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New Guy, Complaining, How much medications do u take?

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Posted 1/17/2010 10:56 PM (GMT 0)
idea
Hi, I'm Eric, I'm a 35 year old male. I was diagnosed with Fm about 1 year ago. It seems that that the Dr just wants to give me medications and send me on my way. I currently take about 21 pills a day.. I really think it's an excessive amount. I'm just curious how much medications other person with FM have to take per day. My Dr gave me Cymbalta, but I got a lot of the side effects and then he gave me Lyrica, but I also got a lot of the side effects. I gave each medication a month to see if the side effects would ease up or go away, but it seemed that I would get another side effect or they would intensified. I stopped taken Cymbalta and Lyrica and went back to the Dr and then he would try me on Neurontiin which I'm still taking and never got one side effect and thats GREAT!, but it does not seem to help. As time goes on it seems that I get more pain spots or the pain intensified in my joints like in my Hips, knees, wrist, shoulders. I called the Dr one day and telling him I'm have major sleeping issues and he told me to try some over the counter medication with the medications that I'm taken, I said ok. I gave it a month to see if it would help the sleep issue, but still not really help and I told him and he just skipped the issue and put me on more medications. Maybe I want a all the pain to go away and forget it, but I know that will never happen. I don't know anyone with FM, so I'm not to sure what to expect.
Thanks for listening while I complained
Take Care
-Eric
Posted 1/17/2010 11:27 PM (GMT 0)
Hi, Eric, and welcome!  I just wrote a post on the Weaning off SSRI's thread.  It does seem that the doctors have a pocketful of meds to pass out.  Now, I'm not a doctor and this is only my opinion.  My doctor has wanted me to take SSRI's, Lyrica, and Savella, and I wouldn't do it.

 

I have been able to control the pain using ibuprofen with food, extra strentgh Tylenol (generic), malic acid/magnesium supplements, and vitamin D supplements.  These have helped me with pain and fatigue.  I still have pain but it's under control and I can live my life the way I want to.  Yes, I have flares, but that is to be expected with this illness.  I know I won't be pain free but I am having an enjoyable life in spite of fibro and I have no side affects to deal with.  I also feel very comfortable getting behind the wheel of a car.

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia and you will learn a lot there.  You will find links about malic acid/magnesium supplements and vitamin D.  It seems many with fibro are deficient in these.  They don't help everyone, but they sure have helped me.   

 

I hope your doctor has run tests on you to rule out other illnesses first.  It's important to have a good rapport with  your doctor.  They should listen to you, too.  After all, you are the boss.  You are paying them to try to help you but your thoughts should be taken under consideration.

 

Be sure to keep moving.  If you sit or lay too much, you will be stiff as a board.  Gentle exercises really help.  I walk and swim as my exercise.  I also do stretching exercises.  There is a link in Fibro 101 with some good stretching exercises that really do help.

 

I'm so glad you joined in, Eric!  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.

 

Sherrine 

 

 

Posted 1/17/2010 11:34 PM (GMT 0)
Hi Eric, welcome to the home of the friendly fibromites. If you haven't already make sure to
check out fibro 101 on top of page one. you will find alot of helpful information for fibromites.

Eric it is frustrating to try to find the right med combo to alleviate pain. It definately is trial
and error. We all tolerate meds so differantly and we take differant combinations,

Some of us have multiple illnesses so we are on a variety of meds. For fibromyalgia I
take Savella which is a SNRI 50mg 2x daily, Flexeril (cyclobenzaprine) for flares, which is a relaxer. I also take a good multi-vitamin and Take Vitamin D supplements. Many fibromites
are Vitamin D deficient and that can cause pain.

Exercise helps relieve stress along with relaxtion therapy helps allieviate some pain. I am
never pain free and I don't expect to be, but I think you build up a tolerance. Flares on the
other hand are more difficult to deal with. Pacing yourself, knowing when to take it easier
is key.

I'm glad you have found us, this forum is caring, supportive and we understand because we
are living it.

Hugs, Robin
Posted 1/18/2010 1:25 AM (GMT 0)
Hi Eric and welcome,
I'm 55 and have used dr. meds for 30 years. Finally a year ago after a botched knee surgery I went
herbal. I was lucky to find a body builder who has a lot of the same problems because of the lifting
that I had with the arthritis and fibro. I've used so many different things over the years and got so
sick and tired of being sick and tired that I finally gave up and tried a different route. I'm glad I did
as I am able to function, sleep and work much better. I ran out for about 2 weeks and started going
through he** again so I took a trip up to Syracuse and restocked. It's been 3 days now and I'm
slowly getting back on track. I figured that it took me so long to get messed up that I wasn't going
to heal overnight. The good thing about the stuff I take is much of it doesn't have any side effects.
Kind of a new going Green. Hope you feel better as I remember how much I was going through at
25 and swore I would be in a wheelchair by 35....I'm still kicking butt (sometimes a little slower).

