I am a 22 year old, I've been diagnosed with hypothyroidism, Von Willebrands disease, migraines, and generalized anxiety disorder so far.
I have been having pain in my shoulders since I was a little kid, it hurts at even the slightest touch and pretty much all of the time. My main areas of pain are in my middle back, upper back, shoulders, neck, and head (with numbness in my face). I can never seem to get comfortable on my pillow lol. My pain shoots down into my hands and forearms and I get weird tingly sensations like there is water dripping down my fingers.
I'm looking for a good doctor right now that will help me. My friends don't understand my pain and have often tried to push me way past what is comfortable activity wise. It will be nice to be able to connect with people on here that can relate.
This is my daughter by the way. She joined CMP because she is in pain all the time and I've been telling her to join in to track her pain and there are loads of great people who can relate to talk to.
welcome to the group. Your mom is awesome by the way so by proxy of course her daughter is! I was 21 when my symptoms began. I didn't have the money to get help and the charity system just thought I was a crazy person. So I suffered from adenomyosis (internal bleeding, and other very unpleasant womanly issues that I don't want to uncouth in sharing. This disease had me bedridden for most of my cycle. The only times I could manage to escape my bed without heavy duty fortification was 9 days of the month.) I also went undiagnosed with intersistial cystitis for most of life and fibro began in earnest when I was 21 and got hit by a car and dragged for 30 yards. (Long story that one)
I also have been dx'd w/hypothyroidism and some other fun stuff that escaped me at the moment.
Anyway, what I would have given to have a support group like this when I was your age. I, too, lost a number of friends who thought I was faking it or worse one night these "friends" and I decided to go out downtown, well we'd just gone down the road to visit another friend and I'd forgetten my cane and eye glasses and begged the driver to go back so I could get them. She didn't. We were in the middle of nowhere on a somewhat busy highway so I felt pretty trapped. Well these girls ended up ditching me. I couldn't see, and I couldn't walk. Oh it was a horrific night. I live in a small town and thank God one of the police officers had pity on me and brought me back to my place. I was in the middle of a serious episode of PTSD, that lasted a couple years with night terrors every night at the same time . And going through what these "friends" did to me was horrifying. That cop found me trying to hobble my way from the crowded bar where I had started having a panic attack and I just lost hold of the floodgates and started sobbing because I was terrified and felt vulnerable.
But you know what, I never have figured out why I got to miss out on most of my twenties and why these illnesses are so dismissed & stigmatized. I have had to make a choice nearly every day to continue moving on, putting one foot in front of the other (even if occasionally my foot misses and kicks someone in the behind.... Or gets stuck in my mouth (not in that order!! Ewww Hehehe).)
But you get my drift. I hope that you can lean on us and take comfort that you have your mom who understands. And now you have access to more people who can become your new friends (I do wish United States were a bit smaller (with fewer sucky people that way when it shrinks there's more room for the awesome kids 😀 and that way when we "meet" people online after a bit we can have more of a chance to actually have a face to face friendship. But hey that is why Skype was invented to help those of us who are disconnected from the world reconnect. I am about to teach my mom hope to use it on her phone so that I can at least day hello to my family members at weddings & such.
Anyway I am going on and on about myself. I'm a little chatter box & perhaps missing human interaction lol.
I look forward to getting to know you and hope that I can help you navigate these waters of being ill at such a young age. One thing I do want to say, that I never heard of understood until i was nearly 30,it's okay to grieve over what you thought your life was going to be like. But the thing about grief is the only way to get past it is THROUGH it. And all the stages that go along with it. But then when you get to accepting whatever this new life is, you can begin to make plans around it and meet people who get you. That's the best part is meeting people who get you and accept you for you.
Take care of yourself. I will be praying for you to find a doctor who "gets" you.
I'm 15, and am also hypothyroid, have anxiety and migraines. Most of my pain begins in my wrists or shoulder blades. What you said about tingly sensations in your arms sounds like it could be a nerve issue.
I have CRPS/RSD (aka nerve wackiness) which mostly effects my limbs, with numbness, tingling, freezing/burning feelings, color changes, and problems with blood circulation.
There are lots of people on here, some waiting diagnoses, others having a ton of various illnesses. I like being on here, because I don't feel like I have to hide my pain, unlike around most other teens.
The friends I had before my CRPS (and everything else) got serious pretty much left me behind. The one or two that stick around are amazing, although I suspect they also have chronic pain.
