Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

I'm terrified

Mar 02, 2015 9:55 PM

Hi everyone! I'm new to this app. I am an 18 year old female with some kind of chronic pain. I have a reumatologist appointment this Wednesday and I don't really know what to expect when I go.

I've been in pain for many years but I always brushed it off, not thinking much of it. I recently started college and I am on my second semester. First semester was a brutal blow to my health. The last month of classes was filled with constant visits to the chiropractor. No amount of over the counter pain medication helped and I hardly got any sleep. During my week of finals I got roughly 13 hours of sleep. Then over my break I slept most days.

My ribs are always popping out of place and my body is inflamed. I'm getting use to tolerating the pain some days. My best day in months was on Friday. I only had some shoulder and arm pain. But over the past few months I've been getting worse.

The thing I hate most about all of this is I have one friend who is worried about me. Meanwhile my family tell me to shut up about my pain, call me lazy, grandma, baby, they tell me to loose weight, to move, and I'm sick of hearing it. I feel so depressed these days. I use to never allow myself to cry and now I'm crying alone at night. I've given up on doing homework. I can't focus on anything and I struggle to hold a pen now. I'm struggling to type this on my iPod. I apologize for any spelling mistakes. πŸ™ˆ

I don't know what to do anymore: I'm considering dropping out this semester. I don't have a job. I'm scheduling an appointment to see a school counselor. I want to be healthy but I know that will never happen.

Mar 02, 2015 10:30 PM

Hello, you are not alone. I am just like you, dealing with pain after brushing it off for years, and everyone thinking you are exaggerating and not in pain. Im also currently struggling to keep up working unable to focus on the pain. I've been referred to a gynecologist ( thinking possible endometriosis adhesions) a rheumotologist to check for athritis, inflammatory illnesses or similar, due to my pain rotating randomly through my body from my shoulder to my toesand thought my leg, shin, butt, back muscles and joints, on any given hour of the day, they have also referred me to a neurologist, and an internist (internal medicine specialist) who test and check for auto immune illness, genetics, and internal illnesses that could be nerves attached to muscles. I cant really remember due to the sound of joy and happiness when I heard they were finally taking me seriosuly, but if I were you I'd ask your doctor if you can be referred to someone else aswell. I'd recommend talking to the school counsellor and see what her suggestions are. Explain that you are in chronic pain and you are being referred to specialists to try and diagnose and manage it. Say the pain is affecting most areas of your life including school as it is hard to focus, process, and retain information. Ask her if she knows if the school has a policy for students who become chronically unwell, are they able to take some cpurse content at home, and have it marked etc via e-mail, communications from the tutor via email, and come in for some classes when able to. I went to a school that did that for one girl who had mononucleosis and missed school but did the work from home until she was well enough to return to school. Don't lose hope! We will be healthy again! Try to get some more support, which it sounds like you are doing and it will lead to getting healthy. Best of luck

Mar 02, 2015 11:14 PM

Hi Nomi, I haven't been on this app very long myself. There are some really great people on here that are here to listen and many times can give some good advice. You said you have a rheumatologist appointment coming up, my advice is this. Write down a list of all your symptoms, even if it's just a slight sore throat that you get once in a while. The more details you can give the better. Also don't be afraid to ask for second opinions.

My pain came out of no where and started on me. I am fortunate in the fact that members of my wife's family have some of the same problems, so she some what understands what I'm dealing with. I have been very overwhelmed with all the testing and seeing multiple doctors.

Once again welcome to the community and there are many people on here that can give better advice then me. Good luck with everythin.

Mar 03, 2015 3:13 AM

Hello, I want you to know you arnt alone, and never feel the way you do. I know it's hard but seriously don't listen to negative people..they arnt in your body and they don't know what your going through. I'm a 17 year old,also female. And I've realised how much pain sucks,especially so young.. We've got a long time to live, teenage years, jobs, uni, tafe, ect. All the big decisions in life are happening or soon too. You must stay strong and believe you can do anything,even if that means pushing through your next semester.

Mar 03, 2015 7:49 AM

Welcome Nomi182! I'm very sorry that you're dealing with this, and especially that you feel so alone but the one friend!

