question for all of us feeling so guilty about what we can't do

Di-Anne - posted on 10/08/2009

chronic pain yes. heart conditions no. i would imagine you'd have to be very careful of what you take as most pain med thin/thicken the blood and weaken the heart and other organs. i have a team of professionals that discuss everything before they prescribe something new and then monitor closely until i am stable. try to get in at your nearest pain clinic. they are highly specialised people who know a bit about every kind of pain.



hope you feel better soon!

Mary - posted on 10/07/2009

I had a heart attack at age 37, which was 8 years ago. Then 2 years after that, at age 39, I had two pulmonary embolisms. After the PE's, I started having pain all over my body every day and every minute of the day. They sent me to multiple doctors and in the end they told me that I had fibromyalgia and lupus. Due to the heart condition I cannot take most pain killers. So, I am trying to make it through the pain taking only Darvocet, which is a total waste. I get maybe 15 minutes of relief a day. Does anyone else out there suffer from heart conditions and chronic pain? What medication(s) are you being allowed to take? I want to try something new but the doctors just say that nothing is safe for me to take. Help! I can't take much more of this pain, it's totally ruining my body and soul.

Di-Anne - posted on 10/06/2009

my thoughts... the guilt is horrible... the relief even for a few minutes is priceless. i had a serious problem taking meds to the point where i would vomit at the thought of having my medication time come on! i am the antichrist of a hypochondriac so bad i cant even spell it right now). i had to inject most of my meds for the 1st 2 years because i would just puke it back out if i took it in pill form AND i also had to use anti nausia meds at the same time.



i am home schooling my three kids (15, 13 and 9). we have been homes schooling for 9 years now. 5 years ago we were in a terrible car crash. i was fortunately the only one hurt, but i was hurt badly. since then i have not been able to sleep 20 minutes without a sedative. 2 hours with a sedative is a GREAT night for me.



my current doctors have basically got me to where i can 'function' - but barely. i have physio every day and am on life long meds and i am waiting for a surgery date and a plan of action for a full spinal fusion NOW. but with the current meds i have found that occasionally i can actually feel sleep coming on. i know that sounds wierd... but it's almost like feeling a sneeze coming on... there is a moment when you feel i could fall asleep right now. so i make a mad dash at around 100cm in an hour to my bed and low and behold i actually fall asleep sometimes!



i am never able to sleep more than a few minutes but i do it on my own - without a sleeping tablet. when this started happening i would get so angry with anyone who woke me up! then i felt so bad for getting so angry. the guilt was awful! after many conversations with my pain specialist, neurologist, hubby and kids, everyone understands what an incredible milestone this is for me! they leave me to sleep and even keep dogs, cats, phones and other people away from me so i can feel like i've achieved something...



you take baby steps. enjoy each lucid moment you have. and do whatever it takes to be a nicer person to be around and a more attentive valueable mom!

Christine - posted on 10/04/2009

jeanette, i just had to stop depakote because i was feeling like i was going to collapse. i go tomorrow to get something new. i take clonazepam every day--that's what keeps me from crying---and it is so inexpensive.

Christine - posted on 10/04/2009

kevin and i will have our 22 anniversary in december. between the two of us we have 11 children. 2 of his, 2 of mine, and 7 of ours. he adopted both of mine.

i have fibromyalgia, and adrenal insufficiency and depression. i started having headaches on a regular basis about 10 years ago---and it has gradually spread to all-over body pain. it just kind of slowly snuck up on me. i had a hysterectomy 4 years ago that put me into a really bad flare and i have never been able to get off of norco and soma since. i used to just take darvocet. i recently had to increase my monthly amount of norco and soma---and i'm not sure i'm making it the whole month since you can actually get it refilled within the week before the original refill date. i want something that lasts longer than 4 hours!!!

Brandy - posted on 10/02/2009

can I ask what is wrong with you ? how long have you been in pain ? how many children do you have ? are you married?

