Hate this brain fog

I hate this brain fog that blights my life. My warfarin works for the Hughes fog but not the fibro fog and it is hopeless at the moment. I don't feel confident about going into large supermarkets/ shopping centres/strange places on my own because of the dazed feeling - my GP was sympathetic and said this was understandable. I do get out to meet up with a couple of good friends but have lost others who work because I am too exhausted to go out in the evening. Luckily my husband is scaling down to four days a week so he can take me out and about and I do enjoy my books and my embroidery, but it's a far cry from a normal lire.

It feels weird, too, because I suffered periods of clinical depression in the past but I know I am not depressed at the moment but just wish I could wake up! It's early days with the fibro - diagnosis was only in November so I guess I'm just going to have to get used to it.

Caroline

28 Replies

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  • I am glad that your GP is communicating well with you, and that they are approachable. I find that I have to pace myself, some days are really good and it clears other times it does not. I hope you feel better soon. Mary F

  • Sorry to hear that Caroline, hopefully as the weather gets better you can at least get outside and sit in the sun. I find that helps a little.

    I know what you mean about friends who don't understand and tend to stick with those that do now. TBH they could not have been "friends" if they can't understand but then some people just don't know how to cope or feel awkward around people that have a problem or two. I find I just relax more with people who I know understand and I don't have to make excuses to or constantly have to explain matters.

    Great that you have a good GP as Mary says.

  • hi caroline- in this world we live in there are many people, the ones we want to understand ,, the ones we wish could understand , and the ones who will never understand????? its very hard to make the distinction- but in your heart only you can deal with this, in my opinion you can only tell them ,hope they understand as if it will be understood , its a hard one to deal with ,especially when you truly want them to understand , and it means so much to you-- dont give up as it will come back to you. ----------- look back to -----enough-----------as this says it all in my thoughs----------------------- jet

  • Hi Caroline 52,

    I am sorry you going through a rough patch and i am glad the GP is communicating. As Lynn said friends come and go if they were true friends they would understand and be with you. You also have your online friend of the community here on HSF we always happy to hear a rant, joke or happy to help with an answer if we can.

    Paddy

  • Hi Caroline

    I`m sorry you having a tough time with the fibro fog, :-( :-( :-( horrid isn`t it, I have fibro too so I do understand. I tend to hide and don`t cope with supermarkets etc, cos I feel like an idiot when speech comes out wrong.

    As for friends who don`t understand, I stick with the ones that do and I try to get out to spend time with them.

    I refuse to explain or justify myself anymore to family and friends who don`t understand, to be honest if they were sorth anything they would do some research and find out why I`m in pain and knackered. If they can`t be bothered neither can I!!!! Rant over!!!! :-)

    I`ve made some great friends on here and they all do understand.

    Take care big but gentle hugs love Sheena xxxxx :-) :-) :-)

  • hi jess are you still my friend even when your knackered????????? uncle benny

  • Hi Benny

    always your friend hon.

    Take care gentle hugs love truely knackered!! Xxxx :-) :-) :-)

  • Hi Caroline,

    I hope you are feeling a little better today :( I understand the foggy side of it as most of us do, its not at all nice, embarrasing at times too.........today for instance... I had finished my Tuesday gym 'attempt,' had shower & went to change.....& realised I didnt bring any trousers!!!! I had to put gym stuff back on, nip next door to TK Max & go back to gym to get changed again!!! duh :(

    I know quite a lot of the time I walk around in a daze or hobbling with joints bad, forgetting things I'd gone into town for, I'm the same as Sheena with I dont care what others think anymore & if family & friends dont understand why you've forgotten something etc....then its not our problem, its theres!!

    Keep your chin up & even if you just go out & have a coffee & watch everyone else run around!! I do :)

    Hope you feel a little happier today I know what you mean....I'm in the same place too, Sue xx

  • What is this fog you all speak off?? I was diagnosed with APS 3 years ago following a dvt, was put on life long warfarin and that was it. Apart from remembering to take my warfarin daily and regular trips to anti coag clinic I wouldn't know there was anything wrong. Am I just lucky or is there a load of problems waiting to come my way?

  • Hi Millsy,

    The fog we talk about can be memeory issues where you just cannot rememeber to do things and people describe the feeling as having a vaiel of fog over there haed and things are more difficult.

    Hope that helps

    Paddy

  • Yes I understand you mean memory issues when you say fog but why would APS cause this?

  • Hi millsy

    it is i believe due to sludgy blood not circulating properly. Therefore restricting blood flow to certain areas of the brain.

    Research hopefully will find answers, funding permitting!!!!

    Take care gentle hugs love sheena xxxxxx Some:-) :-) :-)

  • Hi Millsy,

    Even though there are a lot of us that get similar symptoms not just the 'fog' it doesn't mean others will too, there are different stages of it for all of us, some even dont have the joint pains....but I know ( including me ) do.......

    You just have to take every day as it comes & if something else pops its ugly head up we have to deal with it when / if it does.

    Keep yourself well, Sue x

  • Hi millsy

    It's not known why some people have less symptoms than others, you may never develop any of them. Stay well and please try not to worry.

    We here whenever you need us.

    Some of us have other conditions too, which also can cause the fog. Although my memory n speech problems are always worse when my inr is to low.

    Take care gentle hugs love sheena xxxxxx :-) :-) :-)

  • suzy-suzy -suzy- talk about a picture in your mind- i can just se it in my mind you in your shorts- going to by some pants - maybe benny should of ben chaseing you from gym to store with stick in hand HA HA HA. i find myself doing some pretty weird things - go buy groceries and walk out after writing a check for them, with out the bags of groceries, the cashier yelling in a crowded supermarket-{ dont you want your groceries} now thier is 50 people just looking at me?????? i now just laugh ,shake my head and go on with my day, til the next dum thing i do??? i say to he--- with it ,its me like it or not,,,,------------------------ absent minded uncle benny!!!!!!!!!!!!

