FND SUCKS

[Luv2teezeu]

Hi I'm Debby and I'm in the USA in Utah. I have been dealing with constant pain all over, abdominal pain, constipation that lasted sometimes 17 days with no help from anything, slirred speech, loss of the ability to walk flat( I walk on my tipsy toes) and need a cane, walker or scooter to get around. I cry, I want to give up, I pray to not wake up, but with the help of my neurologist I started OT, PT and Speech each 2 to 3 times a week which is a lot but I'm very slowly learning to relearn every day living with FND. I'm single and alone and just the thought of another health issue has torn me apart. I'm 54 but I feel older than my 80 year old parents especially when I see them doing more than I can do. I found for me that each out to tic tok and social media helps me mentally. I started seeing a therapist and doing EMDR and even though it's just starting I have HOPE. if you need to chat please reach out to me and I'll do my best to help out or answer questions. Luv you all and don't give up!!!! Deb

[Louiselovesyellow]

Oh dear… you are really struggling, bless you 😔. I was where you are a couple of years ago - I felt like there was no help for my pain and symptoms. I have to say I now feel a lot better so don’t lose hope. I didn’t have the walking on tippy toes thing but my leg muscles were in spasm on and off all the time - tonic, clonic and myoclonic jerks. Diazepam really helped my muscles relax, which in turn helped the pain. I also have recently found Pregabalin for pain management and it is excellent! I am in the UK by the way. I have been in pain for 3 years but this drug (gabapentin is another type but I had an allergic reaction to that) has just taken the pain away. I know it doesn’t work for everyone but it might at least be worth a discussion with your GP. I also struggle with constipation which has hospitalised me now 4 times because I got gut infections. I now have to take Movicol/Laxido sachets every day. I adjust the dose to keep me regular but I do take an opioid based nerve pain killer as well called Tapentadol which adds to the constipation. All of the above drugs cause constipation but the sachets stop it from being a problem. I’m not sure if you’ll be able to take any of these medications but from the sounds of it you are really struggling so it could be worth mentioning to a relevant medical professional? Good luck and I hope you get some relief and feel better soon. PS. I use a wheelchair when I’m out so that I don’t fall but manage with the walls in my house. Sending love from a fellow FND sufferer. It’s a horrible condition xxx

[Luv2teezeu in reply to Louiselovesyellow]

I would luv to email with you if your ok with that. My email is [e-mail]. hope to hear from you Deb

[Luv2teezeu in reply to Louiselovesyellow]

you are amazing!and thank you for responding I will check out the mediations that you told me about cause I've never heard of them except Valium. I would like to chat some more and made an email just so we can stay anonymous. It's my ID herhere at GmaiGmail.

[Louiselovesyellow in reply to Luv2teezeu]

Ah! I’m so glad to be able to maybe help someone else struggling with this condition! I have to say, a few weeks in, I am getting some pain and jerks back but it could be due to overdoing it. I felt so much better I just wanted to get doing stuff! It’s been 3 years! But I actually think it might not have been a good idea. Hopefully rest will restore me back to the pre-overactivity me 🤞🏻. I’ll think about the email. I’d have to create a new one too, I guess… A lovely idea, I’m just cautious. Thanks so much, though. Do you have similar symptoms to me? Xx

[Luv2teezeu in reply to Louiselovesyellow]

yes, I've been doing ot,pt and speech 3 times a week each and things are slowly getting better. But

It took 18 months to get diagnosed. But I'm glad I finally found some answeranswers. If I over do it in down for days but I'm starting to know my limits and I'm keeping a diary which really help to see what triggers my pain and other issues. I hope you have a great day today!💜💜💜💜💜💜

[Lady4]

Oh bless you, a lot to deal with but it does sound like you have a good team behind you which is a positive and its always best to start with the symptoms that are causing you the most trouble, which sounds like what you are doing and having a team that work together and communicate effectively is priceless.

Just remember to give yourself time to re-centre, mindfulness can help and tomorr is another day and although along the journey you may have a few set backs (think of it like a windy road) you will get there in the end.

We are all here for each other, hugs x