Hello Again!
woodbon
Member Posts: 4,969
Hello,
I don't know if anyone will still remember me, but I've been off the formum for quite a few months now. Sorry, nothing to do with the formum, just me - I started training with the Citizen's Advice and found it took up a lot of time.
After a while things started to pile up at home and nothing seemed to get finished and I only did 2 sessions a week, plus 'homework'. I started to feel unwell. I saw my GP and she arranged an appointment with the Rheumatologist at the hospital.
I wasn't too keen on going, as I have been before and not got anywhere much, but this time I saw a female doctor and she asked me lots of questions and examined me (she found the tender spots and said she could feel I was in pain). She said she thinks its Fibromyalegia, but is sending me for an MRI of the spine, to rule out AS or anything else, as my Mum had that and I carry the gene, which dosn't mean I will get it just that I have a higher chance and some of my symptoms could be linked. I spent over an hour with her and when I came out, although sore and tired, I feel that at last the hospital are taking it seriously. She said my GP had given me all the right medications and she couldn't add anything but is talking about a sleep clinic which helps some suffers. I go back in December.
Sorry to bore you all with this, but I thought I should tell you and also all the people who are having similar problems with diagnosis, its worth keeping on. No cure but at least an explanation for he pain and forgetting things - I thought I had dementia, seriously.
I don't know if anyone will still remember me, but I've been off the formum for quite a few months now. Sorry, nothing to do with the formum, just me - I started training with the Citizen's Advice and found it took up a lot of time.
After a while things started to pile up at home and nothing seemed to get finished and I only did 2 sessions a week, plus 'homework'. I started to feel unwell. I saw my GP and she arranged an appointment with the Rheumatologist at the hospital.
I wasn't too keen on going, as I have been before and not got anywhere much, but this time I saw a female doctor and she asked me lots of questions and examined me (she found the tender spots and said she could feel I was in pain). She said she thinks its Fibromyalegia, but is sending me for an MRI of the spine, to rule out AS or anything else, as my Mum had that and I carry the gene, which dosn't mean I will get it just that I have a higher chance and some of my symptoms could be linked. I spent over an hour with her and when I came out, although sore and tired, I feel that at last the hospital are taking it seriously. She said my GP had given me all the right medications and she couldn't add anything but is talking about a sleep clinic which helps some suffers. I go back in December.
Sorry to bore you all with this, but I thought I should tell you and also all the people who are having similar problems with diagnosis, its worth keeping on. No cure but at least an explanation for he pain and forgetting things - I thought I had dementia, seriously.
0
Comments
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Hi Sue
I wondered where you were.
Well that does sound like a satisfactory appointment.....when you feel you're getting somewhere it makes a difference...doesn't it?
Take care and don't over-do it
Love
Hileena0 -
Hi, I remember you.
It's good to hear you are being listened to, and are on the road to a diagnosis. It sounds as though you have a good Rheumy there.
Are you still doing your CAB work, or did you have to give it up?
I hope things work out well for you, and look forward to seeing you post in the future.
Take care,
Numpty0 -
Hello Sue. Of course I remember you and I also remember the CAB course.
I’m sorry things have been difficult. It must have been dreadful for you if you felt you might have dementia.
It’s a pity, in one way, that you’re already taking the right meds if it turns out to be fibro so no more help on that front but at least you’ll know what’s wrong and maybe the sleep clinic will help.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hello Sue
of course I remember you, and its good to have you back and good for you doing the course, but sorry you have been suffering....doesn't it make a difference when you get a good consultant...I do hope they get to the bottom of what is going on very soon..now you take care of yourself...and good luck with the course xxLove
Barbara0 -
Hi,
I have severe FM. I was diagnosed by a female Rheumy too, coincidence or are they on the look out for it more I wonder?!
Pain clinics often run FM coping skills courses, they're brilliant!! I attended one at RNHRD in Bath. I found out that eating a banana a few hours b4 bed can help with sleep, they produce an enzyme we're short of that helps produce another compound which aids sleep. (forgive my big generalizations, fm really does mess ure head & memory up :? )
I was very worried about early onset dementia too, I'd completely lose words, names ... well all sorts. Thankfully I've learned to laugh at it now & I have to use descriptions wen I just can't say wot I want to, people that know you well will get to understand you soon enough I've found that setting reminders & alarms for everything can really help coz I tried writing things down but then I'd forget to look at it.Lol
The pain is very debilitating. As we dont reach stage 4 restorative sleep, which is wen our brain releases chemicals throughout our bodies that help to heal us, the pain builds & builds. We actually start to release 'substance p' which can turn our nerve endings into pain receptors all around our bodies!!
I'm sorry, im sure you know all of this :?
Regarding sleep, I've had insomnia for years. I'm completely unable to work or even volunteer now so I tend to sleep as & wen the fatigue over takes me!! I've tried forcing myself to stay awake for days in the hope I'll sleep at night but it's never, ever worked for me. My way goes against all we're taught for healthy sleeping but it's the only thing that works for me.
I'm so sorry that uve received an fm diagnosis coz I call it 'The life Stealer' as that's exactly how it's left me feeling I wish you all the best & any help ure offered I'd suggest grabbing with both hands. It's not all bad tho, there are lots of support groups & many, many people have it so support is there. Take it one day at a time & ul learn to cope soon enough (((hugs)))
Good luck.xHealing Hugs
Debbie.x0 -
Hi Sue, Yes I remember you! So sorry your suffering with your back. I hope the MRI will show what is the cause of your pain and can help you with the pain relief.0
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Hi,
Thank you all for remembering me.
One of the good things about the diagnosis is that although the pain is quite horrible at times, I feel justified in resting. I know it sounds silly, but I really was beginning to think it was all in my mind. And yes, although I tried to joke about forgetting things, I was worried about dementia. I am sorry I can't do the CAB training, but at least I've tried. I
I was dreading the hospital visit and was sure it would be another waste of time, but it was good to be proved wrong.
Lots of love Suexxx0 -
Hi Sue
I'm new here I am afraid I don't know you, I just want to say how glad I am you are on your way to a diagnosis, it is very frustrating when you feel that doctors think it is all in your head. I can understand you being concerned about dementia, I am going through the same at the moment and have saw a neurophyscologist and waiting on tests getting done, it must be a weight off your mind Sue I am so pleased someone is listening to you at last...............tc..............Marie xxSmile a while and while you smile
smile another smile and soon there
will be miles and miles of smiles
just because you smiled I wish your
day is full of Smiles0
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