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 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 |