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New, undiagnosed, my story

Oct 15, 2016 4:26 AM

Hi, my name is yvonne and I'm 22 years old.
I'm not sure where to start but I'm very happy I found this app because for so long I've felt alone and ashamed and question if I'm faking my pain and ailments or not.
When I was young I would get very sick alot. The doctors never really believed me though because I am autistic, although we didn't know that at the time, and I had alot of sensory issues with the doctors so they just asumed I was faking it all. Another reason they never believed me was because my dad died when I was four so they asumed my single mom was babying me and I just was acting out for attention.
Later on I started getting sick more often and having pains when I was a pre teen. I had terrible migraines and my legs hurt often. As a teenage I just was in pain alot. My right ankle and legs hurt. I couldn't stand for too long or walk too long without hurting later. I got married at 18 to my high school sweetheart and the first month of our marriage I got very sick for 3 months. I live in a small back room with my husband seperate from the main house that my mom lives in. We have everything in here like a fridge and tv and microwave, except a bathroom and running water (other than the drinking water from the fridge ). SO for those 3 months I moved back into the main house with my mom and slept alot and her and my husband took care of me. I don't remember much because I kinda drowned myself in niquil just to escape the fever and everything. But presently I get partially sick alot. It almost feels like I'm ABOUT to get sick. I can feel a fever under my skin but my temp is just below a actual fever so it's still technically normal. My legs feel what I call sicky sore. Not sore after you've ran or worked out but that sore you get when your sick. My lymph nodes on my neck swell and I just feel terrible. Sometimes u even feel like I'm ABOUT to get a sore throat but don't have one. This has been my life for years now. Lucky recently I think I've finally met a doctor who might actually diagnose me with something. So far I know why I feel a few of my pains. My ankle is perminently damaged because as a kid another kid tripped me and I twisted my ankle and it never was put in a cast so it never fully healed. My migraines are caused by my irlen syndrome. I get a bad rash on my arms because im allergic to the sun. And my cold nose knees and fingers and toes are Raynaud Syndrome. My polycistic ovaries make my hurt below my belly button sometimes. But that's about it. I still don't know what the sharp pains on my spine are and why my knees get cold and hurt but I don't have arthritis. Or why I get sick alot and seem to have a weak immune system but my tests come out fine and I look healthy (I have nice color skin and alot of hair and apparently those would be signs I had a bad immune system ). And why I stand and walk weird. I stand with my knees popped back and my husband has told me I almost stand like someone with cerebral palsy. But I know I don't have that. I have just went through some tests and have a dr appointment next Friday so maybe I'm getting closer to answers. So this is me. And I hope to meet other people and maybe get answers soon and just feel valid by being around others who go through the same thing. And maybe get an idea what's wrong by talking and reading about others and I can talk to my doctor about it. Also because I'm autistic I have a hard time socializing normally so this is a much more comfortable platform for me and I can get contact with others.

Oct 15, 2016 6:16 AM

Welcome! I'm so sorry to hear all your difficulties not being believed.
My awesome son also has sensory issues and with his difficulties sometimes communicating how or where it hurts makes me very cautious in trying to make sure something serious isn't happening.
I'm am hopeful your new Dr can help.
I have chronic pain but also fibromyalgia which has made my sense of smell very intense and my sensory sensitivity has gotten intense as well. Sensory overload and pain are not a good mix from my experience.
You have found a great place to connect and be supported. So glad you're here.
πŸ€—πŸ€—πŸ€—

Oct 15, 2016 10:13 AM

@foggurl thank you so much. That means alot and it's nice to hear I'm not alone in pain mixed with sensory sensitivities. That is another reason no one believed me because I had a hard time expressing how and where it hurt. especially with my autism and alexithymia (which is a difficulty understanding and identifying emotions especially in yourself) I couldn't really say how it hurt. They always ask what type of pain and I'm like pain. It hurts. What else is there. Lolz

Oct 15, 2016 10:23 AM

I follow a great page on Facebook called autism discussion page. ... There's lots on sensory and how to calm the sensory input before you hit overload ... Perhaps there may be something there that will help explain to others ... I deal with the lack of understanding around sensory even in a specialized school program ... It's very real and usually getting some tools and support can lessen the overload ... Hope you can find something useful ... Quiet and gentle hugs (()))

Oct 15, 2016 10:27 AM

Welcome to our group! The people here are wonderful. Thats a huge bonus! Not sure which program you are using here but the ability to record your pain and make notes about each day has become my doctors favorite things to see when I go to him. I make sure each day to at least once make an entry. If I did something new I record it so I know to keep an eye on my pain levels to see if it helped or made it worse. If the weather's changed I make sure it's recorded. If something happens like outpatient eye surgery, or doing physical therapy or a car accident etc. I make sure that's in my notes too so I can try to track what triggers the pain.

