Neurofibromatosis Type 1

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Neurofibromatosis Type 1
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    Community Voices

    Friends and Chronic Illness

    I'm just gonna say it. Maintaining friendships with a chronic illness is tough. It's even harder to make new friendships and meet people many times. There's a lot that goes into this: pain, anxiety, depression, and especially fatigue. Take your pick of symptoms. Having a chronic illness is exhausting. It helps to have people send a message checking in. Or just to talk about something random or that you, the person with chronic illness, is interested in. What's even harder sometimes is not knowing anyone else with your disease. I don't know anyone with Neurofibromatosis type 1. Or with chronic pain. I have family for support and I am very grateful for them. I always will be. Sometimes the support a friend can give is different and really helps. Anyways, just wanted to share some thoughts. Hope everyone is having a good day!

    #NFType1 #NF #NeurofibromatosisType1 #Neurofibromatosis #NFWarrior #ChronicPain #ChronicIllness

    14 people are talking about this
    Community Voices

    Suggestions to help pain?

    Today is a rough pain day. These have been becoming more frequent but today is an especially tough day. Even with medication everything hurts today... head, abdomen, back, my arms and legs, etc. So I am asking for help/suggestions.

    What helps your pain? Be it medication, rest, hot/cold packs, herbal remedies, exercise etc.
    Have a great Sunday!

    #NF #Neurofibromatosis #NeurofibromatosisType1 #ChronicPain #ChronicIllness #Remedies #treatments

    25 people are talking about this
    Community Voices

    Tough time

    It's been a few weeks since I posted. I've been to the doctor's and need to see additional ones and have imaging on my tumors. Having a few new symptoms and more pain. It's frustrating and hard. I can't work right now but I was also told that I'd need a great lawyer to get on disability even though I have a genetic disorder causing bad chronic pain. I want to work and be productive but am having a really hard time with even getting going most days. I'm trying to stay positive but traumatic things from my past have reared their ugly head. And im struggling to sleep well. Also found out my dad has sarcoma. If anyone has advice on disability, pain relief, healing practices, or sleep practices please share. I'd truly appreciate it. Or even tell me something good. I'd honestly really just like to even talk about random stuff, too. Have good day everyone

    #NeurofibromatosisType1 #NFType1 #Neurofibromatosis #NF #NF1 #Depression #Anxiety #ChronicIllness #ChronicPain #Tumors #braintumors

    3 people are talking about this
    Community Voices


    Life transitions are difficult. They are even more challenging when faced with chronic illness, both physical and mental. I have gone through many transitions in the last couple years. I know it took a toll. And I am recovering. I am regaining my life,albeit slowly. It is not easy as I had an ableist mindset concerning myself only. I pushed too hard for too long. Now I am learning what's right for me in many areas of my life. It is worth the work but it is also very draining work. This is just a snippet of my experience. I fight chronic pain, depression, and anxiety daily. There is a lot to me. There's a lot to each and everyone of us. I thank you for this space. What are experiences on these themes/topics?

    #ChronicIllness #ChronicPain #Depression #Anxiety #MentalHealth #NeurofibromatosisType1 #NF #Neurofibromatosis

    Community Voices

    A tough day, a rest day

    Today is a tough day. Pain levels are high. Anxiety and depression are basically a roller coaster ride today. I've been struggling with my health lately and also got some bad news about my dad's health. Just a lot to process. Watching some movies today with a heatling pad (meds too) and just taking time to myself. What does everyone like to do on tough days?

    #ChronicIllness #ChronicPain #NeurofibromatosisType1 #NFType1 #Neurofibromatosis #Depression #Anxiety

    3 people are talking about this
    Community Voices

    Health and a romantic relationship

    Does anyone worry about finding an understanding and accepting life partner? If so, what's your primary concern? I worry about it sometimes. I'm (mostly, lol) confident in what I want and my values but worry someone won't be able to endure years of my chronic illness and mental health struggles (currently seeing a therapist which has been an incredible experience). Grateful for this space to connect. Have a great day everyone!
    #ChronicIllness #ChronicPain #MentalHealth #NF1 #NeurofibromatosisType1 #Neurofibromatosis

    4 people are talking about this
    Community Voices
    Community Voices

    NF awareness day thoughts

    Today is World NF Awareness Day. It's for Neurofibromatosis. I have type 1 and I am reflecting on it today. In some ways it's tough because I am just opening up about it and I don't like thinking I have a disease. I'm working on accepting that term even though I've had NF 1 my whole life. I've had chronic pain from it since August 2013. I hurt everyday. Some days the pain is less others it's off the charts. Today being the awareness day for NF 1, I am in the feels. A mix of many emotions. I'm okay though. I've enjoyed this space so far, thank you all. Have a great day!

    #NF1 #NeurofibromatosisType1 #Neurofibromatosis #ChronicPain

    7 people are talking about this
    Community Voices
    Community Voices

    New to The Mighty

    Hey Everyone! I'm new to the mighty and hoping to find a good community here. I live with NF1 and chronic pain, amongst other conditions. My pain has been getting worse along with some new bumps. Let me know if you have any tips for the pain or can relate. Have a great day!

    #NeurofibromatosisType1 #ChronicPain #Neurofibromatosis

    6 people are talking about this