frustrated

[Woollover]

does anyone else feel totally unsupported with fnd. Nothing seems available even a gp appointment is hard to get. Living with constant discomfort/pain and v reduced mobility is getting me down and no support seems available. If i had parkinsons there is loads of support. How come we get left out in the cold! Sorry bad night with burning sensation in legs and feeling utterly fed up!

[GreenCottage]

I live in Wales UK. There is no pathway whatsoever here. I'm having to make my own way. My GP is interested, he has recently prescribed low dose 10mg Amitriptyline for my pain and sensory symptoms. I had a big reaction to Sertraline after one dose! I've only been using Amitriptyline for a week but there is a slight improvement in that my sleep is better. Research that I have done indicates that the tricyclic antidepressants can help with pain and sensory symptoms sometimes and you have to get the dose right for you.Getting to good diaphragmatic breathing crops up everywhere I research, there's plenty of stuff on line to teach yourself, I have found a breathwork practitioner near me. I'm trying to find a good psychotherapist I can get on with but it's not that easy where I live and I can not travel too far.

I have a friend who is a clinical psychologist he says that in most cases you have to find what works for you.

There are plenty of positive stories of people who do well, they seem to be determined people who try different things, I'm trying to follow their lead, but I do not succeed every day!

If you are able to do some reading and research you may find, like I have, some common themes start to crop up which give some clues as to what to try.

I search on FND treatment and FND recovery and also Conversion Disorder treatment and recovery and try to stick to reliable sources of information.

Getting better seems to take time, don't give up and take it one day at a time.

[Lady4 in reply to GreenCottage]

You may be able to get a online psychologist who is experienced with FND. I found one which I thought would help my son but can't recall who gave me the name. Think it was from a member on Re-Active but he wasn't interested. It was when he was dealing with lots of different symptoms. She was UK based.

[Shimmyaway]

I think all of us with FND recognise how difficult it is to get treatment, especially as we all have different symptoms, and many medics are not well informed about FND. I have tried to educate my GP by giving her references etc, and she has not taken this amiss. As weak limbs are one of your problems, could you give your GP the information supplied by Lady4 about 'physio4fmd' ..there is even a workbook...so failing referral, DIY could be an option. I asked my GP to refer me to a hosp dealing with orthopaedics for physio, but got a rejection saying they don't take patients with neuropsychiatric issues !! I did find out later that the physio4fmd programme is not for the hyperkinetic variety but a blanket refusal for fnd patients is awful. Feeling unsupported only adds to the misery of FND, As someone on here once put it, 'We have to be our own doctors' so don't give up on what you have to power to do for yourself.

[Woollover in reply to Shimmyaway]

Thankyou. For a short time I did have an nhs fnd physio but they had their funding stopped! It seems so wrong that our condition is so neglected. On the whole i cope but when i am short of sleep and in pain i get really down about it. On a positive note i have just succeeded in getting a blue disability badge which is a great help. The neurologist who initially “diagnosed me was horrible and said i had Thought my way into it and could think may way out of it”. …. ie all my fault. My initial gp was also v unhelpful just saying my walking issues made no sense to him.

So some days i just get a severe case of the “poor old me’s”!!!! Thanks for your supportive reply. ☺️

[Shimmyaway]

HI Woollover .. Below is info posted 8 years ago, relating to how to help your walking ..advice from Glen Nielsen,..neuro physio, and author of the latest 'physio4fmd' paper..still working at St George's London.....

After18 Mths I had the 5 days with the lovely Neuro Physio Glenn Nielsen ( Google him based at UCL London really understands FND

So here goes....

Day 1 -looked at my aims. Measured steps per 10 Metres walk. I did 18 steps per 11 seconds at start and 14 steps in 7 seconds at discharge 5 days later !

Learnt sit to stand to sit ..how to be more stable ...

BEST BIT - before starting to walk - gently sway from side to side then put weight on front of feet then ...gradually move forward...wide stance...felt more stable....swing arms more......I now use this if my limp comes back as the idea is to STOP as soon your 'old' way of walking comes back and use this sway to RESET...then off you go again .....I use it in the street I don't care who is watching ...

[Woollover in reply to Shimmyaway]

Thankyou so much. Will give it a go☺️