroitin. I'm excruciatingly sensitive to almost all medications.

I was coping pretty well with all the various pains/problems, until about a 2 months after being treated with Cipro/Flagyl for diverticulitis, then following up with a colonoscopy in November. Of course, the GI doc says my knew pains are unrelated. All 3 of my docs say that Cipro usually ruptures tendons immediately and in young people and doesn't act this way.

In January, I began having severe muscle pains everywhere. Then in April it started to involve my various joints.......my "good" knee, my elbows, my pelvic bones. It even hurts to sit. My internal medicine doc changed my antidepressant, but that made me feel worse, so I'm back on the first one......which appears to have quit working.

Along with all my muscles and joints hurting, I'm having panic attacks. When I have such awful pains, I get pretty anxious. I've tried Flexeril (muscle relaxant) and it puts me to sleep but doesn't do much for the pain. I take some xanax which helps the angst a bit, but not the pain. I'm taking 3 grams of tylenol/day, and sometimes it helps and sometimes not. I quit doing my stretches, since I don't know what makes anything better or worse.

I went to my rheumatologist last week and he ordered an L-S spine xray and several lab tests and said "Make a follow-up appointment for 2 months." WTF??? I got upset, telling them I've been in pain for 2 months already, waiting for this appointment. So they said I could come back in 2 weeks and see the nurse practitioner (who might give me an injection in my worst knee). I called yesterday to ask her questions about the test results, the pain, etc., and after being on hold for awhile, someone said they'd take a message for her. Well, they are closed on Fridays (today) and Monday is a holiday and I never heard back.

I was going to make an appointment with my Internal Medicine doc, after finding out the lab results, so he wouldn't order the same things. This is a big city and there's no reason for this poor treatment (not a small town).

I'm trying not to see several different docs at once, since I think that could get too confusing for everyone. But dammit........this pain is awful. There's always the E.R........but they have their limits and they'd probably refer me to some poor schmuck doc who's on-call over the holiday weekend and likely the guy who's at the bottom of the totem pole.

I've upped my magnesium, thinking a low magnesium could be contributing to all the muscle pains. DH is a doctor (a researcher), but he just shrugs his shoulders.........which is another emotional pain I'm enduring.

I see the nurse practitioner next Thursday, so I'm trying not to make an appointment with any other doc until then. But dang, I'm in pain. I have some hydrocodone, but it doesn't help that much and has it's own side-effects.

I soaked my feet in epsom salts yesterday. I should soak in a tub.......but cleaning it out first (I only take showers), and getting in and out of it is a challenge.

I truly think my pain pathways are super connected with my "freaking out" pathways and it's not fun at all.

I'm getting pretty tired being me. :(

Any suggestions for pain control? I want to run some errands, but I'm afraid of the pain that might follow. I'm just very fortunate to not have to hold down a job.

[Ultralight]

I am really, really sorry you are going through this.

I was diagnosed with Fibromyalgia back in 2007. Joint pain. Foggy brain. Body aches all over. Stomach problems. Other issues too.

But I strongly suspect that I had (have?) Lyme Disease or another tick-related illness of that sort.

Eventually I got mostly better. Maybe it was the antibiotics I took for 28 days when one doc was like: "Hmmm... maybe this is Lyme."

Or maybe I got better on my own. Or maybe it was that I was a vegan for 3.5 years. I started eating meat, fish, dairy, and eggs around the time I got better. But they checked my vitamin and mineral levels and I was okay there.

Either way, I feel for you. These nebulous ailments are nightmarish.

[CathyA]

Thanks ULA, and I'm sorry you had (have) this. Back when all this flared up many years ago, I did have a Lyme test at (supposedly) the best lab for it. Seems like, for some reason, it's hard to diagnose for sure. anyhow....back then it was negative. But there are 2 other diseases that can be involved from a tick bite that usually aren't also tested for.

Lyme is one of the tests that he drew for last week. (only because I asked about it). Did you ever have a tick bite that you knew of? Supposedly Lyme is only carried by the deer tick, but who knows. I don't think we have those around here.
Funny you mention you started feeling better when you ate meat/dairy. My DD is vegan and she always seems to be sick. I keep warning her of the potential problems, but she's head-strong. She does take extra D2. Did you ever have mono? Seems like the Epstein-Barr virus can resurface and cause problems later too.
Thanks ULA. I'm glad you got some relief.