  • Ha ha ha.....I thought you would have liked that one!....I know my family found it highely amusing!! :)

    I got to the gym one day & had 2 boots.....but of different styles & colour!!!! had to walk around town in my gym pumps!

    I know I'm always doing or saying something silly.......oh well it's part of who I am now so others will have to get used to it!

    It just shows we're all the same with Hughes. Sue.

  • Hi

    I have problems with this, sometimes I feel I can't go out. I write on my brain (calenda) thatI am going shopping, on Monday. It may take up to the Friday to be able to go out but at least i did it.

    Every week I try to set up a Goal eg, join a libray, get up early and do the ironing, always take a list for your shopping, and think on the good side. At least you remembered to pay and you remembered where the shop was.: )

    Love Karen xx

  • I can relate to that hun,

    I too have to write everything down on the calender, plus have a list everyday where it has things I have to do, I find it helps me get through the day without getting to the end of the day saying....' oh no....I forgot to ring (such & such!) or was it the dinner or the cat I've put in the oven!!!! :)

    Yes I do find it helps to be more organized & get things done more fluently.....

    Hope you are well Karen x

  • suzy -were you ever tested for arthritis of sorts, what joints hurt you the most ?????????????????///// jet

  • I was once...but maybe it needs to be done again...it does run in my family (mums side) a lot :(

    it's maimly my elbows & hands but my knees & hips do sometimes.....

    I had assumed my elbows hurting recently was the cold weather....but its still doing it??

    Sue :)

  • Really cheers me up to know I am not the only one suffering. And to have people who understand. There are a couple of people I know who I hope I will be able to see sometime, but they work full-time so it is difficult. The others I am giving up on as I don't see why I should have to keep trying to explain myself.

    Loved Sue's story of going to the gym without the trousers - I try to go swimming once or twice a week and used to put my cossie on under my clothes - but no more as found it a tad embarrassing in the changing room when realised I had forgotten my knickers!

    I am trying to plan out each day but not always with great success - had a letter for the post office this morning and needless to say went out without it and my shopping list - had an appt with the physio in the afternoon so did it all then instead, but still don't think I've got everything.

    There are a few things I need to get organised for my hubby's 60th on Saturday - I have arranged for a cake to be made, and just hope I remember to collect it and that I have asked younger son to get balloons on his way over - as he is impossible to get hold of! Thank goodness for Amazon so have got his pressie (will I remember to get wrapping paper???). His family are coming from far and wide for a pub lunch so no cooking but they may come to the house afterwards. He has two, one in particular, extremely houseproud sister in laws whereas mine is more 'homely'. But there isn't much I can do about that. Then we are going away for a couple of nights so need to get packed up. The days when all that was needed was a spare pair of knickers and a toothbrush have long gone - priority is making sure I have all my various medicines!!!

    The icing on the cake was Saturday when I got the dreaded ESA form (in drawer!) and a letter recalling me to the breast clinic tomorrow when it is my fortnightly embroidery group.

    Caroline

  • Lol I've done the knicker thing too!!! as I used to wear my cozzie under my gym wear & then I was ready for both!!

    I love ebay for my last minute or dont feel like walking round the shop gifts!! :)

    Keep well hun Sue xx

  • ha suzy - i have read that -what i have is consistant with hughes- that being osteoarthritis, and then a.v.n.- i hope for you my friend this is not the case- this is with me rite now the thing that is my main concern, at my age and gender is a very good chance i will continue to be plaeged with this,as we all know we care all different , in many ways this is true. my biggest problem is by far my hipps--- then knees - then feet. the muscle problems , the palversations, and cramps are becoming more comine place, all the tests my rheumy is doing, is leading to the same conclusion. i am old enough that i guess it will not make much of a difference- what the source of my problems was when i was in high school i was a competition gymnist- many spills on floor mats , trampoline, uneven bars, and rings-i was in the 7 th grade and competing against college athletes, competition was intence and i might add i was kicking bloody butt, winning ,was not mr popular. but i think along with these disorders there is a reason. this i think is the sourse, ok the thinks i am now dealing with- but then again who really knows for sure----------------- old acky benny jet.

  • well i did it again 72ghduhfr78yf474uhv io48wer bvg- lost a long thought out reply and now i i am just discusted with my self ----------------- me

  • hay suz- if anyone noticed your boots of different color . you just mention you have another pair at home just like the ones your wearing!!!! ???? the knickers thing , i dont have an answer for that one at the moment , that will requirer more thought ????????????? benny the philosopher ???

  • ok....you can stop thinikng now!!!!

    Lol yep I did have the same pair at home!!!!

    I might remember everything one day when I go out!

  • The brain fog is atrocious for me. Some days I literally cannot function beyond moving to the couch. It is worse after the headaches but I just hate it. I lose words and thoughts. I was talking to my daughter a few days ago and simply stopped right in the middle of the conversation. It was just gone...the thoughts..the words. She was very good about it as always but it is so frustrating. Then there are the days when I feel like I could just sit and stare all day at nothing and it would be just fine, kind of like a numb feeling in my brain. So hard to explain to people too.

  • I'd say you explained it quite well. It doesn't seem to effect me everyday but more often than not as of late. I look forward to the days when I'm "awake". I feel completely frustrated when it happens around those I'm comfortable with and embarrassed when it occurs with strangers. and...... to add insult to injury, I'm an analyst by trade. Trying to cope with the "fog" at work is like a whole other dimension.

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