Nana Monster
Posted 1/18/2010 2:13 AM (GMT 0)
Hi Eric,

I know where you're coming from....check out the meds list in my signature (in red)!

JoAnn
Posted 1/18/2010 2:42 AM (GMT 0)
Hi Eric.

and welcome to our Fibro family . You have come to a good place. lots of caring people . and people that DO understand what your going through. ( the best part for me as if you don't feel it you never really really get it. no matter how hard you try MHO ) .

you'll find lots of support here . yeah

mind you we are all different in our symptoms and what Meds work. as I'm sure you can understand.

I do hope to get to know you . and will try to help you as much as I can..

 

I still am not where I would like to be with my treatment . if you can call it that. LOL. but hey . working on it . desperately working on it.

I have been taking pain Meds steady for a couple of years now so have worked up to a higher dose to some .

still have a lot of problems  , but I think we are still missing something. so the search goes on and on .

 

I do take Lyrica... but had to drop from the max does of 450 mg a day to 150 mg. ...

pain meds include . Perc 750/325 ,Fentanyl patch 50mg every 72 hrs. . Soma 325 ... Vit D . anit anxiety meds, and of course . high blood pressure meds. ect. .. mulit Vit.. Fish oil ( when I remember )

 

So ya I take pills all  day long , its become part of my day and night

 

but its Different for every body. I wish  I could do it without all these Meds. really I do .. but just did not happen that way for me.  Mind you I have had different health issues. and painful ones at that from age. 16 . that's probley got a lot to do with my tolerance to pain Meds. .. at least my thought.

 

I am sorry your going through this.yeah Fibro is so hard.. I'll be glad when they figure out some sort of real treatment for us. .. as right now we just try to ease the symptoms as best we can so we can live a somewhat normal life. ya know.

 

Are you still working ?shocked 

 

 I am Blessed that so far I have been able to keep up with my Job.. Mind you I demoted myself from supervisor to a home agent so I could and just demoted myself again to a less stressful position with that to . not sure how much longer though. .. but praying

 

feel free to come here anytime we are here for you . lots of great people . and some real veterans at this too.

we do like to have fun though . so watch out for our fun post. . Like " as the Fibro Burns. " one of our members does this and I just cant get enough . makes me laugh so hard.

 

ok I tend to ramble some day s LOl... Take care for now.. smilewinkgrin  

 

Posted 1/18/2010 2:54 AM (GMT 0)

Nana Monster said...
I've used so many different things over the years and got so
sick and tired of being sick and tired that I finally gave up and tried a different route. I'm glad I did
as I am able to function, sleep and work much better. I ran out for about 2 weeks and started going
through he** again so I took a trip up to Syracuse and restocked. It's been 3 days now and I'm
slowly getting back on track.

Nana Monster do you mine sharing what you're using? I've picked up a few things this past week or so to try but I'm not taking anything until after I see my doctor next week.
Posted 1/18/2010 4:31 AM (GMT 0)
Hi Eric!

Wonderful to have you as part of our Fibro Family. We don't get as many men here since Fibro affects women more than men. But if you do a bit of reading you'll find that studies in the UK found the ratio about 3:1 (women to men) but research in the US shows a 9:1 relationship. I've always wondered if this makes it harder for men to get good treatment.

But besides that...as others have said, I agree that you are taking a lot of pills for fibro alone! That's a bucket full. Many of us take that amount but we also have multiple disorders. My guess would be that since there is no specific 'treatment' for fibro that doctors start throwing things at us until something sticks. The latest and greatest are Lyric and Cymbalta. All of the salesmen started making the rounds to doctor's offices with a push for these meds for Cymbalta in June of '08 and Lyrica in June of '07. I, like you, have tried them both and the side effects were intolerable. And there's a double handful of other things my doctor has tried..with my OK of course. This is the sad thing about fibro...not only does one drug not work for a majority of people with fibro, most often if you do find one that works it's only short lived.

So, what I'm trying to say with the rambling is that all doctors can do is have us try different medications and combinations of them to see what may help control the side effects of fibro. The cause is still unknown at this point but is it looking more and more like it's a neurological disorder. Basically we have a built in amplifier for pain, plus all of the other miseries that fibro brings.

Talk to your doc and your pharmacist about the amount of pills you are taking. Let them know your concern. You can see what others are taking but who knows if any or all of it will work for you. Are you confused yet???..lol We all are and we all are here to support each other and to hopefully aid with finding a cure for this misery.

