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seaann
@seaann

Posts: 5
Joined: Dec 06, 2018

Symptoms taking over my life and I’m only 33

Posted by @seaann, Thu, Dec 6 2:47pm

Hello,

I am seeking some advice on here or experiences from those who maybe have a similar story. I’ve recently seen a cardiologist and have been given a 30 day heart monitor and my echocardiogram is still a week away but my symptoms are just disrupting my life.

Bear with me I want to give as many details as I can so sorry for the long post!

I’m a 33 y/o female, fit, and generally healthy. For the past few years I’ve suffered sudden bouts of fatigue and body aches that go away after a few weeks, blood test reveal some markers of inflammation but nothing doctors seemed concerned about.

The last month however, I began feeling very fatigued and was sleeping 12-14 hours sometimes and still feeling like I could sleep more. Eventually, the fatigue became accompanied by an ache in my left shoulder. Since at the time I was working out, I laid off of my workouts completely to recover. That turned into full body aches.

On Friday, 11/23, the migraines started, I took my migraine medication and was fine, things took a turn for the worst.

On 11/25, I couldn’t get out of bed, my body was aching like I had the flu, low grade fever, and severe fatigue. After sleeping all day I decide to wake up and get some food, after about 10 minutes of being awake, I felt an odd sensation and next thing I know I passed out.
I was out according to my husband for about 5 seconds, woke up unaware I had passed out, broke out into a cold sweat, and passed out again while on the ground for a few seconds. This when I began feeling like something was really wrong and I haven’t felt like myself ever since (I have never fainted before).

I went to ER after the fainting and two separate ECGs came back, one abnormal one borderline. The details only said “Nonspecific T wave abnormality now evident in Inferior leads T wave inversion now evident in Lateral leads” they sent me home and symptoms have only gotten worse.

The cardiologist explained that could mean anything and sent me home with a bodyguardian verite monitor for 30 days and I’m getting an echocardiogram soon, but the symptoms have just become unbearable.

I can’t sleep or lie down without feeling numbness and chest and arm pain radiating, sometimes, when i am about to fall asleep i feel a suddenly shock or jolt and it wakes me up. I am starting to get short of breath even doing the slightest things and the headaches are constant. I haven’t been able to go a day without being in bed. Some days I feel fine for half of the day, but others I’m just in bed.

I am afraid something will happen when I’m alone. All doctors keep saying is since I haven’t had much chest pain that they doubt it’s anything heart related and that I could have other issues, but stop short of trying to help figure out what else there could be.

Pregnancy test came back negative, blood work shows some abnormalities but nothing they can figure out and flu test is negative.

Please help, my health has just taken a nose dive so quickly and each day I am more and more incapable of taking care of myself.

REPLY

Please someone help, I don’t know what else to do

Have you seen a neurologist? Or been checked for Lyme disease? I hope you get to the bottom of this , good luck to you🙏🏻

