I don't even know where to start. When I was laid off from my IT Job and found the IT market flooded with new graduates willing to take the job at base pay I decided to reinvent myself - Since I had worked for so many years in healthcare settings in the IT arena, I chose to pursue my master's degree in Health Information Management. Recently I have found it more and more difficult to manage my studies. I just cannot formulate Thoughts! I can't remember simple things (IT related) that I have known for over 20 years! I feel like I am losing ME and it scares the crap out of me! Physically I am unable to do any kind of labor intensive work - I cannot sit, stand or walk for long periods of time (certainly not an 8 hour day) - and now I find that I cannot even remember basic things I have known for years and years.
Thoughts, Stories, Advice, Words of Encouragement ??
Thanks - Hellen (Genetrkr)
I have wondered myself about being on both Cymbalta and Lyrica . When I started on the cymbalta, I had a couple of days of reduced symptoms, but after a few weeks, the pain and insomnia became so bad I went in and asked for gabapentin as I had been advised by my aunt who also suffers Fibro (As well as Lupus) My Dr added the lyrica and amitryptaline instead. So now I take two cymbalta and a lyrica in the morning and a lyrica and an amitryptaline in the evening. The biggest difference I have noticed is that When I finally do go to sleep, the quality of sleep is better, and when I do wake up in the middle of the night I am able to go back to sleep easier.
I still can't think straight and still can't remember things I should know. On a brighter note - I am scheduled to see a rheumatologist (sp?) Mid April. . .
It is the one thing I really grieve. I taught English...I know my fibro is worse when I can't read... and when I am doing well
I can read anything and understand it. I just try to have more good days than bad.
I pretty much have the same problem. I can't remember basic every day thoughts. I'm afraid maybe it's the med. It seems to have worsen since taking lyrica.
I started a "pain journal" the beginning of March - it has progressed into a "symptom and Pain journal" . . . thank you for the encouragement!
Yes, I'm losing memory and concentration and its very frustrating and embarrassing. It's an actual problem, this fibrofog. Here's a picture of a normal brain and a picture of a fibro brain and a CFS brain. The more colors you see, the more active that area of the brain is. You can see that in our brain, there are not as many lit up/colored/active areas. We are getting brain damage. Lately a friend told me that her Dr.was concerned that her brain size was shrinking. He says it's probably due to Fibro or CFS. This an older pic, from back when they called CFS "CFIDS". The bottom picture is a new one from Dr. Oz's website about Fibro and the brain.
Hellen, a great big hug to you, first off!
It IS scary, isn't it? But as far as doctors know, fibro doesn't permanently affect our memories. In other words, the stupid memory loss goes in spates, just as the rest of fibro does. When we aren't having one of those spates, our memory and cognitive skills are intact. I know this is true of me. When I'm more tired, I tend to suffer more memory lapses. I am guessing that maybe your studies are using up a lot of your resources, making you more vulnerable and tired, ergo, more jags of memory loss. I strongly suggest getting more sleep and down time.
Other than that, I'd suggest pacing yourself. If you have a lot of reading to do, break it down so you're not doing it all at once. Then take a break. Relax some and then try again. Leave some for another day if you can't do it all at once. Pacing is another "must" for fibro patients. Underline important texts and highlight it if necessary. Take another break. Pacing often does allow us to finish something that we couldn't accomplish otherwise.
I hope you get some good out of these suggestions. They may sound ridiculously easy and counterproductive, but to the contrary, plenty of extra rest and pacing yourself keep the fibro from going wild.
Hugs and a highlighter pen,
PS: I notice that Lovett mentioned meds as possibly making you sleepy. That's another real possibility. Perhaps you could have your doses dialed back temporarily to see if that helps. I suspect that my Nortriptyline (cousin to Amiltriptyline) makes me kind of groggy during the day but the trade-off for me was waking up during the night in serious pain. Sometimes you have to take the lesser of two evils. However, in your case, maybe you could deal with a reduction in one or more of your meds. A good question to ask your doctor!
