1.5 Years Later: Taking Oxycodone for BFS

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melyssa221

Well-known member
well its been about a year and a half since i last posted. ive been on a sebatical free of bfs by taking oxycodone to treat bfs symptoms. there a good things and bad things to say about opiates. first of all,oxycodone basically eliminated my bfs (as long as i was taking it.) thats why for a year and a half i havent posted because in part i was able to live a normal life free of bfs.. i lived with alot of pain in my legs from the knees down especially in my feet ankles thats why i choose to take a painkiller. little did i know it would it would basically eliminate the pelting hail storm of nerve activity... i dont know what you want to call it ?? parasthesia?? globus sensation?? i can decribe my nerve activity in many different ways.... most common buzzing, electrical rain showers, worms crawling through the muscles, frizzle frying bacon under the skin, pops and muscle farts, water drops or ant like crawlings across the feet. opiates i would say is good for short term use,, the bad thing is your body becomes physically dependent on the drug. so basically your tied down to the drug like a ball and chain,, stopping would cause unplesent withdraw symptoms. as far people taking opiates to get high i dont get it. if i was to get high i can think of better things but anyway.... last october i stopped taking oxycodone. it was back to basic bfs... the pain in my legs was the worse... i felt so bad because i just wanted to lay on the couch with a cold blanket around my legs to ease the pain while my 1 year old son was running ramped around the house.. i felt bad cas it was hard to play with him... the nerve activity was back and it was like coming down with bfs again for the first time... its been so long since ive felt these symptoms so i was always thinking what the hell is this??? this illness?? is it just going to get worse as i age?? all the thoughts we always have when bfs gets the best of us. i wish people could understand more but its impossible besides the visable twitching we look normal but inside we struggle with the stirring nerve activity and the thoughts that come with it. last december i got back on the painkillers this time hydrocodone-apap 325/1010mg did well for the pain but i still had the nerve activity full force which is weird,,, becuase every opiate type med i took tramadol,oxycodone, darvon would work good on the nerve activity. so i tried 20mg and bam the pain and nerve activity eliminated. i found that 15mg hydrocodone works well and i try to keep it there. i found that hydrocodone doesnt have the ups and downs like oxycodone which is good but not as effective as oxycodone.anybody out there have any benifits from opiates?if anybody is thinking of trying opiate treatment i would say try tramadol first and see if you get good results.i found some thing here that may explain why opiates work good for peripheral nerve hyper-excitabilyOPIOIDS CLOSE N-TYPE VOLTAGE-OPERATED CALCIUM CHANNELS AND OPEN CALCIUM-DEPENDENT INWARDLY RECTIFYING POTASSIUM CHANNELS.THIS RESULTS IN IN HYPERPOLARIZATION AND REDUCED NEURONAL EXCITABILITY.thanks -- Aaron
 
Thanks for your post. I too need to take something for the symptoms just to get through the day. I take Klonopin which I remember you took as well. I have never taken opiods but I'm glad to know they have been effective for you if I need to go there. Klonopin does have a positive benefit especially for getting through the night but it does not eliminate the issues by any means.Krackersones
 
Hello 12Drifter12.I am so glad to see your posting! To see you around!You probably don't remember me, or maybe you do, but we PMd a little bit about various meds.I take 200 mgs tegretol x3. It seems to dramatically decrease my twitching. The neurologist is willing to let me take it for 12 months and then taper off. He tells me the maximum benefit is reached in 12 months. That will be May.I still twtich under tegretol. Just not so much. Or maybe it is just my nerves healing. I had a herniated disk operated on 4/30/2004. Wow. Almost 5 years ago. To this day, I slowly, painfully slowly, slowly, get sensation back in my foot. So I figure mine is nerve damage.I don't know much about opiods. But I am very happy to see you.After a while most vetrans drop off, or lurke, sometimes I don't sign in for a few weeks myself. But when I do it is nice to see someone I remember.Take care.-43RichyThe43rd
 
