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Odd Sensation
A MyFibroTeam Member asked a question 💭

Does anyone feel pain differently than what is generally considered to be "pain"?

For example, I know my muscles and nerves are irritated, though when it hits badly, it feels like restless leg syndrome, albeit through my whole body. (Even eyes and other odd places you wouldn't think you could feel.)

Thank you.

posted November 4, 2019 (edited)
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A MyFibroTeam Member

Yup I have same symptoms. I have the tingling/irritated/burning and soreness in muscles and nerves, along w memory blocks and fatigue. (I also have no tear production and low saliva production. During bad flares my eyes get really red and I have a very dry throat and insatiable thirst. And I have urethra pain ( IC) and vaginal pain (forgot term for it).

Much of my discomfort also comes from the inflammation that fibro symptoms can bring on.

Several things have helped me.
1) Intenzymes Forte reduces inflammation for me (it’s a natural supplement that you can only buy through doctor or licensed healthcare provider). I take daily.
2) Going Glutten free and avoiding grains and dairy
3) Coq10 has given me more energy and clarity of mind (pls talk to your neurologist about right dosage for you).
4) Taking Allegra when I feel the tingling and pain coming on really stops it in its track. I also feel like I breath better.
5) Systane eye drops (w out preservatives) keeps my eyes lubricated
6) My urologist prescribed a natural supplement for IC -freeze dried aloe Vera capsules by Desert Harvest, (and the aloe vera gel they sell). That helps a lot too, but I take as needed for IC.

It took me a long time to find things that work for me (bc I’m very sensitive to drugs, supplements, and herbs), and visits to many doctors over the past decade. While these have helped me, everyone needs to evaluate their own situation, talk to their specialists and see what works best for them.

Unfortunately nothing removes the fatigue but rest. 😉

Forgot to mention the last flare I had in October was one of my worst and triggered new fibro symptoms for me. Mega migraine, dizziness, nausea and vertigo. I was bed and home bound for a month.

My ENT is going to do more vestibular testing.
I kind of don’t understand if it’s fibro related, why I need to do more testing. Perhaps it can also be middle ear related?
I guess I’ll have to see how tests go, then ask my drs this question.

When I share, I like to share :)
Hugs, peace and strength to all. ❤️

posted November 4, 2019
A MyFibroTeam Member

Something that may be comforting for those suffering from dizziness-I finally found a lot of answers in pain management doctors. One explained to me the connection between muscle tension in the neck and proprioceptive receptors. It's not a cure but for some, may take that "scary" edge off of it. Essentially, neck tension causes pain, pain causes misfiring receptors, receptors send faulty messages to the vestibular system. Annoying but not deadly. The more we know, the more we can work towards a solution. (That said, this is one explanation, and don't take this as medical advice.)

posted November 4, 2019
A MyFibroTeam Member

Man this fibro pain effects everyone so differently. My pain feels like muscle cramps forming and sometimes my ears get so clogged. My eyes, face hurts to even talk. No joke. Feel better. Hugs and Prayers

posted November 4, 2019
A MyFibroTeam Member

Also look below at “other questions to explore.” Others have described it as a prickly sensation or weird foot and leg sensations.
BTW welcome, new member, we all learn from one another and support one another :)

posted November 12, 2019
A MyFibroTeam Member

Yes! Yes! For me that’s pretty typical. A general malaise w tingling (like fizzing) pain all over my body. The restless leg symptoms are annoying especially at night. Putting my legs up in bed usually helps w that. During day, Allegra relieves the tingling and some of the malaise, (I only take as needed), coq10 gives me energy, and Intenzyme helps w inflammation.

Dr wants to put me on gabapentin, but for now, I prefer PT and natural supplements to prescription meds. (I’m very sensitive to chemicals/drugs and some herbs).

posted November 12, 2019

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