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I Have Seen Rheumatologists Before But The Meds I Take Do Not Help Much, Has Anybody Been Treated By A Neurologist? If So, Has It Helped? T

A MyFibroTeam Member asked a question 💭
Cresco, PA
July 6, 2024
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A MyFibroTeam Member

Our brain not reading the pain etc signals correctly or vice versa. But it's probably a little bit of all things.

Like kitchen sink soup.

Little bit of this
Little bit of that

Everything but the kitchen sink , let it simmer but vary fhe Temps from basically freezing to boiling and stir it at all hours lol

Answer to your Q
Some fair ok with their primary, other their Rhum, some nero, some holistic , some accupunctre and massage, some no drugs some with drugs. Some a combo of drugs. Supplements and diet sometimes help several on here and others say it's done nothing

Sometimes your doc just sucks and you should stay with that kind but find a netter one and other times it's looking like you need a doc in all fields , like the avengers, working together. But finding 1 good doc these days are hard let alone a team.

Hard to tell
Cuz a lot of us seem to also have at least 1 if not more other health problems, as well.

And fibromyalgia is not studied by most and kinda a "orphan disease" to boot.

I do hope you find some kind of relief

Top things I've seen from ppl on here that seem to help is magnesium and all the B vitamins supplements, exercising or very least even the mildest of stretching, changes in diet, um- my brain is turning foggy but I'll come bsck when I can find my notebook of things I've seen ppl talk most about helping them lol

Whatever combo you find I hope it brings you long term relief . And that you share it lol

July 7, 2024
A MyFibroTeam Member

My neurologist just a emg nerve condition test recently and it was normal , he said to take more Gabapentin, well that med does nothing for me even after taking more , he said there’s nothing he can do for me other than told me to seek physical therapy and Counciling , smh 🤦‍♂️ 🤷🏻‍♂️ I’m so tired and exhausted during the day and wide awake at night as well .

July 10, 2024
A MyFibroTeam Member

2nd downside to most medications like ones to control any systems or organs or our brains, they can take up to 2-3 or more months before they are fully kicked in and we find out if they do really work or time to switch up. Like most things, waiting is hard
Especially if we've no idea if it'll help in the long run or if we're even at the correct dosage for any of any med.

3rd medicine my doc had me trying is the only medicine (far as I know) that was made specifically for Fibromyalgia. And I'm surprised I never saw anyone mention it on here.

It's called
SAVELLA

It's a medicine you slowly build up. It comes in a blister pack first and it's like the kind of med, first few days you take 1, next several days 2, next several days 3. Just to slowly up the dosage as you go.
Then 2nd month is the usual script bottle.

I'm not a pharmaceutical rep or anything. It actually didn't do much for me in the end. But I was already on other medications and have a myriad of health problems so maybe why it didn't do anything for me.

His next recommendations was aqua therapy. I hated it. Caused me so much agony but I think my physical rherapists was accounting for all my medical conditions and I've seen quite a few on here say it helps.

Then he said I was basically shit out of luck but he has patients who got relief with massages.

Next time I saw him he put me on dicofenac. 1 pill 2 times a day. I think it's sorta like Aleve where you should take it if achey but maybe not if you have immediate pain where advil or tylnol target things faster.

And he gave me an muscle relaxer to take at bedtime. It's called Flexiril. That one helps but I'm unsure if I'd say it helps my fibromyalgia symptoms and probably more my spinal ones etc

July 9, 2024
A MyFibroTeam Member

I don't think I was given hydroxy- med one before.

Hmm

First idea when I first saw my rhum was lyrica or Gabapentin. But I was already on it for a long ass time by my pain docs for nerve damage pain.

Forget the 2nd drug off top of my head

The problem with lyrica and Cymbalta and antidepressants and those sorts is its used off label for Fibromyalgia. (And other things)
Those meds were esched designed for other things but as it stayed on the market longer they began to notice it was sometimes helpful for other medical conditions.

So it often gets prescribed for things it wasn't specifically designed for in hopes it may help.

Some people have gotten relief using them for fibro , some not. Like most things there's always so many variables. Maybe they do better for mild Fibromyalgia patients. Maybe they don't work for some because of other health issues. And on and on.

The qst downside to most meds on the market for anything, is side effects. Most meds all have the usual list of side effects from may cause upset stomach, drowsiness etc to harder side effects like allergic reactions and on and on. Or may cause symptoms to worsen like how antidepressants come with a warning it may cause suicidal thoughts.
Some symptoms dissipate over time, other times they are just unbearable.

July 9, 2024
Hi, this is just a check-in, based on a phrase you mentioned. If you — or anyone else who sees this — is thinking about self-harm, we want to say that you are an important part of this community. No part of this is easy, but there is support that can help. Read more >
A MyFibroTeam Member

Cymbalta has done nothing for my depression or my fibromyalgia. I was put on it by a psychiatrist for depression. It wasn't until last year that I discovered it can also be prescribed for fibromyalgia, which sadly didn't help the entire time I was on it. Gabapentin just made me extremely sick and caused horrible stomach pain.

At this point, I feel as though my body is medication resistant. None of the medications for my fibromyalgia, depression, anxiety, sleeping disorders, and migraines are making me feel better they are simply making me feel worse with side effects.

July 8, 2024

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