We Are Like Victims of Brain Injuries

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Aug 3, 2011.

  1. Mikie

    Mikie Moderator

    I'm watching Piers Morgan and his guest is Bob Woodruff. About five years ago, while covering the war, an IED exploded and he had a head injury much like Rep. Gabby Giffords from her being shot. He was explaining the after effects and I was amazed at how closely they resemble what we go through. He said that even though it's not obvious to most people, his brain just doesn't work like it did before. He has aphasia where he can't find words and has to use synonyms or talk his way around what he's trying to express. I think most of us can relate to that. He also has problems with facial recognition and names. I have this when I'm run down and it's embarassing. He now has dyslexia; how many of us are frustrated with this every time we sit down to type? Finally, he said he doesn't have his old energy and tires easily.

    I've always known that our brains, cognitive function and memory are affected by our illnesses but it never occured to me that many of us function at the level of someone who has had major brain injuries. Dr. Cheney says this is not permanent and that if we heal, our function returns. We've had a few here who have pretty much recovered and they said that even memories which they thought were gone had returned.

    So, hope is not lost if we can find ways to heal. In the meantime, I think we should cut ourselves lots of slack when we get frustrated with our illnesses.

    Love, Mikie
  2. kat211

    kat211 New Member

    I can tell you that what many on these boards describe, and what I also experience now with my fibro, is very similar to the lingering problems I have from a tbi (traumatic brain injury) I incurred from a severe auto collision in the late 90s. The best way to get through it is to develop a strong sense of humor about it. Getting upset will make it worse. It is what it is, so why not just laugh about it? Making lists or jotting down notes also helps jog your memory or 'free up' space too.

    Edit - Also, a cognitive occupational therapist can be a wonderful resource for coping mechanisms if needed for 'brain fog' type of issues[This Message was Edited on 08/03/2011]
  3. earthdog2000

    earthdog2000 Member

    Hi Mikey, hi kat211,

    I also suffer from a lot of memory issues and used to get soooo frustrated! I know that mine is from the "fibro fog" and it got worse and worse until I learned a few strategies to cope. I started using "post-it's" and now use them everywhere I think I may need them and also write down on a big post-it every night before I go to bed what I need to do the next day on it. When I was working ( up until 4 months ago ), my coworkers called me the "post-it note lady" lol! Wow, it's unbeliveable to know that we have the same problems memory wise as people with brain injuries!

    I also have told all of my family and friends about my short-term and long term memory problems. I have explained how it effects me and to please try to be patient with me and understand that it is not something I can help! I also ask people to remind me of things I need to do and somehow I usually remember. I say it's because, if I remind you to remind me then I usually remember,lol! I also suffer with word-finding skills, remembering what I was just saying and forgetting what someone just said to me. It drives me crazy! Mikey, do you have any ideas on how to help with these issues? kat211, thanks for the heads-up about trying a cognitive occupational therapist! I think I'll see if my insurance will cover that. Take care,

    Faith, Peace and Hope, Julie

    P.S. I have recently started playing "brain games" on the internet because it's supposed to help with memory!
    [This Message was Edited on 08/03/2011]
  4. Mikie

    Mikie Moderator

    Thanks for your responses. Kat, I had a serious concussion at age 12 from being hit by a car while riding my bike. I had to go through visual therapy to overcome my double vision afterward. I was so young when it happened that I don't think it caused other problems. A young brain has an easier time rewiring itself. It's interesting to read about your experience with both head injury and your illness. Your suggestion re: Cognitive Occupational Therapy is excellent. Thank you.

    Julie, I make lists and leave notes to myself too. I will take my keys down from the hook and put them on the counter with a note to remind myself of what I need to do. That way, I can't get out of the house without my reminder.

    When I learned to fly, we practiced all kinds of emergency reponses until they became automatic. I had to rely on that on several occasions and was sooooo glad I had those responses hard wired in my brain. If we do things repetitively, our neurons will form permanent connections. As the saying goes, "Neurons which fire together wire together." That is why I keep the keys, purse and shopping bags in the same place. It does free up space for other tasks when I'm not frustrated looking for my keys.

