I have been so worried about driving lately because of fogginess. I started a discussion a couple of weeks ago about it. I saw my neurologist today. We talked for 45 minutes. He was really thorough and we also talked about fm and my awful back pain. Anyway my good news is that he really believes most of the fog, forgetfulness and cognitive issues I've been having are going to improve as I reduce the clonazepam and start moving more with mild exercise. He said that exercise does so much more for us than even thought a couple of years ago. Our brains are benefited very much by exercise, blood flow to the brain even if it's a tiny amount. So back to the warm water arthritis aerobics I go. I'm already reducing the clonazepam and am down from 3 to 1 mg a day and have had 2 days with none. I was so very excited when he told me to start moving again because I was afraid I'd break if I did. He also told me that yes, I do have some disc degeneration, but he didn't want me going anywhere for steroid injections or surgery. He thinks the exercise will help that as well as the muscles get stronger. I was so relieved when he didn't laugh at me when I told him I go to bed at 7 every night, read a few hours, sleep and the go straight to my recliner in the morning. He was very kind. He gets the fm thing.
This might be good for others to know who are hurting and afraid to move. Remember, blood flowing to the brain. He recommended yoga too. Easy does it.
So we killed two birds with one stone today. I just had to share some good news because I'm always on whining to my good friends here.
Always good to hear some good news! I hope this all works, I am looking forward to getting out and moving more, just has to stay consistently warm, as it cooled down again here!
I want to add that Clonazepam has been a life save for me, really. Last summer was an awful time for my family and that's when my PC prescribed it. I am only able to stop or reduce it because that stress in my life has gotten better. It is a much needed medication for many of us and I don't want to sound like I'm minimizing that.
The Neuro also said that moving more will help with my depression. So I'll feel like getting out of the chair more. Yay!
I have been dealing with this for 20 years, but its only been 10 since anyone said the "word".
I see that you are working with a neuroligist. Is that a place to go for help with Fibro?
I am having the same problems with driving I am not taking clonazepam but latley I find that my vision is wierd, I am foegeting how how spell and type. I am getting real forgetful all around in general. More so than what I think is normal.
Where are you located?
I am in Canton and al looking for someoe to really help me with this.
Cathy, I know how you feel. The fibrofog is awful. When I'm driving I have to really concentrate but I've found putting my music on a bit louder than normal but not banging, helps me concentrate as I have to focus on what I'm doing otherwise I pull the handbrake on instead of using my indicator or do something else just as stupid! I have long gaps in sentences when I speak while I try to figure out what I wanted to say. When I'm typing I type words back to front and say things back to front even if I'm reading them! It is an odd disease and very painful. Several people I know have a tendency to hit or punch you in the arm when they talk to you and they don't understand how tender my muscles are and how much it hurts so I started to avoid people and stay home. It felt easier than explaining myself and complaining all the time. Now I just tell it like it is and if people don't understand, that's their problem and they don't have to come near me. FM is a real disease that is crippling in more ways than one and we have to keep experimenting with drugs until we get the right mix that helps with everything. All I take at the moment is Amitriptyline but that's not working. I've had Progablin (sorry if that's spelt wrong) and it did nothing at all for me. I don't know what else to try. I'm in UK where they don't really take FM that seriously at the moment so I feel like I'm beating a dead horse!
How awful to be dealing with fibro so long. I have a close friend that has been plagued with it for 25 years. I can't imagine what it must have been like to find a doctor that understood two decades ago, let alone how you yourself felt. I'm sorry to hear that. I'm 55 and was just diagnosed in 2008. I had signs of it sneaking up for a lot of years, but in 2007 it knocked me flat. This winter has been my worst, I believe. The bone pain has been terrible.
3 years ago I was referred to this neurologist to rule out MS. And we did rule it out. I was having numbness and tingling in my arms and legs at the time. I no longer have those symptoms and can't explain them other than fibro.
Last week I saw my rheumatologist for fibro stuff for the first time in 3 years. Since my back pain has increased and due to Degenerative Disc Disease and my cognitive issues increased he wanted me to go back to Neuro. So, to answer your question, yes, a neurologist is a spine and brain doctor and can help with cognitive problems, even if you don't have back problems. He discussed my meds with me at great length and how they work together in the brain.
But, with fibro some of that fog and vision stuff is just part of the illness. I'm sure mine will still be around to a certain degree as long as the fibro haunts me. But I am excited about being told by a neurologist, who understands the brain the best, that moving more can help how the brain functions. I needed to hear that from him - the brain doctor. Better brain function may not be perfect, but is a step above what I'm dealing with now. So, I'll try it and take the chance. And who knows what it could lead to?
I'm in Oregon. Your primary doc should be able to help you find a neuro. Tell your primary you are having cognitive problems. Do you have a rheumatologist that helps you with your medication? They most commonly treat fibro. He is the one who referred me to the neuro, not my primary. Some insurances require a referral for any type of specialist. If your primary or rheumy says it's appropriate they probably have one they recommend. Or if you decide to seek out a neuro on your own, google search the words NEUROLOGY CANTON and see if you find one in your area. I would make sure insurance covers it first.
I hope you find some relief Cathy. I figure moving around, especially now that the weather is nicer, can't hurt. That's what all of my doctors have told me.
Well, that sounds encouraging, L-Kitty. Gentle exercise (strong emphasis on gentle) plus less meds might just work for you. "I hope you can find a way to reduce the fogginess because it's darned hard to do much of anything while you're in a fog. Please do let us know how you make out. I'm very curious about the water therapy. It sounds very relaxing, as long as the pool is heated!