Christine - posted on 08/27/2009

i wish naproxene would help my pain. i take 1/2 norco, 1/2 soma, and 1/2 of a caffeine pill. i used to actually feel quite perked up after taking these--but there are alot of times i get sleepy, now, but the pain is intolerable if i don't take it----and i get really irritable and grouchy and very sensitive to being touched and noise and the feel of my clothes, etc., etc. i know the caffeine isn't the best for me, especially since it aggravates my reflux, but i need to have surgery for it, anyway, because the medication for it interferes with one of my other meds. surgery makes me a little nervous, though, because it was after my hysterectomy that i went into such a bad flare and have never been able to get off of the stronger meds again. also, i had a bout with MRSA this year, so that is a little concerning to me, too, if i am going to have surgery.

Margaret - posted on 08/27/2009

ye the longer you take it the drowsiness goes away

Clorice - posted on 08/27/2009

So after awhile it shouldn't be too bad? That would be nice. I really like my Naproxen, that eases so much pain from the back, the fibro and my menstrual cramps lol. I just want to be able to ease the pain without the blahs lol.

Margaret - posted on 08/27/2009

while you can try to keep it that way its been a very long time since my meds have done that and you do miss it once it doesn't knock you out even as inconvienient as it is

Clorice - posted on 08/27/2009

I try not to use anything. Not because I'm trying to be gung-ho or anything, but no matter what I take, I get drowsy lol! Ibuprofen, tylenol, naproxen.... you name it, it knocks me out. Then I get to spend all day feeling drowsy and crappy. So I'd rather just deal with the pain for now. When it gets really bad I take my Naproxen and just let it put me to sleep.

Jeanette - posted on 08/26/2009

Christine, boy do I know the feeling of just wanting to walk out of your life. It gets old very fast to feel the way you do, then to end up having a reaction of some sort to the med you've been given, well, it's just the icing on the cake. My problem area seems to be antibiotics, and gaining tons of weight on things that are supposed to be "weight neutral". Depakote made me gain so much, and my eating habits never changed. Found out later that is slows your metabolism to a crawl. Then I was given Requip (supposed to be for restless leg, even though I have a myoclonic twitch), but they thought it would help. Yeah, it helped me pack on the pounds, made my heart race, and I couldn't sleep. I don't know why they insisted on changing when Klonopin is not only very cheap, but also the first recommended treatment for what I have. Makes me really believe doctors either get a kickback from drug companies or they honestly believe the sh*t they're being shovelled!



I know what you mean about not being able to afford the med you truly need, even with insurance. More and more, they're raising deductibles, putting meds in "tiers", or just flat out refusing to cover them....and my favorite, denying a name brand even if you're allergic to some different filler in the generic.



I could go on forever about it all, but I won't be that person. I just hope things straighten out for you soon, and also want to let you know that I totally understand.

Margaret - posted on 08/26/2009

your description sounds just like bruces for the side effect of antidepressants....

its called Akathesia and once you start presenting with it you literally cannot take those drug types anymore. although it is very rarely correctly identified as a drug side effect. such as in bruces case they assume it is anxiety and try to treat it as anxiety which doesnt work because it means essentially more of the same drugs as opposed to removing those drugs from treatment which is what is necessary to stop it

Christine - posted on 08/26/2009

i got my soma and norco refilled yesterday---and the doc had raised the soma another 10 pills for the month!? i take the 10/325 norco, when i flared after my hysterectomy several years ago, they gave me the higher norco because it had less acetamenophin---don't want liver damage. i think that they had originally been giving me the 750 norco.



i have have had such problems with anti-depressants----at doses that would be normal for other people, my skin feels like it is crawling and i get very agitated. celexa once worked for me really well for depression, but it didn't help the last time i tried it.



i really feel like i need to be on anti-depressant again---i cry way too much and too often, but i just don't want to get caught up in the whole cycle of trying to find one that works without unacceptable side-effects. once i took 1-3 pills of something---and ended up with vertigo for 2 weeks. i also get vertigo if i don't taper off of antidepressants very slowly.

i really wish i could go back on the vyvanse for the ADD, but i can't afford it, even with my insurance. this generic adderal i am taking twice a day just is not cutting it for me. i can hardly keep my eyes open during the day sometimes, and here it is2 am and i can't sleep.



sometimes i'd just like to walk out of my life.

