I have fibromyalgia for about 18years but over the last few years brain fog was getting me down. Forgetting if I had taken med. Couldn't remember names places and people also found memory was getting really bad .I decided to take myself to my gp. To see if this was brain fog. I mean putting food in the oven and not switching the oven on,Forgetting to eat. Anyway I was shying away from written, talking to people as I couldn't manage to concentrate...upshot doc did memory test and decided to have me checked out at clinic . More tests mri scan it turns out I gave a brain tumour well blow me down I didn't expect that..after the initial shock 2 weeks ago. They have said its inoperable I think probably due to my age and various health conditions they think it would be a difficulty recovering.?? So I've just been left hanging and no care plan ? The tumour is 2 cm at the front of my right side of brain...sorry for big long post but twice I nearly didn't go for the tests as I had passed memory test 98% but had I not went for investigation of simple brain fog I wouldn't have found out about the brain tumour...anyone worried about mental health go get checked out . Xx
Brain fog: I have fibromyalgia for... - Fibromyalgia Acti...
Brain fog
oh dear ,so sorry to hear the shocking news for you.Yes poor memory is often passed off as all to do with your condition n various meds.It is with me.I did go to gp once and failed memory test.He couldn’t even find the questions first of all which wasn’t a good start.My husband couldn’t remember the address he had asked me to recall so it was passed off.I was in hospital years later for something else and as previous had mri for sinitus query.I was woken by a doctor for tests and told I had a brain tumour.Scared me so much.It turned out it was acoustic neuroma which is tumour on audio nerve thank goodness. I have MRI. every three years to check on it. You can always ask for a second opinion etc.Some doctors seem to pass attempting due to age and meds but when you see programs like Surgeons at the edge of life,they blow you away at their expertise at saving people. Have you asked about alternatives other than surgery .
So sorry to hear your news. You say you have been left hanging with no care plan, I think you should speak to your GP, he should've had a report from the hospital.
Hi will do as gp should know by now xx
So sorry to read your post it must have been totally unexpected. We've all been guilty of putting diverse symptoms down to fibro then unfortunately finding out it is something g else entirely.I agree with Fra22-57 and I think you should ask for a second opinion. So many practitioners seem to write us off after a certain age. You should at least have had a care plan. Please let us know how you get on,x
Oh dear, that’s awful. What a shock!surely they don’t expect you to just deal with it on your own. Have they given you a prognosis?
I can’t even imagine how you’re feeling at the moment. You must be worried sick. Sending you a gentle hug 🤗 and healing vibes.
Hi that was two weeks ago I was given that diagnosis and been left without advise or guidance. Ive recieved an appointment to go for dye injected ct scan and follow up appointment this month to see the consultant who gave me the news. Yes ladies I am devastated I keep thinking it cannot be true then am I really going to die.which is silly everyone has to die eventually. But I'm emotionally all over the place.. ty for your comforting thoughts will update when I know more much love and appreciation for your kind thoughts.🩷
Pinot I'm sorry. I can't write the sympathetic swear words.Everything you described I've been doing since 2002. I'd put socks in the freezer or planted my house keys in a plant pot. Took me 3 weeks to find them🙄. I've always put it down to stress. Even the Gp said it was. They know I've had a headache for 4 years and longer..
I often take 2 lots of my meds. Can't remember if I took them.
I'm desperately sorry for you and your situation.
I will speak to my Gp .
Big and gentle hugs 🤗🤗Dawn🤗🤗🤗🙏🙏🙏
Ty so much Dawn for taking the time to answer my post. I just thought it might help others to not just accept that every condition is down to fibro. Absolutely awful condition. I went downstairs to put my washing in the dryer😱😜I hadn't switched on the washing machine doh! Hope you get an easier day xx bless you sweetheart 🩷
Morning sweetie🤗Debsdelight72 is spot on. You're being let down badly by the medical profession!
It seems if you don't complain they ignore you.
Please complain !!!
Pinot, have a better day sweetie hugs Dawn 🤗🤗🤗🙃🤗🤗🤗🤗
First of all Pinot, WHAT THE CHUFF???
Have you been back to your GP? They have to give you a care plan, They have a duty of care,
I don't want to seem as if I'm giving pitty words, But seriously ..... WHAT THE CHUFF?