Aaron,Could you review some of your basic personal info. How old are you and what kind of job/daily routine did you have to mananage on opiods? I feel I may eventually have to try something like that if my Klonopin loses effectiveness and what to know how easily one can function on opiod meds. I am a female 37 year-old school teacher. I leave the house at 6:00 am and return around 5:30 after a full day of teaching and tutoring students after school.Krackersones
 
i am 36 years old and i work full time in the housing market.. which is a bad place to be since the housing market is down and so many people got layed off at my job.. im at the point where i want to do something i enjoy. im waiting on some info to go to college and persue couses in medical assisting.. i want to work in healthcare because i myself living with an illness want to help others.. i know i would enjoy doing that kind of work.. i know ill probably never be a doctor but working in healthcare as an assistant is enough to make me happy. ive had bfs for 6 years now. ive taken a wide variety of drugs to treat bfs.. mostly benzodiazepines.. i took neurontin, lyrica, klonopin, valium, ativan, xanax, ambien, requip, ultram, darvon, codiene, oxycodone, oxycontin, darvon, and hydrocodone to treat bfs symptoms. the top 2 worse symptoms for me is pain and nerve activity. i can deal pretty well with the rest of bfs symptoms but the pain and nerve activity causes a little impairment in my life.. the difference between pain and no pain is huge. when my legs hurt i spend alot of time on the couch and taking hot baths.. being out of pain enables me to play more with my son, go for walks and function normally. the nerve activity is very bothersome because it can be so intense that it makes life unplesant. its always pelting me never stopping.. i just want to feel normal like everyone else.. nerve activity leaves me with alot of unanswered questions.. what the hell is going on?? trying to go to sleep and feeling the activity racks my mind and causes insomnia. the pain in my legs drove me to the doctor.. i was prescribed tramadol/ultram which is considered an opiate but non-narcotic. which makes no sense but in the sense that most people dont end up abusing tramadol is what i found out by reading up on it. i took 100mg not only did the pain go away but the nerve activity was gone. i swear i sat on the floor and watched my calves for hours.. no twitching??? i tried to induce twitching by slapping my calves and doing everything to pump out a twitch..nothing. i couldnt believe it i though i was cured! but of course i woke up the next morning and was let down by good old bfs. i started to take oxycodone some time later because tramadol for me gave me so much nausea. i started taking oxycodone sometime in spring of 2007 and stopped taking it in october of 2008. i would say oxycodone works superior to any other pain med for bfs.. the thing is after a while your body builds a tolerance and along with that your body is physically dependent on it. so if you dont take your meds you start to have opiate withdraw symptoms.. toward the end of taking oxycodone i would start having early signs of withdraw before my next dose... before my next dose i would get a hot flash and sweat and feel the feelings of the drug withdrawing... i was miserable.. i had to keep taking the drug.. i was worse in the morning when i would wake up restless and withdrawlike and get ready for work... i would take my dose and jump in the shower.. got out of the shower and just sat there with a towel around my body waiting to feel "normal".. around august i had enough and i tappered down for 2 months then bit the bullet and went through withdraw for 2 days with no drug. finally i had to go back to work so i took tramadol to help the pain and withdraw and tappered from there.. which got easier and easier and finally the day before the election i took my last dose and was free from the grip of opiates... i went for 3 weeks with nothing but my diazepam for sleep... i was trying requip for bfs at this time... the pain and nervre activity was back,,,, it came to the point where the pain and bfs left me exhausted so i went to the doctor and got norco( which is hydrocodone and tylenol) ive been on it for about three months now and it works good.. it works good on the pain but not so well on the nervre activity but i was just happy i was out of pain and could function.. i discovered that 20mg of hydrocodone does very good for pain and just good on the nerve activity,,, but i just try to take a pill and a half about every 5 to 6 hours which is 15mg hydrocodone,, and it works well,, but not as well as oxycodone. the thing i like about hydrocodone more than oxycodone is that it doesnt have the ups and downs.. its just more a normal path through the pain and nerve activity.so the question about opiate you asked was how does it effect your abilty to function?i guess its different for everyone.. for me it just has a little anti-depressant effect.. it keeps me awake and alert,,, but ive watched shows like intervention where the person was smoking a cigarette and falling asleep while talking which i find is weird because it never done that to me,,, but they must have ODed on massive amounts of it probablly.. my advise if you are going to try start on and opiate start with tramadol and see how it works...if you take oxycodone just be careful... its works very well but youll find that your body will require you to take it after long term use or face unplesant withdraw symptoms.opiates never made me tired or sedated which it says it will do.. it did the opposite for me or maybe i was so happy i didnt have bfs symptoms and could live a normal life.. play with my kid and go for walks,, being carfree with no thoughts of bfs..in part the reason i was gone so long from this board.. i was normal once again.. now im just somewhat normal and thats fine.aaron
 