@seeann In reading about your symptoms with migraines, shoulder pain, passing out, and because your symptoms change when you lie down that causes numbness, and a shock…. these are things that make me think there could be a spine related problem that might change the blood supply to your brain. Migraines can be related to altered blood supply. My best advice is to come to Mayo if you can. They will do things very quickly to figure out what is happening, and you might spend months looking for answers elsewhere and waiting weeks for appointments. It sounds like this is a problem that has been getting worse for a few years. Have you had any injuries like a whiplash that affects your neck? Between every vertebra spinal nerves exit the spinal cord. An electric shock type pain is usually nerve compression, and I have had them because I had a spine injury years ago, and I had spine surgery at Mayo after 5 local surgeons could not figure out my issues. Migraines can be caused by a spine problem when misalignment of vertebrae puts tension on muscles. There are issues like Bow Hunters Syndrome where vertebrae that are turned cut off or diminish blood supply to the brain. That certainly can cause fainting (and so can fear… I had that problem for years). If you have instability in your cervical spine and if muscle spasms are moving things around, it could cause any related symptoms to come and go. I have experienced that myself with cervical stenosis and spinal cord compression. A problem in the brain or spinal cord and exiting nerves can cause the problem somewhere else in your body if those specific nerves are not sending signals properly. There can be cysts or tumors compressing the spine too. It sounds like they are focused on your heart and not thinking about neurological issues. Spine problems can cause shoulder pain too. With lying down causing numbness, is that in your arms? Let me explain why I'm asking this. I have Thoracic Outlet Syndrome (TOS) which does cause arm numbness and it cuts off circulation. My hands used to turn blue and get cold. It is a compression of nerves and blood vessels passing between the collar bone and rib cage caused by tight muscles, injuries, or bad posture, and laying down at night made it worse because of the position of my neck and arms. I also had carpal tunnel compression in the wrist and then developed compression on the spinal cord in my neck. I had neck spasms that would cause a spasm into my chest and I went to the cardiologist, but there wasn't a heart problem. I was working with a physical therapist on the TOS when my spine got bad and for 2 years, I couldn't get a surgeon to help me. During that time, my therapist would keep realigning my spine (which was moving around because of spasms). Sometimes I walked with a limp (foot drop), and when my neck was realigned, I walked normally again. Where are you getting shocks when you lay down? Just before I had spine surgery, if I bent my neck, I could send an electric shock down my entire body. That was because there was no room around my spinal cord and in bending forward, it was stretched across the bone spurs that were digging into it. It was held in place and couldn't move as it should. TOS is often missed and most doctors don't understand it. They don't spend time on it in most medical schools. When I came to Mayo, I needed a place that understood TOS as well as my spine issues and I was so glad I came to Mayo because it changed my life. I wish I had come there first. I agree that you need to see a neurologist, and preferably one who is a specialist in brain and spine issues. A neurologist would also look for autoimmune diseases and you mentioned some abnormal blood work and inflammation. Sometimes you need to see a lot of different specialties to figure out something like this, and that is what Mayo does so well and so quickly. If you want any specific information about my Mayo doctors, just ask. I did see a spine center neurologist first before I met the spine surgeon. Please check in and let us know how you are doing. You don't have to wait the 30 days on your heart monitor tests to ask to see other specialists, like a neurologist. You do need to advocate for yourself when you think they are not listening or if they don't understand. You can always look online for answers too. I did that and found medical literature with cases like mine so I knew what 5 surgeons had missed. I sent that paper in with my request to be seen at Mayo. It may help to get copies of your medical reports and look up what you don't understand. That would tell you what your doctors are thinking, hopefully, and they might just leave out what they don't understand. I saw that with my records, and some made comments that say they didn't know why I had pain all over my body.

Here are some links for information that might help:

Thoracic Outlet Syndrome https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Bow Hunter's Syndrome https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3836934/
Symptoms of Numbness https://www.mayoclinic.org/symptoms/numbness/basics/causes/sym-20050938
Shoulder pain causes https://www.mayoclinic.org/symptoms/shoulder-pain/basics/causes/sym-20050696
Headaches https://www.mayoclinic.org/symptoms/headache/basics/causes/sym-20050800

@scardycat

Have you seen a neurologist? Or been checked for Lyme disease? I hope you get to the bottom of this , good luck to you🙏🏻

Jump to this post

I haven’t, I live in the West, and last time it came up the doctor mentioned they don’t do Lyme tests here since there are rarely any ticks but I will request that and see! Thank you!

@jenniferhunter

@seeann In reading about your symptoms with migraines, shoulder pain, passing out, and because your symptoms change when you lie down that causes numbness, and a shock…. these are things that make me think there could be a spine related problem that might change the blood supply to your brain. Migraines can be related to altered blood supply. My best advice is to come to Mayo if you can. They will do things very quickly to figure out what is happening, and you might spend months looking for answers elsewhere and waiting weeks for appointments. It sounds like this is a problem that has been getting worse for a few years. Have you had any injuries like a whiplash that affects your neck? Between every vertebra spinal nerves exit the spinal cord. An electric shock type pain is usually nerve compression, and I have had them because I had a spine injury years ago, and I had spine surgery at Mayo after 5 local surgeons could not figure out my issues. Migraines can be caused by a spine problem when misalignment of vertebrae puts tension on muscles. There are issues like Bow Hunters Syndrome where vertebrae that are turned cut off or diminish blood supply to the brain. That certainly can cause fainting (and so can fear… I had that problem for years). If you have instability in your cervical spine and if muscle spasms are moving things around, it could cause any related symptoms to come and go. I have experienced that myself with cervical stenosis and spinal cord compression. A problem in the brain or spinal cord and exiting nerves can cause the problem somewhere else in your body if those specific nerves are not sending signals properly. There can be cysts or tumors compressing the spine too. It sounds like they are focused on your heart and not thinking about neurological issues. Spine problems can cause shoulder pain too. With lying down causing numbness, is that in your arms? Let me explain why I'm asking this. I have Thoracic Outlet Syndrome (TOS) which does cause arm numbness and it cuts off circulation. My hands used to turn blue and get cold. It is a compression of nerves and blood vessels passing between the collar bone and rib cage caused by tight muscles, injuries, or bad posture, and laying down at night made it worse because of the position of my neck and arms. I also had carpal tunnel compression in the wrist and then developed compression on the spinal cord in my neck. I had neck spasms that would cause a spasm into my chest and I went to the cardiologist, but there wasn't a heart problem. I was working with a physical therapist on the TOS when my spine got bad and for 2 years, I couldn't get a surgeon to help me. During that time, my therapist would keep realigning my spine (which was moving around because of spasms). Sometimes I walked with a limp (foot drop), and when my neck was realigned, I walked normally again. Where are you getting shocks when you lay down? Just before I had spine surgery, if I bent my neck, I could send an electric shock down my entire body. That was because there was no room around my spinal cord and in bending forward, it was stretched across the bone spurs that were digging into it. It was held in place and couldn't move as it should. TOS is often missed and most doctors don't understand it. They don't spend time on it in most medical schools. When I came to Mayo, I needed a place that understood TOS as well as my spine issues and I was so glad I came to Mayo because it changed my life. I wish I had come there first. I agree that you need to see a neurologist, and preferably one who is a specialist in brain and spine issues. A neurologist would also look for autoimmune diseases and you mentioned some abnormal blood work and inflammation. Sometimes you need to see a lot of different specialties to figure out something like this, and that is what Mayo does so well and so quickly. If you want any specific information about my Mayo doctors, just ask. I did see a spine center neurologist first before I met the spine surgeon. Please check in and let us know how you are doing. You don't have to wait the 30 days on your heart monitor tests to ask to see other specialists, like a neurologist. You do need to advocate for yourself when you think they are not listening or if they don't understand. You can always look online for answers too. I did that and found medical literature with cases like mine so I knew what 5 surgeons had missed. I sent that paper in with my request to be seen at Mayo. It may help to get copies of your medical reports and look up what you don't understand. That would tell you what your doctors are thinking, hopefully, and they might just leave out what they don't understand. I saw that with my records, and some made comments that say they didn't know why I had pain all over my body.