Hi Kitty, thank you so much for sharing. My mom is pretty awesome 😉
It's extremely frustrating how quickly people assume you are "crazy" or exaggerating when you express how unbearable your pain is. I have no faith in the health care system in the United States. For a long time I have been avoiding doctor's offices like the plague because my experience so far has been "Your pain is caused by you being overweight.", which I'm sure some of it is but that doesn't attribute to all of my problems, or "You probably have nerve damage or something else wrong with you but I won't bother helping you because your insurance sucks and I only have 10 minutes for this appointment." Not verbatim, but essentially what I hear every time I visit a low cost clinic, which is about all my insurance covers.
Those "friends" sound horrid. Thankfully, this app seems like a wonderful way to make new friends that can accept you and understand what living with pain is like. My friends aren't terrible to me but they definitely don't understand. I have some friends that are very dear to me, but they are insensitive when it comes to pain. I always feel like I have to apologize, but it would sound like "I'm sorry that I can't hike uphill for an hour plus and then run around doing other stuff all day. Chances are that hike just made my back/legs/everything feel like they were shattering into a kajillion pieces" (exaggeration at its finest). It's just too hard to explain, so I just keep it inside or tell my mom. I am lucky to have a mom that is so understanding.
My pain has been gradually getting worse over the past few years but really advanced when I had a painfully physically demanding job last year. Now, I haven't worked since January. I have felt so depressed and isolated that I have had absolutely no motivation to do anything more than survive. I don't even talk to any of my friends anymore and that's very out of character for me. I am hoping that talking to you and others on here will help with that feeling.
Getting dragged by a car sounds so traumatizing! I'm so sorry that happened to you. Feel free to share any and all experiences. I'm actually quite the chatterbox too, my mom can attest to that 😆
Thank you for the encouragement and sorry this so long and ramble-y.
Ferretbandit, hi 😊 Do you know what caused your CRPS? I have been told by an ER doc that I "probably have nerve damage", but once I find a primary care physician that takes my insurance, I'll find out more of what is causing my pain and numbness. Sounds like that could be it, if nerve damage can cause the feeling of rain on my extremities lol.
How long have you been dealing with this?
Thank goodness for the friends that stick around. The number of people that don't, is disappointing to say the least. I'm glad you still have a couple of friends that understand and this app to meet new ones.
Welcome, I an new to this site as well, I have a good doctor and a caregiver. I am alone most of the time and found just reading this post most helpful. My pain daily is 8 or 9, and find it hard to try and make people around me comfortable about seeing me in pain. They just watch for heaven sake. I live it. It amazes me how much energy it takes to be around others. I usually just ignore the looks the stares or coments. Some days I can't help but say something. I get so angery , when it takes all I have just to do regular thing's. I am proud of all I have concord in 23 years of illness. I am so sorry that you all had such awful experiences with your so called friends. Sometimes I just want to woop some butt, and take names, and the three days in the hospital to recover
. Why is my pain so frightening to others, I don't know. But I know this we are stronger people for our struggles and probably wiser too. Tired of isolation right now, but sick in bed. Anyways, welcome. Moshell
Haydizzle, welcome to our community family. I'm glad that you found us. I have been diagnosed with over a dozen autoimmune diseases that cause horrible pain. I have fibromyalgia, degenerative joint/disc disease, cervical spondalytic Myelopathy, hypothyroidism, Graves Disease, scoliosis, lordosis, SI Joint dysfunction with fractures and other things. I have been in pain for 22+ years and have no relief. I've also gone through 28 surgeries and have to have others but have been putting them off because I just can't deal with having one more. This is a really great place to come to get ideas, information, vent, laugh, cry, help others, get advise, etc. There is never anyone who will judge you and there is always someone here when you need help whether it be day or night. I hope that you find the support you need being here with us and I hope you find the right doctor for your situation and get some relief. As far as your friends, I would sit down with them and explain that in your situation, you would appreciate it if they wouldn't pressure you into doing more than you are comfortable doing. If they are really your friends, they will certainly understand and you will be in a better position to be with them and not worry about saying that you've had enough snd need to go home. I'm sending positive vibes your way and best wishes for you. You'll be in my thoughts and prayers.🌻🙏🏻
I actually don't know what caused my CRPS, except that I've had pains in my wrists for as long as I can remember, and it just got worse over the years. Pencils are a trigger for pain, but I don't know why. So far as insurance goes, I totally understand how stupid the clinics can be. I go to a low cost clinic that's known (by the community, including other local psychologists, and docs) for labeling patients as drug seekers, and not being helpful. The first doc told me I was faking, accused my dad of assisting my "addiction" (Tylenol 3 and Motrin, yeah right) and said I just had carpal tunnel. It took years before I switched to a different doc, who still is unwilling to prescribe meds, but at least she'll refer me out to specialists. Most of the time, she seems confused by me, the pain, needing my walker, tooth pain. She considers me to be outside of her practice, so there's been little help, until I got to my neurologist, and then to the children's hospital. I've had pain all my life, but it got unbearable about a year ago. I had to completely stop using my dominant hand, then the pain spread, until it eventually took over my whole body. I go to an arts school, and suddenly I was missing 55 days of a semester (technically, by district policy they could have dropped me from attendance) and nearly dropping out. I was using a walker with a seat as a wheelchair, because my docs couldn't decide if my condition would be permanent, and my grandparents had an extra walker. I'm doing better now, thankfully. Honestly, I feel lucky any of my friends stuck around. A couple would take turns pushing me from class to class, and I remember one time getting left with a writing class while my normal class went to the park, which is a 15 to 20 minute walk.
