Does this sound like Fibro?

Wendy1994

New member
Joined
Apr 15, 2022
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2
Hello everyone. I just joined and have read many of the threads regarding diagnosis. I too am struggling and do not yet have any diagnosis. I have been experiencing symptoms for well over a year and a half now and have been tested for many conditions (RA, Lupus, Vitamin and mineral deficiencies, Celiac, Brain MRI, EMG on both legs, some toxins, typical blood work you would get with your physical, etc.). I did have low vitamin D and the supplement I took resolved most all of my joint pain. I also had an ever so slightly elevated IgA (325 and the high end of the range was 310) but the doctor did not seem concerned. I even had colonoscopy and endoscopy that with normal findings. My doctor has suggested that I give up gluten as that may be the culprit.

My symptoms started with tingling in the feet that began to spread and/or move to the hands and arms. The burning came next and it too moves around the body (hands, arms, shoulders, feet, ankles, back, chest). The symptoms come and go, some days are better than others. Sometimes the burning in my upper trunk and arms will wake me up at night. These symptoms can last anywhere from minutes to an hour or so and then go away. They can be gone for minutes, hours, or days. I even had a span of months with no symptoms and then they came back again. My tongue even has a burning sensation. When this is all happening my sleep is disturbed and I tend to have gastrointestinal issues as well.

I always thought fibromyalgia was more about pain and therefore it never occurred to me that I could have this. My tingling/burning is not as much painful as it is emotionally difficult. Even when my burning is not easily felt, it is always there in the background just simmering. My anxiety is high, I am feeling depressed and lost, and really just want to know what is going on.

Any feedback or thoughts would be so greatly appreciated.
 

JayCS

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Sep 5, 2020
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1,956
Reason
DX FIBRO
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02/2020
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GE
Hi Wendy, and welcome! 👋

You seem to be in good hands as regards testing and also an idea like seeing what happens if you stop gluten for a few months.
Agreed that it doesn't directly sound like fibro if your symptoms aren't directly pain. But praps these are the warning signs.
And they don't sound "wrong" for fibro.

Burning sensations alone for me are pointers in the direction either nerves (nerve-supps like B12 and magnesium), general inflammation of the invisible kind (anti-inflammatory-supps can help), or what I'm thinking is an allergic type reaction triggered by meds, food etc. My burning skin and tongue comes from histaminey MCAS-flares triggered by CoV-jabs.
As you say it's emotionally difficult and your anxiety etc. is high, it sounds to me as if the most important thing is taking care of yourself emotionally, which then will help you self-care physically. For mental stuff, supps can help, but also pain management (that should help you all the same), mindfulness, various kinds of relaxation, counselling like CBT, ACT ('radical acceptance').

Whilst we all sort of "want to know what is going on" we may well have to just cope with the fact that that's not going to be (even if we get the dx of fibro or MCAS) and it's then more important to focus on finding out what we can do about it, e.g. can any of the 30-50 supps, reducing histamine/an antihistamine or cold water help.

For all of this sunkacola's ▶️Big Advice Post is always a great starting point.
 

Wendy1994

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Joined
Apr 15, 2022
Messages
2
JayCS,

Thanks for this info, I completely get what you are saying and know fibromyalgia might be a stretch. I have a doctors appointment in a month and will see what next steps to take. In the meantime, I have gone to gluten free and will see if that helps.

In reading your response, what is CoV? 😊 I am not up on all of the lingo! Ha.

I saw another thread had some thoughts on small fiber sensory neuropathy, maybe that might be something to rule out as well?

Thanks!!
 

caramani1967

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May 23, 2022
Messages
9
Hello Wendy, just wanted to follow up to see how your doctor visit went and if they found anything and are u doing better?
 
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