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Frustration with Health Issues

Jack_in_a_blanket

640d

I just got a bunch of blood work back and nothing! I had such high hopes for Lyme disease but no... not even any inflammation. and yet I e spent the whole weekend with no energy lying in bed and my joint pain is spreading to my jaw now. And I like to talk... a lot... such frustration

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11

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Joint pain

Chronic Generalized pain

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    • mysterygirl

      634d

      Hi JIAB. I'm sorry. I don't get notifications that anyone has commented unlessi go on the sure and I don't know who the comment s for. There are 20 of them, so please forgive me for not replying. I share my experiences in the hope that others have had similar ones but haven't shared them. Thank you your kindness. My story with being undiagnosed, is very similar to others and I hope that I've opened a dialogue for people who are tired of talking about feeling badly, to ppl who aren't feeling sick. Unless they're very lucky, most ppl like us, wind up alone b/c we can't keep up with others' normal pace and it is hard ,especially when you're older to find ppl who want add you to their established one. If you're young and have any "real"friends, be sure to keep that connection. Once it's gone, it's hard to get back. I moved around the country a lot and didn't really understand that I would wind up alone, unless I want to stay in a marriage where my husband avoids me. I am not looking for you to feel bad or pity. I'm just sharing some wisdom that I wish I had when I was young had good friends. At 66, you can only go where ppl are doing an activity. They don't invite into their lives. At least, in my experience. The world has changed with internet, in way I don't understand, but I'm grateful fotmr it,as it s whete 99% of my contact with others, comes from. I'm gonna go to your name and see what's going on with you b/c I wanna know. I do get notifications of pm , so just feel free to write me there, I'd you need to vent or have any questions. I like to writeas you can tell, so it's no bother. Or I'll just check in on the website, to see if you've posted. I'm OK and I hope that you are having a good day. I mean that, b/c a good for some of us isn't the norm💟

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    • mysterygirl

      634d

      Hi JIAB. I'm sorry. I don't get notifications that anyone has commented unlessi go on the sure and I don't know who the comment s for. There are 20 of them, so please forgive me for not replying. I share my experiences in the hope that others have had similar ones but haven't shared them. Thank you your kindness. My story with being undiagnosed, is very similar to others and I hope that I've opened a dialogue for people who are tired of talking about feeling badly, to ppl who aren't feeling sick. Unless they're very lucky, most ppl like us, wind up alone b/c we can't keep up with others' normal pace and it is hard ,especially when you're older to find ppl who want add you to their established one. If you're young and have any "real"friends, be sure to keep that connection. Once it's gone, it's hard to get back. I moved around the country a lot and didn't really understand that I would wind up alone, unless I want to stay in a marriage where my husband avoids me. I am not looking for you to feel bad or pity. I'm just sharing some wisdom that I wish I had when I was young had good friends. At 66, you can only go where ppl are doing an activity. They don't invite into their lives. At least, in my experience. The world has changed with internet, in way I don't understand, but I'm grateful fotmr it,as it s whete 99% of my contact with others, comes from. I'm gonna go to your name and see what's going on with you b/c I wanna know. I do get notifications of pm , so just feel free to write me there, I'd you need to vent or have any questions. I like to writeas you can tell, so it's no bother. Or I'll just check in on the website, to see if you've posted. I'm OK and I hope that you are having a good day. I mean that, b/c a good for some of us isn't the norm💟

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    • mysterygirl

      640d

      Lymr disease test is complex & new or untrained techs, don't know how to do it correctly. Try a diffetent lab.Many false negs. Look it up. I had a friend who was neg twice but finally someone who was trained properly on how to do the test, got the positive result. You have to do a lot of your own research and then you have to push or keep going til you find a doc willing to getyou tests or specialists. You will fall through the cracks. In the US, healthcare is forbprofit, not to help the sick, esp the chronically ill. Don't let em push you around. I let a doc intimidate me into getting a shot in my hip for"bursitis". He damaged a nerve in my leg and I have chronic pain up & fien my leg that he caused.. He did it, just to bill Medicare b/c there was really nothing wrong there except normal aging process. He was the meanest doctor I've ever been to and I've met some real assholes. One told me to come in for my fibromyalgia and when I got in his room he closed my chart and said we don't treat fibromyalgia and then billed Meficare for a 2 hr visit. Never touched or talked to me. As a chronically ill petson, I wish that I was a citizen of any other country. I could either afford the healthcare or it would be free.

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      • Jack_in_a_blanket

        638d

        @mysterygirl I'm so sorry you've had such bad experiences! That's really awful:(

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    • mysterygirl

      640d

      Did they test you for rheumatoid & psoriatic arthritis? Have you had a DNA swab test done to look for mutations? Insurance generally pays for it. I don't know else could be causing it, unless its genetic. Especially if you're young. If your older arthritis can be crippling.

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      • Jack_in_a_blanket

        640d

        @mysterygirl she did test for RA and the blood test was negative. No DNA test. I'm 27 but have had joint pain and other issues since elementary school. I also used to faint a lot as a kid so that's a mystery lol

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    • Sarahp

      640d

      I’m sorry. If it is helpful at all I do not have any inflammation markers in my blood but I definitely have rheumatoid arthritis. They had to run an MRI on me to see it. It’s common for chronic pain not to show up on a blood marker and a good doctor should know that.

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      • Jack_in_a_blanket

        640d

        @Sarahp that's good to know sometimes it takes an MRI

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    • goblin49

      640d

      I totally get this; I have been the same way for so long and it's frustrating because most doctors just stop looking for answers without "evidence". I know it takes a lot of effort, but you are your best advocate and doing lots of research will help you out! Hope you are able to eventually find some answers 💕

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    • Amarand26

      640d

      I know how you feel. I have been having so many tests lately and all have come back normal. They are just diagnosing me with fibromyalgia because they can’t figure out anything else. I feel like my doctors are just giving up.

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      • mysterygirl

        640d

        @Amarand26 oh, you got the "fibromyalgia " f**koff. I've gotten it for 20 yrs. I don't have any fibromyalgia symptoms, even my pain is different, but they don't know what's wrong. I have some new symptoms, so I'm hoping that one of them will get the docs looking in a different direction.

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    • AnxiouslyUnique

      640d

      😥my heart hurts for you! I've been through so many different tests and blood work ups and even ER and urgent care visits with my symptoms. And I've gotten nothing in results. Most of the time my symptoms come out of nowhere and my anxiety makes it 10xs worse. Sending you positive vibes 🙏🙌❤️

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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