    I always try to look my best when I go out or to our condo mtgs. I also, as Bob Woodruff said, appear to the world as normal. A neighbor invited me and another single woman here for dinner at her and her husband's condo. After dinner, they hauled out a board game and as she started to describe the object of the game, I felt panic creeping up my throat. I had to tell them that I wasn't able to do it, especially since they wanted to play partners. I left early and they were happy to play individually. They love the game. Evenings are not my best time. I think when we are tired, our brains are tired too. I later explained to her how bad I felt for leaving early but that I just couldn't do it.

    Someone here posted about the dilemma we face as we try to both look and act our best and still have our limitations taken seriously. It's never more pronounced than when we are attempting to get disability benefits. I no longer tell people I'm fine when they ask because they then think I can do something which I can't do. I usually say I'm OK. I'm lucky in that I have a supportive family and most of my friends and neighbors are understanding. Still, I've experienced some rolling of eyes and thoughtless remarks. I try not to let my illnesses define me but sometimes, they do limit me. No shame in that.

    Love, Mikie
  5. Mikie

    Mikie Moderator

    Thanks for wading in on this. I'm so sorry you are struggling with memory and cognitive issues. Long-term memories are stored differently than are short-term, according to a program on the brain which I watched. It is the short-term storage area which is affected.

    At the time, 11 years ago, that I was bedridden most of the time, I suffered fog so horribly that I had to hold onto the wall just to get out of bed and go to the bathroom. It really was like trying to navigate through pea-soup fog.

    I am very blessed in that I recovered enough to do some online research and had good docs who helped me with what I found. It took years, and many different treatments, to get to a much better place. My cognitive issues are still with me, especially when I'm tired or sick but it's a lot better than it was. I do not believe our impairment is permanent. Dr. Cheney doesn't believe it is either.

    I think most of us have done things which could have been dangerous due to our problems. Forgetting things on the stove is classic. If you can find some kind of bracelet, either a stretchy one or one of the rubber ones sold to benefit causes, slip it on when you have started something which needs watching. It's little devices like this which help to prevent problems. We really have to get creative.

    I once had to lose the use of my dominant arm/hand due to serious surgery. I learned to write with my left hand and I learned how to get along with the use of only one hand. It took tons of creativity but I found so many ways to do it. My mom helped by giving me a safety pin on a long chain. I could hook the pin to the zippers in my dress, take the chain with my left hand and pull the zippers up. I mention this because we can make a game out of how creatively we can get around our disabilities.

    Best of luck to you. Sending up prayers for all of us.

    Love, Mikie
  6. Waynesrhythm

    Waynesrhythm Member

    Hi Mikie,

    RE: "I learned to write with my left hand and I learned how to get along with the use of only one hand. It took tons of creativity but I found so many ways to do it. ......... I mention this because we can make a game out of how creatively we can get around our disabilities."

    I couldn't agree with you more about learning to think creatively to meet our challenges. We can make a game out of it, or for the more serious minded (like me sometimes :), view our limited abilities as a new opportunity to learn to survive, no matter what. (Think Gloria Gainer's song "I Will Survive". :)

    I just ran across an article I thought might fit in with this thread (which I think is a very important one for many of us). It focuses on research being done with "light therapy" to alleviate some of the symptoms of brain injury. It's apparently been very effective for some people. I'll paste it below, along with the link.

    To shift gears a bit, I notice you're a moderator again. I'm very happy to see this development, and feels like it will be an incentive for me to visit here a little more often. I was wondering if you have an easy way to contact an administrator of this forum so that I can change my username. I want to change it to "Wayne" which would be the same as my username on other forums. Thanks for whatever you might be able to do in this regard.

