Thread: Fibromyalgia

I did a search and didn't find anything posted about this disorder. Just curious if anyone else has any experience with it. After two weeks of testing, I was diagnosed with Fibro yesterday. I've been reading what I can about it since (when my head isn't pounding). Although hesitant to accept the diagnosis, it actually makes more and more sense the more I read about it. The constant pain I've been in since I was 12, the doctors constantly telling me that they couldn't find anything wrong. The lethargy, constant tiredness, headaches, not sleeping well, never feeling rested, constant pain throughout all quadrants of my body even though no injury had occurred, the sleepless leg syndrome, twitching in my left arm and hand, etc.....

I just recently had a back surgery to repair a degenerative and herniated L4/L5 disc. Most docs used these injuries to explain everything else that was going on with me (the, "it's all connected" theory). Well, turns out a fall on my hip 4 years ago damaged my iliosacral joint on my right side that caused the herniation, DDD, and slight scoliosis in my spine. It also explains why the surgery didn't help me at all and why my disc is herniated again just 7 months after the surgery. The doctor I've been seeing performed a series of tests using shots to isolate my pain and to rule out injuries and other such things. After confirming the IS joint injury, he then found that all 18 trigger points used to diagnose Fibro tested positive on me (now I know why those spots in my back, neck, shoulders, legs were always so sore to touch). I almost punched him a couple of times when he hit certain spots. Not fun.

Luckily, my family started eating strict Paleo over 2 years ago so I don't have any of the IBS symptoms, my weight is perfect, blood tests are great, CRP levels are under 1 (which leads me to believe the kidney theory causing the Fibro in my case - I only have one). Basically, I'm just left with excruciating pain that never lets up. The drugs I've been prescribed do very little for me. I won't even talk about the mental and monetary stress being placed on us due to my being unable to work or take care of our 7 month old twin girls.

One thing I keep coming across is how people with Fibro have a 'low threshold for pain'. Um, I don't buy that completely. I've had enough severe, real injuries to know that I can handle some good amount of pain. No need to detail that stuff here, but I'm sure many of us are familiar with the "wrap it up, ice it, and keep on skiing!" philosophy. I've done this twice with broken bones (not going to let a wrist fracture ruin my time in Whistler!). All I know is, this pain I've been dealing with day in and day out is real - and it is bad.

So, any advice? Anything I can look at to help me? The doc I'm seeing uses both western and eastern medical practices to rehab his patients. So far, the acupuncture isn't doing anything for me. The devils claw shots help for about 4 hours, but only in the joint it's injected in. I take magnesium malate daily, along with high quality vit K, fish oil, and D3.

(that took me 3 hours to compose... some days are better than others. Today, not so good, and my spine is killing me)

It's all in your head. You're basically fucked up.

Just kidding ....

I have fibro, as well. Got the diagnosis from my allergist/immunologist about 15 years ago. I used to get these bouts of aches, inability to sleep, etc. Thought it was the flu or something. Turns out I had trigger points, aches all over and fatigue. Problem was, I'd had this most of my life. People told me I was sickly when I was growing up. They were wrong. Fuck them.

Anyway, diet, magnesium along with malic acid, avoiding food sensitivities and getting enough sleep & exercise. Avoid Ambien as it will give you the munchies and you will gain weight. Try getting off caffeine. Take cat naps, plus get a good night's sleep.

The cycle is this: aches, so you don't sleep well, which makes you ache more, which wrecks your sleep, which makes you even achier, etc. You get the picture. It's a vicious cycle, which you have to break. Talk to an expert.

Also, exercise through your episodes. Avoid ballistic stuff like plyos or heavy lifting. Trauma is not good for the body with fibro and can trigger episodes. Stretching, moderate cardio, walking, skiing. Snowboarding is harder on the body, but if you're already good at it, give it a try.

So, regular sleep, sound nutrition and exercise.

It's not in your head.

technically it is in your head. Charles summed up well some of the management techniques. the notion that it is a lower threshold to pain is to simplictic, your ability to handle pain has nothing to do with it, its the receptors that are hypersensitive, and like anything else trained those pathways that are going to your brain are super efficient at signaling the pain cycle, your challenge now is how to best find what order of movement and other sytemic alterations will help to short circuit the signal. It is very real, but being a global nervous system dysfunction it is hard to objectify so most clinicians poo poo it. Everyone will have a variety of management techniques that work best, some will have benefit from aquatic exercise, a variety of soft tissue/bodywork, movement therapy (tai chi, feldenkrais, etc) all are trying to acheive the same goal, down regulate the sympathetic nervous drive that is adding to the hypersensativity of the receptors. best of luck DB, keep trying a variety of things, some episodes/exacerbations will respond to different inputs.

That sucks. I have a chronic uncurable disease as well and I don't know about you but finally getting diagnosed was a big relief. At least now you know what is really going on and can better manage your body. Don't give up. Make sure you make the changes necessary and follow a good doctors advice. Make sure you are seeing the best doctor or doctors around. Nothing wrong with other opinions. I have 2 docs monitoring the overall disease, another working with my sinuses and my GP keeping an eye on everyone.

What kingdom-tele and Flounder said. Good advice.

Sorry to hear, Flounder. Hope you can manage it.

My wife deals with it by diet, and exercise. She loves yoga and it seems to help her a lot. Good luck

Thanks for the posts, all. I'll re-read tomorrow and post a bit more thoughtfully. It's been a rough couple of days. Really appreciate the input!

My wife works in research on Fibromyalgia at Oregon Health Sciences University, particularly on the effects of exercise in managing symptoms. She led the research into the effects of exercise on uptake for Mestanon, and worked on clinical trials for Lyrica, a drug you may have seen advertised. She teaches exercise classes for this population and is on the board of the Fibromyalgia Information Foundation.

She just said that if you PM me with contact info she will reach out to help as best she can with ideas and resources. that offer goes out to DB as well as anyone else here.

Originally Posted by charles martel

I'd had this most of my life. People told me I was sickly when I was growing up. They were wrong. Fuck them.

As I mentioned, I'm positive I've been dealing with this for a long, long time too. I think back to basketball or football practices as a kid and always hurting, always being sore. Coaches and friends all just told me to play through it, basically insinuating that I was a wimp or pussy. You're right - fuck them. I've been wondering my whole life why it always took me so long to recover from workouts, why soreness never went away, why I always felt injured, why I was always tired. I know the pain/lack of sleep cycle all too well. Makes me wonder what could have been if I wasn't dealing with this (not a healthy exercise, but worth pondering for a day or two at least). I just think of the few days where I actually felt really, really good and what I did on those days. What if every day was like that? It is what it is, though, and I came to grips with it long ago.

best of luck DB, keep trying a variety of things, some episodes/exacerbations will respond to different inputs.

thanks kingdom-tele. It's going to be a struggle trying to find what works to alleviate any of the pain. I've been experimenting with different things for years, without much success. I know that my days of lifting weights are over. Even doing things such as pull-ups, pushups and sit-ups leave me sore for days, which just isn't normal. My bad back / Iliosacral joint isn't going to make this journey any easier, either. I am going to PT for that, but frankly, it hasn't done shit. I'm on my 4th therapist in the last 7 months, having tried a variety of different things. I'll keep plugging away, looking for the combination that may finally work, though. Thank you for your message.

That sucks. I have a chronic uncurable disease as well and I don't know about you but finally getting diagnosed was a big relief

Sorry to hear that Flounder. My best to you. It actually is a big relief to finally get a diagnosis. I can't say I've fully come to grips with the diagnosis. I'm not in denial by any means, but it's just brought back so many bad memories to the fore-front. Ways I've been treated by others and supposed friends due to being messed up. Being accused of being a liar or just seeking drugs or just lazy because it didn't look like anything was wrong with me. Many times, I didn't know how to answer questions such as, "well, what's wrong with you?" Just saying you're in pain doesn't cut it for many people, especially when some days are better than others. My friends just couldn't understand how I could be out ripping up the slopes one day, then be almost unable to walk or do much of anything for days afterwards. They physical pain has been horrible, but the mental antagonization has almost been worse. At times, it almost feels like I'm being ostracized. Going through all of this for so long really has hardened me, and I think is a big reason why I've been so independent for a big part of my life. I just had to learn to rely on myself, and struggle through to do what needed to be done.

My wife deals with it by diet, and exercise. She loves yoga and it seems to help her a lot. Good luck

My diet is dialed in and has been for some time. Exercise has been very tough for me because of the bad back. I may even need another surgery on it here soon. Yet, due to my diet, I haven't gained any weight and my vitals still all check out good. A strict Paleo diet is absolutely the best thing I have ever done for myself. Things would be so much worse if I were still eating a standard American diet. So much worse. I do plan on trying some yoga, as I do like it. Just need to find someone who is versed enough in the practice to help me work around and through my back problems. Not the easiest thing to do here in Germany, but I'm looking. Took me years to find a good doc, so I know I can find a good yoga instructor in time. Glad that this works for your wife!

telebobski - thank you so much to you and your wife for this offer. I will PM you my contact info here soon. My wife and I are desperately trying to get out of Germany and back to either Alaska or Oregon (I grew up in Oregon). We're just looking for a solid foundation to set for our girls so they can grow up in a strong community. They won't get that over here. Anyway, I have some friends that work at OHSU. I would love to learn anything I can about Fibro and need to start getting involved on message boards to learn as much as I can.


Again - thanks for the posts everyone. They all have really helped and I don't feel so alone with this anymore. I know Fibro is pretty rare in men, so thank you for not making me feel like a fool. A couple people I've told over here have been less than supportive. Seems everyone knows someone with Fibro but they have no clue what it's like to live with it. The misconceptions are quite astounding.

Today is the first day I've felt somewhat human in weeks. I've had a really bad flair in my jaw which has caused horrific headaches. I've never felt such pain - as if someone is ripping my teeth out with pliers and drilling inside my ear at the same time. My head has felt like it's been stuck in a vice with the crank slowly being turned. At night, if I lie on my side to help the pain in my spine, I can feel gravity pulling down on my skull, as if someone is stepping on my head with a size 15 jackboot. The pain is 10 times worse than when I actually had my jaw broken in half. It's unbelievable. Then, having the leg/shin pain like someone is trying to rip my tendons out and the back pain to boot.... It's been quite miserable. Yesterday, though, my GP gave me some muscle relaxants and started me on 25mg of Amineurin (Amitriptyline) and that may be helping. Of course, it's only been one day, but I'm holding out some hope. Heck, I may even go out and mow the lawn and take the dog for a short walk! Small potatoes for most, but it's a big thing for me lately! Slowly but surely.....I'll be back on the slopes again one day.

From happier days in Japan

DB - I forwarded your PM and contact info to my wife. Check your regular email.

FWIW, Ms TBS tells me the pain levels experienced by guys with Fibro tends to be way higher than for women.

It's gotta suck, but they are finding out more and more every day. Yoga, stretching and light weights have proven to be very helpful in maintaining some level of fitness.

Ask your doc about Lyrica if you haven't already.

Best of luck with this.

FWIW, my dad has fibro, and Lyrica has helped him a lot.