life revolves around meds :(

[mommyto3angels]

I'm not sure how the rest of you feel but since I was diagnosed it seems my life has started to revolve around my meds as to how I feel......I'm given pills to control fatigue, pain, spasm, depresion, anxiety, everything that seems to bother me. Then when I run out and have problems with refills I go thru withdrawls


I want to get off everything but the thought of withdrawls scares me ..... I don't consider myself a addict like the ones who take pills to get high but I am depend on them to have a normal life. I am tired of living like this. It bothers me as much as living with this horrible disease. Does anyone else feel this way??????



I do have a plan, I am slowly introducing narural vitamins to my system and once I'm fully on them my dr is going to help me slowly wean myself off my pills slowly. The thought of this scares me to death but I feel it has to be done. I can not stay dependant on all these chemicals for the rest of my life. I also wonder if anyone else has done this?

[rdmc]

I understand the feeling of being overwhelmed when you go from taking no pills to needing to take pills. I don't take a whole slew of pills, but I take a good many. And I, personally, see no need to get off them. If I'm going to have to live with this disease, and try to maintain some semblance and QOL...I'm going to take every symptomatic med that works.

I have meds that I take on a regular basis, and then meds I take as needed. The meds on a regular basis are for spasm, spasticity, BP, etc. The meds I take as needed are for pain, and breakthrough spasm.

I also have a boatload of supplements I take that I think help too...but I don't think those alone would quell my symptoms enough to make my symptoms bearable.

Have you thought about how you'll deal with these symptoms once you come off the meds? Will you be able to do what you need to do in order to maintain your "responsibilities" whatever those may be.

I understand if you're worried about addiction, but taking a pill that helps you maintain function isn't in my book addiction. But the definition of addiction differs for every person, I imagine, and that's between you and your doc. I will say that I have gone without meds for days, when a refill didn't come through and what I experienced wasn't withdrawal, just a return of symptoms (which wasn't pleasant...but I wouldn't classify it as withdrawal, just more pain, or more spasm, etc.)

However you plan to do it, why not try to get off one drug at a time, and then see if your "natural" substitute works.

If it wasn't for "better living through pharmaceuticals" I wouldn't be walking or talking because the meds I take (and I have a pump) help me do both.

Best of luck in your venture. If your doctor's on board, then that's a good thing.

[onlyairfare]

I take more herbs and supplements than I do prescription meds but I still take a lot of prescriptions - Provigil so I can work, Keppra so I don't have seizures, Zanaflex for spasms, gabapentin and opiates for pain. The last 3 make me sleepy so I can only take them at bedtime, not when I am working.

It is a lot of medication, but then I am still ambulatory and working full-time after 35+ years of MS, so I am not going to get all upset about a pill count. Mostly I am just glad I can live a near normal life. If it takes pills to do that, so be it. Why stop the meds and be miserable with pain, home on disability instead of at work, and unable to drive because of seizures?

Give up pills so I can sit at home and vegetate - no thank you! I believe in "Better living through chemistry."

[wally8]

I was just having a dicussion with my husband this morning about all the drugs people with MS are prescribed for all their different sx and the problems that can arise from them, as in, addiction and not knowing what sx are from ms and what sx are side effects of the meds not to mention the damage these drugs do to our internal organs
This scares me so much that I have been doing a fair bit of research on the topic, and have decided that rather than go on a cocktail of prescription drugs I will give Medical MJ a go first. This in itself will course alot of problems for me, some I can see, some I cannot. But for ME the pro's out way the cons.
My heart goes out to you mommyto3angels I can only imagine how difficult it must be to try and find sx relief only to have the cure become the problem, I think we can all agree MS SUX.
Hope you can find some middle ground that works for you
Kathy

[mommyto3angels]

My reason for wanting to taper off most of the meds is I'm not sure if the MS has gotten worse or if alot of it is side affects from the meds.....