    All the Best, Wayne


  7. Mikie

    Mikie Moderator

    Thank you so much for your sweet comments and the info. Unfortunately, ProHealth has to be so very careful not to infringe on copyrighted material. We have to get permission from whomever owns the material, or holds the copyright, to reproduce it here; however, people can use the URL you provided to read it themselves. If we do get permission, we can identify the source and post that we got permission. Our members are so generous to share info but we have to abide by copyright laws. I'm sorry. I know it's a pain but ProHealth has to protect itself against copyright infringement.

    Please use the "e-mail" us link at the bottom of any page to change your username with ProHealth. I do hope you come here more often. You always bring good cheer and great info.

    Love, Mikie
  8. dzlady

    dzlady New Member

    Wow. That is scary. Although, I am sure that we all do that. I know I have left candles burning. My savior is that I get up many times before I actually go to sleep and my house is completely dark, so I see the flickering of the candles and blow them out. I have crappy short term memory as well. As for cooking, my problem is that usually, I will put something on the stove and forget to turn it on! Makes me so mad.

    I dont work anymore and havent for just about 2 years now. The last job I lost from missing too many days and not performing the way they expected. Whatever! The way he did it made me so mad, but thats beside the point.

    And I feel ya on the blurry vision. I am legally blind to begin with, without my corrective lenses. But the blurring vision is so aggravating.

    I've been a small hobby breeder of Pomeranians for about 7 years and a while ago, I was talking to my best friend, also a breeder of poms, and was discussing vaccinations and ya know, I could not think of Parvo. I had to describe it. I dont trust my judgement anymore when it comes to symptoms. I am always calling her and asking things that I already know, but want to make sure my brain is working right.

  9. dzlady

    dzlady New Member

    I answered on that post...I think. I am doing ok, but they took out the stitches Monday and that caused a whole other pain that I am still dealing with. My belly button incision is a bit infected from the stitches...makes no sense to me, if its infected from the stitches, whats the point of the stitches. There are so many options to closing an incision and this isnt a large incision to begin with.

    I was always trying to do things for my family and working hard to earn the money to get them the things that they wanted and needed. But now, not being able to, makes a huge difference on how we live. Thankfully, my husband makes enough money to pay the necessary things, but it doesnt leave much for anything extra. Sometimes, not even food, but we get by.

    And last night, one of my teeth broke on something I was eating and I am in lots of pain from that. I cant get into the dentist until the 18th to have it pulled. Its throbbing and the nerve is exposed, which is causing pain. Just gotta baby it until I can get in there.
  10. Mikie

    Mikie Moderator

    I'm so sorry you have had so many things go wrong. Our troubles seem to come in multiples. I'll keep you in my prayers.

    Love, Mikie
  11. dzlady

    dzlady New Member

    This is another dentist, other than my usual. My dentist is over 30 miles away and with the pain I am having from the surgery, I dont trust myself to drive that far. This dentist is local and cheaper than my usual dr...and will take payments :), which is wonderful! I will just have to baby the tooth. Did ok yesterday. I just wont chew on that side and will keep all food away and try my best to keep fluids away as well, unless they are room temperature (like brushing my teeth)

    I have grown to love this forum. Everyone here is so supportive. I am gradually learning and recognizing names of members and have come to really feel like friends with some, like you BDT and Jam.

    I have learned a lot here, I can vent here and then find out that I am not the only fish in the pond when I rant about my symptoms.

    I belong to only one other forum and that's for electronic cigarettes...which helped me quit smoking after 20 years! I am just really surprised that there are so many people out there willing to help or just lend an ear when times are tough!
  12. ellikers

    ellikers New Member

    That makes total sense to me since CFIDS and FM are central nervous system disorders and the brain is a big part of the CNS. It's a brain injury- just a different type, and usually more gradual.