Margaret - posted on 08/25/2009

completely understandable and yes they are different for everyone. psychiatrists give me the shits as does psychiatry to a large degree it is guess work plus a bit of observation which makes up the entire profession....

there is very little genuine science involved in psychiatry and the majority of psychoactive drugs they don't know how they work or why they work just that for some people they are more effective than a placebo (provided during a short period of testing they haven't killed majority of the patients in the study).....literally thats all it takes for a drug to be approved and put on the market.

in the last few years and currently there are FINALLY studies into the biology and genetics of psychiatric conditions.....it more and more is looking like people with psychiatric symptoms should be seeing a neurologist as opposed to the psychiatrist but there is still a very long way to go.

Jeanette - posted on 08/25/2009

Margaret, thanks for your input, but the medication regimen I am on now seems to work very well for me 99.9% of the time.



And I wouldn't call my diagnostic process woeful. My doctor is VERY thorough, and he wanted to make sure that he wasn't missing something. The gamut of meds I tried were actually ones tried by my (no longer) psychiatrist, I have taken Celexa in particular without having ANY side effects that could even be constued as anxiety. The only med I really had a problem with was Neurontin, and thankfully, I was only on that a minimal amount of time before it came to light that it had such a horrible effect on me.



My daughter was actually diagnosed with ODD, then BPD with anxiety before they finally decided she has ADD, since there seems to be such an overlap in the symptoms at times.



As always, each of us is different, and may respond to different medications in unique ways. I'm not a proponent of any one medication. I know what works for me, and I know what doesn't, and I stick with what works with minimal side effects.

Margaret - posted on 08/25/2009

jeanette many of the drugs you mention can actually induce anxiety as a side effect of the meds themselves particularly antidepressants....

but your story of the medication and diagnostic woes are pretty standard...

particularly with children the misdiagnosis is generally reversed ADD is considered a child disorder while bipolar adult although they are two different disorders requiring very different treatment

Jeanette - posted on 08/25/2009

Christine, sorry it took me so long to respond again! Back in the late 90's, I was diagnosed with Bipolar II Disorder, but to be honest, I never felt like the dx fit either. Then, about a year or so ago, my oldest daughter was diagnosed with ADD, and listening to her therapist (who also has ADD), a lot of what she rattled off sounded like me. And in fact, she told me that a lot of people with ADD are first mis-diagnosed with some form of bipolar. She also asked me a bunch of seemingly random questions, and it turns out that I may have ADD to some extent myself. For me, it comes in the worst part as not being able to pay attention, especially when someone is giving me loooong instructions on something....my eyes glaze over and my mind starts to wander, so I miss a bit of it!



I went through the gamut of meds to treat it. First Neurontin (only to find out later that it's NOT approved in any way, shape, or form for BPD and literally did make me borderline psychotic), then Depakote (which made me gain over 60 pounds in less than 6 months), then finally to Topamax (which thankfully, stopped and pretty much reversed the weight gain!). I went from feeling too much to basically floating through my life, not realizing that this isn't how it should have been. I was also put on anti-depressants and anti-anxiety meds. Add this with my chronic pain related meds, and you can imagine what a giant, doped up mess I was!



I started dropping the psych meds (with approval and close observation) one by one, and as my head cleared, I was amazed. I did have anxiety that required taking Xanax 3 times a day, but as situations changed, I realized I didn't need it anymore, and gradually took less and less til I just didn't take it anymore and didn't even think about it. Makes me realize now that it was situational (for me at least), not permanent.



Now, out of necessity, and desire not to take so much medication, my "cocktail" has been whittled down to just the bare bones treatments. Pain med, muscle relaxer, and a medication for a disorder I have called Idiopathic Myoclonic Jerk. Normally, people with epilepsy have myoclonic jerks, but since I don't have epilepsy, they call it idiopathic (no known cause). I take Klonopin at bedtime for it, so I don't end up kicking or hitting my husband. It seems to be worse when I sleep, however, I do sometimes have to take it during the day (half dose) if I get overly stressed, tired, or both.And to be honest, other than Fibro flare times, I feel better now than I have in years.



