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Family, partner, and friends do not understand - feel alone

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fibrome

10/13/2019 at 5:15 AM

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fibrome

Last activity on 02/23/2024 at 12:23 PM

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22 comments posted | 7 in the Chronic pain Forum

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I have fibromyalgia, which causes me to experience pain, which on somedays can be all over my body. I also will get migraines and suffer from intense fatigue.

The friends I used to have do not take much interest in me anymore. Probably because I cancel a lot or just am too tired to do anything after the day is coming to an end. Somedays, I feel like I want to do something, but then end up never doing anything.

My family and some friends say "just deal with it" or "it could be worse." I have also heard "it can't be that bad" or that I am over exaggerating. I have had a difficult time dating also due to this... seems to affect everything.

Thank you for listening and looking forward to hearing from others.

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April79

04/08/2020 at 11:01 PM

April79

Last activity on 05/05/2020 at 5:21 PM

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5 comments posted | 2 in the Chronic pain Forum

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@Meerkat8317 thank you for that. 💚

Family, partner, and friends do not understand - feel alone https://www.carenity.us/forum/chronic-pain/living-with-chronic-pain/family-partner-and-friends-do-not-understand-feel-alone-1280 2020-04-08 23:01:12

Meerkat8317

04/08/2020 at 11:48 PM

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Meerkat8317

Last activity on 04/12/2020 at 1:27 AM

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@April79 You’re welcome. I didn’t have anyone to tell me that it would be ok back then and it was hard as hell, so if I get a chance to give another woman a little boost when she needs it, I am more than happy to be there for her. 😉

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Meerkat8317

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04/14/2020 at 9:13 PM

I can totally relate. Dr. thinks it's either Multiple Scerlosis or Fibromyalgia. Haven't received an official diagnosis yet because of the pandemic. I still have more tests to go. Either way, it's like I can tell someone I'm bedridden in pain and they'll say something like, "why don't you go for a walk?" I was also told I have idiopathic intracranial hypertension (IIH) and when I told my friend, she goes "how's your dog doing?" I think people can't even comprehend the type of pain we feel or the level of fatigue we experience. They're so used to ignoring everything they act like we're supposed to ignore it too.....it feels very lonely. It really does affect everything and it's so frustrating.

toomuchpain

04/23/2020 at 6:21 PM

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toomuchpain

Last activity on 10/18/2022 at 6:00 PM

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35 comments posted | 7 in the Chronic pain Forum

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@MaiTai49 I totally get this. I'm flat on my back on the couch because I'm in too much pain or I'm having spasms and a friend will tell me to "stretch my legs" or "get out of the house, it'll do you some good". Total incomprehension. Sometimes I can just only laugh because there are no other words I can use to try to get them to understand. Just because my illness doesn't have me losing my hair or injecting a medication or breaking out in purple spots or what have you doesn't mean it doesn't exist!

nomorenomore

05/29/2020 at 4:46 PM

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nomorenomore

Last activity on 02/27/2023 at 11:16 AM

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Hi there,

I think everyone who has a disease can relate. The pain, the fatigue, the fear, the doubt, the non-wanted opinion... Sometimes, everything is just hard to deal with. And no matter how much your family and friends love and support you, there's like an invisible limit they can't reach. At a certain point, you're always alone with yourself. But when you're sick, the loneliness can feel overwhelming...

JCmomo

09/04/2020 at 3:02 AM

JCmomo

Last activity on 09/04/2020 at 2:47 AM

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I’m so tired of hearing my family tell me “I have so much to be thankful for!” No one understands that I am aware of everything I have but depression consumes me!

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Edythe

09/08/2020 at 1:19 AM

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Edythe

Last activity on 01/02/2023 at 5:26 PM

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I can relate to all of this. It's a long, lonely journey. If any one of you is dealing with a lot of anxiety (which most of us are and, as we know, adds to the stress of what we're already going through) there is a really good book out and reading it is like having a friend who is with you, holding your hand and telling you that she knows exactly what you're going through. She's a lifesaver. We all need that. The writer - Sarah Wilson - deals with so much physical pain and difficulties along with the anxiety and her words are so helpful. The book is called First We Make the Beast Beautiful. A wonderful book.

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Bemitch53

06/23/2021 at 7:19 AM

Bemitch53

Last activity on 11/18/2024 at 4:51 AM

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Hi, I'm Beverly. Most days it seems as if my close family more or less understands my pain. They've been living with it for long enough! But, it drives me nuts and really depresses me when I'm met with "Well, if you'd just get out and exercise more..." or " Let's go to the mall!" I would do ANYTHING to be able to get out there and exercise more or go to the mall! I can't walk more than 20 ft without my back and left leg giving out and this God-awful clenching pain in my thigh! I need my seated walker to go most places, as it is!

Bemitch53

06/23/2021 at 7:20 AM

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It kind of a "If ya can't see it, it's not there..."

Cdionne1089

07/02/2021 at 5:16 PM

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Cdionne1089

Last activity on 01/14/2022 at 2:54 PM

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18 comments posted | 1 in the Chronic pain Forum

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I can also relate because I suffer from fibromyalgia, multiple spinal injuries, osteoarthritis that mostly affects my spine, and many other conditions causing chronic pain. The pain is constant and 24/7. It's hard enough managing the mental and physical struggles from my conditions, and the lack of support makes things even more difficult. I truly hope you all find comfort and peace even on your worst days🫂🙌💞

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Crystal Rose

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dan.varady

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10/17/2023 at 2:30 PM

@Somya.P My neurologist gave me a script through the state dispensary for aid with sleep. It helps with sleep. The script is for low dose THC, so it aids with minor pain. I have learned through my trials of product that CBD gummies help with sleep, but not pain. In my state, CBD gummies can be bought at local corner stores.

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Armor2

05/13/2023 at 5:38 PM

@HelloKitty I started taking kratom when I was diagnosed with cervical dystonia, it means I have constant pulling of my neck and shoulder muscles. Botox is the primary treatment , 6 to 8 shots targeting muscles but its hit and miss. I told a friend about this and he told me about kratom, so I went to a kratom shop and talked to the owner. He learned I was an Army Veteran and sold me some capsules. Unbelievable the kratom knocked out the pain and relieved some of the spasms and pulling that was 5 years ago, and I am still taking it for chronic pain. I have found the vendors to trust and a fbook website to share experiences with others. Like all things kratom must be handled with common sense, and reading info on the web helps educate us all. IT IS THE ONLY THING THAT HELPS WITH MY CHRONIC PAIN

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MountainMan

Edited on 03/25/2021 at 8:23 PM

Yes I agree. Im on morphine and Hydrocodone/Acetaminophen and yours as well. I have some others also. If I want to work in the back yard, I am sleep mode if I set down. The next morning and at night is paying with great pain. Its a hard road in many ways. We have to keep going best as we can. Have a smile and good day to you. I have the stimulator too.

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dan.varady

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10/17/2023 at 2:30 PM

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Armor2

05/13/2023 at 5:38 PM

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MountainMan

Edited on 03/25/2021 at 8:23 PM

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