went to doctor.....

How frequently do you experience flares?
0
not very often--for the most part I rarely have flares. - 0.0%
5
every now and then--my flares are few and far between - 20.8%
12
more often than not--I have flares more than not. - 50.0%
7
all of the time--I feel like I am constantly iin a flare. - 29.2%

 
New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

jsi1261
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 4/7/2009 8:17 PM (GMT -7)   
Hey everyone! I thought I would post what transpired at my doctor's appointment on Monday. I brought up the Malic Acid/Magnesium thing and he told me to start out with 800mg of Malic Acid and 200 mg of Magnesium. He wants me to work up to 1600mg of Malic Acid and 400 Magnesium. He told me that Malic Acid can sometimes cause diarrhea, but with IBS that won't really matter!! I am hoping that this will help me.
He also put me on Lasix because I am so swollen. I had a bout of congestive heart failure last year and had to have an angiogram--my heart is perfectly fine with barely any cholesterol, so nothing is wrong there. I just had really bad fluid on my body. Well, it seems like that fluid is trying to make a reappearance, so he started me on Lasix to try and get rid of it.

I asked him about flares. I told him how I just don't understand how fibromyalgia can be so different in symptoms.. He said that some people can go a long time in between flares, but other people can have flare after flare. I told him that I feel like this fibromyalgia never goes away and that I am constantly in a flare. He said that some people are like that and this is how fibromyalgia affects them.

I guess that this is just my journey to take. I have to accept that I can no longer do the things that I used to, so in doing so, I have to move forward with as positive of an attitude that I can.

So, I want to post a poll about flares and how frequently we experience them. Should be interesting, huh?

Thanks for reading,
Julie

pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 4/8/2009 3:36 AM (GMT -7)   
Good idea, Julie!!
I'm glad your doctor's appt went well. I hope you start feeling better soon.
Sounds like you have a good doctor.
Hugs,,
Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 4/8/2009 6:44 AM (GMT -7)   
Hi, Julie!  I read an article about a scientific study that says you need to reach at least 2,400 mg of malic acid before you notice any difference in pain.  I put that article in the malic acid thread in the Fibro 101 thread.  You might want to ask your doctor about that next time.
 
I have Crohn's disease with an ostomy and haven't had a problem with the magnesium part of it.  But, I did start out slowly and didn't add more magnesium until I knew it would be alright.  You don't want a lot of diarrhea because that can dehydrate you. 
 
It sounds like you found a doctor that believes in fibromyalgia and will help you.  That's great!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 4/8/2009 8:35 AM (GMT -7)   
Sounds like your Dr. knows about fibro and it went well Julie. I voted on your survey and put I flare more often than not. I think the winter/cold played a big part in that and now with the fluctuating weather. I hope that changes with milder temps once spring and summer get here.
 
I too hope you start feeling better soon and good luck with the malic acid/mag-
 
GamJill
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


K9
Regular Member


Date Joined Nov 2008
Total Posts : 263
   Posted 4/8/2009 12:21 PM (GMT -7)   
I have no idea what a flare is...even though I've read on here for months now. I slowly over time got worse and worse, was dx with fibro...and it's what it is. It never gets worse...but so far doesn't get better either.
I have Fibromyalgia, and nothing else!
I take Lyrica 225 mg/day and Tramadol (150mg time-released) and amytriptilene 7.5mg


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 4/8/2009 12:25 PM (GMT -7)   
I answered more often then not because I never have what I would call a good day. I pretty much go from feeling lousy and force myself to do everything, to a state of wanting the situation to totaly leave me alone and I just cycle through every week like that. But I don't think I am treating myself well either. The pain killers, anti-anxiety meds, anti-nerve pain drugs drag me down so much, I end up cycleing Nicotene and coffee to function on them. I would probably do allot better treating myself with Malic Acid and Magnesium, slowly scaleing up my excercise and stamina, and getting more doesn't do harm treatment like heat therapy and massage, and making myself rest instead of grabbing another cup of coffee and sucking on a Nicotene lozenge to make my body and brain able to function for a brief period of time. So my body probably is completely confused when I am tossing contradictory things at it everyday.

So I am probably my worst enemy on this issue, but you gotta do what you gotta do unless you have the capacity to change your circumstances and few can. Not directly what you were asking, but yes, as soon as I change my circumstances here in another week or so, taking Malic Acid and Magnesium and scaleing it up to where it should be is definitly on my list.