I'm 53 and when I was in college raising 2 children, I took advantage of the college counseling resources. It didn't cost anything per session and it gave me a great outlet for the depression. Your crying, when you didn't use to, is partly from the frustration of what you're going through. But I'd almost bet you have depression that's come on because of everything combined. Many of us have depression as a result of our physical health deterioration. The counseling may be all you need, but if they, your friend, or even you think you may need something for the depression, please know there is no shame in seeking psychological help. It doesn't mean you're crazy as some may say.

JayS77 gave you very good advice, to write down as much detail as possible... What were you doing as the pain came on; how long did it last; what did it feel like, etc.

Many younger people (teens & adults) are using this site. And you will find much support from all age groups. You can cry, rant, praise, whatever you need to "let it out", and you will not be judged, or called names. And if you wish for prayer let me know; I pray for everyone to have the strength to get through one day at a time. But occasionally some will name specific needs.

You will get through this, and it may not be the life you thought, but you'll be stronger and more compassionate from the battle. Try not to think ahead and let yourself be overwhelmed. Take one day at a time. If possible get through this semester but let your professors know; get a letter from your doctors. Try online classes if you can. Just don't give up on yourself because you are stronger than you think! Others that call you names, tell them ,"If you had to walk in my shoes just one day, I'd bet you'd understand what I'm going through." Read the "Spoon Theory" and share it with your family & friends. πŸ™‹πŸ˜˜πŸ™

Mar 03, 2015 9:26 AM

Nomi182, welcome to the group. I'm sorry you are so very young and suffering so much. I know what you are dealing with because I have been told all of the same things that you have. When you go to the Rheumatologist, just know that he/she will give you a full exam, ask you several questions (make sure that you write down any question you want to ask so you don't forget any and write down any answers you get) Make certain that if there is something you do not understand that you ask the doctor to explain it to you. If the doctor is not attentive, doesn't make you feel comfortable and does not seem to be listening to you, find another one. That is one thing that you must remember, there is always another doctor and one may not always be the right fit for you. Please try not to think that you will never be healthy. Your doctor may find something that can be remedied and your pain levels may be decreased to the point that you can enjoy your life. You are young and have a whole life of wonderful things to experience. You will learn to tolerate the pain (even though I feel that nobody should have to "get used to" being in pain) and you will become stronger. We are all here to help one another and and are always here to listen, advise, question, vent, laugh, cry, etc... It's a great community with a wonderful group of people. It certainly has been a Godsend to me. I pray that you have a good outcome with your doctor appointment. Hang in there, take one step at a time and figure things out as you go along. Don't rush into any decisions until you know what is happening with your body. I'm sending you a gentle hug and I'll be thinking of you and sending positive thoughts your way. Keep us posted as to how you are doing.

Mar 03, 2015 11:49 AM

Welcome! I'm a 21 year old female that was recently diagnosed with fibromyalgia. It's hard being in pain all the time and not have anyone understand but that's what we are for. :) I recently went to a doc that diagnosed me and I was so nervous because I had never had a doctor actually listen. I went in anyways just to give her the benefit of the doubt. I took a list of everything and explained how it was effecting my life. There are doctors out there to listen you just have to find one. Goodluck at you appointment. And we are all here for you ☺

Mar 04, 2015 8:19 AM

Thank you everyone for the advice, prayers, and support. It really means a lot to me. ☺️

I leave for my appointment soon. I'm so nervous because I have a needle phobia and I don't want a lot of tests done. I hope everything goes well and I don't panic. I will be sure to post later today if they find anything. Wish me luck. πŸ™ˆ

Mar 04, 2015 8:26 AM

Deep breaths to stay calm. Good luck and God be with you! πŸŒΉπŸ™

Mar 04, 2015 8:39 AM

I'm afraid of needles too. I find it a little easier if I can't see it. I ask to lay down, ask them to use a butterfly needle (smallest one), and point out that my surface veins collapse so they are going to have to go deep. I started doing this after i got poked 7 times without them getting anything. I haven't had any problems with them not getting anything since.

Mar 04, 2015 9:37 AM

Don't be terrified although it's perfectly understandable that you feel that way, even normal. BUT the stress your body feels coming from that place of terrified emotion will only serve to amplify your pain. It will be OK. I can tell you that. It will be difficult and not what was wanted, but it can be accomplished...just not all at once. Recovery is most often found with an action plan and a slow adaptive, graduated pacing of activities. Good luck on your journey!!! We are all here for you :)

Mar 04, 2015 2:44 PM

The rheumatologist says he doesn't know exactly what it is. I would have to go home and look at the papers again to see what he wrote. I know for sure that he believes Fibromyalgia isn't a real thing and that it's just a name for pain. Though I am pretty sure that's what I would have. Looking at all the points and symptoms, I checked yes to all of them.

