I've been in pain my whole life, went through sever abuse as a child, have mental health issues that people don't understand and feel very isolated and lonely. My only 2 friends are online, sometimes things get hard with no one to talk to. Dr tol me to do a pain diary so installed this to do that, don't have much hope in anything helping anymore, just want to get the proper medical aids I need and get on with life. I'm tired of all this.
Have too many diagnoses and most doctors won't deal with me because they say its too complicated. Just got myofascial pain added to the long list yet they don't know much about it either. It's frustrating.
Hi, I'm Jan. I'm sorry to hear you're having such a tough time. I know what you mean, I feel the same with Not having anyone to talk to or the people you do talk to, either don't get it or don't want to know, or both. I'm frustrated too and often think I've got no hope as My options to help me with my pain are just about up. Thought I'd message you to say you're not alone and people do care. I hope things improve for you and you start to feel a bit better. I also know how pointless saying that is, especially when we're going through so much. Tomorrow is a new day 😊
Hi. It sucks that you don't have people to talk to about your health and life. Just remember that you matter, no matter how many doctors won't deal with you. Are there any local support groups in your area? I don't have many diagnoses, and already my main doctor says my care is extremely complicated. It's probably much harder for you, but I hope you keep trying anyway. T
Infinite Star Hi I understand where you are coming from. I am so sorry that you are going thru all of this with your Drs, sometimes they can be total jerks. Don't give up just keep your faith strong and God will see you thru this time in your life. I know how it is to live on pain,and some days think I can't take it any more but you can you are a strong person and you may be an inspiration to someone that knows you and your story. We are all here for you,any time to talk to. You will find a lot of wonderful,caring people here. I like to think of this community as family. Will be praying for you.
InfiniteStar, you aren't alone and your life matters! I too have many diagnoses that overlap with pain. I've been told "You're a complicated case" by more doctors than I can count. They tend to shuffle me from one to another without trying to help, except a few. And like you I also only have 2 true friends, both who live long distance from me. But when I found this app I found new friends too. Not one single person on here is judgmental. Everyone gives opinions and suggestions that may not always be along each others line of thinking, but we respect each others individuality. Look for a local support group or a group counseling sessions. Try finding a hobby you enjoy. Try not to focus on your issues all the time but "get away" mentally by doing something you enjoy, find new enjoyments. And turn to this app for your support. Your mindset affectz your painlevels. Try to think of one positive thing going for youdaily. Praying for you! 🙏🌼
I feel lonely sometimes too. I used to have coverage for physical therapy. I don't think it really helped me all that much but I got a lot of joy out of going once or twice a week to see someone and just to talk with them for 15-30 minutes. When my insurance decided I had enough it was depressing. I still wish I had something to help me be more social. Talking online helps but its not perfect.
KDeer I understand about not having friends to talk to. I have family to talk to but that's not the same as a friend. Most of my friends still work everyday , I have one friend her and her husband are both disabled and in order to save on their electric bill they sleep during the day and are up at night so we rarely get to visit any more. So I relay on all of y'all my new family. I enjoy talking to each and everyone. I wish it was where we could Skype with each other.
Wheezie, how do your friends save money by being up all night? Are they in the arctic? I didn't know the sun came out at night some place!! So cool. Like the toilet water being opposite in the southern region.
Thank you for all your replies. I don't generally post on these types of forum things because, I'm usually misunderstood or given the same advice that doesn't work for me. There are no support groups where I am, or I'm unable to get to them. Sitting in my wheelchair for too long causes unbearable pain so I avoid it and mainly use it for appointments when necessary, as well as being social is too difficult because of my mental health issues, being Autistic and having dissociative identity disorder that it seems only those with it understand. I'm not interested in being anyone's inspiration either, not for just trying to live my life and surviving, thats not inspirational, thats normal coping with disabilities and being an inspiration just because I'm disabled goes into ableism and inspiration porn for me. I do have hobbies, very many hobbies that I do during the day to try and cope and keep busy, it doesn't change the loneliness or need or desire for a true friend, I can interact fine online, but things are different in real life, as well as most the time I end up losing friends because they can't understand how I am with my mental health problems or I have been bullied and have had to cut contact which loses quite a lot of so called friends at once. It isn't easy to have friends with what I go through, it's hard for anyone to understand me or how I am, and I say I in a generalised way because I am just part of a big multiple system and most think this isn't real or we are faking or we are seeking attention and a number of other things, but this is our life. I'm lucky to have a GP that will work with me to get what I need, but a GP only goes so far, I have been abused and treated badly by specialists and psychiatrists, counsellors etc so it is something that I won't do unless necessary. My last counsellor just suddenly stopped contact with no explanation as to why and leaving me stuck trying to sort my life out, so I cannot trust these people with how I have been treated. All I have is the internet, my hobbies, my partner and my dogs, my two online friends who understand being multiple but couldn't possibly begin to understand the disabilities and pain I go through daily or the way doctors really are. Sorry this is long, I just wanted to clarify some things and give that extra information that may or may not be understood.