In the mean time please join in on some of the fun we have here too. Yep, we're no different than anyone else and I think more than most we need to remember to have a smile every day. We have a Koffee Klatch you can join in. We pick a topic or question or game each day and have a few laughs or insights answering them. The only rule is NO mentioning of the 'P' word...(pain)..lol Plus we have a Chat Night in the Chronic Pain room. I'll post a reminder and directions for that on Wednesdays.

Again, glad you came and I do hope you jump in with both feet and join our family.

Hugs,
Chutzie
Posted 1/18/2010 2:29 PM (GMT 0)

Hi Eric!  For me, less is more.  I cannot tolerate the new fibro miracle drugs or narcotic pain killers.  I would rather have the pain, but everyone is different and some fibromites get relief from different combinations.  I just take Advil and Tylenol, magnesium and fish oil and yes...some days that's like trying to put out a raging fire with a glass of water.  But the stupor and agitation I get from cocktails of meds is just too much for me to handle mentally. (the hubby begged me to get off Lexapro).  I do take 5mgs of valium at night for Restless Leg Syndrome.  21 pills a day is a lot of drugs!  I would think all the interactions alone would make you feel like crap, but that's just my experience and opinion.  I hope you find something less toxic that works for you, and a doctor that will take the time to figure out what you need to control this disease without adding more and more drugs.

Huggies

Donna

Posted 1/18/2010 2:53 PM (GMT 0)
Hey Eric- I understand what you are going through.  I myself am 32 and have been dealing with this for about 2 1/2 years now.  My doctors also put me on a bunch of meds for a long time, but my family noticed a difference in me.  They said I was not the same person. about a year ago, when my husband and I started talking about a plan to start a family, I decided that I wanted to be med free for at least 12 months, so the next day I started weaning myself off all the meds. It was very hard, because you get so use to taking them, but I knew it was something I had to do.  Many doctors told me that some of the meds are ok when having a baby, but I am a teacher and am afraid that these doctors are just looking at the physical and not behavioral or learning aspect.  I have had good times and bad times as far as pain go during this time off meds.  I try to stay active (light exercise.  I found out water aerobics works great for me), keep my stress down(leave work at work and only do as much as my body and mind allow me to), ask for help & delegate things, do alternative things (massage), and listen to my body.   I have learned what works for me and what doesn't.  I know what affects and triggers my body (humidity, stress, cold weather, lack of sleep).  I do have flares now and than (am just getting over a really bad one that lasted about  a week and a half), but I am willing to live with those once in awhile.  I do have pain, but have learned to deal with it.  I do take over the counter anti-inflammatory stuff when it gets really bad.  I am not saying that being med free is for everyone.  It is a personal choice and who knows someday i may need to go back on some meds, but as long as our plans are to start a family, I feel it is the best thing for me.  I have learned a lot from my body during this process and now know what is good and not good for me.  This was not easy for my family or I and we all have had to be very patient and show great perseverance.  It really SUCKS having something like this at a young age.   I often get frustrated.   I always try to remind myself someone else has something worse.   I swear for me I had to go through all the stages of bereavement to really except this. I also have been diagnosed with food allergies a year ago, which has made things even harder. I often wonder why one person has to go through these two difficult things, but I someone does and I just happen to be the lucky one..hahaha.   Well, I just realized this is a long post, but I hope you got something, other than my rambling, out of it.   I guess, all in all, what I am trying to say is you need to find out what works best for you. I hope you have a great day and good luck with everything.
Posted 1/18/2010 3:38 PM (GMT 0)
Hi Eric and welcome. I have a medphobia so it's hard for me to take new meds for anything but I do take plenty for other issues. I take 100 mg of amitriptyline at bed time, which I was on for anxiety when I was dxd with fibro. I mostly take tylenol and use heat for fibro pain. I do have Vicodin but use it very sparingly as not to build up a tolerance for it and found it makes my anxiety worse. I would rather have the pain instead of the extra anxiety.

 

I don't stress when I start to hurt really bad cause I know from experience that is only going to make it worse. Yesterday I thought I was going into a major flare so kept calm, used stretching and hot shower and this morning I hurt but don't feel like a major flare. I use to panic when I would start hurting really bad, especially when I had something going on that I needed to be as pain free as possible for, but realized that just makes the muscles tighten up more.

 

luv and hugs

Marlee

Posted 1/18/2010 9:01 PM (GMT 0)
Tina,
This is just some of the stuff I've been on over the last 30 years for the ticker and pains....
Toprol 25, Nitro, Clinorol, Cymbalta, Amitriptolyne, Noratriptolyne, Viioxx, Tylenol w/ codine,
800 Ibuprophin, Flexoril, Darvacet, Percocet, Oxycotton, Predisone, Med Pak, Depro Medrol shots,
Nystatin and Flagyl.

