I’m Louise and I was diagnosed with FND in May 2021 by a neuropsychiatrist after developing tonic, clonic and myoclonic jerks in my right arm and leg which happens every 30 seconds or so, as well as limb posturing and tremors intermittently but several times an hour. I have joint and muscle pain, brain fog, difficulty walking, get very hot and sweaty intermittently, struggle to urinate without running a tap, have occasional blurred vision, have chronic fatigue and am exhausted all the time, I get a strange water trickling down my leg sensation multiple times a day and have zero libido.
In August 23, I was hospitalised with a blocked colon which, when it was unblocked and they’d performed a colonoscopy, they saw was very inflamed and ulcerated. They prescribed a tapering dose of prednisolone steroids starting at 40mg for 2 weeks and reducing by 5mg a week.
My question is this - does FND normally respond to steroids? While I was on the steroids, pretty much all my symptoms went away. Not completely but I would say 80-90% better. Could I actually have a different condition? I just wondered if anyone else had a similar experience to share??
Thank you ☺️.
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Louiselovesyellow
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Its really strange reading this as i was given Steroids for something else and whilst i was on them i found that my movement was alot better i told my gp this and he said it was the power of the mind 🤨Im really glad someone else found some ease to there FND though steroids.
I don’t think it was in my head! At all! 🙄 That would have really annoyed me if my GP had said that! Thanks for letting me know. I think it confirms that there is something physical going on that they just can’t see 🤷♀️ xx
With FND your symptoms can come and go, so I think it would be hard to tell if it was the steroids that helped.I have also had weird sensations in my legs, a burning feeling and a crawling feeling as if theres a spider inside my leg it freaks me out, also get itching all over my body and sometimes get pain that feels like an electric shock.I hope that it is the steroids that are helping and not just your symptoms coming and going.Good luck.
Thank you for your kind words 😊. I also get the electric shock feeling and also sometimes a feeling of just having electricity running through my body. Horrible! 😣
Ask for a rhumatologist. I was misdiagnosed with fnd and everything that help inflammation help my symptom. I now have a diagnosis of spondylarthritis. I had all your symtom without the colon part but i had diarrhea before the joint pain. I also got some episode last year of feeling water on skin like you. In your case it can be chrohn disease with arthritis. They got often together. From my experience neurologist don't think outside their field. You can also ask your gastrologist for the chrohn disease if your colon was inflammed. Did you told him about the joint pain? You got more chance he gonna think about something else then the neurologist. Good luck and keep fighting. I was sure it wasn't fnd and i was right. Fnd is for me last resort after everything is tested.
Thanks for your advice 😊. They did know all about my joint pains when I was in hospital and I was visited twice by the rheumatologist team. They said they did think it was anything in their department as there is no joint swelling 🤷♀️. Gastroenterology wrote to me today and are repeating all my tests because although there is some mild disease for Crohn’s present and lots of ulceration, there was also some viral cells so they want to see what’s changed since I was in hospital in August/September time. It’s so frustrating! There is so much going on! I also have chronic aural migraines and regularly have flashing episodes on my vision as well! Feeling fed up! I agree that it feels like something Rheumatology could help with… I just get pushed from one to the next. Neurology refused to see me in the hospital 🤦♀️.
It took me two years because i didn't have swelling. The pain start before and in march it start with a finger not able to bent, had plantar fasciite and now achille tendonitis. Pain in my jaw and ribs. Skin rash. Stay the course with the gastrologist. Maybe it's just a question of time then the rhumy gotta got your swollen joint. It's weird but I was so happy when i saw the plastic surgeon (because my gp tought it was a gachette finger)all my finger was swollen. After that he transfer me to rhumathologist. Check for crohn disease and joint pain and be patient. For them they need proof so we need to be in really bad shape. If some swollen happen take picture. Did they do some mri of the back and the articulation?
I had a stuck finger some years ago called trigger finger! I have had joint swelling in my ankle and wrist which I photographed 👌🏻😊. My GP just mentioned having an MRI of my back, as it happens because of the weird water sensation. Thanks! This is really helpful! Xx
My mri didn't show anything but the rhumathologist think it's because the hospital where it was done are not good at reading for sacro illiite. And i had a lot of blood test for ra, lupus, ana done. Check on internet for spondyloarthritis. It's the last one to be rule out because almost everything need to came back negatif but good response to ains and anti inflammatory medication is a sign. And it can happen a lot with crohn. But with women it's more rare so they don't think of it. I was lucky my rhumatologist didn't bother with the mri and start me on biologic. He is a specialist in spondyloarthritis so he didn't dismiss me because it's suppose to be a male disease. You can check, there's over 100 kind of arthritis. Check your symptom and fight. It's tuff but i think i'm seeing the light at the end of the tunnel. And check uveitis. I have symptom of it but they didn't find it. Everything with cortisone, for the skin, for thd eye... help. If you have photograph of inflammation, why did they didn't test you for RA, lupus, and all the other kind of arthritis?
They didn’t seem interested and just wanted me discharged… I think they were under pressure for the bed so they just gave a blood transfusion and discharged me 🤷♀️. Thanks for all your help, I really appreciate xx
You mentioned "they saw was very inflamed and ulcerated" my other son got diagnosed with ulcerative colitis earlier this year and that is managed by diet and some meds (it took a while and a few scary hospitalisation periods to get a medication he could tolerate. I have heard someone mention the burning and itching sensation with a reference to a website "burning nights" or something like that. Might be worth checking their forums/advice too.
I was recently researching B12 deficiency as wanted my sons bloods done again and B12 ruled out, as I hear it come up in discussion threads and it mentioned:Paresthesia is an abnormal sensation of the skin (tingling, pricking, chilling, burning, numbness) with no apparent physical cause.
Also an article I read in the Express & Star has a story about lady having electric shock feeling (the latest symptom) and many years later B12 deficiency was identified. Just a thought.
I’m pretty sure they’ve been testing my B12 and it’s okay. I have kept mentioning it because I was vegan for 4 and a half years and vegans can be B12 deficient. I agree, it does make sense but they said it’s not that 🤷♀️. I’ve had to start eating meat and fish now anyway as soy is the only complete protein and I’m intolerant of that ☹️. Thanks for your advice ☺️. Xxx
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