Edit: I wanted to mention on this that I did find in my experiment for about a month that I could absolutely make a very strong impact on the issues of chronic fatigue, mental fog, and a certain amount of the pain by tossing very large amounts of certain over the counter supplements. In my case I was useing per day, all the Vitamin C in asborbic acid form my stomach would tolerate, about 10,000 milligrams in devided dosages, about 600 to 800 milligrams of COQ10, D-Ribose at 15,000 to 20,000 milligrams, L-Carnetine at 1000 milligrams, Acetyl-L Carnitine at 1000 milligrams, and all the Magnesium I could tolerate by taking powered form in water to break it down in the stomach before it had a chance to get to the intestines and cause diahrea.

Doing all of this made me feel quite a bit better. Also probably cost about $300 dollars a month to do it. End of experiment since there is no way I could support that cost. So, I am going to try slowly ramping the Malic Acid/Magnesium thing since its addressing allot of the same issues my over the counter high priced cocktail was.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

Post Edited (Grailhunter) : 4/8/2009 2:47:16 PM (GMT-6)


NanaNan
Regular Member


Date Joined Apr 2009
Total Posts : 43
   Posted 4/8/2009 1:29 PM (GMT -7)   
Julie, I am glad that your appointment went well. As far as flares, I think it is a great idea to take a poll. It could give us all good information for when we visit our own doctors.

Thanks for doing it!
NanaNan

jsi1261
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 4/8/2009 5:31 PM (GMT -7)   
It's good to see so many responses to the poll. I think that we are all so different, so it is good to try and see where we are coming from. I wanted to say one thing about my doctor. He's my second rheumatologist and I have been seeing him for over a year now. My first rheumatologist didn't want to believe that headaches were part of fibromyalgia. WHAT??!! I just didn't care for her anyway, so I found my present doctor. When I called the office to make an appointment, I asked the receptionist if Dr. Ali treated very many people with fibro. She said that he did. So, when I had the appointment, I specifically asked the doctor what he thought about this illness and he told me that he definitely believes that it is an legitimate illness. I then asked what he thought about the nay-sayers that think this thing is all in our heads. He said the EXACT same thing that I think--those people should have this illness for one day and they would change their minds!! I don't think it would even take a whole day for them to be a believer!!

Having a great doctor is an absolute MUST. I have always believed in going to the best doctor that you can find. It's a partnership. If you are uneasy with your doctor or just aren't satisfied with his treatment, by all means--go to another doctor. We have to be our own best advocate.

Thanks,
Julie

Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 4/11/2009 3:34 PM (GMT -7)   
New to all this..so this might really be a stupid question.....don't people wiht fibro always have pain....24/7. My pain might be in my back in the morning but mid day it's moved to my leg.

doodie
Regular Member


Date Joined Apr 2009
Total Posts : 67
   Posted 4/11/2009 5:03 PM (GMT -7)   
Wow, I don't know what I would do if my pain never let up. When I have a flare my pain may come and go. It is a radianting pain that may last a couple of weeks (give or take). Along with all of the other symptoms, i.e. sleep, digestion, fatiuge & headaches. Oddly enough I have never had pain in the summer months. It has always been from November to now April. At first I thought it had to do with the cold weather, but I don't think that is the case. I just moved from Louisiana to Canada a year ago and the cold did not increase the flares. My most recent one, which is still going, has been my worst of all. That can't be caused by the cold because we are having warm weather.

I don't think I will ever understand this!

K9
Regular Member


Date Joined Nov 2008
Total Posts : 263
   Posted 4/11/2009 5:25 PM (GMT -7)   
Stari - not a stupid question at all. That's how my fibro is - I don't even know what a "flare" is, but unlike many others it seems I cannot work more than 4 hours/day for the past year, and I have someone do all my housework and prepare my meals. I am slowly getting better though....
I have Fibromyalgia, and nothing else!
I take Lyrica 225 mg/day and Tramadol (150mg time-released) and amytriptilene 7.5mg


Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 4/14/2009 5:36 PM (GMT -7)   
K9 Thank you so very much for your post.  I am sorry that like me you're in pain 24/7.  What do you think caused you to have fibromyalgia?
 
Take care and a very gentle hug!
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 5:44 AM (GMT -7)
There are a total of 2,732,900 posts in 301,070 threads.
View Active Threads


Who's Online
This forum has 151224 registered members. Please welcome our newest member, teacher2many.
247 Guest(s), 8 Registered Member(s) are currently online.  Details
don826, teacher2many, PeterK, dacarte3, Sherrine, fibrocushie, JaxCalvin, Traveler


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer