Find out how to let us know if you're concerned about another member's safety.
HNNP

lee1971
Member Posts: 5 Listener
I suffer with hnnp. Just recently had genetic test which was positive. Just wondering does it get worse as I get older?
Im in a lot of pain when u get an attack.
Im in a lot of pain when u get an attack.
Comments
-
Hello @lee1971! Welcome to the community.
I know there are some other people on the community with experience of HNPP who may be able to help you - @firegem71 and @amandawisehall are you able to offer Lee any words of advice or support? -
Thankyou. Much appreciated
-
Hi Lee, can I ask how old you are? How long did your first episode last for? Amanda
-
Hi Amanda, im 46. My first episode lasted 3 weeks or so. At the moment im in no pain. Then it can come anytime with no warning. Lee
-
Hi Lee, thank you for replying...you will find that as you get older you will have more episodes, even if they only last a few moments.
Did your doctor talk to you about sitting positions etc? I find gentle swimming helps relieve some muscle pain. -
Hi @lee1971
Welcome to our online community/website.
I do hope that we can help & support you.
I have found you some info on our site that might be ok for you ??????
https://community.scope.org.uk/discussion/35857/new-to-this-forum-hnpp
Please Please let me know if I can help you further ???
Brightness
Categories
- 53K All Categories
- 10.4K Start here and say hello!
- 4.8K Coffee lounge
- 4K Disability rights and campaigning
- 1.5K Research and opportunities to get involved in
- 149 Community updates
- 12K Talk about your situation
- 1.7K Children, parents, and families
- 756 Work and employment
- 575 Education
- 1.1K Housing, transport, and independent living
- 1K Aids, adaptations, and equipment
- 277 Dating, sex, and relationships
- 264 Exercise and accessible facilities
- 21.2K Talk about money
- 2.1K Benefits and financial support
- 4.4K Employment and Support Allowance (ESA)
- 12.3K PIP, DLA, and AA
- 2.4K Universal Credit (UC)
- 4K Talk about your impairment
- 1.3K Cerebral palsy
- 674 Chronic pain and pain management
- 700 Rare, invisible, and undiagnosed conditions
- 751 Autism and neurodiversity
- 928 Mental health and wellbeing
- 298 Sensory impairments
Complete our feedback form and tell us how we can make the community better.