1. < Chronic Pain

Undiagnosed...something is wrong.

Posted by ryannelexisd @ryannelexisd, Aug 12, 2019

Hi,

I'm reaching out for some insight on my pain. For years I have not felt well and I don't feel like my doctors ever take me seriously. For the past few years I've experienced fatigue and bad back pain that worsens with stress. I also deal with bad GERD, constant skin irritation, overall feeling of just not feeling good, sore skin, random body pains, and serious sensitive stomach/possibly ulcer problems. I'm only 24, so I really just feel like all of this isn't normal. I've suffered from scoliosis for years but my curve is nowhere near the pain I experience in my muscles. I do have Raynauds as well. I also suffer from leaky heart valve and depression and anxiety. I'm on medicine for the last three issues I mentioned. I literally feel like I'm in the body of an old lady. My knees feel like giving out on the stairs and I never seem to be able to get comfortable. Every time I bring these issues up to a doctor they explain them away. Blaming it on my depression. They tell me my blood work is fine and that many americans deal with back pain too. Recently, I was complaining for the 400th time and my husband suggested that something may be wrong. I agree with him of course but no doctor listens. I'm reaching out for any advice or insight anyone may have for me in my situation. These issues have been going on for years and only seems to be getting worse...

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Mentor
Chris Trout, Volunteer Mentor | @artscaping | Aug 12, 2019

@ryannelexisd, Good afternoon, welcome to Mayo Connect. I am just one of the folks who take their years as patients, caregivers, and community volunteers and try to help Connect members. We cannot diagnose or treat anyone.

With that said, what are we going to do with you my dear? You have three conditions that have been diagnosed and acknowledged with appropriate medications. There appears to be more pain and body annoyance that concerns you.

You said you feel like an old lady. I AM an old lady at 77. I can feel pain and anxiety every day. That is the new normal for me. And I know that with a chronic pain condition...today may be the best 77-year-old day I have.

Have you spoken with a therapist about your diagnosis concerns? Have you journaled or written down how episodes of stress and anxiety descend upon you? Is there a pattern?, a person?, an event? or a fear associated with the arrival of your apparent stress and resulting discomfort? If the medical practitioners are "blaming" your pain on depression, have they suggested some ways in which you can control and mitigate that depression?

And finally, what do you do for fun, what engages your curiosity? We are a caring group, we need to know a bit more about you to be helpful. May you be happy and content today. Chris

REPLY
1 reply
lioness | @lioness | Aug 12, 2019

@ryannelexisd Oh my dear you are far to young to have so many problems. Can you tell us what kind of Dr.s have you seen? With all your symptoms its hard to tell which specialist is best for you but for my fibromyalgia which is pain all over I see a rheumatologist and feel like an old woman also at 77 but at 24 there seems to be something you need to jump on with a good Dr or more Dr.s Be your own advocate if you feel something is wrong take charge of your health and keep looking for answers . Let us know and please post again so we maybe able to help in some way .

REPLY
1 reply
2013pain | @2013pain | Aug 13, 2019

I feel you, I went through the same thing with providers, but don’t give up. There are providers that will listen and will believe you. You just need to tell them what you have tried and who you have seen and done.
Have you tried epsom salt baths for your muscle pains?
I would try too see a specialist in Neurology? I know they are not the best to work with but if u find the right MD. Which state do you live in? I know dr. Manousaukis is good at the University of Minnesota.

REPLY
1 reply
2013pain | @2013pain | Aug 13, 2019

I would look into idiopathic small fiber neuropathy as well because that is what I was diagnosed with and they didn’t believe me with my pain. With my age and I look just fine on the outside, they just shoved me away, my neurologist said if caught in time I could have reversed it in time but now they are completely damaged. So my old neurologist should of listened to me and I should of been more aggressive because now I am living with this condition for the rest of my life, so please be aggressive and listen to your body and keep fighting.

REPLY
ryannelexisd | @ryannelexisd | Aug 16, 2019
In reply to @artscaping "@ryannelexisd, Good afternoon, welcome to Mayo Connect. I am just one of the folks who take..." + (show)
@artscaping

@ryannelexisd, Good afternoon, welcome to Mayo Connect. I am just one of the folks who take their years as patients, caregivers, and community volunteers and try to help Connect members. We cannot diagnose or treat anyone.

With that said, what are we going to do with you my dear? You have three conditions that have been diagnosed and acknowledged with appropriate medications. There appears to be more pain and body annoyance that concerns you.

You said you feel like an old lady. I AM an old lady at 77. I can feel pain and anxiety every day. That is the new normal for me. And I know that with a chronic pain condition...today may be the best 77-year-old day I have.

