Diagnoses

Posted by jasonbrooksf @jasonbrooksf, Oct 24 7:42pm

Just recently learned that I have a pain syndrome that involves fibromyalgia. I was told this a couple of weeks ago. Learning about it this week it makes sense why I’ve struggled for so long. Before being told about my condition I thought I could be fixed with medication and I could go on with my life. But now I realize it’s life long. I’m just sad and no one to talk about it. I don’t have any friends. Things I planned to do I feel like why even try now cause I know I’m going to be in pain. Just wanting suggestions on how to cope with this. Thanks for reading.

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I am sorry that you're going through so much. I am known as guinea pig lover for a reason. Pets are a wonderful diversion. I have lost friendships through not keeping in contact, Iooking back it all seemed to much at the time. I think we all live at slower paces than everyone without the condition and at times it is hard. I was always outgoing before this crept up on me. I am now learning to enjoy doing things at my pace and saying no to things and if people don't understand is it really worth having them in your life?. Living alone has it's plus sides, try and focus on positives!. I lived on my own for 10 years before getting married and although social at the time I was glad to have my own space. It will be exciting getting a puppy when it happens, and although one door has closed ( losing job) another door will be opened. Plus you never know what will happen in the future. My church friends have always been there for me and yes here we go again, I believe in the power of prayer.Treatments are changing all the time / research is on going.
Trust me if you ever meet a partner that doesn't accommodate your needs they aren't worth being with but don't lose hope, anything can happen when you least expect it..... We all have very bad days but we can also have very good days.You sound like a wonderful caring person who would make a wonderful partner to the right person .
Best wishes and squeaks from my little furry guinea pigs.x

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Profile picture for cyndigarrison @cyndigarrison

@jasonbrooksf oksf I am right there with you. I'm very gregarious and could be called a "love sponge". The most painful(no pun intended) thing for me in addition to the loss of career has been the loss of quality fellowship with friends and family. And the lack of a love life. I often think that there should be an online dating service for those of us who are challenged by disabilities. Chronic illness is a deal breaker in 100% of my relationships. They want a vibrant energetic athletic partner. So, these things take time, and I know everything I say is more or less a cliché, but true. This is a long journey and every day will be different. But I've found that time helps me deal with it. Experience helps. Like when you're flaring and don't know when you'll be able to get out of bed and cook or grocery shop for yourself, etc., it can just seem hopeless. Like it will never end. Even so bad that you might want to die to just end the misery. But as time has progressed for me, I do know that these times do end, and there are infrequent days of less pain, more energy, more of a "normal" life. For me my faith has helped tremendously. Just knowing that I'm in God's hands and He always takes care of me and continuously gives me blessings gives me a better attitude towards those daily seemingly insurmountable troubles. I just joined this forum and Im glad I have. We feel sorry for ourselves but then see that there are people out there that are just like us, and even much worse. And they persevere. And so can we! Know that you are loved. God bless you.

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@cyndigarrison Hi Cyndi, in the beginning before I found out what was wrong with me, I was told I had RA and neuropathy. I had a few women friends, but it was nothing more than chit chatting. Once I told them I had RA and neuropathy I was blocked. The have also been a few people that have left me with a last message of saying they will pray for me. But I realize this is something I will have if I try to date. I did try an app for people with illnesses but unfortunately there is no one on those things. So, I just making peace with not dating. It's depressing but it could be worse.

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Profile picture for jasonbrooksf @jasonbrooksf

@smc55Hi thanks for sharing some of your story with me. I too am coming to a realization and making peace with being alone. I never really dated because of the pain and fatigue that I've experienced. I know why now. I'm absolutely considering getting a dog. My dad has a dog that he is trying to find a new home for. I wish I could have his dog but he is too much for me to have in my home by it being small. I did look a month or so ago at adoption places in my area and I almost got one. I'm waiting until I get another job. I don't have an income coming in and been living off of my savings. I lost my job due to my condition. I have some hope today being that I had a Drs appointment this morning and another this afternoon for treatment. But yes, I have absolutely contemplated getting a puppy.

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@jasonbrooksf I’m alone as my partner of many years passed away in April, 2021 followed by our 14.75 yr young pup, 6 months later.
All of my family have passed with the exception of my brother. He lives about 100 miles from me, however we are estranged. He & his wife are very social & enjoy their lives. I am who I am, & finally, I make no apologies about myself. I’m relatively introverted & now have quite a bit of social anxiety because people can see no appearance of the problems with 2 autoimmune diseases…with the exception of some weight loss & gain. I have severe fatigue as well. I no longer feel like sharing with others the extent to which the autoimmune diseases impact me, so it’s just easier to withdraw & live my life in peace. I know that I’m much older than you at this point, & I really have no interest in putting myself out there, again. I was diagnosed at 58, but I now know that I had all these symptoms for probably 25-30 years prior.

