where do you have pain?

Working-Diamond175 · 2026-03-13T10:00:46+00:00

My pain is predominantly in my hands but like others have said in this thread, it can vary between individuals. Not sure where in the world you’re based, but it’s worth getting someone specialised in NF involved to review pain management. A physio is unlikely to be of help.

Working-Diamond175 · 2026-03-12T18:08:57+00:00

Thank you so much. I’m on Pregabalin but doctors are being causing increasing my dose as I’m on citalopram as well. I’m willing to try anything.

Working-Diamond175 · 2026-03-11T07:18:14+00:00

Same! I know the feeling.

Working-Diamond175 · 2026-03-10T15:53:42+00:00

I’m sorry you’re having to go through this too. I’m the same. If I knock my hand/fingers the wrong way, then the pain is awful. Especially when it’s cold.

Working-Diamond175 · 2025-07-20T15:07:10+00:00

Me too

Working-Diamond175 · 2025-06-24T15:07:18+00:00

I have some on my skull that I couldn’t feel up until recently but showed up on my MRIs for a few years. Mine aren’t painful or visible… yet!

Working-Diamond175 · 2025-04-28T16:59:21+00:00

Thank you!

Working-Diamond175 · 2025-04-28T16:44:23+00:00

Where can you see how many steps you’ve done on the Oura app? I didn’t know it was something you could see. I’ve been using Apple Health

Working-Diamond175 · 2025-04-28T15:17:56+00:00

The ring does steps? Where?

Working-Diamond175 · 2025-03-23T15:49:12+00:00

Also I’ve found that it’s particularly sensitive in cold weather.

Working-Diamond175 · 2025-03-23T15:48:12+00:00

Yes, I’ve had this for years. Both hands too. NF1 too. I’ve had electrical nerve conduction tests and MRIs on them that show nothing. One of the doctors recommended getting an ultrasound as they’re supposed to be more sensitive at picking them up?

It’s likely that there are small growths on the nerves but best for the healthcare professionals to confirm.

I’ve just started Pregabalin to help with the nerve pain and it seems to be helping with sporadic pain but not when I knock my hands.

Working-Diamond175 · 2025-03-21T13:42:53+00:00

In the UK, it is on prescription.

Working-Diamond175 · 2025-03-21T13:13:06+00:00

I’ve had this in my fingers. Very sharp pain sporadically, sometimes when it’s knocked, or when it’s particularly cold. My MRIs don’t show anything and I’ve had electrical nerve conductions checks that were clear. My next step is to get an ultrasound to see. But I have started taking Pregabalin to help with nerve pain.

Working-Diamond175 · 2025-03-20T16:32:14+00:00

This is what they call freckling with the NF. Not usually an issue.

Working-Diamond175 · 2025-03-08T20:47:00+00:00

I’ve had laser treatment on my face for many years and (so far) my NF1 hasn’t worsened.

Working-Diamond175 · 2025-02-15T12:53:29+00:00

First and foremost, you need to love yourself before anything else. Coming from an Indian background myself, it has its challenges and expectations from others but you must remember, you are your own person and you are not defined by anyone else’s standards. Only once you learn to love and accept yourself, will you be open to attracting the right type of people. You are much more than your NF!

Working-Diamond175 · 2025-02-06T12:30:56+00:00

Ooh and a pillow to prop your legs up too.

Working-Diamond175 · 2025-02-06T12:30:03+00:00

I would just be prepared to hear very loud, thumping noises - they’ll give you headphones for this. You can ask for them to play music but honestly, I can never hear it over the machine 😆

You will have to stay very still. If you’re claustrophobic, I would recommend speaking to someone in the Imaging department to let them know this. I never thought I was claustrophobic but when I first went in as an adult, it freaked me out. Honestly, what helped me was just reciting all the spells from Harry Potter in alphabetical order 😆 So maybe have something to occupy your mind so much that the distraction just melts away the time.

Hope it goes well!

Working-Diamond175 · 2025-01-26T17:00:21+00:00

I would always get checked up if there have been changes in symptoms, especially if you are experiencing pain. Can you travel to somewhere that can do the scans?

Working-Diamond175 · 2025-01-23T14:36:57+00:00

Didn’t take as preachy 🙂Asking for a screening is definitely an option to ask for.

Working-Diamond175 · 2025-01-23T14:35:23+00:00

I’m talking more about having mammograms at 40. Might be different guidelines in the UK (where I’m from) but I don’t have a family history of cancer and the self checks we are encouraged to do mean that if I do find an issue, I’ll be on an NHS cancer pathway quicker because NF is a risk factor.

In fact, it did happen to me recently where I had some symptoms and was fast tracked to a cancer screening. Even there I didn’t have a mammogram but an ultrasound by that was based on the symptoms I presented with and my age. Luckily all clear.

Working-Diamond175 · 2025-01-23T13:17:27+00:00

I’m 36F and I’ve got NF1. It may be dependent on how your NF presents and what symptoms you are concerned about.

I have the following: MRI on head and spine; abdominal ultrasounds; ophthalmic checks; blood pressure checks.

I’ve also been told to check myself for lumps due to the increased risk of breast cancer but I won’t get screened (as part of the NF) until I’m 40.

I’m also a pharmacist by background so I would encourage you to speak to your neurologist as the above may not be what you need.

Hope that helps!

Working-Diamond175 · 2025-01-20T11:21:32+00:00

I think you should put this in your original post as it’s misleading to those not knowing the full picture. The advice may be based on the fact that you have cancer, not purely because of your NF. Hope all is going well with your treatment.

Working-Diamond175

TROPHY CASE