I am sorry to hear this and it brings back the memories of when it happened to me. I had been a nurse (RN) for 11 years. My hips began to give me so much problem, the pain was terrible. I could barely walk down the hall. Then I noticed I could not remember simple things that I had never had trouble with. I would ask another nurse and they looked at me like I was crazy and I began to realize something was wrong and I couldn't jeopardize my patients that way. I worried that I would make a mistake with their medications. I double checked all the time. I was calling in sick more than I was going to work. My boss finally told me that I needed to resign or they would have to terminate me due to my many call ins. I resigned. It broke my heart and put me in a deep depression. I rarely got out of bed. Nursing was my identity, other than being a mother. I felt useless, I loved my job. I started going to a neurologist recently because of my migraines and it seems to have gotten worse. Sometimes I feel like everyone thinks I am drunk when in a public place. I don't know which medication it could be. The doc changed so many. But my headaches are so much better. I don't know which is worse, poor balance and falling or the migraines. My memory problems have gotten worse as the doc has changed my meds. I would say to you that you may possibly need to have a doctor go over your medications and tell you if any combination of these meds could be causing it. I was having problems with my knees buckling, falling and having no control of my body, and slurred speech. The first time, I thought it was a stroke. My husband called an ambulance, but I was fine when they got there. This happened pretty frequently. I saw several docs and they were stumped. The neurologist finally took me off one of my meds and the attacks finally stopped. But I do feel that most fibro patients do have this problem to some degree.
Wow, some seriously good suggestions, Tina! Might I add two things to the list: a tiny tape recorder that attaches to your key ring so you can say a couple of things on there to remember. I loved mine until my then-young son decided to play with it. I got mine in the automotive dept. of my local drug store. The other thing I'd suggest is making a spare key for your house and even car and putting it someplace outside of the house where you can later retrieve it, even with a neighbor. I can't tell you how often I locked myself out of my car and couldn't get into the house in order to get the house key. I know it isn't study-related but if you drive to classes, it is.
The fog suffered by those of us with fibromyalgia is the same as those with candida problems. In fact,I believe the candida overgrowth has worsened my fibromyalgia. So, for the last 9 months I’ve been on strict candida detox since I have systemic candida. One of the things that has improved is my brain fog. I never new how to explain that fog feeling to others, but when it started getting better for the first time in many years, I started saying I feel “normal”. It has been so long of abnormal. I still will be on this strict, high maintenance diet probably for another year, but it has been worth it. Finally getting to where I can go back to work again and my fibro pain is better. Lots of symptoms are better! I suggest anyone with Fibromyalgia read about candida (I have systemic candida - so much overgrowth it entered my bloodstream). I assure you there is a connection. Learn to manage candida and fibro symptoms will improve to a noticeable degree. It is hard work and pricey, but your health and mine is worth it. I now pay less for doctors and tests and more for food and supps.Still, together I don’t pay out of pocket even near what my medical bills were. Good luck to you however u choose to address your fog. Btw, aside from medicines someone stated, you can get fog as an allergic reaction too. Keeping a food diary is helpful to pinpoint triggers.
Yes hope4it you are correct about candida! My Dr. Said they same thing! Give up all the bad foods and your Fibro will improve! Thanks for sharing!
Yes I have this problem as well. Granted I'm not as educated as you . But the memory loss is. Tell me , is worrying about it going to help you ? I think not. Try doing mind exercises such as crossword puzzles and the likes. This tells me I'm ok and worrying will do me no good. I also talk on line with other people to handle my stress and worries. May be I am naïve thinking this way. But getting angry and worrying and stressing will not make it better. What it can do is cause more problems
Hope you start feeling better soon. Will pray for you.