Now I take Super Cissus RX (rebuilds muscles, tendons, ligaments), Bio-Sil (rebuilds callogen),
Malic Acid (detox), Vit D, Omega 3-6-9 (needed esp for heart and muscles), Co Q-10 (used in every
single cell in your body esp the heart...if you are taking anything like lipator it kills off the Co Q-10
in your body and sometimes leads to heart disease and failure), Silica (brittle fingernails)
True Calm (like an herbal flexoril or cymbalta...works on the neurotransmitters) Colostrum
(bovine breast milk used to boost immune system, helps to rebuild damage to Chroans), Vit C & E
(works for immune, blood, heart and boosts the circuts in brain to help prevent Alzchimers,
Hylaronic Acid (which is found in Japanese food and is great for skin...when used with colostrum it
thickens the skin and healing ability is amazing) and HGH (human growth hormone...for my
greying hair and wrinkles also works with muscular structure)

Nana Monster
Posted 1/18/2010 10:16 PM (GMT 0)
Wow Nana,

I wouldn't want to be you on the day that you have to fill your pill box. I thought that I took a lot, how do you remember it all???

Hugs to all,

Karen
Posted 1/19/2010 12:41 AM (GMT 0)
I started the Super Cissus RX, Bio-Sil and Malic just last year, either Feb or March. My knee surgery
was so badly done that the kneecap was over an inch out of place. With these wonders the knee is
almost where it belongs, the pain is manageable (aches now and then), I sleep much better where
before these I would wake up sometimes over 40 times a night, the mood swings and grouchyness
is gone, and I can work much better. The popping and crunching in my joints have diminished and
bone spurs are shrinking.

The Co Q-10 was on the recommendation of my cardiologist who was amazed that I was taking
the colostrum and hylaronic acid. I've had numerous surgeries and bounce back fast. When I
had the 35 shots in each arm for allergy testing the lady said she had never seen such tough skin.
Until it got down into the elbow area I could barely feel them. I no longer go to the drs all the time
and had a record last year with only 2 visits!!!

Next week I'm going to start on lecithin and lipo-trim to shrink a couple of lypoma tumors that have
started to grow.
Posted 1/19/2010 1:15 AM (GMT 0)
Hey Eric!!

Yeah, figuring out the puzzle sucks.  And even when you have (you think) a handle on it, something breaks, or has a side-effect, or is prohibited by your insurance... You get the pic.

Are all of your meds prescription?  I take a lot of pills (lots of different conditions), but many of them are natural.  The aforementioned Vit D, fish Oil, Niacin, Echinacea, mushroom complexes, and garlic (I cannot afford to get sick this winter!).  I used to do the Co-Enzyme Q10, but it didn't do so much for me, so I stopped.

Are you otherwise happy with the doctor?  Remember, you can switch and/or get another opinion.  I usually see a rheumie, but in my new location I do not feel the need to, since I dig my PCP.

How well do you eat?  Do you exercise?  I swear by both of these, especially the exercise.  It helps with pain management and energy levels.

I, too, sleep badly and need my sleep to function (still working fulltime in a professional capacity).  So, I take sleep meds.... specifically rozerem, which not only works but has a great ad campaign with the groundhog and Abe Lincoln.

Stay sane and moving forward!

Posted 1/19/2010 9:23 PM (GMT 0)
Thank everyone for all the good advice about medications, Vitamins and exercise. My Dr has me walking on a daily basics 5 min and that's all he want's me to do because of my knee wanting to give out all the time. I have fallen and landed flat on my back because of my knee just giving out when it wants to.....He told me to wear a knee brace that he gave me, but because of it being very fitting it hurts me, so i have less pain when i don't wearing it, but my knee gives out. When i do wear it my knee don't give out, but I'm in pain. It seems that it has to be one or the other. It just can't be both. I had a flu shot a few months ago and the spot that they gave me the shot Its now a trigger spot.. Has anyone had the same issue before?
Everyone have a great day
-Eric
Posted 1/19/2010 9:30 PM (GMT 0)
Eric, is water exercise an option for you?  Many communities have indoor pools or the Y to go to.  It's wonderful for the fibromyalgia and it would be very easy on that knee of yours.  Besides, if you fall...you'll be floating...hopefully!  turn

 

Sherrine

Posted 1/19/2010 10:57 PM (GMT 0)
Sherrine's right that aquatics are great. I know in the summer I use my pool a lot and it helps me
to keep going. We've made a type of solar heater so it warms the water up so I can tolerate it
better. Anything below 85 tends to send my body into shock and I have a hard time moving.
Posted 1/20/2010 1:43 AM (GMT 0)
Go to the water! It really really helps!!
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