Functional sensory disorder

[Recovery2017]

I would very much like to hear from anyone suffering from diffuse sensory problems. Is there anything that helps? Some people have mentioned a gluten free diet.

Best wishes

Olivia

[Moomba]

Hi Olivia I have fibromyalgia and was later diagnosed with FND by Dr John Stone after a 3 hour private consultation. check out his website if you have not already. (neurosymptoms.org/#/symptom...

My sensory symptoms are dry eyes,mouth tinnitus blurred vision, hazy dizziness when turning head, loss of smell and taste ,night vision issues, noise and light intolerance and concentration issues. Body wide allodynia, burning skin.

I have found going gluten free, dairy free, avoiding eggs, and a very low sugar diet i.e avoid it at all costs seems to help with the systems.

Avoid the triggers that will set it off seems obvious but loud noise, strong light, etc.

Keep well hydrated , with water as any stress on the body will set off symptoms, gentle exercise also helps I do swimming and the exercise bike as well as low impact weights , this helps the mind feeling that is achieving , it is to easy to sit back and say I can't do it but if you try , you find that over time symptoms become tolerable ,

Sleep is also important a good nights rest , or a good nap in the afternoon seems to help the brain relax again.

Medication currently is 90mg of duloxetine and 2700 mg of Gabpaentin with other medications for other issues. I have found the combo of the Dulox and Gab to be very effective in the burning pain and alloydina giving at least 60% effectiveness , I appreciate the side affects can be bothersome but if you can get passed the first 6 weeks the side effects diminish and the rewards come through, I would rather feel like a partial zombie rather than have my feet on fire and pain wearing a shirt all day , which brings us back to stressors , all pain is a stressor and we don't want it in our life's.

The Dulox also helps with the body and serotonin with research implying that the body seems to produce less serotonin in people with FND , less stress.!!

And if you can try some Yoga to help relax the mind and gentle stretch the body again seems to work for me.

Hope this helps anything else drop a line

cheers

[Recovery2017 in reply to Moomba]

Hi Moomba, I am sorry to hear of your symptoms and suffering and thank you so much for sharing this with me. I had burning in my fingers at the start and it was very unpleasant and distressing and I went to A&E about it after it went on four many hours one day. I get allodyna in my feet and hands when they are warm so I know how unpleasant it is. I suffer with numbness, sore feet, a tight nose, buzzing in my head, pulsing in my ears and tingling, buzzing. I have just returned to work after taking two months off work with these symptoms. I couldn't do my job whilst the burning was going on. As I say, I get allodynia but I can do my job now. I was very interested to read that you have seen Jon Stone. I am aware of the website, thank you, and have recently had a couple of email exchanges with him because I would like to try and raise money for his research at Edinburgh. FND is severely underfunded and undersearched and suspect fibromyalgia is too. Do you still see Jon Stone for follow ups?

I plan to start on a gluten free diet on Monday after what you say. I am also giving Epsom Bath salts in the bath a go because they can help with pain and nerve function. I'm giving that a go for a month or so. You might be interested in giving that a go too. I work with someone who suffers with a lot of pain and she swears by it. Thank you too for the medication info. I have been put on Sertraline (apparently it increases your chances of getting better but I have yet to benefit from it.) I also take amytriptaline to help me sleep because the symptoms keep me awake otherwise. It would be good to hear from you again and hear how you are getting on. I know what you mean by pushing yourself and I have found that I am much stronger for being back at work. I would love to go jogging again but my feet would go numb but maybe as you say, you have to do these things. I could make it a very short jog and see what happens.

I wish you all the best and as I say it would be good to hear again. Olivia

[Gypsi in reply to Moomba]

Dear Moomba, just a quick question. How did you manage to get a private appointment with Dr Stone? We approached him last summer, begged him to see our daughter who is British but currently an EU resident so not on NHS, but he said he did not see private patients full stop.

Best wishes, hope you're doing well,

Gypsi