Here are some links for information that might help:

Thoracic Outlet Syndrome https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Bow Hunter's Syndrome https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3836934/
Symptoms of Numbness https://www.mayoclinic.org/symptoms/numbness/basics/causes/sym-20050938
Shoulder pain causes https://www.mayoclinic.org/symptoms/shoulder-pain/basics/causes/sym-20050696
Headaches https://www.mayoclinic.org/symptoms/headache/basics/causes/sym-20050800

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Thank you SO much for your response! To answer some of your questions, I haven’t had any significant injuries that I can think of, although I did spend most of my life in the military and in a law enforcement job so, physical activity was a constant and I’m a relatively small framed female so I’m sure I may have and brushed it off. The pain is a burning achy pain, I wouldn’t say I have many spasms. It’s more of sharps pains?? BUT my arms and legs and always cold and my lips turn blue from time to time especially after the shower. Since you mentioned that, I’ve also noticed some webbing on my skin that had blue patches, I’ll post it here, could that also be spine related like you said? Would going to a chiropractor help at all while I wait for an appointment? I’d love to go to Mayo, I’m too far away…

Most of the time my legs have this web with some blue coloring underneath.

D07D85E7-A68E-4060-B0DD-4B300BB32B19

@seaann

Thank you SO much for your response! To answer some of your questions, I haven’t had any significant injuries that I can think of, although I did spend most of my life in the military and in a law enforcement job so, physical activity was a constant and I’m a relatively small framed female so I’m sure I may have and brushed it off. The pain is a burning achy pain, I wouldn’t say I have many spasms. It’s more of sharps pains?? BUT my arms and legs and always cold and my lips turn blue from time to time especially after the shower. Since you mentioned that, I’ve also noticed some webbing on my skin that had blue patches, I’ll post it here, could that also be spine related like you said? Would going to a chiropractor help at all while I wait for an appointment? I’d love to go to Mayo, I’m too far away…

Jump to this post

@seaann There is a Mayo campus in Phoenix if that helps. It's actually easy to travel to Mayo as you can fly to Rochester, and the hotels have shuttles to the Clinic and hospitals. Because they are very efficient, it just takes a few days usually to get all the appointments finished and you can be a "checker" to wait to get them done early before your scheduled times. They recommend giving yourself 5 days. They have many more testers and providers than most medical centers, so there is a lot of staff to serve you and can often schedule same day appointments for you. It was a 5 hour drive for me and so worth it. I saw 5 local spine surgeons who got it wrong and wouldn't help me. I wish I had gone to Mayo first. During that time, my arm and shoulder muscle was wasting away and I lost about half. It is coming back since my spine surgery, but that is a slow process. If someone had offered surgery to me a few years ago, that would not have happened. I had surgery at Mayo 2 years ago. There wasn't anything that compared to Mayo with the quality and efficiency of care anywhere else, and you probably won't understand how good that is unless you go there. Mayo does put the patient first and the specialists consult each other. You are having some symptoms that could be serious, so you have to ask yourself if it might be worth traveling to hopefully get an answer sooner. I would not see a chiropractor. You don't know if you have any spine issues, and they can injure you by moving something abruptly. You can look for a good neurologist at a medical teaching hospital that treats spine problems. I would start there, if you can't go to Mayo. I had blotchy coloring too like that in my hands because of TOS, and my legs, and yes from nerve compression that could be from the spine or outside of it. I would also get patches of goose bumps on my legs for no reason. I do have a bulging lumbar disc and it cracks on rotation, so I think it shifts a bit and maybe that was it. I you are thinking about Mayo, contact them because it might take a while to get in. You wouldn't be obligated, and you could change your mind. You don't pay until you are a patient and have an appointment. Get copies of your medical records so you can use them to get accepted. Lips turning blue does not sound good. Does your blood pressure drop when you stand up? Your doctor should be checking that. If you're cold all the time, you might have low thyroid function. Sharp burning pains sound like nerve compression, so a neurologist would be the one to see. I had a whiplash 20 years ago and thought I was OK, but in aging, those little cracks that happen to a disc during an accident start to open up then the disc dries out with aging, and eventually the disc ruptured, then bone spurs grew. You might have an injury that you don't realize is there. An MRI would tell you and a neurologist would likely order it. There are also vitamin deficiencies that can cause tingling, but my hunch is you have nerve compression somewhere.

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