Ive been diagnosed for 5 years and all these meds basically from major flare #1.The dosage has been upped over time but still I have always taken them. In the begining I just did anything the dr's said hoping not to get worse, now I'm questioning them. Would alot of my symptoms went away over time? IDK because I was never given the chance, I take over 15 pills a day plus the take as needed ones..... I feel like I was overmedicated from the begining. I want to find out for myself if I can live a normal life without constantly popping pills. I know alot of people won't understand what I;m saying but I just hope a few do

[onlyairfare]

I didn't take any medications until 10 years ago (I have had MS for 35 years) when my symptoms got worse. Since the meds are treating symptoms, not the disease itself, if you have the feeling the meds could be the problem, then your weaning down makes sense.

You've talked with your doc about a weaning plan so you can do that safely, so give it a try! The worse that can happen is you find out you DO need symptom control meds.

I thought you were worried just about taking any pills. I think if they help you, take them. But if you aren't sure, try reducing/eliminating them and see.

Have you ever thought of seeing another doctor for a second opinion on medications? Some doctors are very aggressive, prescribing a pill for everything, while others are more conservative. And every one of them should consider the possible interactions and side effects. One of my favorite doctors (we moved away is why I changed) told me "Oh I don't chase a pill with a pill." That is, he doesn't give me one pill, then when it causes side effects, give me another pill for the side effects from the first pill.

Good luck with whichever path you try. No question, MS sucks.

[rdmc]

My reason for wanting to taper off most of the meds is I'm not sure if the MS has gotten worse or if alot of it is side affects from the meds.....

Ive been diagnosed for 5 years and all these meds basically from major flare #1.The dosage has been upped over time but still I have always taken them. In the begining I just did anything the dr's said hoping not to get worse, now I'm questioning them. Would alot of my symptoms went away over time? IDK because I was never given the chance, I take over 15 pills a day plus the take as needed ones..... I feel like I was overmedicated from the begining. I want to find out for myself if I can live a normal life without constantly popping pills. I know alot of people won't understand what I;m saying but I just hope a few do

I understand what you're saying. As I usually tell anyone who's afraid to start a new med (usually it's a DMD or one with lots of side effects)...you are in control, just because you start doesn't mean you can't stop.

And that's the place you are in your life, you want to stop. I just want to stress that there's no weakness in having to take meds, so when you get off the meds, if the natural therapies and supplements aren't helping you maintain a quality of life, stay opened minded about going back on, if that's what it takes for you to be able to "live"

You're also right in saying that sometimes there a fine line between what is MS and what is a side effect from a drug. I'm sure some of the sleepiness I feel sometimes is due to a med, and not the MS (that's why I really restrict taking a couple meds that are Rx to me during the day...because I know I'll be out like a light.)

And with your doctor helping you, I'm sure you'll discover the right path for you with meds and/or supplements.

[valeriem2220]

I really do know what you are talking about.
I was the type of kid growing up that my Mom would have to force an aspirin down me when I had an ache or pain because I never wanted to take any pills for anything. I was 17 when I pulled a muscle in my neck and she crushed aspirin in a spoonful of water and forced it down my throat.
Last year was a whirlwind of Drs visits and different medications to try, some with good results some with horrible results, and I would find myself in tears because of all of the pill bottles that were always right next to me as a reminder that something was wrong.

When I finally got my diagnosis in October and really found out what all of these symptoms were from, and found out that I didn't have 50 things wrong with me but only one that was causing ALL of it, I was relieved, but here came more prescriptions and more pills to take, and daily.

I didn't want to and I fought it every step of the way, even with my neurologist getting upset with me for not taking the meds he would give me, yes I am a very difficult patient and I am trying to curb that.
I do still have my bad days, I call them the days when my stubborness comes through, although it could be my denial in reality, when I say "Nothing is wrong with me, and these Drs just really don't know!"

I try to pass my symptoms off as something other than a "disease", Oh I just need new shoes that's why my legs hurt, the new lighting at work is why I get migraines, THEY need to change this, I need to sleep more that's why I'm tired, of course not even thinking that I had just slept for 12 hours, oh I have worked harder tonight at work or the machine is running better so I have had to lift more that's why my arms have no strength, I have a pinched nerve that is why this spot or that spot is numb, I just need to stretch. I am just getting older so this stuff happens, I really HATE it when that one comes to mind, I will NOT grow old gracefully....

I did try to stop taking my meds a couple of months ago and was reminded very quickly, within days, why I take my Baclofen, I was on the lowest dosage so no worries there with tapering off, I had forgotten how much pain I had actually been in for 5 years before that until I stopped the med.