Heydizzle, sounds like we'll get along famously then! Both one to write long messages, maybe we could exchange email addresses, I'm always up for making new friends no matter how far the distance. It's where the heart is.
"Each new friend represents a world in us not yet born until they arrive. " Anäis Nin. (I may have messed that quote up but it gets the point across 😆)
Welcome to our community family, haydizzle! Your mom really is special. You will find lots of support and make lots of friends here. We all learn from each other & lean on each other. I was just dx with hypothyroidism, sjogrens, & memory loss this year. But I have lots of other issues including fibro. I'm actually in a flare right now, having just enough energy to do daily needs. I also suffer migraines, but oddly haven't had one in several months. I'm not sure if the Plaquenil (for sjogrens) is affecting that, but it's helped the fibro. I've got to get some magnesium oil to help with pain and itching... Ohhhh, the itching! We all hate it!
You mentioned numbness in your face. I developed trigeminal neuralgia in 1998, after falling and striking my head twice on concrete. Several years later I noticed my tingling was preceding my migraines, like an aura. My migraines started in 1995, following my second cervical fusion. Sadly there's been nothing I can do for the trigeminal neuralgia. It's always the left upper half of my face, from the ear to the nose and mouth. Sometimes I get a sharp pain in my left eye also.
Is it possible your arms, hands, shoulders & neck could be connected to your cervical discs? Have you ever fallen or had an auto accident? Damage from auto accidents or falls can show up decades later. I saw my Ortho doc last week about scapulae pain. When he touched the right areas he commented, " that's coming from your C4-C5 discs (fused). Go see your pain specialist for a nerve block. " Funny thing, they've been denying any of my pain symptoms in my arms and back was from my neck for two years!
You're going to find that good docs are far and few between, so when you get one... don't let go! I wish you the best in support, and dx & treatments. You'll be in my thoughts and prayers. 🙏🌼
Thank you for the welcome MoShell, I'm sorry you've been going through life with pain for 23 years. It takes a strong person to endure that.
The isolation for me is worse than the pain, being isolated makes me feel like I'm suffocating. I've always been a very extroverted person but this year I have lost contact with most of my friends because I just don't have the energy to keep in touch. I hope things get better for you.
Alwayz- Thank you for your kind words. I appreciate everyone welcoming me with such warmth. It's hard to find people that are as accepting as this community seems to be. Wow, 28, that's a lot of surgeries. I've had 4 and I hope I don't have anymore. I'm so sad hearing about all of the people on here with so much pain and it really gives me a new perspective. Thank you for the advice about my friends, I think that they would be a lot more understanding if I was totally honest about how I feel but sometimes I am afraid that if I complain, they will see me differently. I guess that is more my problem than theirs. I look forward to getting to know everyone on here. 😊
Ferretbandit- You are so strong. I can't believe your doc said that, but at the same time I can. I've been given the run around with several doctors and it is a bummer. I hope you find a better doctor. My mom always tells me "Only you know your body." I've always thought of that when docs try to insinuate that I am exaggerating. I can't believe you are 15, you speak with such eloquence.
Kitty- I would love to exchange info and I forgot to say in the last comment that I also use Skype. It's a good way to communicate with far away friends. Great quote, I love it!
FlappysLady- Hello, thank you! I had a doctor ask me if I had dry mouth and dry eyes along with my other pain problems and I have been wondering if he was talking about sjogrensbut I moved and never went back to see him again
Whoops, accidentally hit reply lol. Hold on, I'm still working on that response! 😂
Anyways, I have had both dry mouth and eyes for years, but I have to get in to see a doctor that will help me address these different areas and rule out whatever necessary. I was tested for rheumatoid arthritis and lupus in January but I had neither. My doc mentioned osteoarthritis as a possibility and a friend mentioned my atlas being adjusted because of my migraines but I have yet to find a doctor in my county that takes my insurance. My mom has mentioned fibro to me and I do have many of the pain areas (not sure what it's called), but not sure about that either.
