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[kev60]

hi i have just found out i am being sent to SLAM for PPS( persistent physical symptoms service) appears apart from FND and GORD and long Covid all my pain (chest, abdominal and spine) do not have a medical answer. Has anybody else had this treatment?

[cocoferraro]

Hi there,No did not get offered this treatment, but was referred to a FND rehabilitation centre, which I though was a laugh but will try anything, so went and it really did help, so in my opinion perhaps it is worth a try, not many people are offered any help, so think it is good, you never know it may be of great help to you, when I went they tried to help with the mental syptoms contected with the brain that makes this dissorder worse, they try to reverse the symptoms, if this makes sense to you! All in all it did help a little and all the people, nurses and staff were really fab as they realised what effects FND had on people and were ready to talk about it, please go, and I wish you all the luck in the worldX

[kev60 in reply to cocoferraro]

thanks for the reply, i will be taking it up just have to wait for appointment . it does get you down when the neurologist (i had 2) tell you this is whats wrong and we cannot do anything for you, iwent to an FND seminar and they explained how they use physio, phychiatry and other therapies to aid you and then don't offer it. i have been on two trials so far one for neurophysio but this was cut short by covid (and was working) and a trial for memory problems but that just confirmed that i have memory problems. so am willing to try anything although they did say i may not get back to normal. thanks for your input . kevin

[cocoferraro in reply to kev60]

Hi there,I read your emai lwith great interest.

It sounds like you have been offered some intersting things, as I was not offered all that you have, understand what you are saying as when I went covid was not heard of. it is more difficult now on the NHS service. Yes, you will have memory problems, and I think that FND will always give us memory problems, mine is so bad but I have hubbie to help me on what I forget.

I note that you said that you are working, which is really good.

Do not think that we will ever get our memory back as normal,

perhaps it is better to got with the flow? this is how it is and how it is going to be, so maybe have to adjust????

What do you think?

Have found that now I am permanently at home have adjusted really well, My memory is very bad, but have hubbie and write notes on fridge to remind me of everything, but if you still have to work then can understand that it must be sooooo hard,

Wishing you luck x

[kev60 in reply to cocoferraro]

hi, I have not worked since june 2018, I went to work one day and was ok until i got there and then i just began to sway about a foot either way and as i worked with glass(shop windows) it was deemed to dangerous and i was sent home, went to the gp and they sent me to a&e then 8 hrs later transfered to Kings (they thought i had stroke) then i was discharged (3days later) had to fight to get a Neurology appointment and my gp helped then 18 months later FND. unfortunately for me i seem to had gained various ailments copd , gord and now long covid, so at the moment i suffer with pain abdominal, chest and spine so have more bad days than good. I am still working out what i can and cannot do. i did try shelf stacking for sainsburys but cannot pick up from floor and to unsteady on my feet. Neurology did tell me i would probably not work again. i find i search a lot for FND and read up on it the only problem is i forget most of it and have to reread it. in answer to what i think , i like to have information it just hard now as i do not remember it although it is still there as i do remember things but it maybe a week later so slightly frustrated. i live one day at time depends on pain levels and how tired i am , i can sleep up to 30hrs at a time. i am lucky i have my wife to hold on to when im out or at hospital. sorry to go on once i start you know. if i learn anything that will help us i will let you know. wishing you luck too. kevin

[cocoferraro in reply to kev60]

Hi once again Kevin,I was sorry to hear that the symtoms made you lose your job, I can understand, working with glass,

I have not worked since I was 40, Not what you think, my second hubbie prefered me to stay at home and for him to be the bread winner, and I was quite happy to. When I was 47 and diagnosed with FND, knowbody has even asked why I dont work, Have you PIP? as this is almost deciding for me, was classed as dissabled.

We all need to live and pay our bills, I had never heard of PIP until a nurse at my neurological appointment told me about it.

Unfortunately, with FND we all seem to get a lot of different symtoms, as you say COPD, and so sorry to hear....long covid, dont think you should be working at present, please try to get some financial help, so as you can rest at home.

I too read up on all the FND that I could and realised that everybod is similar but can have a lot of different symptoms and side effects.

I stopped reading up on FND now and just try to live my life the best I can. At some time in our lives we have to accept it.

The best thing is that you have a wife who understands and is trying to do the best for you. I have a hubbie who is the same. And between us all, we will find a way, but its so good if your partner understands and helps out, not everybody has that.

I do wish you luck, and you sound like a fighter, so keep fighting on....

the best of luck to you, PS, this is really going to sound weird, but have you ever thought of getting a dog?? as can be of great help, something to consentrate on, something that needs you, and good to try to go on walks.......just a thought!!!

best of luck to you and yoursx Jane

[SNOW10 in reply to kev60]

Dont be hard on yourself if you forget alot part of our brains now. What I do to help me with things is set alarms on my phone, have a small notebook to remind me of my to do list, also have list on my phone, everything I suppose to talk with doctor about I try to write down through out the days before my appointment and also place in my phone too if I forget notebook, also use sticky notes to help place around also. The goal really is listening to your body, once you understand the new you and what works for you it will get a little easier. Do things that make you happy & relaxed as much as your body allow. I do things now like art painting & coloring book,cleaning is a form a therapy for me (have my chair close by though lol), cartoon instead of things like the news,meditate, music, I do a light workout & stretch on trampoline better on my joints. I'm happy your getting sleep (may seem like alot), I barely get any its been 1 to 2 hours of sleep for me lately since my last ER visit. As far as physical therapy, I done my own & in the beginning my caregiver (Friend) remind me to move my legs as much as I could after my seziures in the bed(bed therapy) and ever since then I have been in control of my own physical therapy because I havent been offered any since the one day I was in the hospital but admitted for days only received rehab one day out of my entire stay. Only things that have been provided to me is telemedicine with neuropsychastrist & neurology nothing further than talking to a psychologist. All my neurologist tells me to read a take control seziure book recommended by her neuropsychastrist. Also threated to place me in patient psycho facility but I refused because I felt like being in that environment would just make me worse but that was referred by the neuro in of the hospital not above neuro speaking of.What my primary care help with is meds (zofran & flexeril ) to help with some of my symptoms.