My legs wouldn't even function one the spasticity started up full force again, I was almost in tears with every step I took again, I had a hard time getting into my vehicle because I couldn't bend my legs easily. After the 3rd day of no meds I said...."Oh yeah" I won't even get into the fatigue and the burning skin, the spasticity and the pain involved was enough.

Even though I despise taking meds and have despised it for 41 years, I do enjoy actually being able to function now. These meds have changed my life for the better now. I feel so much better.

I used to say Sudafed was a medicine from God, because it made me feel so much better during allergy season, but I do believe Baclofen has passed Sudafed up. I was convinced for years that I was not going to be able to stay at my job because of the pain in my legs and had been looking for other options and stressed out about finding some job in my dieing town that would support my children and give me health insurance, now with the Baclofen, my employer is stuck with me for a while. I may actually be able to do it. I love my pain level going from a 10 every morning after work to maybe a 4.

I am looking at all of my pill bottles right now and I can cringe while looking at them, but I just remember how they have also made my quality of life so much better and I thank God that we have finally gotten to the bottom of this and we are working on making me feel so much better slowly and I will do what I have to to continue to feel the best that I can, for me and my family, no matter what it takes.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[wally8]

Check out the web site Phoenix tears, it has some very interesting content on sx management, also for those trying to ween themselves off of all kinds of drugs prescribed and illicit, granted this form of medication is not for everyone we all have our own personal ideas on the subject. But if you are already suffering because of the amount of prescription meds your on, I would say having an open mind and doing some research into it for yourself cant hurt Also if your interested watch " Run from the cure" you will find it at the same site.
Kathy

[littlelulu]

Tapering off of medications.......

Hi Mommyto3angels

Have you started tapering? I've tapered and am tapering off of a few things for the exact reasons you mentioned. this is not easy.... if you care to commiserate.... please don't hesitate dropping me a note. I would love to hear from you.

If not, I hope you're doing okay, and are having fun with your 3 little angels (great screen name)

Best-
Littlelulu

[militarymom2]

Regarding your leg pain.

I really do know what you are talking about.
I was the type of kid growing up that my Mom would have to force an aspirin down me when I had an ache or pain because I never wanted to take any pills for anything. I was 17 when I pulled a muscle in my neck and she crushed aspirin in a spoonful of water and forced it down my throat.
Last year was a whirlwind of Drs visits and different medications to try, some with good results some with horrible results, and I would find myself in tears because of all of the pill bottles that were always right next to me as a reminder that something was wrong.

When I finally got my diagnosis in October and really found out what all of these symptoms were from, and found out that I didn't have 50 things wrong with me but only one that was causing ALL of it, I was relieved, but here came more prescriptions and more pills to take, and daily.

I didn't want to and I fought it every step of the way, even with my neurologist getting upset with me for not taking the meds he would give me, yes I am a very difficult patient and I am trying to curb that.
I do still have my bad days, I call them the days when my stubborness comes through, although it could be my denial in reality, when I say "Nothing is wrong with me, and these Drs just really don't know!"

I try to pass my symptoms off as something other than a "disease", Oh I just need new shoes that's why my legs hurt, the new lighting at work is why I get migraines, THEY need to change this, I need to sleep more that's why I'm tired, of course not even thinking that I had just slept for 12 hours, oh I have worked harder tonight at work or the machine is running better so I have had to lift more that's why my arms have no strength, I have a pinched nerve that is why this spot or that spot is numb, I just need to stretch. I am just getting older so this stuff happens, I really HATE it when that one comes to mind, I will NOT grow old gracefully....

I did try to stop taking my meds a couple of months ago and was reminded very quickly, within days, why I take my Baclofen, I was on the lowest dosage so no worries there with tapering off, I had forgotten how much pain I had actually been in for 5 years before that until I stopped the med.

My legs wouldn't even function one the spasticity started up full force again, I was almost in tears with every step I took again, I had a hard time getting into my vehicle because I couldn't bend my legs easily. After the 3rd day of no meds I said...."Oh yeah" I won't even get into the fatigue and the burning skin, the spasticity and the pain involved was enough.