Have you spoken with a therapist about your diagnosis concerns? Have you journaled or written down how episodes of stress and anxiety descend upon you? Is there a pattern?, a person?, an event? or a fear associated with the arrival of your apparent stress and resulting discomfort? If the medical practitioners are "blaming" your pain on depression, have they suggested some ways in which you can control and mitigate that depression?

And finally, what do you do for fun, what engages your curiosity? We are a caring group, we need to know a bit more about you to be helpful. May you be happy and content today. Chris

Jump to this post

I have not talked to a therapist...though I probably should. There doesn't really seem to be an easily identifiable cause of my stress. Journaling is a good idea tho. Exercise is the only suggestion they've made besides taking my medication.

I currently live a calm lifestyle. My main focus is my puppy. lol I love to pamper her. I also like to learn new crafting skills. Mostly things that don't require a huge amount of energy.

REPLY
ryannelexisd | @ryannelexisd | Aug 16, 2019
In reply to @lioness "@ryannelexisd Oh my dear you are far to young to have so many problems. Can you..." + (show)
@lioness

@ryannelexisd Oh my dear you are far to young to have so many problems. Can you tell us what kind of Dr.s have you seen? With all your symptoms its hard to tell which specialist is best for you but for my fibromyalgia which is pain all over I see a rheumatologist and feel like an old woman also at 77 but at 24 there seems to be something you need to jump on with a good Dr or more Dr.s Be your own advocate if you feel something is wrong take charge of your health and keep looking for answers . Let us know and please post again so we maybe able to help in some way .

Jump to this post

I currently see my MD who is an internist. Then my cardiologist who monitors my heart problem. Other than that I can't get past my MD it seems. A while back I really started looking into autoimmune and just exploring. I have a good doctor...I just don't know how to get her on board of really searching for a problem.

REPLY
ryannelexisd | @ryannelexisd | Aug 16, 2019
In reply to @2013pain "I feel you, I went through the same thing with providers, but don’t give up. There..." + (show)
@2013pain

I feel you, I went through the same thing with providers, but don’t give up. There are providers that will listen and will believe you. You just need to tell them what you have tried and who you have seen and done.
Have you tried epsom salt baths for your muscle pains?
I would try too see a specialist in Neurology? I know they are not the best to work with but if u find the right MD. Which state do you live in? I know dr. Manousaukis is good at the University of Minnesota.

Jump to this post

I have not tried epsom. But I may try that.

I'm located in South Florida...the land of not so great doctors.

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 17, 2019

@ryannelexisd - I agree that you are too young to live with this pain! Also agree that it’s hard to find a good MD in Florida. My daughter lived there some years and she also had serious symptoms ignored by her specialists and internist. However, we found a Cleveland Clinic in West Palm Beach - awsome. They have a hospital near the Gulf coast I think. Then there is Mayo in Jacksonville and University of Miami.
You have one autoimmune disease, Raynaud’s, and you can have another one. Also, fibromyalgia is common when you have autoimmune. With fibro you feel very old! My daughter was first diagnosed by a rheumatologist at age 16. My son was diagnosed at 13, by a neurologist then rheumatologist.
If all tests are normal I recommend that you see a rheumatologist at one of the institutions I mentioned. Don’t give up!! Don’t let anyone tell you it’s all in your head! From my own experience with chronic pain I know depression and and anxiety.
Inge

REPLY
1 reply
ryannelexisd | @ryannelexisd | Aug 20, 2019
In reply to @astaingegerdm "@ryannelexisd - I agree that you are too young to live with this pain! Also agree..." + (show)
@astaingegerdm

@ryannelexisd - I agree that you are too young to live with this pain! Also agree that it’s hard to find a good MD in Florida. My daughter lived there some years and she also had serious symptoms ignored by her specialists and internist. However, we found a Cleveland Clinic in West Palm Beach - awsome. They have a hospital near the Gulf coast I think. Then there is Mayo in Jacksonville and University of Miami.
You have one autoimmune disease, Raynaud’s, and you can have another one. Also, fibromyalgia is common when you have autoimmune. With fibro you feel very old! My daughter was first diagnosed by a rheumatologist at age 16. My son was diagnosed at 13, by a neurologist then rheumatologist.
If all tests are normal I recommend that you see a rheumatologist at one of the institutions I mentioned. Don’t give up!! Don’t let anyone tell you it’s all in your head! From my own experience with chronic pain I know depression and and anxiety.
Inge

Jump to this post

This is a really big help. I actually live right in the heart of west Palm Beach. So I'm definitely going to check out the Cleveland Clinic. I really want to see a rheumatologist and see if I can make any progress.

REPLY
lasirvent | @lasirvent | Aug 28, 2019

Look into vascular compression syndromes-mals, smas, Ed’s.

REPLY
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