Thanks for your very thorough response. I so relate to constantly wondering what is going on with all the nerve activity and just wanting to feel normal. My doctor just says, "your nerves are firing when the should be quiet and I don't know what caused it." He thinks maybe it's an immune system issue. He says I dont' fit neatly into any of the typical syndrome/disease categories. He thinks there is a upside to this because a lot of those categories are not so good. I hope you reach your goal of working in medicine soon. The compassion you will bring from your struggles with bfs will be invaluable to many patients. I get a lot of personal satisfaction from my job too and it goes a long way in helping deal with my pain/discomfort and uncertain health.
 
there are many causes to bfs.. so far the evidence points to a glich or an antibody in the potassium channels... so it makes sense when your sodium calcium and potasium channels are not in an even flow or equilibrium you misfire like a car when the spark plugs are not connected right.... at the end of my first post the definition of opiates it says that...opioids inwardly rectify potassium channels. this to me makes sense that when i was on a stong opiate like oxycodone it balanced out my peripheral nervous system making me free of nerve activity and pain.. although i had fasciculations still they were greatly reduced to just a few here and there.. i look at my calves and feet now i at least have about 15 per minute and roaming fasciculations in other parts of the body. when i was off opiates i probably had 100 fasciculations per minute just in the calves and feet.. back when i was on oxycodone i had no fasciculations above the knee and below the knee i would really had to hunt the fascics down....even though opiates may not be the best thing for everyone i believe they are very medicinal for bfs and should be more looked into than using benzodiazepine treatments especially when pain is involved.opiates are easy to take but very hard to get off of. so keep that in mind.. and good luck
 
I will take the opiod info you provided about potassium channels and your personal experience to my doctor. When a medicine works it does shed some light on the cause and this fact is worth documenting. Krackersones
 
I stumbled upon pain killers for BFS symptoms, I was taking some vicadon after a surgery and noticed my BFS symptoms quieted down quite a bit. I went to my GP to talk about it, and he agreed to put me on the Oxycodone and see what happens. It has worked wonders, I take 20mg first thing in the am and 20mg around 2pm. It has been the only thing that has worked to bring some relief. For me the impact is very suttle, I do not get any sort of high or anything like that, but eases the pain and all the pins and needles, crawly sensations etc. I have been on it for about 3 months, I did run out once and abruptly stopped for a few days and the withdraws were pretty bad. I do not believe you mentioned how much Oxycodone you were taking?
 
i was taking 20mg of oxycodone 4 times a day... it seemed that oxycodone at the 20mg mark works very well anything less has little effect... i took oxycontin 40mg tablets 3 times a day and that worked way more superior,, it didnt have the ups and downs.. just a nice evenflow.
 
Hey guys. I'll just throw a couple of things out. Hydrocodone is sold mixed with Tylenol (that's what the APAP is). It isn't considered generally safe to take more than 4000 mg. a day as Tylenol is toxic to your liver. I would be concerned about long-term use even at that level. Not much more than twice that is emergency-room dangerous, as in liver failure (which can kill you).Hydrocodone definitely makes you feel better about things! (That's what opioids do.) It can help with twitching, too, but God help you when you try to get off it. You think you have twitching and anxiety now? Also, your body is probably going to get used to it, and what it did for you at the beginning might not be enough later on. Not to sound like the Drug Nazi, and I don't begrudge anyone any relief, but I would respectfully invite people to consider whether opioid therapy is the best course.Good luck.
 