Even though I despise taking meds and have despised it for 41 years, I do enjoy actually being able to function now. These meds have changed my life for the better now. I feel so much better.

I used to say Sudafed was a medicine from God, because it made me feel so much better during allergy season, but I do believe Baclofen has passed Sudafed up. I was convinced for years that I was not going to be able to stay at my job because of the pain in my legs and had been looking for other options and stressed out about finding some job in my dieing town that would support my children and give me health insurance, now with the Baclofen, my employer is stuck with me for a while. I may actually be able to do it. I love my pain level going from a 10 every morning after work to maybe a 4.

I am looking at all of my pill bottles right now and I can cringe while looking at them, but I just remember how they have also made my quality of life so much better and I thank God that we have finally gotten to the bottom of this and we are working on making me feel so much better slowly and I will do what I have to to continue to feel the best that I can, for me and my family, no matter what it takes.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

Hi, I also have extreme leg pain!! How would you describe your leg pain?

[alliesmommy]

Hi, I also have extreme leg pain!! How would you describe your leg pain?

Hi

I also have terrible, excruciating constant aching leg pain. Dr just upped my gabapentin to 2000 mg a day. Wondering if there is something better?

[melwah]

Hi mommy :P
I absolutely know where you're coming from. I was dx in Feb this year, before that life was pretty normal/manageable. I had loss of sensation in one hand that I assumed was a pinched nerve, my terrible anxiety was under control, I just rested when I felt worn out and put up with the tingling when I bent my head down. I was only on one low dose of an anti-depressant and a contraceptive pill per day.

Then I started getting concerned about my hand, gp suspected carpal tunnel and sent me to a neuro. Had an MRI two weeks later and immediately dx with MS. I started rebif two days later, and after the three week titration period, life has not been the same.

My anxiety became unbearable, I developed major depressive disorder on top of the horrible flu like symptoms. I went through so many changes to medicine to get the dose/type/combination right, and after no success came off rebif and tried copaxone. After a couple of weeks I saw major improvement, started thinking about returning to work, then got hit by the fatigue monster SO bad.

Got to the point I couldn't tell if my symptoms were from MS, side effects of all the chemicals, or something else entirely. I had been sitting home for months waiting for things to improve, when I just snapped and needed to try something else. I no longer knew what my "baseline" was to compare what I was experiencing to.

So I saw all of my doctors and made a plan to eliminate all medicine from my system, to give my body a drug-holiday and actually work out what I'm feeling from me or MS and not all the meds. It took about 6 weeks to slowly wean off everything, and *of course* I caught my fiancées horrible flu straight away so I'm on antibiotics and flu tabs for that, and its definitely made some MS stuff worse, but gosh I'm looking forward to once the flu has gone and I can meet "me" again.

There were some mild withdrawal symptoms I experienced, mostly just severe headaches, but to me they are worth the possible benefits

I don't plan on being off all the drugs forever, I saw an improvement on copaxone so that will be the first thing I reintroduce, but I'll be going slowly and keeping a thorough track of all my symptoms/side effects, and hope to be able to better gauge the benefits and what dosages I actually need.

Sorry for the massive post, but I hope it helps a little! Good luck with whatever you decide to try, please keep us posted

[mommyto3angels]

I'm starting to try other options

Since this post I went to a pain manament specialist. We went over my list of meds and how they affect me and which ones REALLY help. We decided to start weaning me off the Cymbalta first. That one really doesn'y help me at all and I have the worst withdrawls every time I've tried to stop them before. Were gonna wean each of the pills that don't work one at a time. After the Cymbalta we will wean me from the Lyrica. I never got any relief from that on either.

The Topomax I did get relief from in the begining but that only lasted about a year. We are hoping after the other drugs are out of my system it will work more effectivily again if not we can either lowere the dose for a lil while then go back to the original dose or just up the dose but I have awhile to decide that.

As fae as pain meds he took me completly off the vicoden since it no longer worked. I now take Norco which has alot less acetamimaphen so it's easier on the liver and I take it less.I went from 3-4 vicoden a day down to 1 or maybe 2 norco daily. Were also doing a injection of steriods directly into my spine (sorta like a epideral) it's not cortisone just a high dose of steriods. That can be done once every 4-6 months but will reduce the inflation inside my body.I hope it helps.