Welcome to the group! We're so glad that you're here. Once we begin to share some of our experiences you'll know that it's all part of the FMS life. There are times that you'll be better and sometimes you feel like you've got to survive through. Coming from the medical community you know about medications, contraindications, and what they can do to help or not help us. It's incredibly scary to not be able to remember the things that used to be so familiar to us. Be gentle with yourself and come to the group, just like you're doing today. Nothing will help you more than to get support from your FMS family. I too worked in the medical field prior to the FMS wearing me down to a frazzle. I managed a medical office and knew each of our patients names by heart. Remembering peoples names had always BEEN easy for me. Then after working for the Dr. for 3 years, problems started to take place. I so enjoyed my job, and the last thing I wanted to do was go on disability. After being diagnosed by a rheumatologist I decided to try and work as long as I could. I loved the interaction with the patients. Unfortunately, my people pleasing personality was not a plus for me when it came to FMS. It's such a long story, and as time goes on you'll find you've come to the right place. My memory slowly became worse, names were not so easy to remember anymore and beating myself up for it didn't help in the least bit!! Don't do it, I promise you it will only make your memory worse. Several year after crushing the nerves in my foot and requiring high doses of fentanyl patches and 800 mg of Neurontin four times a day. The thing that helps me some is to meditate a couple of times a day. I also do yoga poses or some sort of relaxation movements. The other thing that makes my day wonderful is watching or reading comedy type things. Laughing is so important and keeping your moods up as much as possible is great. If I can ever be of any help, there are no questions off base as far as I'm concerned. Hopefully, you have a family that will be a support to you. That's super important. When I was diagnosed in 1994 I continued to work for another two years. I do wonder if the hysterectomy I had in 1993 brought the FMS on sooner. Symptoms started in minor forms shortly after I returned to work. Hang in there! We're all here for you!!
Susan aka: grandmadaleyx11 (soon to be 67 in May)
I too had to leave the job I loved because of memory loss. I cant cook without a receipe any longer. I have to have notes, lists, and to do lists for myself.
I know how you feel about losing yourself. I feel the same way. I am going to see my Fibro. Doc. tomorrow and demand something. This is not the way I want to live the rest of my life. I am 59 and live like I am 80.
I just hope that you can find something to help you.
God Bless, will send you prayers and healing energy and strong thoughts.
I have been on Lyrica for years ZERO help. They added Cymbalta and I hated the way it made me feel, like I was dead inside. So I went off that. they bumped up the Lyrica and Tramadol (for pain) ZERO help. Tomorrow I am gonna really fight for some other something to help....
Great tips on the keys,,,,I will have to do that!!!
What is Systemic Candida? I know it is a form of yeast infection but I have often wondered about what it is exactly and what to do about it?
Hellen, this happens to me all the time. When it is something that is vital and I am with someone, I usually ask them for help. Otherwise, I say "Well, fibro fog rears its ugly head again! Or, "I am so sorry, I had a very mild stroke years ago, that affected that part of my brain."
I cannot stand or walk very much at all, and I am totally disabled!
You've received some wonderful advice here...I really can't add much. Having a routine really helps me not get ahead or behind myself, LOL I took some tips from my sons neurologist. My son has a traumatic brain injury from a hit and run vehicle vs.person. He has many apps on his phone that help him. Games that they have downloaded that are fun to him but that also help with the memory, calculator, vocal notes,... My Fog utterly envelopes me and I feel hopeless when it does. I'm a poetry writer and that really has helped me keep on track I think. I am very picky with myself and go back over wording and sentence content till I'm blue in the face but in the end, I feel pretty proud of my efforts. I know this is a really hard part of the disease to accept...it'd be easier if we could just wear a pin on our Fog dayz and everyone would understand and be compassionate. In a perfect world.right? Maybe someday...
Be sweet to yourself today and always!
Laurel aka Northwoods G-Ma
Be sweet to yourself today and if I can help at all with anything please let me know
PeacenLove~Always~Laurel aka Northwoods G-Ma
I have suffered from memory loss. The biggest one was after I had my son and developed post partum. I saw a fibromyalgia specialist and he put me on Zoloft and within 4 weeks my memory improved. Maybe not as good as before I had my son but better than it had been for a year. Fast forward to 2012 I sustained a head injury and got post concussion. This affected my short term memory in the worst imaginable way. It took me 9 months to recover but then the symptoms returned again 4 months later and again my memory was bad. I saw a neurologist and he gave me a list of vitamins to take. I really apologize I do not have the list but maybe if you saw a neurologist they might help you. Anyways within a matter of weeks my memory did improve. There were b vitamins, magnesium and coenzyme Q10 on the list