You're right about Soma....it does act on the CNS, and at least for me, it helps with a lot more than just the muscular stuff. Your doc sounds like mine too. He will "tweak" my pain med (dosage, intervals), but won't make a change in the amount of Soma. His reason is that too much of a muscle relaxer can possibly weaken muscle tissue and cause micro tears. He's been great to me, going above and beyond many times, so I won't argue! He's the only doc who has stuck by my side, never doubting me, through it all. Even the "specialists" just agreed with his diagnoses and sent me back to him for treatment. Go figure!

Margaret - posted on 08/21/2009

that wouldnt surprise me I should mention MANY drugs in use for chronic pain and depression will actually change bipolar into something which is barely recognisable.

bruce is one of the people this happened too.

the mood stabiliser Epillim has made a massive difference for him. current research is suggesting that antidepressants are completely useless for treating bipolar, lithium and anticonvulsant mood stabilisers are the most effective treatments and try to avoid the cocktails they really are unnecessary and only put you in a situation of having to deal with more side effects.

Christine - posted on 08/21/2009

i've rocked since i was a very little girl--i also have a number of children who need to rock. i've actually seen it, for the first time, on a list of symptoms for ADD. i know i don't get manic---but i do get aggitated. i guess that's why they gave me the NOS--not otherwise specified--label, because i didn't fit any of the normal bipolar labels.

Margaret - posted on 08/19/2009

http://www.facebook.com/group.php?gid=25... one of the best bipolar support groups iv found so far

Margaret - posted on 08/19/2009

Quoting Christine:

i was diagnosed as ADD, but not until just a few years ago---i'm 46. i wasn't hyperactive, but i have always rocked in a rocking chair---can't hold still.  they also diagnosed me as bipolar NOS--but i'm not sure about that diagnosis---i don't get manic, only depression. since i have now been diagnosed with adrenal insufficiency and see that it can cause low blood sugar problems, i wonder if that is what has caused the moodinesss that they thought was a bipolar problem. i have a sister who's son has full blown bipolar, and she didn't think the diagnosis fit me, either. 

mania manifests in many ways inability to sit still is a big indicator speech speeding up throughts racing it doesnt necessary involved elation as such, bipolar mixed states involve depression and the inability to sit still and racing thoughts etc which can translate into someone being seriously restless and irritable sometimes with psychotic symptoms.

ADD and bipolar have MANY similarities. and TBH if your nephew is bipolar the chances you are is even greater.

add and bipolar are actually often confused and/or found together

bipolar is rarely as simple as large clear mood swings between depression and mania.

Christine - posted on 08/19/2009

i was diagnosed as ADD, but not until just a few years ago---i'm 46. i wasn't hyperactive, but i have always rocked in a rocking chair---can't hold still. i was pretty smart in school, so i must have compensated for it---until i got distracted by life, then my grades went down. i also had the psychiatrist tell me that they use the ADD meds with people who take narcotics for pain to counteract the sleepiness that they cause. they also diagnosed me as bipolar NOS--but i'm not sure about that diagnosis---i don't get manic, only depression. since i have now been diagnosed with adrenal insufficiency and see that it can cause low blood sugar problems, i wonder if that is what has caused the moodinesss that they thought was a bipolar problem. i have a sister who's son has full blown bipolar, and she didn't think the diagnosis fit me, either. i need to get back to the psychiatrist. i take 30 mgs of generic adderal twice a day, but the timing varies from day to day, which is probably not the best way to take it. personally, i think i could use it 3 times a day if i have to get up at 6 am when school starts to be able to get my kids fed and out the door. when i took the vyanse early, i could feel myself start to sag around 6 in the evening---when i needed to be taking care or my kids. personally, i think a long acting one supplemented with a short acting one would be really nice. i've heard that they do that sometimes.



i'd really like to have a longer acting pain med so that i didn't end up away from home and hit unexpectedly with pain all over.

