Actually, the reason most allopathically trained MD’s branch out into studying complementary therapies has nothing to do with cures, which are actually darn rare in complementary medicine. We study them because we are searching for things which may provide some relief, when our evidence based medicine has not provided it for certain patients.
Seriously Massage Lady, there is no great conspiracy going on among we MD’s to hide the benefits of complementary treatments. But we do our best to educate people on the limitations of all our treatments- and that includes telling people when there is NO GOOD SCIENTIFIC EVIDENCE for a particular treatment, which is unfortunately true for many popular complementary therapies.
If you can’t be bothered to read the whole thing, here are the highlights (which oddly enough are identical to the info I have posted here previously.)
“Fibromyalgia is real. But the pain isn’t occurring because of damage or inflammation in muscles and joints. It’s the result of differences in the way the brain and spinal cord process and transmit pain.”
Re: evidence for fibro
"…brain imaging that allows you to look at the levels of …neurotransmitters. We’re particularly interested in glutamate, a neurotransmitter that increases pain transmission. He’s found that levels are higher in the brains of people with fibromyalgia. At the same time, patients have lower levels of neurotransmitters that reduce pain transmission, including norepinephrine and serotonin. …
One of the other big advances in the fibromyalgia field is the discovery that substance P and nerve growth factor — chemicals that increase pain transmission — are two to three times higher in the spinal fluid of fibromyalgia patients. All these imbalances may be responsible for their hypersensitivity."
So they can test our spinal fluid for a clear diagnosis. Likewise, these effects on the brain do seem to have a genetic/traumatic basis, like some of us have long speculated.
It’s not yeast, it’s not lymes, it’s not in our heads. :mad::mad::mad:
(Barring misdiagnosis of course.)
So far the only medical treatments revolve around ameliorating the symptoms of pain; however a holistic approach that also includes massage, tai chi, water exercise, stress reduction, cognitive behavioral therapy, etc has significant results in improving the quality of life for patients.
I never had mono and I can’t really remember a time when I didn’t have some fibro symptoms and/or highly sensitive to pain. I developed a high tolerance for pain (as in keep on keeping on no matter what) but bearing the pain is so exhausting whether it is pure fibro pain or additional pain from an injury. I think some people are just born to fibro. A lot may not have much trouble as children because as children we GENERALLY =) got more rest and had less stress than we do as adults. Probably in better shape too!
I know if I can get a LOT of rest all day when I need it (not just when I can or at night) it reduces the fibro symptoms a huge amount. I discovered that recovering from a shoulder surgery which was the first time I was “off” and able to rest whenever I felt tired in well my adult life! It just isn’t possible though working full time to get enough rest (for me). So the state felt sorry for me (and my coworkers) and Layed us all off! So I guess I will feel better in July (job ends june 30) even as I starve to death so the animals can eat!!!
[QUOTE=artisticgold;4716502]
Today I am seeing double and have a really funky headache and dizzy. Absolutely must be the lyrica…Sheesh, hope this goes away soon.
People that are on the Cymbalta, how does that help you with the nerve pain and fatigue???[/QUOTE]
Cymbalta has been fantastic. I do miss the loss of appetite that did go away though! I lost 10 lbs. the first month. (all came back) BUT I would never give it to a depressed person, the first week or two it can make you feel like jumping off a bridge (plus you may be walking around in a semi coma like state!). That did go away but now if I miss one I can get kind of gloomy and weepy but not jump off the bridge depressed.
[QUOTE=artisticgold;4716502]
Today I am seeing double and have a really funky headache and dizzy. Absolutely must be the lyrica…Sheesh, hope this goes away soon.
People that are on the Cymbalta, how does that help you with the nerve pain and fatigue???[/QUOTE]
I don’t find the cymbalta helps with the fatigue, wish it did. Thats why I take the provigil 100 mg. for the fatigue.
FYI, I have been on a new (to me) med for sleep with really good effects. I hated Ambien etc bc I felt hungover in the am. This is remeron, an anti depressant- at 15mg it knocks me out and lets me fall back to sleep as I wake up throughout the night- higher doses do NOT have this effect apperantly, which I like, for the KISS principle.
I’m totally waiting for someone to do spinal taps on other mammals (including horses) and see if they can find elevated substance p and norepinephrin (sp?). Then maybe some studies on foals to see if the accident prone ones do develop the changes in chemistry over time etc…
I am 17yrs old and was diagnosed with Fibro the beginning of this year, and both my mom and grandmom have it as well. Docs have been telling me for years that I’m crazy and its all in my head, or I am depressed or have anxiety. Nope, its Fibro.
I have been on Effexor XR for my “anxiety”, but it is also for Fibro, it helps a little but I still have really bad side effects so I have finally talked my mom into letting me get off of it. I’ve tryed Cymbalta as well, it made me just as sick or more than the Effexor XR does. So now my doc is going to see is Lyrca will help at all, at least with the pain.