    The conference I went to last year (that I was geeking out about here for awhile) talked about how the centers of the brain that deal with pain, the more they are activated, the more they recruit nearby neurons to relay their pain signals ... areas of the brain that are not supposed to be "pain centers" but instead help regulate emotion, maintain focus and concentration, remember things, speak, etc. I was so amazed by that explanation, because it makes sense why so many folks with these issues or any sort of chronic pain suffer cognitive affects over time as the pain loop gets stronger and broader in the brain over time.
  13. sharon512

    sharon512 New Member

    I don't know if any of you feel this way. From the time I was a young child I felt as if I couldn't remember everything that was just told to me. I have continued that way my entire adulthood life. I found out I had FM around the age of 50. I am now 64 years old with the same problem. I just wonder if this problem is any connection to fibro.
    [This Message was Edited on 09/01/2011]
  14. Mikie

    Mikie Moderator

    As a child, I had ADHD but at that time, I'm 67, no one knew what it was. It was just considered a behavioral problem. I wasn't interested in remembering anything. I wanted to try everything and when I got bored with one thing, I was ready to move on to another. I had a high IQ so I did become bored easily with the drudge work I was forced to sit through.

    My Mom had FMS, I have it and both my daughters have it. One daughter had ADHD as a child and I believe my grandson has it too. My Mom, my daughters and I all have cognitive problems of one type or another. I believe cognitive problems differ somewhat from the Fibro Fog but I know that our brains are affected by our illnesses.

    Love, Mikie
  15. Jonsparky

    Jonsparky New Member

    I have read a few places that FM may be brought on by head trauma.
    (URL deleted by moderator)

    The pituitary gland along with the hypothalamus play a big role in regulating the body, and it is very susceptible to brain trauma. I had an accident during my recklessness of youth period in my life, I must have been 17. I hit a tree while riding my motorcycle, broke my left cheekbone, though I never got medical attention for it... I am on replacement hormones for 4 years now. I am finely seeing a lot less brain fog in my life, it is down to maybe once a week. I have been a monk for 24 years, and live with a large number of other monks, around 60! I would forget there names, it was very embarrassing, knowing someone for years, and not knowing there names! I used to scan the phone directory starting with a's albert, no, Barry, no, Clive, no... At one point, I asked the guy that lived in the room next to mine, where he was living! The more embarrassed you get, the worse the memory... It is nice to have this somewhat under control now, along with the blurred vision. The problem is,I cannot identify what helped my memory to return, as I am getting so many different treatments. I think HGH has been helpful, and the other hormones, but B12 glutiythyone injections have helped a lot too.
    Some of the brain fog has returned during the mopping up cycle, that Mikie mentioned on another post. I am on my second vial of Heparin.
    But I am also wondering about Lymes disease, as I do recall getting a tick bite, back in the late 70's... So many venues for I'll health to choose from...
    Take care,
  16. sharon512

    sharon512 New Member

    Thanks for answering me. I never had ADHD that I know of. I always had reading problems as a child but got help. I agree that our brains are affected by our illness. Way back then nobody knew about fibro or any other of these diseases that we have talked about. I also believe that you must concentrate on what you are learning to retain the information. I am not able to concentrate sometimes. Sometimes I feel that people talk to me and I don't hear them.
  17. Mikie

    Mikie Moderator

    I cannot listen to directions of any kind and form them in my mind. It's like the noise the adults make on the Charlie Brown shows. Waaa! Waaa! Waaa! If I'm tired, not much registers. Then, I'll have days where I'm quite sharp. I have a friend with Alzheimers and some days, we aren't much different. That said, she is doing really well on Aricept so it's not as bad as it sounds. We both sometimes suffer embarassment when we can't cogitate or remember. I tell her things are in our brains but it's like we just can't get to them. She also has her good and bad days.

    Many of us had high IQ's and it's hard to live like this. We know what we've lost.

    Love, Mikie
  18. sharon512

    sharon512 New Member

    Thanks for your input. I do have a lot of problems with directions too. I also believe that I have a very high IQ. It is frustrating to know that you are smart and just can't remember things. I guess we will just have to live with it. Thanks so much for listening to me and all of my problems.

    Good luck to you.

    Love, Sharon
  19. Mikie

    Mikie Moderator

    Yes, it is frustrating. I try to watch "Geopardy" to try to keep sharp. So many times, I know the answer, or question, but I just can't get it from the brain to the tongue. Thanks for your kind words. Good luck to you too.

    Love, Mikie

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