I also have migraines and have found a great app to track those as well. My Neurologist loved it.

Anywho - Am glad you found us. This community is a wonderful place to Just sit back and feel free to discuss anything. We all deal with different issues but are no strangers to pain. So pull up a chair and sit a spell - you're with friends.

Oct 15, 2016 10:33 AM

Hi sweetie 🌹 and welcome
U r not alone as there are many of us here that have experienced similar situations. πŸ€— i hope u can gain some insight by searching thru the discussions to find out information...πŸ€”there are many threads. 🌻
And we are all here to give u support... πŸ€—so ask questions... or rant if u feel unheard... πŸ˜™we totally understand 🌹...above all... welcome to the community hunni πŸ€—

Oct 18, 2016 12:33 AM

@foggurl is that the right page? Because that sounds pretty good and like it could be helpful! And thank you I love hugs! I hate hand shakes because the feeling bothers me but I like a hug better. *quiet nice hugs* thank you so much for everything.

@mimikay thank you so much your words are so sweet and made me smile. I am using 2 apps. Pain companion to log on here because the forums look cleaner and are easier for me visually because I get visually overloaded if too much is going on in my sight and then I'm using catch my pain because it's easier for me to log the daily entries and its stats and charts are more detailed. I have a doctor's appointment this Friday so I'm hoping this thing will help! I'm not sure how to bring it up though. I'm a little timid and nervous so I'm not sure how to say here look and get information from this cool app I downloaded. But I am gonna show my doctor.
And I have a hard time making friends from being so socially weird but I'm so happy I feel comfortable here and that I'll make friends and have something in common with everyone here.

@lulabel thankyou so much all of you have been so welcoming! And you have all made me feel so much better in a couple hours or days than the pain and disbelief I've come across in years. You've made me feel in peace and started healing from all those years of doubt. And I really think finding this is a turning point for me I feel the closest I've ever been to answers and having support answers at least finding some peace in myself that I'm not alone. because after so many years of hearing these things and never being validated by words or by tests I start doubting myself. but it's nice even if I haven't yet to just know this place is here and these people are here and I can rant and ask questions and it's just so nice. I will probably make a new post update or questions after my doctor appointment. but I do have one question so I'll probably post that before Friday so I can have something to say or suggest to my doctor. AGAIN thank you SO much! πŸ’•πŸ’•πŸŒΊπŸŒ·πŸ˜šπŸ˜š you r so so sweet!

Oct 18, 2016 8:38 AM

Paperheartz - if you have a printer you could e-mail your pain charts from catchmypain to you then print it out. Or you could ask your doctor if you could e-mail him your chart. Maybe even set it up to mail him once a month? My doctors have just started using portals where I can go to request refills etc. I have to figure out how to mail this to them through it. :) on the start page of catch my pain there's the option to e-mail. Just click on that.

Ok off to the torture chamber for me (also known as physical therapy)

Oct 18, 2016 10:17 AM

My name is Crystal and I'm glad 😁 u found this app.

Oct 18, 2016 4:22 PM

Yes that's the page ... You should also find some articles to share that clearly explain your sensory challenges.
I find you delightful and you so clearly express yourself that maybe writing out your concerns along with your pain dairy may help with your anxiety about at the dr visit.
Pain is always hard to explain since it's so personal ... throw in the sensory overload and it's nearly impossible. You have tools here to use and me and everyone else to support you.

I'm sorry you feel socially weird but I think you will find you totally fit here ... Hoping the dr can help with your pain so you aren't always on overload.

I met this wonderful young man when my son did an auditory integration therapy. He first did the AIT when he was 18 or 19... His sensory overload was so overtaxed he said it was painful to blink ... It totally resolved a lot of his issues ... He has returned twice since then for self improvement... Just trying of things that would support your unique needs outside your pain.
The autism discussion page is great place to start Bill Nason has sat on many committees that have adults with autism so he seems to have a well rounded perspective. Hope it give you lots of good information and support.

My son loves tickles and tight squeezes .. but for you always gentle quiet hugs ((()))

Oct 19, 2016 10:53 AM

Hi there! Still undiagnosed here. Probably fibromyalgia, maybe other issues as well. I was diagnosed with Sensory Processing Disorder, and Nonverbal Learning Disorder (an autism spectrum disorder) as a kid. I have a lot of struggles mainly communicating with my doctors about my pain and asking for help, but also I was doing some research and saw some links between chronic pain and SPD. I beleive it, a life of your nervous system either being on edge, or numb, can throw your nervous system out of whack. A lot of my pain symptoms are the same as when I was little, except much more extreme, and not controlled the way that treatment for SPD should and did work. I have found it very helpful to talk to the people here, and also a counselor so that I can communicate better and start the process of getting myself help. We are glad you are here! I am not a frequent in the community, but I am here! Hugs! (only if it doesn't make you uncomfortable or hurt you :-P)

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