I compiled a list of the latest treatment plans from many CFS/Fibro experts and posted them on my website. Here's the link.... I hope you will find the information to be helpful:
thank you very much...i will def check this out!
Yes both Lyrica and Nuerontin are the same med. They are both anti-seizure, however they are used for many other things.
I have been on Lyrica and Nuerontin both. I personally like Nuerontin better, however this is a personal choice. They basically have the same side effects, but I don't notice them as enough with the Nuerontin, however trust me that is me.
What helps CFS and fibro patients, for that matter, are supplements. Unfortunately, very few physicians know anything about supplementation and nutrition. So CFS patients are often told by their primary care physician that we need to find another physician, preferably one who practices in alternative medicine. At least with fibro patients there are prescriptions now available, but I also believe that supplements and alternative medicine are very important for people who have fibromyaglia. I know the leading CFS/fibro experts seem to agree.
I agree with the Neurontin as a better choice- it's cheaper too. Lyricia made me gain weight, but everyone's different, so it may help you.
As for treating flare ups- rest. That's the only thing that you can do. There is no pill that will take away the flare. You really have to track your symptoms and when you do have a flare, write down what you did, what you ate, or asy stresses, etc. That way you can do much to try to control the flare triggers. I noticed that vaccuming cause me to flare up- so I delegated that task to my husband- (lucky me)! Also toxic cleaning products would cause me so much fatigue that I would have to lay down in the middle of cleaning. Nutrasweet products are a big flare for me, so I use splenda sweeteners. You basically need to pay attention to your body and take notes, you'll be surprised what flares you up.
thank you so much for your input, much appreciated!! i am still in the "learning process" (early stages i should say) my only REAL concern is, i would really like to find a medicine for pain that you dont have to take all the time, a med that you take only when your in pain...but sadly i havent heard of any yet, well, nothing that isnt addictive anyway, and i can not take anything addictive. and i have been told that with lyrcia or neurontin that it is an every day med...but i am going to give it a try, i havent heard anything too negative about it (except weight gain with either one)...so i will tell my doc at my next appointment that i am willing to give the neurontin a try...thanks again for your help with this.
i do take a multi vitamin daily but are there any specifically tailored to help fibro sufferers?
also i suffer from severe depression on occasion...i am almost always depressed, but the severity seems to come and go, also social anxiety disorder, which has led to panic attacks in public (how embarrassing...) which has in turn developed into agoraphobia. i am also a recovering addict so i am still trying to sort through all of this and trying to figure out what is caused from my fibro and what is caused from my previous addiction...not an easy task.
my current daily meds as of now are 60 mgs of cymbalta, .5 mgs of klonipin twice a day and 12 mgs of suboxone for my addiction...which i was also told would help my pain...it does a little...but does nothing for the flares...will the neurontin help the flares also?
also...anything else that you could share on depression, anxiety, panic etc...would be great also. fatigue and sleep disturbances seem to be a way of life for me now too...any ideas?
thank you all so much...it is really appreciated...right now i need all the advice i can get...and the best place to get it is from people with the experience, this i know...
Did you start getting the anxiety after your fibromyalgia diagnosis ? (just curious) I know that sometimes these conditions have an effect on your hormones and I swear that this can contribute or even cause your anxiety issues. I never had anxiety until I had CFS. Some mornings I wake up restless but most mornings I am fine.... I have no clue why. So what are you thinking when you have panic attacks ? You may want to work with a therapist who can help you with exercises such as meditation and working on controlling your thoughts, etc. Supplements might also help you.
i have always had a little bit of anxiety...manageable though. the anxiety got real bad after i stopped my addiction, in may of this year. and then the anxiety kind of progressed into the panic and agoraphobia. but i was also diagnosed with fibro at around the same time...so who really knows...LOL!
when i am having a panic attack, i am feeling the need to escape, get out of wherever it is that i am, hyperventilating starts and this is what is embarrassing. i get a closed in claustrophobic feeling just buying a loaf of bread at the local grocery store...thats when i bolt home swearing to never leave again. but eventually i will try again out of necessity...and yes i am in therapy, but thinking its just not aggressive enough for me....
which supplements would you recommend?
thank you for your help and your support....
