Hi, I'm a newbie to this board, and diagnosed with fibro this year after 30 years of suffering, and going to drs and drs and them thinking I'm crazy and trying to push their antidepressants on me as a cure-all. Thank God, I had the foresight to not go along with their diagnosis as I didn't agree with it, I just knew something else was wrong with me, something they couldn't discover from a blood test or a sleep test. What I know I have is the after effects of a virus assault on my body more than 30 years ago, my body that never recovered from the fatigue and pain of this virus, like it left it's "memory" internally in me, which has become fibromyalgia, as the virus is gone now. That's what I got left with. Try describing that to a dr., that really blows their mind b/c many do not believe in fibromyalgia, they think something else is wrong. Well, maybe something else is, so they do an elimination process before they say they don't find anything wrong. It's rare, rare, rare, for a dr to say yep fibromyalgia, they hesitate to give this diagnosis, even now.
Ok, so I have fibromyalgia, my body and mind racked by pain, and lately, I'm noticing a burning pain within my body occasionally, lasts for hours sometimes, and some days I don't get it. Sigh. I'm learning to deal with fibromyalgia b/c I want to be proactive to help my condition, and may be my story to help others as well.I look forward to chatting with others with this condition, and like to hear what others do to deal with the body aches/pain, brain fog, and unrefreshed sleep and what helps them with this syndrome. Thank you.
I have no idea grizz. I am in the same boat. I have lost all money to this condition chasing docs, instituting diets, exercise regimens, yoga, physical therapy, religion, following dreams and trying to make the most out of life. I began to notice these symptoms after Lyme Disease. That was 98. Sometimes I have good days. Other times I'm in a fetal position taking a hot bath with a throbbing head pain back pain and what I'd consider to feel almost flu like lightheadiness.
I will say that recently the single most effective thing I've ever tried that does not come with the hazards of the pills has been accupuncture. I feel cured the next couple of days. But it does revert to it's normal condition once the accupuncture is done.
I can just say this though about the accupuncture. For the last 14 years I have gotten out of bed every day and done my very best. I have exercised 3 times per week especially walking and jogging. I have really no ability to jog but I hunker through like Rocky Balboa anyways..... it's been about 10 years still though despite this exercise that' Ive been able to run a full mile..........but now the funny thing with the accupuncture is the day after I can exceed two miles consistently non-stop on the treadmill. My head feels clear and not dizzy. Something is working with this accupuncture. I also am taking a supplement called Kidney Mansion which helps with the phsycial symptoms of what could be anxiety but not sure.
Regarding Vitamins and Supps tell me what sypmtom you want to clear up and I can give you the vitamin. I struggle with the vitamins though because I need like 75 vitamins to clear all the symptoms....this would be impossible to do daily so what I do is take the basics, Vitamin D, Vitamin C, Vitamin B's?
On the drugs. Well technically I should use Savella but I tell my doctor it is the single worst most powerful drug I have ever seen. Can't believe they can give that out. I asked my doc joking for an alternative to savella and requested some heroin, coke and ecstasy and crack in the same pill. That'll make me feel better. Than I told him I am a better doctor than him with this condition and stop, stop, stop selling this stuff if you have any consicience. In a perfect world I'd sue him and put him out of business. That's my primary though and I understand he's a brick wall of ignorance when it comes to this condition lol.
Last edited by Administrator; 11-23-2012 at 09:17 PM.
Hello Bsimons, thanks so much for your reply, and seems we both got left with the devastation of a virus that has left us with fibromyalgia, and until lately (recent diagnosis which I had to fight to get finally) I could really not truly know what had happened to my health over the past 30 years, but absolutely trace it to a virus, never felt well since I got the virus, and now always seems like it's a constant "imprinted" sx of this virus in me forever, that the best descriptor I can come up w/to describe what I got left with: eeks, alot of pain, unrefreshed sleep, and brain fog. Yes, I do have the moments you describe, but mine comes after a deep tissue massage, but am absolutely going to check into accupuncture. How's your diet? I try, not sure if I should do the gluten free or just not eat lol. I could stand to lose about 15 lbs, but I do walk 2-3 x a week, love to do more. Ok,yours was in 98, and mine was in 1979, and you know back then drs hadn't a clue what I had, and I didn't either, so I don't know if I was good at describing what I now know to be fibromyalgia. Not heard of savella, but was given cymbalta and I only took 1 pill to know that it was not for me. You're going to laff, but the day I took the cymbalta I was so fuzzy, I left half my Chipotle order back at Chipotle's hee hee. I said no way to the dr when I went back. So massage works about 80% of the time to help me, so I don't have anything 100%, but this helps me. I'm always open to what fellow fibro sufferers have discovered and finds that works, b/c it might work for me too. The management of sx is always a juggling affair tho, and this stuff never goes away does it. I am going to look into accupuncture, is that where they stick needles in you??? ouch
Last edited by Administrator; 11-25-2012 at 08:49 AM.
