Hi, I'm Terri/Seeking Advice

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This topic contains 4 replies, has 4 voices, and was last updated by  TPC_YaYa 20 hours, 7 minutes ago.

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  • #244474


    Hi, I’m new to the group. I have foot pain – RSD and tarsel tunnel syndrome. It is very hard for me to get out and I find that being alone so much is messing with my mental health. Can anyone else relate?

  • #247658


    Hi Terri, I haven’t spent much time on this forum, but I was checking my emails and it popped up. I’m on my cell and don’t have my glasses on, so I apologize in advance if there are typo’s, etc… Yes, being alone too much messes with my mind! I NEED human interaction! My motto is “NEvEr Give Up!” (YoI do have to pick my battles carefully, though.) A physically healthy person will have the same issues without personal connections. This is part of the reason a pet or support animal is also important.

    I saw that no one had replied yet and wanted to encourage you in your quest of seeking “out of the box” friendships and let you you know are not alone!! I’ve been where you are and the online pain communities saved my sanity!! I have several diagnosis that cause chronic pain. Renaud’s, Interstitial Cystitis with Hunners ulcers, widespread inflammation and muscle spasms, inflammatory bowel with spasms, arthritis, debilitating headaches, there’s more, but you get the idea. I’ve been sick my whole life and housebound and bed bound for long lengths of time.

    I have never stopped searching for relief, both emotionally and physically. I’ve even gone as far as studying natural medicine myself in the hope that if I can eliminate just a fraction of my pain. I play the percentages game. If I find 8-10 different things that bring me any fraction of relief at all, well, that’s something!! I’m quite behind in my studies, because of my disabilities, but the school has graciously worked with me and I can take the time I need.

    I needed to find something to try to focus on. It’s better than doing nothing while I’m housebound several days, weeks, months at a time! I sometimes get a few days of semi-reprieve each week in the summer, but I have to force myself to keep moving. I’m never out of pain, ever. It’s comforting to know that someone is out there online. For me, messaging, even my small cell screen, is better than looking at the same old walls every second of every day! Each year it gets harder, but I’m not giving up.

    I have also found that if I can do some kind of right brain activity, it helps distract me so I’m not watching the clock wishing the day was over. Painting projects and sewing have become projects that are too big for me now. If I keep it small, such as the adult coloring or gluing something together, going online, facebook, forums, Pinterest, etc..it becomes a little reprieve. I also try to get 15-20 minutes of fresh air 3 times a day. Sometimes more, sometimes I can’t get any and it’s a chore to go from the bedroom to the bathroom. I don’t mentally beat myself up as much as I did. People in the forums are very encouraging and if you meet someone whom you really get on well with, there’s always video chatting if that would seem more personal. Some days it’s all I can do to manage what I orally take for my illnesses and everything else gets put on hold.

    The pain community is a great way to connect with people who understand! I’m a problem solver and constantly seeking solutions. My illnesses have consumed me most of my life. I feel the forums have helped me keep my illnesses in perspective at times. I have a disability. It’s up to me as to whether the disability has me or not. I am not my disability. I do have to make allowances for what I physically and mentally can not do. It is a constant struggle, but I don’t have to do it alone and neither do you! I have found a lot of support over the years in the online pain community!

  • #251858


    Hi Terri,

    We do understand the impact that chronic pain has on our mental health. Chronic pain isn’t just the pain — it is also how the pain impacts our whole lives and how it limits us from interacting with family & friends and the world in general.

    We found this to be such a huge problem and concern for people living with pain that we started offering support calls every Tuesday. We hope the calls will help to fill a void in a persons life who lives with pain.
    So many of us find ourselves confined to our homes only leaving to go to health care appointments or to purchase groceries. The support calls allow people to interact with others who understand the journey of pain. The calls are about having a connection to others — to be able to hear other people’s voices and the emotions in those voices.

    We wanted people to have a safe and non-judgmental place to get and give support from the comfort of their own homes. The calls are open discussions so everyone on the calls can be a part of the conversation. We also want people to feel comfortable so if at first they would prefer to call in and just listen to the calls that is absolutely okay with us.

    We strive to make the calls feel like old friends getting together to talk. There is never a time that anyone has to worry about feeling pressured to share or to share more than they are comfortable sharing.

    The hostess on the calls also lives with pain and enjoys talking to others and making new friends. She will also do one on one calls with anyone who would like to talk about the calls before joining one of them. All you have to do if you would like a one on one call is to email, outreach@paincommunity.org and let her know that you would like a one on one call.

    Here is the link so you can read more about the calls and see the schedule for the calls. Our next call will be on Tuesday, May 22nd at 7:00pm ET, 6:00pm CT, 5:00pm MT and 4:00pm PT.

    TPC Outreach Support Conference Calls

    Take care,

    TPC YaYa
    TPC Community Moderator

    “The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

  • #254083


    Chronic pain can be very isolating and I think the above outreach program is wonderful.
    I went looking for a community page on Facebook as my mobility is limited and I posted on there a bit about myself and said if anyone can relate then message me and maybe we can get together for a cuppa. Obviously I was mindful of what info I gave out but A lovely young lady my age messaged me and we had a lot in common and I have visited hers and vice versa. It’s good as they understand if you need to go after a short visit. This new friendship has really helped with my loneliness and depression. Hope that suggestion is something you can try 🙂

  • #256538


    Hi Kristy,

    Thank you for sharing this with us, we are so pleased to read this. We are committed to doing all we can to help people with pain find ways to interact with others because we are also live with pain and we understand how isolating the pain can be.

    Take care,

    TPC Yaya
    TPC Community Moderator

    “The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

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