And here is what I have: Multiple Sclerosis (MS) - [Progressive Relapsing] Gastroparesis and Digestive Tract Paralysis (GP/DTP) Autism Arthritis Scoliosis Degenerative Disk Disease Chronic Obstructive Pulmonary Disease (COPD) Vision Impairment Hearing Impairment Multiple Allergies Multiple Chemical Sensitivity (MCS) Depression Multiple Anxiety Disorders Epilepsy Primary Ciliary Dyskinesia (PCD) Gastroesophageal reflux disease (GERD) Dysphagia Renal Reflux Endometriosis Reflex Sympathetic Dystrophy/Complex regional pain syndrome (RSD/CRPS) Peripheral Neuropathy Postural orthostatic tachycardia syndrome (POTS) Ehlers-Danlos syndrome Type 3-Hypermobility Type Narcolepsy Dissociative Identity Disorder Post Traumatic Stress Disorder Graves Disease Chronic Myofascial Pain Syndrome
AnnalidaMitzen no we live in East Texas approx 120 miles north of houston.lnfintintyStar I would like to appolizise if me saying that you could be an inspiration to someone else was not ment to upset you in any way. I would never do or say anything intentionally too hurt some one. I hope you have a good and pain free day as possible. Ferret bandit how are yo feeling today?
InfiniteStar, you're right by referring to those on the outside (healthy) could never understand any of us on the inside, with our varying degrees of illnesses and disabilities. I've been married 34 years to a very healthy husband. And my health has been just the opposite. Though he, nor my friends, family or neighbors, can fully understand what my struggles are like day to day, they try.
I don't pretend to understand what many on here go through, like you or others, who have things different from me. Nor can anyone else understands what I go through. But we all have empathy for each other; we do understand to a degree. We know what its like to struggle mentally, physically and financially. We know what its like to feel lonely or alone, to feel broken & tired of being sick every single day. We know what its like to be judged and told "its all in your head", called " hypochondriac." We know what its like to be dismissed & discarded by caregivers. We know loneliness too. Personally, I try to stay positive though sometimes its very hard. Im very sorry for the difficulties each and every person on here has to go through.
But the one thing I can do for each one is pray. And my specific prayer for you is asking God to bring some true friends into your life who do understand, who you can be open with and close to, who will be there in spite of your illnesses and disabilities, & who will help take away the loneliness! I hope you have a blessed day! 🙏🌼
Infinite, I am so very sorry to hear of your lifetime of pain and abuse. Nobody should have to go through such trauma. We, here all suffer in different but very similar ways. We are a very tight bunch and never judge. We understand and we are always here to try to guide, assist and be there for anyone who comes here looking for help. There is one thing you can now be very much assured of, is that you are NOT alone. We are here together, all trying to struggle through the same nightmares of diseases and pain, etc. You are in my prayers and I hope that belonging to this group will help you along and make you feel better, if not physically, at least emotionally.
Hey, just wanted to drop a note saying I understand the goin through trauma and feeling lonely. You are not the only one with dissociative disorder. I have it, too. Also have somatization disorder, bpd, and ptsd.
Infinite, I am not going to tell you ib know about all of the things you are dxed with, most of those I don't even know the definition of. I did however want to address your DX of DID. I was diagnosed as dissociative identity disorder years ago. I also have PTSD. .I know the stigma and disbelief that comes with DID. I am no longer multiple, though. Not everyone chooses to integrate, mine chose to due to life reasons that would be too much to go into. It's one of the most difficult illnesses to have to explain and you either feel like you are being called a liar or like a bug under a microscope. I am not the person who was born, nor am I any of the alters, I am a conglomerate lol. I was given the name Phoenix before I was made as a statement that I have been reborn, but then was hit with all of the pain and health issues a few years later. If you would like a friend who might understand at least some of your things and need a private ear, please feel free to email me at email@example.com or text me at 540-509-1975.