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Scared to get a Diagnosis

Jan 15, 2017 7:25 AM

Hi everyone, it's my first day on this app and wanted to ask for some advice. I just turned 20 and have been dealing with chronic pain for as long as I can remember.

As a kid, I hated walking and running because my knees and ankles hurt. The only sport I could tolerate was swimming so I did that competitively until recently. My coaches were annoyed at me because I was always the slowest runner and hated doing dry land exercises. About 2 years ago, after quitting swimming because I was too short to continue competeing, I noticed a dramatic rise in pain and decided to go see a doctor. They dismissed my pain as being all in my head and being too sensitive. I looked up my symptoms and think that I may have ehlers danlos syndrome hypermobility. I've always been flexible, I bruise easily, my joints keep clicking and popping out of place, and I have similar digestive issues. I've been to see three doctors in the past year and they have all dismissed my symptoms. They keep telling me that I'm just hypermobile and it will get better with age. The problem is, my pain is getting worse. I haven't been able to use my right shoulder for the past few days after partially dislocating it.

But at the same time, I'm scared of getting a diagnosis. I don't want proof that this will get worse. I know that it is the right thing to do, but I don't know how to convince my doctors to take me seriously.

Sorry, this post is super long. Oops

Jan 15, 2017 8:15 AM

Justkeepswimming im sorry for what you're going through and to feel such discouragement looking ahead. I think your name is the best advise, try to keep moving and if swimming brings you joy (and it's good for your joints) then keep doing, you don't have to compete. Also keep pushing for a diagnosis. What kind of docs have you seen? Try seeing a rheumatologist if you haven't already, they seem the best equipped. A diagnosis can actually be very liberating because then you can begin the business of healing yourself (and yes, most often it's up to you). Make a record ( this app is great) for a couple of weeks or a month of your symptoms even if they don't seem related just write it all down, your good days too! I'm glad you're here! This is a very helpful community and it really helps to talk to people who have similar issues. Hey, mine is long too lol.

Jan 15, 2017 2:30 PM

Welcome to the community justkeepswimming. I have fibromyalgia among other things. I think that's a good idea to use this app and record your symptoms. Try to get into see a rheumatologist or neurologist. There are people from all over the world using this app. So everyone comes on different times. Try looking at older topics might answer some of your questions. Take care.

Jan 15, 2017 3:37 PM

Keep trying and keep up the fight, the diagnosis may be scary but if they get it right they may just be able to give you some relief!

Jan 15, 2017 5:03 PM

I got my hEDS diagnosis from a geneticist. Swimming is one of the recommended exercises for EDS because of the low impact.

I can't say you defantly have it, but your symptoms are very much like mine are. I didn't get diagnosed until I was 43, almost three years ago.

Jan 15, 2017 9:26 PM

Hi! I'm 22 years old and have been suffering from chronic hip pain for 5, after doing 14 years of gymnastics. Swimming is the only thing that makes me feel better. I can relate to you, I'm hyper mobile and every dr I see says "you're hyper mobile so let's do these stretches and exercises to give you some stability" but it doesn't work. I have been seeing multiple orthopedic surgeons now so I can get medical imaging done to see if there's a bigger problem. If swimming makes you feel better, do it. And don't be scared of a diagnosis. I wish I had one! If your gut is telling you something more is wrong, I would trust it.

Jan 18, 2017 8:11 AM

Justkeepswimming1996, if the doc said you have hypermobity the likelihood is you may very well be dealing with EDS.. however I don't know a lot about it.
Be VERY careful with that shoulder.. my left shoulder has had many surgeries and it has been dislocating almost daily at this point.. don't let that go on for too long as you may cause irreparable damage. Sending well wishes and gentle {{{Hugs}}} your way.🤗💕

Jan 18, 2017 7:15 PM

Keep talking to your doctors, make it clear you are not interested in pain medication. Eventually, they will listen. If not, try a new doctor.

I found that getting a diagnosis gave me a sense of peace and the ability to start mapping out what my life will look like from here. It's scary, but you also will have that diagnosis when explaining your particular situation to others. I hope you find some relief and peace.

Jan 19, 2017 9:28 PM

Hi there! This thread drew my attention because I was just like you. I had been researching Fibromyalgia for 15 years (long story) when I became symptomatic. I wanted it to be something else. Anything else. I didn't want to hear the diagnosis. But I was getting worse, not better, despite all the stuff I knew to do. It was bittersweet to get the diagnosis. Sweet because I finally had validation. Bitter because it's never going away.
But what ended up happening was that it sent me on a quest to heal myself. In doing so, I've learned all kinds of things that have helped so many people! It's a path I would have never gone down had it not been for that diagnosis. Not that I didn't struggle in the beginning. It can drown you, or it can propel you, but that is your choice. I did a lot of flailing, then treading. I wouldn't say I'm winning any races but I can at least make some laps. :) (figuratively speaking)
The doctor you chose is *so* important. Keep going until you feel like you are being heard and validated. Then keep going until you find one of like mind. I got extremely lucky right off the bat. My Rheumatologist will prescribe anything I need - however - he is the one that began teaching me about diet, lifestyle changes, and alternative paths.
So don't be afraid.. and who knows! Maybe you will get good news and it's something that can be fixed.
Either way, support is important. I'm new to this group but it seems like a very positive group to be associated with. :)

Jan 20, 2017 4:30 PM

Hey! My name is Bethany, and I'm 19 and I have Ehler Danlos Syndrome Hypermobility type!! My story is similar to yours and it took me 10 years to be diagnosed! I know that having hEDS sucks, but there really are things that will help, I promise!! I struggled a lot as a kid and ended up having to quit all of the things I love. My pain is only getting worse, too, but there are little things that we can do that will make a difference. I recently saw Dr. Heidi Collins who diagnosed me on the 5th, and she gave me A BUNCH of matierial and information! One of those things is a radical (for me) diet change. I've already started it and I can tell it's going to help. She also recommended taking specific vitamins and supplements, so maybe you should talk to your doctor about that? I'm also getting into physical therapy and I'm getting different braces for my bad joints. And on top of that I'm getting checked for dysautonomia. But I think the most important things are to 1. Find a good, understanding, doctor, and 2. Always remain positive!!!! It's hard (trust me I know, I have severe major depression with psychosis and anxiety), but it gets you a long way. And do TONS of research!! I recommend Heidi Collins' video on YouTube called "If you can't connect the issues, think connective tissues"!!! I really hope things get better for you and always always- just keep swimming!!!

Jan 27, 2017 12:10 PM

Welcome to the community family justkeepswimming! I won't repeat what others have already suggested. I don't have heads, but I have fibro & a long list of other chronic pain issues. It's very important to have good doctors on your care team. If one isn't working with you to get answers & a treatment plan then find one who will. I've had surgery on my neck multiple time, twice in the 90's. I started having headaches, arm & hand pain & neuropathies in 2011. It took me until 2016 & 6 doctors before I could find an orthopedic-neurosurgeon willing to find the cause and treat me, with another cervical fusion. I have C2 & C7 to still take care of. I'm glad I followed my gut instinct to get the Ortho-neurosurgeon I have, or I could have ended up butchered and paralyzed. I think the other doc's were afraid to do what was done. Anyway, find doctors who care about you as a person. Hugs love and prayers as you find them! 🙂💕🙏🌸

Jan 27, 2017 12:59 PM

Find a someone who does Chinese accupuncture. I suffer from the same thing going as you. Finding my accupuncturist changed my life!

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