I haven't tried the deep tissue massage at all but have wondered if that could help. Honestly I just do a ton of stuff and keep trying new things and now it's accupuncture and it seems to work. Afterall, before we had all these fancy pills which say "This drug is not to designed to cure any disease and may result in stroke, coma and death" we had accupuncture. It has been used for 1000's of years for a myriad of anti-inflammatory conditions and for anxiety which certainly comes hand in hand with this pain after years.... but shoot I feel that I could compare this disease it to almost every disease and as a result I think I've become a bit psychosamatic....ya know one day I think I have Chrones, Celiacs, Nerve Damage in my back, depression, anxiety, Ptsd or something. Gulf War Syndrome....even though I never was military or anything lol, multiple sclerois, diabetes, Lyme Disease, Liver Problems, Kidney Problem, Heart Problem, Back Problem, Neurological Problem, Endocrine Problem, post car accident symptoms, Reynauds, Cushings and the beat goes on... It never stops...lol. With all the symptoms ya can't help but think. I've tried to isolate these thoughts to a 10 minute window before bed....but I fall asleep before I make any progress lol....as far as the Cymbalta i've done the same stuff on meds like that. I'll show up to softball games without my cleats and glove.
The meds....ha....well they're a deathtrap simply put. I've tried painkillers and they seem way safer than the SNRI's but taking painkillers is just so dangerous.....i do take the xanaxevery couple days. .25 before bed. Not to fall asleep or anything like that but because it evens out cortisol, and relieves pain even for days. It clears the brain fog a bit as well...but again the short term memory is a side effect.
As far as the Gluten Diet. I lost 10 pounds on it. But I could not eat anything, had to go above and beyond to obtain foods and realistically it was extremely expensive and quite frankly miserable to not be able to eat any foods whatsoever. I also looked like a whacko a bit I think when I told my friends of the things I could eat and couldn't eat. I have been a health eater. I have always shopped at Trader Joes...prob last 6 years. My diet now is Reduced Carbs wherever possible, Reduced Sugar wherever possible but I make exceptions, Lots of Water, very very limited alchohol intake. Lots of fruits, veggies, and my accupuncturist says she wants me drinking Lemon Water. I make it into a tea. I also make Black Tea and Camomille Tea.
Last edited by Administrator; 11-25-2012 at 08:52 AM.
Well, some trapped toxins and poisons may be what's being released in the accupuncture tx I am thinking, much like what happens with deep tissue massage to help with this condition. Now what this condition is, I am like you, still wondering b/c there's nothing definitive about this, some labels, yes fibro, CFS, but no one agrees on this, yes, very complex, and everybody doesn't acquire this is the same way, I acquired it via a virus, but others have different stories like an accident or another illness, and I've heard ptsd too. So, a community of people with this "syndrome" we have and we wonder what we have, and here we are. So, I do know what you mean when you mention "Chrones, Celiacs, Nerve Damage in my back, depression, anxiety, Ptsd or something. Gulf War Syndrome....even though I never was military or anything lol, multiple sclerois, diabetes, Lyme Disease, Liver Problems, Kidney Problem, Heart Problem, Back Problem, Neurological Problem, Endocrine Problem, post car accident symptoms, Reynauds, Cushings and the beat goes on", and I read up on these things as well trying to find an answer, and there's no answer, and I am left wondering if I even know what I have too, so don't feel like the lone ranger, I'm sure so many others too. So comparing fibro to a myriad of these and other diseases, well what is it, no one seems to know, but I do too go through that long list too. What I have read is that this is not a disease, but a set of symptoms or as what I've heard it written a "syndrome". This "syndrome" is baffling, and once in a while takes a break for a day or 2, and that fools me, ok so that's what I learned this year to put this into perspective - I get frustrated with drs that bc I feel they do not really believe this is for real, this is NOT real to the medical community b/c it doesn't follow a traditional "disease" pattern that they studied in medical school and know how to treat, and doesn't show up in blood work only by what I say is hurting me, and that is met with suspicion that I must be there for drugs, although I never ask for anything other than a small 1mg dosage of xanax so I won't be off to the emergency room on a panic attack, and can calm myself down, so drs are uneasy with this whole mess I can tell. Now, when I go to a dr and try to discuss this openly, hoping that I have finally found a dr to help me, w/body aches, fatigue, unrefreshed sleep - I'm always met with a blank stare, no conversation past a few mumbled words, and I'm out of there with a prescription that I didn't ask for or want: guess what, antidepressants. I didn't say I was depressed, I am not depressed, but that's what drs give me. I know by now, there's "no cure", but could the drs at least read up on this or refer me to another dr who can have an honest dr to patient conversation about some possible treatments or a referral to some one who knows how to treat this. Grrr!
