I've seen news all over lately about a study showing those of us with fibromyalgia have certain neurological symptoms -- namely, poor balance, weakness and tingling in the arms, and light sensitivity. Really? They needed a study to figure that out? Come on, folks. These are things we've been telling you about since the days of fibrositis.
OK, yes; I do see the need for researchers to officially document these kinds of differences, but come on! These things have been on symptoms lists forever. Look at the results of my poll from a year ago, about clumsiness. A full 80% of answers were "Yes!" I know that's not scientific, but come on. How is it that we all know these things when researchers apparently don't? Have they ever taken a patient history?
Sorry for the rant, but I have to say I'm also rather annoyed with all of the fibromyalgia blogs and newsletters who are presenting this research as if it's some shocking new revelation. It's great to get information out there that could help sway opinions, but I can't imagine these three symptoms are going to convince any skeptics. We've had far better evidence of neurological involvement over the past several years, and more and more we're being referred to and treated by neurologists. Our FDA-approved medications all alter brain chemistry.
We have studies showing or suggesting:
- Neurotransmitter dysregulation
- Central nervous system sensitization
- Autonomic nervous system dysfunction
- Pain amplification in the brain and nerves
- Cognitive dysfunction
- Sensory symptoms
- And abnormal cranial blood flow.
All of those things point a big, flashing arrow at NEUROLOGICAL.
So forgive me if I can't get all excited about these "new" findings. I guess I'd rather have researchers looking into things that really are new.
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Thank you for your blog topic. What a novel approach: a lucid, reasonable person who has an understanding of FMS advancing a glaringly obvious question.
A rheumatologist would refer a MS or Parkinson patient out because their specialized care manifests from dysfunction of the central nervous system. If managing the extensively complex effects of the dysfunction are beyond the parameters of the rheuamatology speciality for a set/sets of patient population(s), then why would the medical community refuse to collectively call for the uniform treatment of fibromites by neurologists?
So with their skewed logic, if among my fibro symptoms my hands and feet go numb I’ll just go to a podiatrist for management of all aspects of fibro. I fail to understand how fibro is still classified as a musculoskeletal disorder.
What am I missing?
JoAnn,
I’m so with you on this! I believe the only reason it’s still classified that way is because it happened to be rheumatology that originally “claimed” the condition. It made sense then — no one knew the cause, and our pains were so similar to arthritis that the rheumatologists were the ones who first became familiar with it.
Your point is demonstrated by an experience I had — when I told my rheumy about some new nerve-related symptoms, she was really concerned and sent me to a neurologist. He nodded wisely & told me they were all part of fibromyalgia, and he said, “No one believes in these things except us neurologists ’cause we see them all the time.”
You’re exactly right — it makes no sense at all!
Amen, amen, amen!
I’m in the UK and have been discharged from my rheumatologist’s care – to my GP where pretty much every illness or symptom I go to them for is blamed on fibromyalgia. We’re still behind, despite all these studies.
But the evidence is there, and may they were right – it is ‘all in our heads’ just not the way some of them seem to think it is.
They need to be spending less money on confirming what we already know and more on sorting out long term pain management or *gasp* a cure.
It’s dire when you see a friend with terminal cancer and think ‘At least they’re getting something for the pain.’ Or worse still, ‘At least there’s going to be an end for them and it’s not going to take 60 years.’
Ladies I know each of you understand how important it is when we fibromites stumble upon someoneone who not only has a medical insight of the inter-relational processes at work but by the thoughts woven the person gains instant credibility. Their clarity slices through the fibrofog, pain, stiffness & exhaustion & one feels immediately bonded I would assume similarly to a crime victim as they their 911 operator & hero.
The first voice of hope amid the trauma & fear. That was my “shock & awe” moment when for the first time I learned of Adrienne Dellwo.
While on Twitter I was reading through the pitiful desperation of so many that had last glimpsed their bottom line in their rear view mirror with no expectation of a return trip. I saw Adrienne’s tweet about her blog’s topic. Even though I was convinced it was my irreverent psyche that had created a visual hallucination offering me an oasis I started reading Adrienne’s blog. Eureka!
She wasn’t trying to sell me sea weed, a supplement, breakfast drink, a special broom, or a service along with her vacant theories about why & how everyone has fibro & with (luckily for me) their assistance it can be delivered to my door in 2 days and I’ll be fibro free in 7. Ok, maybe 8.
Adrienne was soliciting a priceless commodity. The truth. We must hold onto one another like our lives depend upon it. The quality of our lives do.
God Bless. Adrienne thank you; Adrienne & Ilene I hope this finds you on the good side of the 0-10 pain scale & I too know you understand in conclusion: I’m exhausted, got two hours of sleep last night so I will see now if Mr. Sandman’s sleepy time caravan will stop at my house so I’ll take a nap…I pray.
Ladies my Twitter address is: http://twitter.com/MissIrreverence so we will tweet at you later!
(({Hugs}))
JoAnn,
Thank you so much for all your kind words! Isn’t it wonderful that About.com gives us a place where we can get information that’s not based on sales or self-promotion? I know in the early days of my fibro I learned a lot from the former Guide, and I’m delighted that I can pay that forward.
I sent a “follow” request to you on Twitter, so hopefully we can chat there!
you are awesome!!! that is so true. I was changed from a rheumotologist to a neurologist because of burning in my arms ,feet , face -well alot of places. They had more insight into fibromyalgia treatments that worked in my opinion. I do have mild neuropathy in my feet .