I was diagonised in Feb 2014 with Somitisation which I believe is similar to fnd and nead also , I had a mini stroke in August 2013 but with determination and hard work regained the use of course always weak bit got it back
Was very lucky tk be moved into a bungalow and had two operations on bowel since and to be honest o have never recovered
I was doing well in December and the good thing is no seizures since October however had loads of stress since then and my condition just seems to have gone comp,steely wrong , to the point of giving up , mental health have got involved etc really just come back to say hello and any advice appreciated as I have come off Facebook as need to detach myself from seeing other people having fun and me bejng stuck in bed
My carer who took the piss esculent my French has fine thank god left me in bed for 24 hrs without checking in me and forgot my medication so now on the look for a new one
Feel,helpless all I can do is feed my cat make cups of,tea and lucky if i awake for 5 hours a day at present , my bladder seems to be losing control , I am on codeine and 5 mg diazeoam as well as my 2800 mg of gabeoentin to and still no joy
Helpppppppp
Written by
Missclc
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Sorry your having such a rough time of it I totally understand how you feel... I can feel your frustration.
The carer is totally out of order 😠 I urge you to file a complaint.
I am newly diagnosed with FND and are still trying to come to terms with it, every day is a up hill battle.
This community has really help me the advice and kind words have restored my faith in mankind. Please don't ever feel alone we are all in the same boat.
Thank u so much yes kind words are all I need at this awful time , I am hiding away and just trying to deal with my emotions and set back I haven't been like this since October and it's horrible when it sets in . I have daid to myself this is my time to not feel guilty , do what o want and hope to see light at end of tunnel
I am very isolated where I live and I find it hard but in the mean time I need this tranquil place to recover , the carer I haven't got a leg to stand on as I employ myself so nothing to cover me
I am sure I will find someone very quickly as I pay well and I am a lovely bubbly fun person to be around , she never seen me this I'll liked it when we were in hokiday inky last month but funny when u get ill and the person then leaves u in dispari and said she was ill but didn't think to tell me and ....
My life at present is with my cat we are managing to make cuppas and I just out a ready meal on oven before I fall asleep stew and dumplings lol , going to have to go bk to shopping online but so difficult with my condition as I never know what I fancy to eat , skme days I really want to give in I was supposed to have my children this week for half term and just so poorly had to say no not seen them since Xmas as distance is crazy is ther light I hope so and thank u
Before the FND I was very outgoing and enjoyed the out doors. I am now a full-time wheelchair user (which sucks) I am lucky I have a husband that is my rock. I try everyday to focus on the positves and remind myself I have plenty to be thankful for.
You mentioned about isolation is they anyway you could go out? Are you getting enough support?
On a lighter note I'm a big cat lover I have 2 and they are the best kind of therapy. Ha!
I can go out when I get my care sorted but at present I have no one I feel Bn another stroke coming on or feels like it I have Bn sleeping since Saturday constant with a three hour break I am going to ring doc in morning as feel so worried and I'll I was so sad this morning I even had wet myself how awful is that seems my whole body is giving up and frightened I just went in kitchen and managed to cook three sausages under grill and my toaster was on top of oven and I have burnt all under neath it lucky I didn't have a fire , going to ring social services tomo too only been awake two hours today so not had chance . Bkess I your lucky to have your husband bless him u are an inspiration xx
That's a crazy time you're having! Really hope you feel better soon.
With 2800mg of gabapentin no wonder your sleeping lots! I found on that amount wheb I was admitted to the a&e with retention of bladder.. The doctor told me that he knows some patients can loose function from bladder due to gabapentin.. So that's something to maybe ask.
I do hope you are getting help from local authority in regards to carers. No matter what your disability, the local authority needs to provide
Glad the mental health team are getting involved... It's a stressful time you are going through and to have trained people to talk to will Help you indeed.
Thanks very much well,I was on this amount in Dec 2014 when I was admitted to neuro unit, then they tried to reduce got me down to 900 mg snd was stuck in bed fkr s month so they gradually increased to the final one in January so bk up to where I started .
Yes bladder control horrid but back with my go on Friday as she is amazing tbh , but I don't know what the answer is seems I seem to be stuck in a big rut my lower bk seems to now be giving up and my tumour in neck is awful .
I do get allowance for care but my own boss and when this happens u have to go and recruit yourself and it's hard when your stuck in bed tbh .
Got a friend ciming to stay for two days so they Guna step in and mental health on Thursday need to really help me, as at present my mood is horrendous , to the point I can't even be bothered to talk to my children but that's my ex hubbies fault , haven't been able to see them this half term to this illness
Glad I on this site as I feel this will help me as I have come off Facebook as I feel it doesn't help me when I see people having fun with kids etc and me stuck here . This is the first time since Jan I been stuck like this so should be thank ful I guess just get disappointed as seen okay to the point was cutting my lawns two weeks ago to now boom , I hate these crashes they come quick and so hard to cope , I am definitely getting these new carers to the max as I cannot be let down anymore , I was wi an agency before but they were awful ad. Like the idea of indeoendant as u can be more flexible and they able to take u out and to appointment etc and if u need more help one day than the other it's better but who knows keep in touch need lots of support at present
Also, how long on gabapentin and for what reasons ? All drugs can have side effects and was wondering if this may be a factor. Diazepam will certainly make you sleepy !
You mentioned a mini stroke in 2013, this was official and medically confirmed and is this when your problems started ? May I ask what the bowel ops were for and what the resulting affects were ? Sorry for lots of questions but just trying to piece together your medical history, as it can all have some bearing on your current condition.
Do you have any symptoms of urine infection - burning when going, back pain etc ?
Do you have family, friends or neighbours who could help you access the services you need? Definitely get in touch with social services, also GP if you feel your current condition could be due to an infection or drug reaction.
Paracetomol is a generally safe painkiller and has the added bonus of reducing inflammation and calming the nervous system.
I assume you had scans/tests before your FND diagnosis ?
I'll shut up with the questions now and just send best wishes,
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