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Old 03-16-2009, 01:46 PM   #1
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applecollector HB User
Angry I don't think I am ever out of a flare anymore

seems it is just getting worse and worse with not much down time.

Med I take are

Wellbutrin---for depression most of my adult life
soma---muscle relaxer
nexium---acid reflux
(which I am off of right now as the copay doubled--but after indigestion all night last night and throwing up---think it is time to break down and pay the extra
Klonopin---pain, anxiety, body jerks etc and restless legs
boniva---bone loss
vitamin D
tramadol

also have provigil for chronic fatigue

I have a pain under right rib cage that goes all around to back, this was better, but in another flare and seems each time is worse that before.

I really need to make appt with my Dr---but I just hate going anymore--I wind up in tears then they think it is all emotional.

Thanks---I am mostly venting here

Last edited by applecollector; 03-16-2009 at 03:06 PM. Reason: add a med

 
Old 03-16-2009, 06:02 PM   #2
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Re: I don't think I am ever out of a flare anymore

It might help to write down exactly what your concerns are, and what you want the doctor to do for you. You can then read the list out, which might remove some of the emotional "charge." Once you've got everything written down, bring a pleasant book or magazine to the waiting area. Bring a snack or anything else you might need to stay comfortable.

About flares: I've had pain every day of my life since I was eighteen. I define a flare as pain bad enough to make me a nasty person, lasting more than a couple days. By that definition, I only flare about once a year or so.

About the Nexium: You need to taper off that kind of drug, there is a rebound or "withdrawl" period if you stop suddenly.

 
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Old 03-16-2009, 06:14 PM   #3
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Re: I don't think I am ever out of a flare anymore

well wish I knew about the rebound effect---

I know most meds you have to go off slowly but didn't think of that

plus in Dec when I seen the Dr I told her anything that was not available in generic i would have to go off and she said that would be most of my meds and really said that might be a good thing.

I just ordered the nexium---UGH spending that much---which I know some have to pay even more.
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Old 03-17-2009, 02:28 AM   #4
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Smile Re: I don't think I am ever out of a flare anymore

I also pretty much live in pain everyday. But flares kick my feet out from under me & make it hard to even consider getting out of bed. But I swore to myself that I would never let it win, so no matter how bad it is, I at least get up everyday, get my husband breakfast on work days, pack his lunch, ect. I just don't bother with household stuff until I am able. I find new ways to do things I find difficult. I will get up and do things for 5 minutes at a time instead of finishing a task completely. Etc.
Anyway---
Have you tried supplements instead of just medications??? I take Myomalic which is Malic Acid, B6, Apple Pectin, Magnesium,etc. It really helps, not sure why, just know it does.
I also use Valarian & Passion Flower extracts.(Relax muscles and help with sleep)
I also have acid reflux but can mostly hold it some what in control by eating right, adding ginger(drinking decaf chai tea, with ginger tea or chamomile tea added at same time), ect.
Also if I don't drink enough water my flares are really, really bad. The more medications you take, the more water you probably should drink. Before I take anything for a bad flare I drink at least a quart of water and wait at least 1/2 an hour. Unless I have been drinking enough water in the first place. How much is enough is up to your body as far as I am concerned. I drink alot of water. between 5 and 8 liters a day, sometimes more, esp during thunderstorm season. Not counting the other liquids I drink.

I haven't been able to talk my new Doctor into prescribing it yet but found that promethazine(phenegrin) ? on spelling, worked better on an as needed basis then prilosec and several others I have tried. Never tried Nexium but I try to avoid Highest tier co-pays as well.
Soma never really worked for me. I do keep flexeril on hand but try really really hard not to take it as it messes up my eyesight. I do take diazepam and find that, that helps relax my muscles but I am one of those people that drugs tend to work backwards on. If I take pain pills, diazepam etc I am more apt to be up all night then to get tired. When he tried a stimulant to help me have more energy it knocked me out completely for almost a day, unfortunately that wore off after about a week but it was the first time in a long time I actually got more than a few hours sleep at a time

Another thing that has helped is Chiropractic and to my dismay Acupuncture. My husband tried for 5 years to talk me into acupuncture and I kept avoiding it, then during a really bad day, with bad headache etc I made an appointment with my Chiro's Dad (Father and Son practice) The Dad also does acupuncture. I reluctantly agreed and was amazed. Headache was gone before I left the office and some of the fibro pain in upper back, shoulder, neck area lessened. When I have bad flares and my muscles tense up I tend to pop out some of the ribs in my back. Sounds like that might be happening to you. So if you are open to alternative medicine's like Chiropractic, check it out, but also remember not all Chiropractor's are the same. When I moved here 4 years ago it took me 4 tries to find one that worked for me. Don't expect instant results, let him/her know upfront about your fibro, and ask everyone you know for a reference. Word of mouth is best way to find a good Chiropractor. Unfortunately sometimes adjustments will actually cause a flare but it is still worth checking into.

Before trying supplements !!!!! Make sure they won't interact with your current meds. Talk to your pharmacist and/or Doctor if he is open to alternative medicine.