[Ultralight]

Thanks ULA, and I'm sorry you had (have) this. Back when all this flared up many years ago, I did have a Lyme test at (supposedly) the best lab for it. Seems like, for some reason, it's hard to diagnose for sure. anyhow....back then it was negative. But there are 2 other diseases that can be involved from a tick bite that usually aren't also tested for.

Lyme is one of the tests that he drew for last week. (only because I asked about it). Did you ever have a tick bite that you knew of? Supposedly Lyme is only carried by the deer tick, but who knows. I don't think we have those around here.
Funny you mention you started feeling better when you ate meat/dairy. My DD is vegan and she always seems to be sick. I keep warning her of the potential problems, but she's head-strong. She does take extra D2. Did you ever have mono? Seems like the Epstein-Barr virus can resurface and cause problems later too.
Thanks ULA. I'm glad you got some relief.

My joints still get sore and I seem to get physically tired more than I ought to. Then I sleep to rest up, more than seems reasonable. But I am mostly recovered (though I always worry it could come back because it did come back one year after I originally got better). The whole thing is strange. It seems that quite a number of people are suffering from this or a similar malady.

Ticks are evil. They are the number one reason I fish from my canoe. Trekking through a thicket here in OH means you will be covered in ticks. I have done it and it scared the bejesus out of me.

I did not have a tick bite that I knew of. I had never actually seen one until 2013. I was fishing from shore and decided to take a shortcut through the woods. I was with my sis and BIL. The shortcut was 30 yards. We all came out covered in ticks. My sis had then in her hair. BIL had them all over his legs. 3 were on my boots.

Since then I have been using permethrin-based repellent on my fishing clothes (pants, shirts, hat). I also take duct tape and wrap it around the top of my rubber boots -- sticky side out. 65% of ticks get on you around ankle level, according to research.

Which part of the country do you live in?

I honestly don't know for certain if my veganism was to blame. But I was so sick I will not take the chance and ever go vegan again. I ate fortified foods and I took multi-vitamins regularly. I also ate pretty well -- whole grain, legumes, lots of fresh fruits, and even choked down veggies somewhat often back then. And the docs took measure of my vitamin and mineral levels. They said I was low on D (but not super low). Everything else was in normal ranges.

My family doctor back them tried to get me into some "rare and mystery disease" study in Maryland. I was rejected, but not sure why. Probably because so many people have this strange and vague malady.

[JaneV2.0]

http://www.cnn.com/2010/HEALTH/02/22/medical.marijuana/
http://nationalpainreport.com/marijuana-rated-most-effective-for-treating-fibromyalgia-8823638.html

I seem to be beating the cannabis drum on this and the arthritis thread--which is kind of odd since I haven't experimented enough with it to test its effectiveness (for me, anyway) as a pain med. But I thought I'd put this out there. I have a friend who brews up cannabis cream in a crock pot and slathers it on their knees, and says it relieves the pain for several hours.

But I think you live where cannabis is illegal, so I guess the point is moot. Eventually it will be legal everywhere, but that's no help now.

[Suzanne]

I have CFS. The doctors dithered between that and fibromyalgia, and came down on the side of CFS when the lumbar puncture revealed Epstein-Barr prions in my cerebrospinal fluid.

What helped for me, and helps when I have a flare, is a very low glycaemic-index diet. I choose items with a GI of less than 55. Sugars and starches are inflammatory. I take supplementary B12 - 1 gram/week, vitamin D2 - 2000 IU/day, and magnesium - 500mg/day on an ongoing basis. I also push up my intake of omega-3s: Bone broths, butter from grassfed cows, eggs from pastured chickens. If you can tolerate fish oil, then a high-quality fish oil will give you good quantities of omega-3s. These are also anti-inflammatory.

I've been flaring more often recently, and it was because I was not paying attention to what I was eating. To be honest, I was eating pastries, cookies, and chips, at work, simply because they're there and abundant. Since I quit cold turkey, and looked attentively at my meals, I'm much better, and have shed 5lb.

[JaneV2.0]

I haven't noticed that diet helps me much with osteoarthritis. But I do agree that an anti-inflammatory plan like the paleo auto-immune protocol or Terry Wahl's mitochondria support regimen are steps in the right direction. Adding in connective tissue like gelatin and/or hydrolyzed collagen has reportedly helped some people. An elimination diet would be the place to start.

I ran across this article while Googling. It's provocative--and might be hard for some to carry off--but it might be worth a try. Like Suzanne's diet, but probably more so:
https://zerocarbzen.com/tag/fibromyalgia/