I have post it notes every where,I'm forever forgetting stuff, I keep calling 1 of my neighbours Dave, His name is John, same as my Hubby we've lived here 8yrs ?? I'm fairly sure mine is the fibro brain fog and I've had 2 mini strokes,
But seriously WHAT THE ACTUAL CHUFF?? I can't even imagine what you are going through right now, Please tell me you have a good support group? If not,why not?
I see you've been with the group for a good few yrs, I hope you are not on your own, Did they say what will happen for your time your here,ie with pain management etc, Sorry I'm coming across maybe being nosy or forward, I really I don't mean for it to be that way, I just couldn't possibly think how you must feel,
My heart goes out to you and you are in my thoughts, I would say I'm speechless but looking at the amount of time I waffle on????
But I don't know how to express myself with a 2 word reply to anyone,
Sending you love and kindness and I know this emoji gets used a lot but seriously??
🫂🫂🫂🫂🫂🤗🤗🤗🤗🤗🫂🫂🫂🫂🫂🤗🤗🤗🤗🤗🫂🫂🫂🫂🫂🤗🤗🤗🤗🤗
Ty so much debs I really appreciate all your kind thoughts,love and support.ive not heard a word from my gp,I've recieved a appointment for ct scan this month then an appointment to see Dr. Who sent me for the mri scan. I have managed to get some booklets and now written out questions I need answers to about care plan and what the future holds for me..I'm a practical person so if I know what I'm dealing with I can sort stuff out but I just felt left in the dark with all this business.. I really appreciate you taking time to advise me..so thank you so much. I will let you know what the plan is when they tell me ...your support has been brilliant...hope you all keep well or as well as can be when you have the nasty fibro.it has been really good to share and be listened to so ty. Take good care of yourself 🩷🕯🙏
Your most welcome pinot, I hope you have minimal pain today, My sister and Nana wrote us all letters and we all were told not to open until after cremation,
That was 5years ago and I keep that letter under my pillow,
Might seem weird but it's actually quite soothing,
Take care Debs
Aww debs that was a comforting story..my friend had cancer and before he died we went to the beach and collected pebbles and painted them and everyone was given one to keep they all had personal messages. Such a lovely thing to do... ct scan due 17th of this month then see consultant end of the month so maybe I will know a bit more by the beginning of May and can put things into place. There are many people I've not told about this diagnosis. So want to be armed with the facts...ty for all your warm and kind thoughts they are so appreciated 🩷🕯🙏
Fibro is so variable this lack of looking at other causes is almost inevitable.. Thank you for reminding us all. Especially in the midst of yours. Diagnoses are often, but not always, followed by "The Waiting Game" adding to the daily complications of fibro. I have a friend with ms and inop tumour (both diagnosed after saying I think you may have a brain bleed, let's get you checked out, after googling) it took ages, but during covid. Full diagnoses are something to work with moving forward. You'll get more answers quicker after your next tests. Big hugs. Stay positive. Thinking of you and powering you on! X
Hi thank you so much for your kind positive words it's gratefully recieved..I'm pleased if my post helps others to be aware of everything fibro related is not always fibro so always insist on a proper diagnosis...hope your having an easy day and taking it easy I will keep you updated on the medical proceedings I've a ct scan 17th of this month and folow up appointment so here's hoping I'm a bit more informed and I can make some plans.im not being very patient but I'm anxious not to waste time. Anyway ty once again your thoughts and words are a great comfort. 🩷🕯🙏
Good Morning Pinot
0348 I'm Sat in my bed, debating weather I should try again to sleep ? Or wait to hear the birds wake up first?
Just wishing you well on your scan today,
Sending good thoughts to you and plenty of gentle hugs
Take care
Debs x🤗🤗🤗
Hi pinot,
I hope your scan went well and you were not kept waiting for too long,
Positive thoughts and love and kindness always to give
Take care Debs x
Ty debs I went to appointment only to be told the ct scan had been cancelled and a new appointment had been arranged and its for an mri this time I was so upset three other appointments were cancelled due to the new scan has to be seen after the scan. it's most annoying they can't even tell you it's been cancelled what a waste of time.Will keep you posted ty for your concern it reall is appreciated. Xx
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