Good luck! Get that blood flowing and the fog off of yourself!
We've all beaten that dead horse, believe me! I actually find that Lyrica plus two Ibuprofen help the most with my pain. Actually the two Ibuprofin work more than the Lyrica. I was thinking only today that I could have saved loads of time and money by not going to doctors for my fibro and just taking the freaking Ibuprofin. So you see, my dear, there really is no great pain drug for fibro. My rheumy was very upfront with me about this,and I now see that he was right.
And you're so right that this illness is so painful everywhere in every way. Like you and Cathy, I often write and say the wrong words or syllables in the wrong order. So it sounds a bit like babble at times. And yup, I misspell things too, which is really embarrassing when it's a word like "here" and I spell it "hear." Fortunately, here we can corect our "typos."
I'm so relieved to see you back. I'm thankful things are trying to get to normal in Boston and so sorry you were so near the bad stuff. Missed you.
Actually I did the Warm Pool Arthritis class all of last summer and it was wonderful. The problem was that I ran out of funds and then winter set in and could not get my freezing cold body to the pool in the dark mornings of winter. I went all of 3 times all winter. I definitely recommend it tho. I hope if I get going now I will be able to continue into winter this time, because I was moving and feeling better. Same with yoga. Emphasis on GENTLE.
Glad to hear there was nothing serious, L-kitty. I have taken 1 mg. clonazepam for about 4 years for my TMJ and it helped a bit with getting more sleep than I was. Over Christmas I cut it in have and then a quarter for 2 weeks to wean myself off of it and I definitely felt how much it helped with the teeth pressure(even with a splint) and that was when I noticed the restless legs. Wasn’t worth not taking it for the increase in pain and aggravated sleep. Dr. didn’t think such a low dose was worth not taking.
I love the warm water pool - but the weather here wasn’t worth the flare up I would end up in going out in the cold. Even waiting 1/2 hour in the lobby area didn’t seem to help any. Looking forward to warmer weather. As for the fog - mine is getting worse. I thought it’d get better getting more sleep, but that’s not the case. I truly believe that stress is the trigger and makes it worse. I have been under so much stress at work lately that words don’t come, I don’t even want to talk because it frustrates me so much. Then I get depressed which makes it even worse. Today I could have walked out at least 3 times - the noise in the office was overwhelming and I went into overload. The guilt is back because I don’t want to leave my boss with no one to finish out the school year. I have 2 banquets to plan and all the certificates, PowerPoint presentations, 3 luncheons this Thursday, Friday and Tuesday! And I’m so tired of people asking how I am. I honestly now say “I’m here” or “pretty shi_ _ y!”
Sorry that I went off - I asked to speak with my boss tomorrow and am going to ask him if I can work on my big projects from home and come in at 3 when everything is dying down and people go home. Then I could work about 3 hours all by myself. Think I’d accomplish more.
Maybe we should start a group called “water babies” so we can encourage it other to go and workout. Wish I had a Fibro buddy to do it with me!
I'm glad you went off! Relieve some of that stress! What do you have until the school year ends, about 6 weeks? Sounds like a long time, but on the other hand an end in sight?
I hadn't thought of the cold weather starting a flare after swimming. I have very cold winters too. I'm going to pretend I don't know that and go like a fool until I can't go anymore. :0)
Wow that sounds great. I too have been afraid to drive because of the fog also. I am also having trouble remembering things. I have problems with my vision. I wonder should I see a Neurologist?
I just joined this site and already feel better knowing I am not alone or Crazy!!
Hi Carol. Yes, I have similar problems with forgetting, the long gaps in sentences and concentration. I left the car running recently. I got home from a very long drive, my husband was getting things out of the back of the car, I got out and shut the door. My husband asked me if I was going to shut the car off. I just laughed. We both did. I am so tired of feeling so stupid. So tired of my kids looking at me as if to say "are you alright mom?" I don't know how people hold down jobs. I was in the medical field and was afraid of making errors in peoples charts. I had to leave my job partly because my concience wouldn't let me risk it.
I surely wish you the best. I know finding the right medications seems like an endless battle, and can be. Hang in there. It could be that my neurologist has something when he says to add some mild exercise. I hope so.
Thanks for your story. I know exactly how you feel. I work as a Bookkeeper and it is getting harder and harder to work. I make silly mistakes all the time and it is just getting to hard to go to work. I too have trouble typing now and I was pretty darn good. I am goingto talk to my current Doc. and mention those meds you mentioned.
I got a name of a doctor here close to me off this site just called. WOW. 150.$ deposit just to make and appointment. Then the First appointment is 600.$ then they will submit to my Insurance to see if they will pay. Dang..I am so disappointed. I was hopeful for a little while.
They dont take it serious here in the US either. But having this site is helpful at least the people you talk to about your issues understand and BELIEVE you.
well I will share with you anything I find out. You do the same.
Hello THANK YOU for all this info. I will share it with my PCP.My Dr.s wife is a Neurologist. I do not have a Rheumy as yet.
I am 58 and when all the symptoms started about 25 years ago, they did not have a clue or a solution for it. They gave me some kind of pain med. that didnt do anything.
10ish years ago a new Dr. gave the name Fibro. But she too didnt take it serious.
My current Dr, who I love for all my issues except this on. He even said to me that he was not totally informed about it. So now I am on a hunt for myself. But I think that I will get a Rheumy firstl
This site is really helping me, just have understanding people to talk with.