New here...looking for advice: memory issues and treatment

Hi everyone.

First, I'm sorry you all are here. It means you feel the way I do and I wouldn't wish it on anyone.

I was diagnosed officially about a month ago, but the word "fibromyalgia" has been in my lexicon since 1996. Back then, fibromyalgia was a "fake" diagnosis...for doctors that couldn't figure out what was wrong with you, so my doctor didn't want to be one of those people.

In any case, it's been a long road for me, and the pain is some days intolerable, but what is really scary to me is the memory issues. I used to be so smart, so quick with an answer, so easy to find the right words, and I struggle so frequently sometimes now. What's worse is I am an event planner by trade and this job relies very heavily on my ability to remember details and be organized.

Does anyone have any tricks, any devices or apps or tools or anything they use? I find myself suffering from a bit of pride as well, still convinced that "I'll remember it".

My grandmother passed about 10 years ago from Alzheimer's, so this aspect of fibromyalgia is particularly scary to me.

Also, I am on nortriptyline to help with my issues (50mg) a day. Has that helped anyone else? If so, how long did it take to "kick in"? If not, what do you take that helps?

I wish you all the best health.

Hi JudZie, welcome to the forum. You're in a very good place for friends and support.

I don't care for medications, I usually experience side effects and the med does nothing to help me so I do everything I can naturally to help myself. I've had fibro for about 12 yrs.

I stretch x2 a day, I take short walks x2 a day, I eat very healthy (for me eating something I shouldn't makes my fibro symptoms much worse), and I take supplements. I also have been diagnosed with sleep apnea so I have to take sleep supplements to try to get a good night's sleep.

I have to watch how much I do, how much I lift, and stay away from environments that would affect my allergies.

Chiropractic care has also helped me and a neuromuscular massage therapist. I still get my flares, I'm still in constant pain but I know it would be worse if I wasn't trying to take good care of myself.

Good luck to you.

Welcome!

Lists are imperative. If I think of it, I write it down. The list resides in the same place, on my desk at work and then on my table at home.

My calendar is also key. Meetings and appointments get written in there immediately.

I do find myself having to take mental breaks at work. I do play puzzle type games.

I also read a lot.novels, magazines, newspapers... Not so much non-fiction, cause that's too much like work.

I have not found any supplement or med thathelps this. But, I have not really looked. I developed a system and manage. It's not ideal. But, my focus and attention used to be really good, so I guess I compensate.

When I do a blooper, I just let it go.

Welcome to the trenches.

Hi Judzie. I'm glad you finally got the diagnosis, and looking forward to getting to know you. But I am sorry you have Fibro.

I felt much relieved when I found the doctor who diagnosed me in 1993 - one, because someone finally got it, and two, because then I started treatment that actually helped. The first thing I was put on, back then, was Nortriptyline...for pain and especially for sleep. I'm still on it; I take it before bed. I went from 50 mg to 25, and now am on 30 following major surgery last year.

I understand the memory fears very well - in fact, I just started a thread a few days ago about this very thing! What a mess. It does help to just laugh it off, but sometimes that's pretty hard to do. The only game I play is Spider Solitaire. Not very complex, but then, we have to start where we are...besides, I find it relaxing.

Hope to see you around more.

Debbie

Hi, JudZie, and welcome!  Good old fibro fog.  It is frightening when you first get it and I, too, thought I was getting Alzheimer's.  My grandmother died from that illness.  But it turned out to be the fog.  I have even forgotten my phone number and had to pull out my checkbook to get it.  Now talk about embarrassing.  Same with trying to start my car with the key to my freezer...on two different occasions!  Yikes!  But you got to laugh or you would be crying a lot.  As Joy mentioned, when I used to stress over it, it just made it worse.  So I will laugh and move on.

 

I hope you have a Daytimer.  Those are great for information to remember.  If I don't have it written down, I easily can forget.  But you know what, there are perfectly healthy people who forget things and don't think a thing about it.  We tend to be very hard on ourselves.  I just bet you are doing just fine!

 

I use malic acid/magnesium supplements and vitamin D3, along with ibuprofen with food and Tylenol to help with pain and fatigue.  I also take a muscle relaxer, Robaxin, that has helped me significantly.  For me, this drug does not make me groggy....just the first dose.  That will put me to sleep but after that, I have no problems at all with it.  I also do daily stretching exercises and a daily exercise like walking or swimming.  The more you keep moving the better it seems to be for you.  I do pace myself, too.  It all gets done but in a different time frame. 

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  We do have to be our own advocates with this illness...as you have already found out.  I do hope you have found another doctor or that your doctor has finally emerged from the Dark Ages with this illness!  It's important to have a doctor that believes in fibro.  After all, it is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization...just to name a few.  Any doctor that doesn't know about and treat fibro is WAAAYYYY behind in his/her education. 

 

I wish I could be more help to you.  It has to be challenging with the type of job you have but you will find ways to work around it so  you can continue to do what  you want to do.  I have managed that and have had a fully and enjoyable life in spite of this illness.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine