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08-10-2012, 02:52 AM #1
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)
08-10-2012, 04:30 AM #2Registered User
- Join Date
- Oct 2009
- Upstate NY
Ah, firbro ....
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.
08-10-2012, 05:49 AM #3Registered User
- Join Date
- Apr 2009
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.
08-10-2012, 05:55 AM #4Registered User
- Join Date
- Sep 2011
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.
08-10-2012, 05:32 PM #5Registered User
- Join Date
- Oct 2009
- Upstate NY
What kingdom-tele and Flounder said. Good advice.
Sorry to hear, Flounder. Hope you can manage it.
08-11-2012, 01:12 PM #6
My wife deals with it by diet, and exercise. She loves yoga and it seems to help her a lot. Good luckYou are the mission Bob.
08-12-2012, 01:27 AM #7
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!
08-12-2012, 02:28 PM #8
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.
08-14-2012, 02:51 AM #9
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
My wife deals with it by diet, and exercise. She loves yoga and it seems to help her a lot. Good luck
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
08-14-2012, 11:23 AM #10
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.
08-14-2012, 12:07 PM #11
FWIW, my dad has fibro, and Lyrica has helped him a lot.Looking California, feeling Minnesota.