I was told to have blood work done but I couldn't get myself to do it. It took 45 minutes of coaxing just to get me in the elevator to leave. I think my needle phobia comes from when I was 4 or 5 and my parents tricked me into coming along for a doctor appointment for my sister and then afterwards telling me I needed shots. I didn't want them so I hid behind a mountain of chairs in the corner of the room, my dad had to physically drag me out by my arms and legs and then I was pinned down by four people who shoved a bunch of needles into my legs. I have had panic attacks about needles ever since. I know I'm in a lot of pain and I want help, but I don't want to go back for tests and appointments.

Mar 04, 2015 3:22 PM

What an awful trick to play on you! No wonder you hate needles.

Mar 04, 2015 3:52 PM

My parents know it's a big deal for me but they can't understand why I can't just get it over with.

The doctor thinks it might be Marfan's syndrome but he's not sure. And he says he can't send me to physical therapy until after tests. He also says I have the, "winter blues". I believe that would be called the depression I've had for 7+ years and never been seen for.

Does anyone else have a pain in their feet that feels like they are walking on bees and nails? It's been getting worse over the past week. It first started when I was in the shower and I almost fell.

Mar 04, 2015 5:40 PM

Nomi182 no wonder you hate needles so much. I don't understand why parents tell their kids that needles don't hurt or in your case trick you. I never told my kids they didn't hurt or trick them.I think the majority of us have depression,it's nothing to be ashamed of or asking for help for it. As for your feet you may have Nuropathy in them. Sorry about spelling.

Mar 04, 2015 7:07 PM

Nomi182, I get tingling and stinging/burning pain in my feet. Occasionally its painful to walk. Mine is related to the disc issues in my back. Do you have disc issues like bulging, herniated or fused?

Mar 04, 2015 8:10 PM

I have had that kind of pins and needles, the awful pain tops and bottoms of my feet-but I have spondylosis of the spine, and I am a much much much older ... However, I have been in pain since I was about four years old, and I am 54. Dealing with pain, and the insensitivity of those around you, can be extremely debilitating. If that means that you have, or find someonesomeone who can support you whether that be a counselor or a trusted friend then you need to take care of your mental health as well as your physical health. Write down all of the questions you have for your doctor. If what he has to say seems like she's playing off your pain, or thinks that you are overstating your pain, get a second opinion quickly.

Mar 06, 2015 7:20 AM

My 15 year old son has Marian syndrome. We had genetic tests done because that is the only way to get a definite diagnosis. He has no pain though. He does walk on his toes a lot however and has the flexibility of an acrobat. He is 6'4 and weighs 109 lbs! I guess that it standard for Mariam syndrome to be tall thin and the flexibility part. He goes in twice a year for and Echo which is a heart ultrasound and has his eyes checked regularly. He has to keep his blood pressure and heart rate low and takes propranolol for that. He can't play any sports either. However, we have been assured that Marfan is "not a big deal" by all the specialists as long as we follow the restrictions. The main issue is that the disease affects the connective tissues. That's the reason for no sports or increases heart rate and bp. If he were to play football for example and be tackled or knocked down hard the worst thing that could happen is his retina could be detached or his aorta could detach. That why you have to be low key and cautious about what you do. Irregardless of what your health issue turns out to be I hope that you can find a support system, whether a group of friends or a group of people that have similar issues to help you through. It sounds like counseling would be very beneficial to you too. It doesn't mean you're crazy or bad... It means you're human and need help getting through something. You're worth it so do it for yourself!! Take care of you and tune out all the negativity as best you can. We are here for you!

Mar 08, 2015 3:37 PM

Make the most of the life that you can at 47 being told if I make it to 56 I'am doing good ! Doc sad las week ,as a mum of five youngest 14 years old that not what you what to hear ! I'am in a wheelchair and I have Jhm and osteoporosis and eds v11 ( fucked ) sorry but that what I'am now ,how do you carry on !

Ready to start relieving your pain?

Join Community