Is this 30?

Posted by latrench @latrench, Jan 30, 2020

I woke in the middle of the night, unsure of where I was—mostly I blamed the odd yellow shades I had trouble recognizing yet, only a few days into a family vacation in Sicily. I sat up, uncomfortably blinking my eyes when I realized my arms seemed fused to my chest. I moved to stretch them straight and the stiffness made it difficult. At 29, I’d never had a feeling like that. I thought maybe it was the travel or the twin size mattress I’d been managing. Explaining it away to myself, I went back to sleep.

Standing in the kitchen of my friend’s home, a few weeks later, I felt sore. Fresh from the gym, sore. I squatted a few times to gauge the feeling…confused as a I hadn’t worked out in two weeks. It felt like I’d pushed the limit doing leg day. “Why am I so sore?” I said aloud. With no explanation, I continued chatting with my friend.

At my office about a week later, I felt like I’d been hit with a tranquilizer dart. All day I struggled to keep my eyes open. My body felt weighted down and exhausted. I went home…slept for two days and awoke with hands and wrists double their size. My ankles and feet followed the next day. I was so swollen that my sandals bit into my feet, jeans cut into my ankles and my rings turned my fingers purple.

Then came the pain.

For several months, I had trouble getting out of bed. My own moans would wake me in the middle of the night after I stretched wrong or attempted to roll in my sleep. If someone or something tapped my hand in the direction it bent, I would audibly yell. It hurt in my wrists, knees and calves before moving to my fingers. The littlest movement would exhaust me. Even chewing became too much effort at times. I could see the muscles in my jaw were swollen too. I had trouble getting dressed in the morning or carrying groceries into the house. My brain became foggy and I had trouble focusing, recalling names and finishing sentences.

At first the nurse practitioner thought I had B19 Parvovirus. It was later concluded by another doctor that I had at once point had parvo, the test had picked it up in my system. He stated that if I had had the Parvovirus, it should have gone away by month three at the longest.

I’ve been tested for lupus, Lyme disease, valley fever, STD’s (no, thank you), rheumatoid arthritis and countless other auto-immune diseases. My CBC levels were tested and X-rays were taken. Everything other than low Vitamin D and slightly elevated inflammatory markers showed out of the ordinary in the results.

I turned 30, and it felt like my body fell apart. The hiker, camper and active person I once was disappeared. Now, I struggle to open a bottle of water.

I was prescribed steroids and I had slight relief for a few weeks. The edema in my legs had abated. My energy levels returned. The swelling in my wrists went away only to return to my fingers once the steroids wore off.

As of now, I am stiff all the time. My fingers are swollen every morning. They are weak and in pain every day. I am lucky if I can close a fist and I’m tired quite often or in pain.

Another call from the doctor this morning left me with an update—all of my new tests came back normal.

If anyone has had similar issues that haven’t been diagnosed with the diseases I’ve mentioned—please reach out. I have no idea what is wrong with me and I refuse to believe that this is just what happens after 30.

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

I think you might considered seeing someone at the Mayo Clinic..,they have locations in Florida, Arizona, and Minnesota. You might have an auto-immune disease. You do not need a referral because it is possible to self-refer. I hope you find answers soon.

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I have a family member, woman, who is in her late 30's and was diagnosed with Ehlers-Danlos Syndrome. It is a tissue disease that could be similar to yours. I believe a sports medicine physician helped her. She is going to a personal trainer for PT and is being helped this way. I am not sure if she had the swelling, like you describe, but her muscles were weak and her joints. You might Google it to see if it sounds like your symptoms. Good luck and keep being proactive. Keep researching and finding doctors who will listen and help you. My family member had to keep looking until she found the right dr. This may not be what you have but you do have something, and you will get the right answer if you don't give up!

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@bernese53

I think you might considered seeing someone at the Mayo Clinic..,they have locations in Florida, Arizona, and Minnesota. You might have an auto-immune disease. You do not need a referral because it is possible to self-refer. I hope you find answers soon.

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Thank you! I'm planning on visiting the Phoenix clinic!

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@sunknee

I have a family member, woman, who is in her late 30's and was diagnosed with Ehlers-Danlos Syndrome. It is a tissue disease that could be similar to yours. I believe a sports medicine physician helped her. She is going to a personal trainer for PT and is being helped this way. I am not sure if she had the swelling, like you describe, but her muscles were weak and her joints. You might Google it to see if it sounds like your symptoms. Good luck and keep being proactive. Keep researching and finding doctors who will listen and help you. My family member had to keep looking until she found the right dr. This may not be what you have but you do have something, and you will get the right answer if you don't give up!

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Thank you for the response! I'll check it out and I'm sorry to hear about your family member. I appreciate the kind words!

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@latrench

Thank you! I'm planning on visiting the Phoenix clinic!

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I am glad to hear that. Keep us posted.

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@latrench Welcome to our caring ,helpful community Since you haven't received any diagnosis I would suggest go to a Mayo Clinic they can find the problem other places can't.Or if travel restrands are a problem find a university hospital I hope you will come back and let us know ,we care

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Good Luck! I sincerely hope you find answers because that’s not 30!

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@lioness

@latrench Welcome to our caring ,helpful community Since you haven't received any diagnosis I would suggest go to a Mayo Clinic they can find the problem other places can't.Or if travel restrands are a problem find a university hospital I hope you will come back and let us know ,we care

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I appreciate you reaching out! I definitely will!

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@latrench

I appreciate you reaching out! I definitely will!

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Haha thank you! I knew it couldn't be!

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