Also remember that most medicine's that can help with pain (narcotic) or muscle relaxers can cause rebound pain if taken too often. Even OTC drugs can cause a rebound affect that can make things worse. Sometimes less is better.

Start journaling to find what makes things worse, foods, weather, activities, etc. And when you have a "good or better" day. Don't try catching up on everything you let slide because you were having bad days. I am my own worse enemy when it comes to flares. If the laundry has piled up or I haven't gotten to clean out the fridge for a while I try to do it all on a good day and then I am in bed for four days. So it is easy for me to say to only do things for 15 to 20 minutes out of every hour on good days but I have a very hard time listening to myself, even though I know what it will cause.

Most of all. Don't give up. It is alright to cry, vent, get mad but just don't give up and let it win. Find a reason everyday to get out of bed and find something beautiful. A sunrise, a flower in bloom, something that makes you smile even if it is through tears of pain.

As for your doctor, maybe you should look for another. Or write down what you want to say, cover, etc. And give it to his nurse for him to read before you go in. Keep a copy for yourself, then if you get flustered or emotional you won't cave and leave feeling like it is all in your head. It isn't. This board should prove at least that much to you.

I am new to this board but I am sooooo glad I found it. It is a huge help just knowing I am not alone. You aren't alone either!
Rae



Quote:
Originally Posted by applecollector View Post
seems it is just getting worse and worse with not much down time.

Med I take are

Wellbutrin---for depression most of my adult life
soma---muscle relaxer
nexium---acid reflux
(which I am off of right now as the copay doubled--but after indigestion all night last night and throwing up---think it is time to break down and pay the extra
Klonopin---pain, anxiety, body jerks etc and restless legs
boniva---bone loss
vitamin D
tramadol

also have provigil for chronic fatigue

I have a pain under right rib cage that goes all around to back, this was better, but in another flare and seems each time is worse that before.

I really need to make appt with my Dr---but I just hate going anymore--I wind up in tears then they think it is all emotional.

Thanks---I am mostly venting here

 
Old 03-17-2009, 08:11 AM   #5
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Re: I don't think I am ever out of a flare anymore

Nexium isn't generic, but Prilosec OTC is. I get generic omeprazole from my warehouse club (NAME escapes me) for quite affordable. Studies show that gram per gram all the PPI's are very similar in their effects.

If you want to quit, the pills are time-release, so you can't taper the dosage easily. But you can replace it with ranitidine (Zantac) and then slowly lower the dosage of that.

 
Old 03-17-2009, 09:28 AM   #6
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Re: I don't think I am ever out of a flare anymore

Medco does have Omeprazole genernic for nexium

I checked last night went to order the nexium after order find out I could get the generic also pantoprazole sodium


and Prilosec OTC cost 27.00 for 40 pills I am not any better off with paying $65.00 for the nexium
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Old 04-26-2009, 05:14 AM   #7
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Re: I don't think I am ever out of a flare anymore

Have you considered the anti-inflammatory foods diet? Also, if you have food allergen testing you may find you are allergic to a lot of foods. I have over 25 food allergies. Reducing those foods or cutting them out completely has helped my fibromyalgia except when there is a lot of rain - even then, it could be because of mold allergy I have. I have been diagnosed with fibromyalgia for several years and this isn't a cure for it. A lot of doctors recognize that foods can affect our health along with nutrition. The only oral pain medication I use when it is really bad is Toradol and it really helps me. I only use it when it is really bad and usually it takes one dose. Lotions with emu oil have helped me with leg trigger points, as well as massages.
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Old 04-26-2009, 07:15 AM   #8
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Re: I don't think I am ever out of a flare anymore

well I raked up the $65.00 co-pay and back on my nexium--that OTC stuff I had to take twice the amount to even begin to help---even Dr said the OTC would have to be doubled or more, so cost wise it was cheaper to buy the nexium.

So the acid reflux is better and pain some better, but finding out I have an enlarged liver may be the reason for pain under rib cage.

I see the dr again for that the 30th

and as far as changing family DR's again, I wish the one I had for 13 years before I decided to change would take me back. I don't care anymore finding the right drug, having all this and that test done. Just control my meds and watch for any other ailments that might come along. This new dr doesn't even take my weight or blood pressure.

I am not a beg believer in supplements, for one they are way more expensive that my meds.

I am going to start slowly to try and cut a few meds out and see what happens.

and sleeping my life away is not that bad---just wish God would see fit to call me home as I am more than ready---my life sucks in every way
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Old 04-29-2009, 09:23 AM   #9
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Re: I don't think I am ever out of a flare anymore

This all started for me back around 1993 and I would have times when I felt pretty good and other times that I wasn't. I had to work through them. A lot of the time I had no medical insurance...kind of like NOW. Anyway, when I finally had insurance I went to the doctor and she had no real DX for me...and she didn't believe Fibro was legit so I didn't get a DX of that. However, in the last maybe 5 years or so there is no let up. I don't have flares anymore. It's constant...24/7/365. Period. I'm loaded up with medications and the only thing that really helps me is Ativan. It uncramps my legs and also helps me sleep. The pain?? I have stuff for it but it doesn't help. I'm backing off my medications now and trying aspirin and stuff. Nothing is helping anyway.
Take care,
Sharon

 
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