How do you guys do this day in and day out? My mom and grandmom arent very much help in this regard whatsoever, because I ride and hope to go pro one day. I am so wiped out all the time, the only time the symptoms dont completely control my life is when I am on my horse, but they still do to some extent. I went to Walley World today and when I got home I could barely take groceries inside I was so weak and tired…I feel so helpless. Does anyone else feel like this at all?
Yeah. I have had symptoms since about age 16 and was not diagnosed until age 32.
I have been on Effexor XR for my “anxiety”, but it is also for Fibro, it helps a little but I still have really bad side effects so I have finally talked my mom into letting me get off of it. I’ve tryed Cymbalta as well, it made me just as sick or more than the Effexor XR does. So now my doc is going to see is Lyrca will help at all, at least with the pain.
Yeah, its pretty hard not to worry or be depressed when your energy is so low, everything hurts, all the tests are normal and no one believes you.
IME over the past 20 years, the drugs were not helpful for me. They are worth a try. But with 2 near fatal reactions to treatments, I am very cautious about trying anything new with drugs anymore. on bad days I make do with a little codeine( 5-15 mg) or a little amitryptyline (12.5-25 mg) for the muscle soreness and stiffness. I also use my hot tub daily, do pilates daily, walk about an hour or more a day to keep my energy up and ride as much as I can-even if its jsut an hour walking because I do not feel the pain once I am on the horse.
How do you guys do this day in and day out?
Well, the alternative is to give up and die isn’t it? There are better and worse days. I live for the better days, and tolerate and “get through” the bad ones. And you know, the other things in life make me very happy, now in my mid 50’s. Half the problem when you’re young is that everyone else can do more, while you have to listen to your body and do less. Now, over 50, most of my peers are slowing down. I am still doing what I did at 30. I finally fit in… because they have all slowed down.
My mom and grandmom arent very much help in this regard whatsoever, because I ride and hope to go pro one day. I am so wiped out all the time, the only time the symptoms dont completely control my life is when I am on my horse, but they still do to some extent.
You might revise your plans about going pro. I only got through medical school because I literally went to school and slept and that was it.
I went to Walley World today and when I got home I could barely take groceries inside I was so weak and tired…I feel so helpless. Does anyone else feel like this at all?
Shopping at walleyworld is probably bad for the planet…
Nutrition can make a big difference but you have to find out what works for you. I found that the more fresh veggies and lean meat protein I ate, and the less refined carbs I consumed, the better I felt, for the most part. I don’t know about your Walleyworld, but at ours, you can’t get fresh veggies or meat. But you can get plenty of refined carbs…
My upside is that I was told at 18 that I probably had a severe arthritis and would be lucky not to be in a wheelchair at this age. I do use a cane on bad days, but no wheelchair, so in a way I am lucky.
Good luck. Maybe in 40 years or so you’ll be advising others how to get through!
Thanks Cat :).
Yeah, I know what you guys are talking about with the “Bedjacket” pain, I have it every day. Does it go up the side of your head, make your ears hurt and up to your temples? It makes your arms, shoulders, neck, hands hurt too?
sometimes it hurts to brush my hair. The roots hurt.If I can lift my arms that far. but my episodes are considerabley less frequent than they were.
You are still at the stage where you should be pushing your doc to investigate and look for more treatable things like Lyme, etc.
Before the diagnosis was made for me, I used to push myself really hard. I got pneumonia 3 times in 3 years and was off for weeks each time, by burning the candle too long, as they say. But then, if you don’t push against the stiffness and pain to some degree, it doesn’t get better. Balance. Find a balance.
Hair falling out can be a sign of low protein. But yes, I shed constantly. It’s worse when my hair is long, because it’s more noticable, I suppose.
In other news…
Been researching the substance p issue. Looks like capsaicin actually reduces substance p in spinal fluid. Which is ironic, given the use of such preparations for producing excessive leg motion in certain shady equestrian competitions…
Anyone tried capsaicin supplements? Or will I have to :mad::mad::mad: and rub it on my skin?
I have been lurking on the boards for a while- I cannot say how happy I was to find this disscussion (minus the pissing match lol). I was diagnosed in '02 after many many wrong answers. My Aunt has fibro very severe & my mom, gran & another aunt have it also (though not as severe as my 1 aunt & I).
I have been reading this for 2 days (took me that long b/c I have bronchitus right now & kept passing out infront of the laptop lol- not complaining though, been getting some much needed rest)
I am finding it more & more difficult to get thru each day. I am a full time mom & college student (a late career change- i’m 34) and along w/ the 2 horses I also do rescue (mostly orphaned/injured deer, goats,ect… but have also bottle rasied 2 foals & 2 calves)
I Over the past year or so I have found myself wanting to sleep more & more, even going to sleep in my truck between classes, or for 15-20 min while i’m waiting for my son to get out of school. The funny thing is, as tired as I am I still have insomnia. I wake up all the time with the pain some of y’all have described (legs, shoulder, ect) & thought it was just from the mattress- kinda glad to know i’m not loosing my mind- although my other half, i feel thinks i’m crazy. He is a paramedic & i guess its the “I dont see anything so you must be fine” thing with him.