Now, you mention neurological, that is something that I currently do suspect this may possibly be about - a damaged nervous system, sort of the aftermath of the virus storm, i.e. why do you and I feel "normal" for a couple of days after accupuncture or deep tissue massage. It's a short normal, but it is a normal where our nervous system has been "soothed" or "refreshed" through manual manipulation of our bodies, through some type of touch, you know and I know it's temporary, but I do "buy" a normal day or 2 when I can; I have to in order to jump out of my pain for even just a day or two, and feel like other people do, enjoy my body, my life, even for a while, so that's why I suspect the neurological component to this condition.
Frustrated? yes I am. Like you still wondering and I pray for a cure for all of us. Someday they're going to figure this out. In the mean time, I will do the best I can to not give up and continue to explore all options.
Last edited by Administrator; 11-25-2012 at 08:57 AM.
I would go with the neurological theory too. I developed fibro after a major surgery on my spinal cord (the actual cord--inside the cord membrane). I think something happened to my stress response system following that.
I feel as though people have stress hormones released to balance them out and deal with stimuli...like exercise, weather changes, work, diet changes. But maybe ours are imbalanced. Whenever I have the slightest change in anything---even stretching, physical therapy, exercise, longer work hours, emotional stress, hormonal changes----my body responds with pain. I have pain all the time, but I flare badly when I have any type of stress or change.
I am also treated the same by the doctors...prescribed antidepressants for EVERYTHING.
Hi Chicabellarox, and thank you for posting about the stress response system. I looked online b/c I was not aware of this and I wanted to learn more. I read an excellent scientific article on it. Although quite wordy and lengthy, I found it full of important information. Here's the link http://www.biomedcentral.com/content/pdf/ar2146.pdf
I need go online and read about the adrenals. I'm doing my detective work, and if I do discover other nuggets that I feel might help us I will post here, and thank you for the stress response system, how attune you are, you are right, and what did you think how this is also interplays with the adrenals in our ANS? So maybe we are onto something that is well known in the medical community. Again, my frustration that I have to constantly be all over the internet to find out answers that I cannot obtain from my drs. And you mentioned a stress hormone I'm wondering if that interplays with the hypothalamic–pituitary adrenal axis the article mentions. Hmm.
Thanks so much for your post. I'm still trying to figure all this out, and probably the best minds have tried, but I sure don't get much information or conversation out of my drs on FM. Just blank looks and here's another script for antidepressants, which I throw away. I have to laugh at them because they call themselves doctors? HA!
Last edited by Administrator; 11-25-2012 at 09:56 PM.
Chica, I have the same issues as well - the slightly change in anything, as you said, and here comes the pain, and then after a deep tissue massage I'm right as rain for a day or 2, sigh. What do you do to calm your pain?
yeah just like everyone else i was diagnosed with fm and they put me on lyrica. lyrica wasnt worth it so i got off and i was taking 300mg a day. i also have nerve damage which im guessing is tied in with the fm. everyday i wake up numb hands and back pain and tension. i also have the tension in my legs which i bounce my leg all day to release the tension. then by lunch usually my middle back and shoulders are hurting so bad its all i can think about. and some things i cant do. for instance i cant get a job landscaping running a weedeater all day cuz my back will lock up. ive had other things happen like its really easy to sprain my neck which ive done twice this year. and i cannot put icy hot or similar products on my back as soon as i do it burns so bad i run to the shower. the fibrofog is kind of new to me as i only got it on the lyrica. but recently ive added a few more symptoms to my list like my leg going dead and increased nerve pain and fm pain and increased fatigue. the tiredness/fatigue has tripled at least in the last 2 months. i dream about an inversion table actually. not sure if it would work but i could only imagine.
Okay, lyrica doesn't work for you - what about a more "natural" treatment? Have you considered anything else? I'm on deep tissue massage 1/week, someone is having good results with acupuncture - not permanent relief, but I do notice that I AM starting to last longer in the good feeling in my body now that I have more regular "bodywork" done vs. just sporatically. And if you've read my previous posts, I live in Colorado so we have a lot of healing medical mj dispensaries - my secret weapon again fatigue, is the sativa THC. It also seems to have some mood properties to it along with some slight pain reduction. I don't take a lot of pills, perhaps occasionally I do, maybe once a month, as I've other things that help me more. Just some other things to consider as I've been very disappointed with the established medical status quo on how to treat FM, so I'm exploring alternative healing txs. An inversion table , oh awesome, I would love something like that, lol, make blood flow go the other way, confuse my pain a little lol. best wishes