Margaret - posted on 08/17/2009

i understand what you mean about the 8 hours for the slow release and then the pain hitting you and they take 2 hours to kick in in the first place which means you get 6 hours relief from each....im on slow release tramadol....its made a massive difference for me. its helped with my anxiety as well as the pain....but im to ration it and not take it all the time waking up if I havent had it that night is NOT a pleasant experience.....

Jeanette - posted on 08/17/2009

I was taking Oxycontin, but mostly because of the price and them constantly yanking the generic, I recently switched to MS Contin, which is a 5th of the price, even generic to generic. My doc says they keep the price so high in an attempt to keep it out of the hands of dealers. It releases faster than MS Contin (one of the down sides for me), which is one of the reasons it's so highly abused. I switched to an extended release, pure opiod mostly because all the others did was, like you, make me loopy for about a half hour, then left me with a whopping headache with no REAL pain relief.



He prescribes it at 8 hour intervals pretty much for the reason you said. The manufacturers say it should last 12 hours, but right around that 8th hour, I'm feeling pretty bad. I'm one of those weird people though, with how meds affect me. If I take pain meds too close to bedtime, no matter what kind, I won't sleep at all. So that's when I'm most likely to take a Soma, along with 1mg of Klonopin, since I have a sleep disorder similar to RLS that causes me to twitch. It makes for a hard wake up in the morning not to be able to take pain meds at night, but it's one of the first things I do (if I get up before my son!).



I looked on rxlist about Adderall, and what it says is to start with 5 mg twice a day, with the first dose taken upon awakening, then subsequent doses (one or two, depending on the person), every 4-6 hours afterwards. Do you take the Vyvanse and Adderall for ADD/ADHD, or for something else? I know that at one point, I was taking Provigil to combat Fibro fatigue because I was literally falling asleep on my feet. However, that turned out to be from the Topamax, then Lyrica I was taking, and once I went off those, the nodding off went away.



As my doctor will tell you, I'm the most odd case in how I react to meds. If there is a really nasty rare side effect, you can almost bet I will end up with it (even not knowing the side effect existed!), and if it says it will do one thing, like a narcotic making you sleepy, it will keep me up. Makes the poor guy's job pretty challenging. He once told me that he wanted to put me in a plastic bubble so I couldn't injure myself or get sick because of my freakish reactions to meds. The poor guy is half afraid to give me anything that hasn't been on the market for a very long time. It took us several years of trial and error to get my med regimen to the point where I am functional.

Christine - posted on 08/17/2009

jeanette, what controlled pain release med do you take? i wonder if he lets you take it every 8 hours so that as one dose is wearing down, the other can be kicking in. i wish i could take an extended release med at least at night----i might wake up a little better in the morning. i used to take vyvanse when i could afford it (stimulant) and it takes 2 hours to get the maximum dose into your blood stream. it used to work pretty good for me if i could wake up around 4 am and take my vyvanse, soma and norco and then go right back to sleep. then i could wake up about 6 or a little later and actually have my brain working and be pain free. my kids are more likely to get breakfast cooked on those days, too!! i have to take a generic adderal twice a day, now, and i don't know how long it is supposed to last or when i should be taking it. i find it hard alot of days to keep my eyes open lately if i am trying to read.

Jeanette - posted on 08/17/2009

I think my doc does a pretty good job with my medication, but like you, won't increase the amount of Soma I can take, even though, like you, it does seem to help more with various symptoms. Odd thing is, I take a Schedule II controlled release pain med, which is normally taken every 12 hours, but he writes it for me to take every 8 hours as needed, but he won't increase the Soma level, which is like a Schedule IV I believe. Makes no sense to me, but since doctors are getting more and more leery about treating pain patients every day, and he's been treating me willingly for a while now when even specialists wouldn't touch on the strong pain meds, I'm not going to argue!

Margaret - posted on 07/13/2009

im finally receiving enough pain meds for the first time in over 2 years since the original injury. although even then I deliberately missed doses simply to let my stomach and system have a rest from them.



the first month of them there were side effects and I had alot of trouble concentrating etc but that has passed and I can function on them not entirely pain free but I can function some of the time.



this week though iv been sleeping alot though...but that isnt due to pain that is due to antihistamines because I had a severe allergic reaction...so im on even more meds than usual atm.