occasins is so right. Oxy is one of the most abused drugs in the USA right now, the addiction happens fast , and withdrawl is horrible. This is a step to be taken with much caution. Even though the doctors give it out like candy, I would avoid at all costs. Sorry if this sounds judgemental, its just that I know quite a few recovering addicts. good luck .
 
i only take about 6 tabs of hydrocodone-apap 325/10 ... so 325mg of apap each pill would be 1950mg of apap a day which is half of the 4000mg per day limit.... i was taking about oxycodone alone i was taking 20mg 4 times a day (no apap).. anyway i am still conserned about my liver at that amount anyway so i probably wont take it long term,,,, im seeing the doctor saturday, going to ask for a liver function test...i agree with everyone.. oxycodone is so easy to take and yes it really abolishes bfs symptoms.. but please be cafeful its so hard to tapper off of and you will eventually have to face that because you will build a tolerance,, believe me i went through withdraw. it was the worst hell ive ever been through.. if you take oxycodone be sure to have a plan... when tolerance is built,, tapper off with hydrocodone-apap.. the apap will make it easier.. then tapper to a weak opiate like darvon or tramadol.. i didnt do that.. i just stopped and found out how cruel withdraw is..opiate therapy will give you a good year free of bfs.. tolerance for me built in in about a year.. my dose had to be raised.. then 6 months later tolerance was there again thats when i decieded to climb down the latter then up.good comes with the bad.. just keep that in mind.. opiates have high medicinal purposes. its in your hands to use it safely
 
What are the dangers of long term use of opiods (without Tylenol) even if you have to increase the dose? I've never taken them except for a day or two following surgery etc. I take Klonopin and it certainly does not give me any type of high. I think when a drug reduces real symptoms all you feel is normal but nothing above that. I am allergic to asprin and ibuprophen (ended up in ER with a swelling tongue and bodywide hives) so any type of standard pain has to be dealt with using Tylenol and now Klonopin (only helps with muscle tension/twitching).When you withdraw from the opiods, can you be checked in as an inpatient and can they do anything for you to ease you through the few days of agony? I seem to have heard about this with those that abuse it recreationally but what about people who really need it to stay employed and living life because of actual neurological problems.
 
taking opiates with no tylenol is actually safe and easy for the body to process. opiates bind to opiate receptors in the brain and spinal cord. withraw syndrome from opiates is considered safe.. it can raise blood pressure though.... withdraw from benzodiazepines like klonopin is considered dangerous at least from what i read,, opiate withdraw is a painful expierance,, worse than the flu but it CANT kill you. it is so important to taper off so you dont expierance such a painful withdraw.... when you stop..the opiates leave your receptors empty and it takes time for your body build up your own natural dopamine.. this can take a long time,,,, months. you can go to an outpaintent to take suboxone or methadone. the problem is your just jumping from one opiate to another.. as far as taking opiates for a neurological disorder is fine.. it would be against the law for your work to fire you for taking medicine... there was a case where a company fired an employee for using methadone to control pain.. well the employee filed a lawsuit and won.. i believe you should keep your opiate therapy between you and your doctor.. employers may frown upon it and may not hire you in the pre employment drug screen. they may get around it by using another excuse against you. when i applied for my job i had to list the prescriptions i was taking.. i put oxycodone and diazepam... took my drug test and still got hired.. painkillers are medicinal medicines and there is nothing wrong with suffering less... american society just frowns on oxycodone because kids just take it to get high.... as long as you take your medicine responsibily you should have no problems,, it should have no effect on your preformance at your workplace... youll probably be more energetic because your out of pain and the nerve activity will be gone..... just keep in mind once your on it your on it like a ball and chain. just have a taper plan to discuss with your doctor because you will build a tolerance to it.. the only way to get rid of it is to take a higher dose,, just dont let your dose get to high.. i would say once your at 80mg a day its time to start planning to taper.. you dont want to climb to high up the latter its not worth it.aaron
 
Hey Aron, how nice to hear from you! Not posted for a year or so myself and was just having a look and there you were!I'm still twitching away, must be about 14 years now for me. I find a glass or two of red wine helps!All the best,Diego4Life
 

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