How large is your Dad’s pup?
I totally understand about losing your job as I had to take disability four months prior to being able to just retire. It feels like if it’s not one thing, it always another. However, I have total faith in God, knowing He will never leave or forsake me. I do my best not to be fearful because deep down I know, He will see to my every need. That’s one reason I’ve chosen the Lord & the unconditional love and forgiveness He promises, as well as the pup & her unconditional love that God has placed her in my life. I totally believe that’s why dog spelled backward is God. I believe that they have a connection that many just don’t understand.
You can call me a nut case, but I believe what I’ve written with all my heart.🩷
I do my best to take one day, one step at a time & do my best. A couple of my acquaintances understand that I never know from day to day how I’m going to feel…& the way I feel during one day can turn around very quickly. How can a person explain to someone else what they don’t completely understand themselves. I do my best to stay positive & calm…..& as my Mom used to say, “This too shall pass!”
Hang in there, friend & continue considering a pup… not necessarily a puppy but an adult or senior. Prayers & best wishes to you!🙏💙😊🌻

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Profile picture for smc55 @smc55

@jasonbrooksf I’m alone as my partner of many years passed away in April, 2021 followed by our 14.75 yr young pup, 6 months later.
All of my family have passed with the exception of my brother. He lives about 100 miles from me, however we are estranged. He & his wife are very social & enjoy their lives. I am who I am, & finally, I make no apologies about myself. I’m relatively introverted & now have quite a bit of social anxiety because people can see no appearance of the problems with 2 autoimmune diseases…with the exception of some weight loss & gain. I have severe fatigue as well. I no longer feel like sharing with others the extent to which the autoimmune diseases impact me, so it’s just easier to withdraw & live my life in peace. I know that I’m much older than you at this point, & I really have no interest in putting myself out there, again. I was diagnosed at 58, but I now know that I had all these symptoms for probably 25-30 years prior.

How large is your Dad’s pup?
I totally understand about losing your job as I had to take disability four months prior to being able to just retire. It feels like if it’s not one thing, it always another. However, I have total faith in God, knowing He will never leave or forsake me. I do my best not to be fearful because deep down I know, He will see to my every need. That’s one reason I’ve chosen the Lord & the unconditional love and forgiveness He promises, as well as the pup & her unconditional love that God has placed her in my life. I totally believe that’s why dog spelled backward is God. I believe that they have a connection that many just don’t understand.
You can call me a nut case, but I believe what I’ve written with all my heart.🩷
I do my best to take one day, one step at a time & do my best. A couple of my acquaintances understand that I never know from day to day how I’m going to feel…& the way I feel during one day can turn around very quickly. How can a person explain to someone else what they don’t completely understand themselves. I do my best to stay positive & calm…..& as my Mom used to say, “This too shall pass!”
Hang in there, friend & continue considering a pup… not necessarily a puppy but an adult or senior. Prayers & best wishes to you!🙏💙😊🌻

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@smc55 My Dads dog isn't too big but he is very active. He's probably 1.5 years old now and still is coming out of the puppy stage. I'm just worried he will run into stuff and accidentally break everything in my place. And he needs to be walked constantly. I dont want him to have zoomies in my place. I do appreciate you sharing your experience. Did you live overseas? The reason I ask is because I see that I get your replies along with others when I'm sleep. I live in the U.S.

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Profile picture for jasonbrooksf @jasonbrooksf

@cyndigarrison Hi Cyndi, in the beginning before I found out what was wrong with me, I was told I had RA and neuropathy. I had a few women friends, but it was nothing more than chit chatting. Once I told them I had RA and neuropathy I was blocked. The have also been a few people that have left me with a last message of saying they will pray for me. But I realize this is something I will have if I try to date. I did try an app for people with illnesses but unfortunately there is no one on those things. So, I just making peace with not dating. It's depressing but it could be worse.

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@jasonbrooksfIm very sorry to hear that. Don't give up though! And if you haven't had these problems for long, like I said, time will give you more perspective. And, I didn't know there was a site for people with disabilities! I think that's cool. I think that there's more of us out there than we realize. And so what if there's limitations? We still have other good qualities!

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Dear all,
It's lovely to be reminded we all have other good qualities!. It's also good we have places like this where we can share our experiences.
I say make the best of every day and on bad days let's be kind to ourselves.
Best wishes Guinea pig lover.x

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One Day at a time sometimes one minute. Be kind to your body. Incorporate a routine of chair yoga and a gluten free diet helps some.

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I was on a gluten free diet for 3 years as before getting diagnosed with fibromyalgia last month. I had villi blunting that could have been celiac but my bloods didn't test positive. Looking back gluten free did help my symptoms for a while but they were still there but not so intense. I am doing chair yoga when I remember, I try daily. I haven't noticed much of a difference but it's early days.

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Profile picture for guineapiglover @guineapiglover

I am sorry that you're going through so much. I am known as guinea pig lover for a reason. Pets are a wonderful diversion. I have lost friendships through not keeping in contact, Iooking back it all seemed to much at the time. I think we all live at slower paces than everyone without the condition and at times it is hard. I was always outgoing before this crept up on me. I am now learning to enjoy doing things at my pace and saying no to things and if people don't understand is it really worth having them in your life?. Living alone has it's plus sides, try and focus on positives!. I lived on my own for 10 years before getting married and although social at the time I was glad to have my own space. It will be exciting getting a puppy when it happens, and although one door has closed ( losing job) another door will be opened. Plus you never know what will happen in the future. My church friends have always been there for me and yes here we go again, I believe in the power of prayer.Treatments are changing all the time / research is on going.
Trust me if you ever meet a partner that doesn't accommodate your needs they aren't worth being with but don't lose hope, anything can happen when you least expect it..... We all have very bad days but we can also have very good days.You sound like a wonderful caring person who would make a wonderful partner to the right person .
Best wishes and squeaks from my little furry guinea pigs.x

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@guineapiglover thank you for the kinds words. I really appreciate it.

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We all need to help each other,
A few kind words and taking a tiny bit of time out of your day doesn't cost anything. It's horrible living with fibromyalgia and all its symptoms but we can live our lives to the best of our abilities even if it's a smaller enclosed world it doesn't make us any less of a person. On bad days just know there will be good days....

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