I've been wondering if the numbness in my face is a psychological thing because it happens when I have headaches but it also happens when I get scared (spiders 😝), or when I hear a loud noise. It's really odd lol. I've never thought of the cervical discs being connected. I'm not super knowledgeable when it comes to terminology so i am going to look all of this up 😁
It is nuts how many doctors will automatically deny something and then later you find out it's the opposite of what they say. I have fallen quite a bit in my life, I'm a class a klutz. I also was in a minor accident a few years back but that did cause the pain in my left shoulder to worsen after it hit the dash. All I know is that my whole upper back and shoulders are constantly tight and as hard as rocks with knots everywhere. It's been like that since I was 9 though. Do you know if that could be related to what you're talking about?
Thank you for the well wishes. I hope everyone has favor with their doctors in the coming appointments. Sorry I took so long to respond, we took my little sister trick or treating tonight and it was very fun but left me and my mom with achey brakeys. Still fun to see the little one so happy though. Hope everyone had a good day! 🎃😁
Hey sweet haydizzle.
The brain is an interesting place, just because you get the numbness when you're scared of something doesn't mean that it isn't what was discussed before. There's a mechanism along which many parts of the body run on, and I don't know that exact terminology so I'm just going to sound stupid. But it basically theorizes that PTSD, fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity and some other disease are affected by this chemical process that had to do with nitric oxide now anwhether it is because there's too much or not enough nitric oxide I can't remember. (sorry totally distracted by being ditched by bf for the entire day & whether or not he comes home all depends on how I'm feeling. Whatever this has nothing to do with anything. Just wish i could go to also and forget this but now I am too wide open to go to sleep because I'm suspicious bc he's behaving suspicious lately. And i know I've said that I was leaving him. I am but I want to try and find a place so i only have to move once. But I think I may not be able to handle this withholding of affection and conversation )
Anyway back to what I was saying, falling can jar some parts of yourself and don't show up until later. I understand that too well.
Oh and the fibro points you're telling about are called pressure points, I think. I was told that they act up when you're flaring so if you go into the rheumatologist while you aren't flaring those spots aren't active. But I basically live with those spots activated all the time now and I hit them with my hands when i get aggravated not on purpose but out of habit of moving that way. Slapping my thighs is the one that really gets me, my hands for perfectly into that spot. And oh how I wish i had a massager top user on the points on my arms and forearms . Oooh that is totally going on my Christmas list. That and a friend or two.
That's what kills me the most too, I was the social butterfly. I am always talking to people when I'm well enough to go out. But I'm not supposed to be doing the shopping due to my server chemical sensitivity. But if i don't do it, bf won't.( Anyway he's soon to have a big fat X before his name.)
But the isolation kills me they most. It's like this insidious cancer that eats away at my socially receptive brain. I miss having friends. Good friends. I have one who will drop enduring of i user or code word but i don't want to wear her thin doing me favors. But I would love to have one or two more who would be willing to give up fragrances to hang out with me. (I'm kind of high maintenance that way and face it we love in a world where even hospitals use fragrances , which are so chemically dangerous even to healthy people. But i won't climb into that soap box right now.
Let's figure out how to trade into and start talking! :)
Thank you for the info Kitty. I'm sorry about your bf, you deserve better.
Do you have an Instagram? If so, my name on there is haleyconquersfood. It's a food Instagram, but that's one of my main ways of communication at the moment. I had to delete skype recently because of running out of space on my phone but once I clear up some more space I will reinstall it and we can chat on there. Let me know what works best for you.
I do email. I will find you on Instagram. Right now.!
Oh and I think i may be in trouble. I kind of hope that I'm asleep when he gets home. I accidentally had a website send him a text (I didn't read the warning message all the way. Way to go impetuous Kitty!) that is so stupid and was such an accident! . Omg he's going to be furious. I just hope he spend the night wherever he is. Because the flames coming out of his head right now (I imagine) are really terrifying, I've seen them.... . I know him well enough. But what am i supposed to think when this is the second time that he's disappeared in 10 days? Of well I think he wants me to be the bad guy and I may have just handed over ammunition....... Oh good God help me. I could just feign sleep when he arrives. Ha ha ha. Oh well, hell. I'll just blame the gnomes.
I sent you a message on Instagram. Sorry if it is an overshare. I am totally having an anxiety attack. And I want to pay about it but i feel like it's my fault and i don't want everyone to think I'm a total loser for being freaked out about this.
Ok, I'm checking it now. No need to apologize at all 😊
Thank you. I feel so sick right now. From the anxiety and of course i haven't much anxiety medicine left. I am just anxiously awaiting the slamming door and angry foot stomps through the place.
Omg. Take a breath. And a couple more. And some medicine. Oh my my my my.
Oh craptastic. He's home. Omg