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Parus
@parus

Posts: 1291
Joined: Jul 14, 2017

Autoimmune Diseases...Is There Help Or Hope?

Posted by @parus, Jul 18, 2017

Just curious as I feel so weak and alone-sounding pathetic and this is not whom I truly am…

REPLY

Hello @parus, a lot of us can relate to what you are feeling at one time or another. There is always hope but help can sometimes be eluding and you really have to be your own advocate, ask questions and keep pushing your doctors for answers. Can you share what type of autoimmune health issue you are dealing with?

One step at a time, one day at a time..hoping you find your answers and treatment.

John

Fibromyalgia and Lyme…Seems fibro has become a garbage bin when doctors can come up w/ nothing better…will admit not in the best frame of mind at this point in time…I will move on as soon as I chew my cud for a bit…

@parus

Fibromyalgia and Lyme…Seems fibro has become a garbage bin when doctors can come up w/ nothing better…will admit not in the best frame of mind at this point in time…I will move on as soon as I chew my cud for a bit…

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I have a niece with Lyme disease. It took her doctors over 2 years before it was diagnosed as Lyme disease. I’ve read that a lot of it is due to no standardized testing to identify the disease but that may be over simplifying it a bit. Once they found out what she had, they were able to treat her and she’s doing great now. Here are a couple of links that may interest you:

Fibromyalgia, Small Fiber Neuropathy and Eye-Opening Developments in Pain Research: An FM and Pain Researcher Talks – Apr 13, 2015 – https://www.healthrising.org/blog/2015/04/13/fibromyalgia-small-fiber-neuropathy-and-eye-opening-developments-in-pain-research-an-fm-and-pain-researcher-talks/

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome –
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose?utm_source=tedcomshare&utm_medium=email&utm_campaign=tedspread

John

@parus

Fibromyalgia and Lyme…Seems fibro has become a garbage bin when doctors can come up w/ nothing better…will admit not in the best frame of mind at this point in time…I will move on as soon as I chew my cud for a bit…

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@parus I appreciate your sharing with us a little more about your health situation. We can all become very inward when we have health problems that don’t seem easily diagnosed or treated by the medical profession. The process of chipping away at the walls that we have put up around us can be a slow process and it sometimes takes us all time to process new ideas and come up with solutions. For some people, problem solving is very easy and for others of us it takes time. I appreciate your admitting that you need to “chew my cud for a bit” this is probably the best way for you to process all that is going on right now. As you process and think about your health problems, you will undoubtedly come up with some tools for dealing with it – we all tend to do that, but in our own time. Teresa

@parus

Fibromyalgia and Lyme…Seems fibro has become a garbage bin when doctors can come up w/ nothing better…will admit not in the best frame of mind at this point in time…I will move on as soon as I chew my cud for a bit…

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I was diagnosed with Fibromyalgia in 1992. I have called it the trash can disease for most of those years.

Must admit I feel the same…also have days I feel like Oscar the Grouch. An attempt at some comic relief as I can see myself peeking out from under the lid from time to time.

Truly nothing fun about this illness called Fibromyalgia. Diagnosed 2000. All I know is I went from active to zilch quickly. What we experience needs a name.

@parus

Fibromyalgia and Lyme…Seems fibro has become a garbage bin when doctors can come up w/ nothing better…will admit not in the best frame of mind at this point in time…I will move on as soon as I chew my cud for a bit…

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Was diagnosed with Fibro forty years ago. I have been told that there is no cure nor can anything be done for it. I have been in numerous groups to determine if anything can help. I must say, at this point there is nothing I can do to make the pain go away, I am 68 years old and live in East Texas. Now my Rumo Dr has informed me that I never had Fibro and with muscle biopsy I now have inclusive body myositis. Same same. Nothing can be done nor can anything make the pain better. Prednisone is the only help I can get but the side effects are very damaging.

@parus

Fibromyalgia and Lyme…Seems fibro has become a garbage bin when doctors can come up w/ nothing better…will admit not in the best frame of mind at this point in time…I will move on as soon as I chew my cud for a bit…

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Hello @brentdan67, welcome to Mayo Connect. We are glad you found us. Connect is a good place to find others with similar health problems, ask questions and hopefully find something that works for you. @kanaazpereira shared some information that may provide some answers for you. You can view her post here:
https://connect.mayoclinic.org/comment/61379/bookmark/?ajax_hook=action&_wpnonce=c9272a7274

It is in the Autoimmune Diseases / Inclusion body myositis discussion which you may want to join:
https://connect.mayoclinic.org/discussion/inclusion-body-myostisi/bookmark/?ajax_hook=action&_wpnonce=c9272a7274

John

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