Do you take magnesium supplements? Magnesium and calcium will help anxiety. Magnesium will also help muscle spasms and incontinence. You have to take at least 500 mg of mag, and 1000mg of calcium. I haven't tried malic acid yet, but I read studies that indicates that it's helpful for pain also.
I take melatonin for sleep. I had a Dr. put me on trazodone which helped me sleep, but it caused toxicity and made my symptoms worse. Also sleep meds are addictive so it's best to stay away from them. But melatonin helps me and when really bad I add valerarin. It would be helpful to purchase a Natural Health book. I like Prescriptions for Natural Healing. Plus they can help you find a good one at the health food store. Also I've recently gotten into aromatherapy. I find that massage oils containing lavender, ylang ylang, and other relaxing oils are extremely helpful in helping you to relax before going to bed.
You'll be surprised how many symptoms are relieved by natural remedies.
I have a brother that's a recovering addict, and I feel for you trying to manage fibro without addictive meds. I have had fibro for 6 years and not once had to take an addictive med to manage my symptoms. So it is possible and keep challenging your doctors to prescribe things that are non addictive.
In addition to what Rhanithomas wrote, I would also suggest that you talk to you physician about getting B12 shots. They also sell B12 liquid drops at Walgreens. Vitamin B12 deficiency can result in depression / anxiety. The vitamin B 12 tablets are very difficult to absorb and a waste of money. I think you should also ask your physician about taking B6, thiamine and folic acid. Online you can visit Pro Health's website (google it and you will find it right away). The founder of Pro Health has CFS and his company sells nutritional supplements and many of them are created for people who have CFS and fibromyaglia. To date, his company has donated over $2.61 million to CFS and fibromyalgia causes.
Excuse my poor grammar. I think it is the brain-fog and I also just woke up !
Have you had any blood work done? I have heard that we are depleted of Vitimin B- they can run blood work for this and then your Doc can recommend what type of B he wants you to be on. I take a super B complex everyday but am going to have my levels checked in FEb. This will also be my first chance to have other blood work done to rule out son many other things. I have never had any blood work done to rule out any other diseases like multiple scloris or lumpus(ms) or any other disease that may mimick fibor....that will all happen next month....
You may want to google, "New Study Links Fibromyalgia and Chronic Fatigue Syndrome to Low Vitamin B12 and High Homocyteine in Cerebrospinal Fluid"
ARRGGG ! Why do I keep posting twice ??????
no i dont take anything for supplements, just a multi vitamin...should i add magnesium and calcium along with the multi vit.?
could the klonipin that i am taking be causing toxicity in me? would this be enough to cause a flare? see, thats why i need your experience, from all of you, i have SOOOO much to learn...i remember reading about toxicity...but guess i would have never really thought of it concerning my current meds...
i was told by my doctor that cymbalta is good for fibro sufferers, which is why i take that? any thoughts?
oh how i would love to drop the klonipin and try the natural remedies...i really dont like the fact that as an addict that i am on an addictive med... i take nothing for the sleep at night...i have no problems falling asleep...its staying asleep that kills me...i wake up about every 2 hours...UGH!!
i have been thinking of tapering off my klonipin so i can see if the anxiety is still there or if it has gotten better...the only way to know this is to try...
and yes, i do challenge my doctor...which is why i am here...she has wanted to put me on neurontin for months now...but i said no, not until i research it every way possible and make sure i am not getting myself into trouble again...i simply cant and wont do it again. at the time i submitted to the klonipin...i had gotten so bad i had to do something drastic and quick, and i was aware of the consequences, but i hope by staying on such a low dose, that i will be ok coming off it...
and NO...i do not want any more addictive drugs...which is why i have basically just been suffering on through the flares and pain because i am now afraid of pills that are for pain. already been there. done that...i would rather feel pain than take another addictive med.
thank you so much for your input i appreciate it greatly...
so i should be taking these supplement in addition to my multi vitamin?
i found the site you were referring to...thank you, i will check it out.
yes, i have had blood work done...exscuse me if i am wrong about the name of the test i had, but i had the ANA (?)test for lupus, which was negative.
it seems the b vitamins are essential for a lot of things...they are supposed to be good for people in recovery also...thank you for your suggestions...
