Skip to content
Don't know what to do...I am scared about my future.
avatar
Pookie7lee posted:
I have suffered with Fibro going on 15-16yrs.I have taken every medication that is specifically for fibro and I have suffered really bad side efffects including seizures.It is my medical records that I am not to take fibro meds because of the side effects.So I have been treated with pain meds because that is my only other option that actually works.I have been pain meds only for about 10yrs and my body is becoming more immune to them in short periods of time.I have been put on percocet 7.5mg for over a year and half now and it is barely working.I have discussed this with my dr who tells me that she doesn't want to up my dose or change me to a stronger med because of my age (I am 31).When I called for my refills I had the nurse called me back to inform me that they are lowering my script amt(reducing the amount of pills I receive/mth)and that she wants to start tapering me down until I am completely off narcotics.If I didnt have to take narcotics and that Fibro meds actually worked for me w/out the side effects and the seizures and the fact that half of the others don't work at all for me i would be more than happy to.I have two kids and there is NO WAY i would be able to function in life and take care of my family without the pain meds.Even with what I am taking right now doesn't completely help its working less and less.It's going to be over a month and a half before I can get into see her but she made this decision without talking to me about it or with any kind of an explanation.My guess is that all the actual drug addicts that fake medical conditions(that they get the syptoms off the internet and know exactly what to say to the dr's to get narcotics)are ruining it for those of us that really actually have medical conditions and need them All I know is even on the meds I'm on right now there are days that I cannot even get out of bed or I have to have family help me with my kids and house work because I am in so much pain.What am I suppose to do when they taper me off my meds completely?How do you live a normal functional life with fibro without any kind of treatment.I am not a pill popper and I am not someone that fakes being sick to get drugs.I have suffered with this since I was 15yrs old so how can they say that I am only doing this for the drugs?All the co-pays and the cost of the ins.if I was really doing it I could spend a lot less just buying them off the streets.I am just scared to death right now on how my life is going to be with being in so much pain and having such a hard time functioning and being able to take care of my family and everyday life without any treatment at all for my pain.Like I stated before even with the percocet 7.5mg barely helping me now and still in pain.It is also written in my med records that I CANNOT take fibro meds and that narcotics is the only way I can be treated for fibro pain and now after all these years they just decide out of the blue without explaining to me why they are going to take me off the only thing that helps me live somewhat pain free.Does anyone have any suggestions?Is anyone here from around Kalamazoo MI that see's a dr that doesn't consider every person that comes into their office a drug addict and treat the ones that have real medical conditions as drug addicts?If anyone is could you recommend a dr to me?I am really scared.if what I'm on now isn't strong enough and working how can they just take it all away and expect me to live and live suffer free and take care of my family.I hope everyone understands what I mean.i'm sure all everyone that suffers from fibro understands the pain and the challenges we face everyday with the constant pain.Please help me.I am soo scared.And to make matters worse I have no med ins.I was laid off from my job and somehow i dont qualify for medicaid. go figure.Please help me with any advice you can give.I am seriously freaking out and scared of what could happen to my life.Please reply to me w/anything advice you can give me.

Take the Poll

Can anyone tell me what they take for fibro that works for them that is obviously a narcotic because I cannot take fibro specific meds,because of the side effects and the seizures.Any recommendations.Mind you I have a high immunity just life the rest of the woman in my family.THX
  • Medication recommendations pertaining to pain med regimen.
  • Cannot take fibro meds due to bad/severe side effects
  • Fibro meds also cause seizures
vote
View Poll Results
Reply
 
avatar
An_199620 responded:
To start may I suggest you break you post up into short paragraphs, Just hit enter ever few sentences, and itmakes it much easier to read and follow along.

Some won't or can't read those posts, it just runs together, and blurs, etc. With that being said, I am wondering if the drs have done any testing to make sure there isn't a problem of some type, causing seisures.

15 yrs of being on pain meds, half your life, almost, does not sound like a good thing. In my opinion.
I'm thinking maybe the drs are realizing this, or maybe you are refilling more often or taking more then you realize.

The problem with narcotic type meds, is eventually, in many cases, it does stop working as efficiently. Thus requiring stronger, more often, etc. to control the pain.

This is one reason why many drs. prefer not to use for treatment for FM type medical problems.

You say all FM meds cause the seisures, and in looking back at your posts, as far back as 9 or 10 months ago, you were in same situation.

Are the seisures confirmed, have you seen a dr right after, or testing done right after?

I myself don't like to, or wouldn't catagorize others as drug seeking addicted pill seekers as the reason you might find it difficult to get your prescriptions filled.

Drs. have to answer to the FDA when they prescribe narcotic type meds. And a closer eye and more records being kept now a days.

Have you considered or tried just an ibuprophen for some relief? (advil, alleve).

Having a recent delivery, what did you do while you were pregnant? I would think you would not have been on narcotic meds during the pregnancy?

This is just my thoughts, hope it isn't to harsh
 
avatar
Pookie7lee replied to An_199620's response:
I have suffered from chronic pain since I was 15 (i didnt mean to say state I have had fibro since I was 15 i guess i just typed to fast and didnt fully explain) i have suffered chronic pain since 15 starting out with back and shoulder pain. They have done every test possible and the scripts started with motrin 800's. They told me I had scoleosis (sp), and many other medical conditions. i was finally diagnosed with fibro with in the last 10or so yrs officially diagnosed. i dont take more than I am suppose to or try to get refills before my refill date. I have always taken my scripts as prescribed. I have tried natural herbal meds, OTC meds, vitamins of all sorts, massage therapy, physical therapy which I still do to this day even though I have done it thru the referrals from my dr 4-5 times, i continue different exercises at home, sometimes helps sometimes not, the most exercise i get is taking care of my very rampbuctious 2 yr old who is a huge handful. There were only 2 fibro meds that caused me seizures the others just severe side effects and I did see specialists and have tests done to show that the cause of the seizures were due to the fibro meds.As I stated before i don't refill more often than i am suppose to because of the percocet I have to go to my drs office to pick it up. i call it in go to the office and get it and take it the pharmacy so its impossible to refill more often than needed.Trust me if I could take meds that are fibro and it would work and help with my pain I would be more than happy to not ever have to take another pain med.I dont enjoy taking drugs at all and I pray to God EVERY night to please help me thru this and to help me with my fibro condition which i know there is no cure for. I have tried to taper myself off the pain meds and at one point I did very good with it and barely took half my script,but the pain was so bad that I just couldn't.i couldn't get passed the pain.I have had a conversation with my dr about it being something else other than fibro and that is what i have
no question about it. but if i am unable to take fibro meds and the drs themselves determined that and that the only thing that i can take for fibro pain is narcotics then why all the sudden now knowing the extremeness of my fibro are they taking me off them completely.if you have fibro can't you see where i am coming from and the pain you endure on a daily basis?
I want to have a good life with my family and if i cant do it because i am not being treated with any mediation for my condition how am i going to have a life. i barely have one now.
its hard for me to get out of the house as it is.i have days i cant get out of bed. just this week my supportive loving mother took my 2 kids for 3 days because i had an extreme flare up and couldnt even take care of my own kids. i laid in bed/couch and took hot baths. i dont know what else to do. but no i am not addicted to my meds and yes it started at a young age
but that was not my choice. i didnt chose this.but i am the one in pain on a daily basis or all these yrs and now i am missing out on special moments with my children because of it. its not just a mild case, i have an extreme case of fibro. i just dont know what to do. but thank you for replying i really appreciate it.

and by the way i dont know how my post got post on here 3 times. its beyond me.
 
avatar
lb707 replied to Pookie7lee's response:
I would have loved to read this post and answer some of your questions as myself have trouble with many meds.

I read the first post but could not get through the second one as I just cannot read when the paragraphs are not broken up..... oh yes fibro does effect the eyes.

One thing I will tell you... don't go shopping too much for Dr's as it will take time for a new one to know you and will not be able to help you with pain til they know you and your pain.

Laura
 
avatar
angelldakota replied to Pookie7lee's response:
Dearest Pookie... I am so sorry you are hurting so badly and having such problems with the Dr... I too was ill at an early age and was told it was growing pains and in my head.... wanting attention... I can't even remember if they did any tests to see if something was actually wrong... All I know was it was the pits and a stereo type I didn't need to grow up with...

When I was 24 I was raising a 3 month old. a 2 yr old, and a five year old on my own and got very ill...

I was paralyzed for 9 months and they couldn't find any reason for it except muscle and nerve damage... They thought it was from the excessive beatings I had taken from the abuse I was taking... but then I started having symptoms of FM but they didn't know what was wrong... Mayo Clinc told me they would find out what was wrong in 50 yrs and cure it in another 50... I didn't think it was funny...

It took them till a year and a half ago to dx FM... Through the years tho they found what they call structure problems lol... Back and dics deterioration disease, scoliosis in 4 parts of my back, herniating and bulging discs, 2 failed operations for them, sciatica damage, nerve and muscle damage, MS, acute chronic migraines, neck and shoulder damage, and other problems that cause chronic pain... I have been on and off narcotics for a long time...

When I was off them I suffered more then not... I was on them most of the time that my children grew up... But I also went thru cancer too while they were small... So we dealt with a lot of pain...

I too lost a lot of my children's childhood... But we also found that we have a much better bond then most children do with their parents... Always did... They helped me out a lot and were a great support... I believe anyone with small children and illness can do this... For they can be raised in very special circumstances... You may not be able to take them to the park on a sunny day for a picnic but do as I did and have a picnic indoors... I had it on my bed... I had someone bring in a baby bathtub full of snow to make snowmen in... Instead of going out to play we cuddled and read and watched their favorite movie... When they got ollder we talked about our day... We had family meetings... and special game nights...

We could fit in more cuddling just as I can now do with my Grand children I live with... We call it quiet time I call it resting lol... The more you share your love with them the more they will support you and love you back... My grand children kiss my owees and make them go away just I kiss theirs... I just don't tell them where I hurt cus that would hurt lol... I fib a bit... lol... But they hear me go ugh in pain walking or ugh getting up and they come running to say "sorry nany"... They are so precious....

Children are easier to find memories with and easier to be a mother to then you think they are... I know we hurt daily and constantly... I have the same...

I can't take regular FM meds and vitamins and such due to bad stomach problems from my diabetes... I also got suicidal on some... And I don't need any help there lol... I had to change pain management Drs and he put me back on my narcotics and is doing a great job of watching them... I too don't take them as often as needed for I take enough pills of necessity... But I still have pain not as bad... they do help all my structure and chronic and MS and FM pain... unless I am having a bad flare up of it all... That happens a lot more then I like lol... but it is something I can still deal with...

Well I hope you don;t think I said any of this to make you trhink I am worse off then you... NO one is worse off then anyone when it comes to illness... NO matter how many things are wrong or what is wrong... Illness is rough to be dealt with... I will write you more later... running out of space... lol... rather chatty here lol...

take care happy holidays... love jan
 
avatar
An_199621 responded:
Hi Pookie7lee,

I am so sorry that you are having such a difficult time with your doctor not wanting to perscribe or continue to keep perscribing what seems to be helping you.

I am wondering if I should stop my narcotic. I am not positive that it is helping (I like to think that it is). I think what works best for me is to just rest when needed and use heat.

I found a prior discussion about doctor's not wanting to perscribe narcotics. The link below will take you to that discussion.

http://forums.webmd.com/3/fibromyalgia-exchange/forum/14924

If you and your doctor continue to disagree about your medications, you may want to find a new doctor. But I think you should try to work things out with your current doctor because you have such a long history with him/her.

Have you tried alternative treatments like: massage, accupuncture, physical therapy, TENS Unit, etc.... They may help you.

I hope that you can find a little relief from your pain soon!

Merry Christmas!
 
avatar
jroseland replied to An_199621's response:
Hello-
I am also young--28--and have had chronic pain for at least 20 years. After trying some of the meds specific for FM, I decided that I would rather try narcotics pain meds because of the side effects.

I am still only on a pretty low dose Vicodin and it does okay. I don't take it regularly, just as needed. However, I can tell that the day is coming sooner than I would like that I will need something stronger. So far my doctor has been cooperative and I haven't had problems getting my prescription filled but I've only had a prescription for maybe a year.

I can understand your concerns. It seems like the doctor is reacting to something--maybe a medical group wide push to watch out for abusers? I don't know, but it seems like something is causing this change. I think you should bring up to the doctor all the things you brought up in your post: why the change as your chart shows you've tried other meds, the functionality of your life without, your record of non abuse, etc. Your doctor might be getting pressure from another source and if you stand up to this a little with reasonable and logical arguments, then she may back down. If all the above is on record, then she's covered too. Of course, I'm just talking here--I don't know all the facts.

I could take 2400 mgs of ibuprofen in a day and have no relief--that's part of the reason my doctor gave me something stronger. I think one vicodin is better than all that ibuprofen? When you start having pain so young, you end up with high medication tolerances young also.

I hope something works out for you. It seems to me you have a long list of things to prove the kind of meds you need. It's a tough balance with doctors. I've had the best appointments when I have gone in very prepared with what I want to say--even having notes and/or research.


Helpful Tips

Living Well with Fibromyalgia
Greetings! I have learned patience and a positive attitude is key to my pain management. I developed Fibromyalgia after a hysterectomy in ... More
Was this Helpful?
194 of 211 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.