Mornings are the worst for me, it takes me forever to get going, & sometimes no matter how much coffee or B-complex I still cant get my motor running. Then there is the ‘fog’-- I had NO idea that this was associated with fibro!!! My son has dubbed it the “oh look a squirrel” syndrome lol-- it is horrible trying to stay focused on damn near everything, even watching TV (thank goodness for the DVR so i can rewind it as many times as needed to actually ‘get it’) or when someone is talking- lucky for me my friends know i’m prone to “squirrel” moments so they are ok when i “check back in” and ask for a re-cap LOL
I am currently taking Tramadol & have ben taking ADD meds as needed for the ADD (the Dr. never even made the connection between the ADD & fibro- go figure :-P) I usually take flexaril as well (havent had any strange side effects thank goodness) but need to get a refill on the flexaril. Since i ran out i have noticed a difference in my day-to-day functioning (or lack of)
as for riding-- not enuff time… but when i DO get to ride I do feel better, but as soon as i stop for a few days i feel like a train wreck. The ‘bed-jacket’ pain- i get that alot & am glad to know im not nuts- i’m not the only one whose head hurts when you brush it on some days. The evil place at the shoulder blades- yup. Migraines- yup
ok i am sorry for the rambling… Thank you to Penthilisea who started this!! And thank you to all of you for letting me know 1- im not alone & 2- i’m not imagining the pain, tiredness & “brain fog”!!
Hmm… do those of you with Fibro find you become ill more often than others?
I seem to find myself sick (and sometimes sick enough for the hospital) every month or so. It’s AWFUL. In October I was exhausted at a 2-week-long horse show and after working about two 14 hour days (as a groom and asst trainer, basically) my body just seemed to give up. I got sick very swiftly and within 24 hours was hospitalized for pneumonia. Ever since I’ve been scared to do much physically, or hang out at the barn, for more than a couple of hours, and been really afraid to push myself too much physically in any other activity.
I feel like I get a lot of respiratory infections and they seem to lurk around forever. My dr diagnosed me with a thyroid issue not too long ago but other than that I am healthy, with the exception of Fibro…
I just always feel knocked on my butt.
Just wondered if anyone else had this too, or if I just have a crap immune system
On another note, to whoever mentioned Savella, it stinks. I was on it for a good 2 mos and felt SO much worse, plus HORRIBLE, HORRIBLE headaches (I usually get headaches but I had 3-day migraines from hell) and incredible bodily pain. I took myself off it cold turkey because I just couldn’t handle it anymore.
I have, as of today, been formally diagnosed with fibromyalgia. The Dr. gave me Elavil— I read the insert/scare the crap out of you card, anyone have any anecdotal experience with it you’d like to share?
I have another med question for the board, when you change meds or doses for whatever reason, how do you decide when/if you are safe to ride? Does it remain a day to day decision, or do the fibro symptoms end up making the decision for you?
Riding keeps me flexible, moving and my mare was truly gifted at helping my depression. But say I increased my flexeril or changed antidepressants, how long a familiarization period do you give the new meds?
12 years after being diagnosed, and with a nightmare of a month for February I find myself needing more help than I have in a long time. All the med changes the doctor has suggested as possibilities make me wonder how I will react to them…
[QUOTE=EqTrainer;4647690]
Besides all the things I have broken, my appendix burst in an ER and I left and went to another hospital… when I had my kids, I had no meds…
you get the idea! We are very stoic.[/QUOTE]
I had galbladder surgery when 8 months preg. AND have had five kids… and a week after having kids rode horses.
Had a tubal preg. rupture 8 hours in er until diagnosed… after surgery - came home and HAD to clean horses stalls… They weren’t being done to my standards. HA HA.
I am a very active person. I love to get out and do things. But with this darn fibro… all I can say is - I AM TIRED OF BEING SICK ALL THE TIME!
I have been SO busy and haven’t had a chance to catch up on everyone here; but I will take some time to read to see how you all are doing.
[QUOTE=TimelyImpulse;4746327]
I have, as of today, been formally diagnosed with fibromyalgia. The Dr. gave me Elavil— I read the insert/scare the crap out of you card, anyone have any anecdotal experience with it you’d like to share? :([/QUOTE]
What dosage was prescribed? I have a friend that takes it and it helped her a lot. Me, it didn’t help. Welcome to the wonderful world of Fibro <scarcastic> Only time will tell if the med helps and if not you try another.
Elavil is one of the oldest tricyclic antidepresents, also effective for pain. Like all meds, when dealing with Fibro, works for some and not for others.