Good news. Dr. Paul Cheney and another physician (can't think of his name right now) say that klonopin is not addictive.
(myth # 2)
fms is for me everchanging and so are my meds. my dr tells me when i am nothurting so bad to decrease pain meds i take ultram, recently added darvocet ultram just wasnt enough by itself . your body gets used to one and sometimes need changing. i have been taking lryica since last june which really helped in my tingling legs the sharp stabbing pain i would get in my legs and toes. dr took me off it about 3 weeks ago because i was having a mri, not sure what that was about. but since i have been off i have had clearer thinkng- my legs dont jerk anymore . i wiill stay off it untiil ihave to deal with those pains again. i would love not to take all these pills. i also take cymbalta, elavil, and flexril. i also take b12 drops under tongue(walmart) also take magnesium.i do go to massage therapy which helps especially when i am real bad she does the lymph node drainage i can tell when i am swolen and this flush the toxins out. just so many things i would like to find dr to help not just push pain meds.been reading about a fms center in dallas- its the closest to me. found them on web theytreat you holistic deal with whole body. just keep faith and dont overdo it on a good day i do that and then pay for days!
On my post I put vitaimnB and it should have been vitD. i am so sorry for the mistake.....
klonipin isnt addictive??? are these doctors serious? you must be pulling my leg, right..this is a joke, right?
i am on the addiction forum here everyday...klonipin is in a class of drugs called benzodiazapenes...and benzos are the #2 most commonly abused and addictive drug on the forum??? i have an older lady friend that i used to talk to often...well not anymore, she had a stroke trying to cold turkey off klonipin, her daughter contacted me to tell me, and i havent heard from her since....seizures and death can happen when trying to quit if not done properly under doctors supervision...
i think you were being sarcastic...i HOPE you were anyway...LOL!
I was going to post that klonipin is addictive. Glad you know that already and didn't get mislead. Platelet is one of the experienced people on this forum and knows a ton about cfs and fm. I can tell you from a number of months of posting that she wasn't trying to pull your leg or be saractic and was trying to be helpful. (Although I'm sure she can speak for herself).
The doctor she referenced is one of the national experts in CFS. In looking at the article, a couple things become apparent. Dr. Cheney is talking about using neroutin for cfs and fm. Those patients (us) are notoriously sensitive to medication, and almost always use much lower doses than the norm, so he experiences with patients may very well be different than the norm. He tends to get tough cases that haven't been helped elsewhere so they may be more sensitive than the norm. Also, he's distingishing addicition from 1. habituating and 2. from required gradual removal.
There's some argument to be made with his point, but overall it does make sense and it's too far off the mark. Also, I read the posts on the additiction forum because of a personal reason, and was impressed by the power of this drug. What he says is:
"Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves: (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.
Dr. Cheney said a case might be made that Klonopin is habituating. It’s true that it can’t be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction. "
The rest of the article is fulled with information that's quite interesting and extremely detailed about how it all works, so it may be worth a read even if you disagree with this part. Over the years (I've had cfs a long time), I've found sometimes I agree and use Dr. Cheney's info and sometimes I don't. He tends to explore more than many of the other doctors. (He also charges an arm and a leg, so I haven't opted to see him.)
Thanks for posting the question though. I saw some ideas I hadn't thought about it a while that I might try.
I meant to say
"There's some argument to be made with his point, but overall it does make sense and it's NOT too far off the mark."
Also I read the klonipin posts on the addiction forum specifically over time.
Glad to see you are past the addiction problems and saying with it. Hope you find some good info here!