Recently diagnosed

hayleyduboyoo

New member
Joined
Aug 14, 2022
Messages
1
Hi everyone,

I’ve recently been diagnosed with fibro. It started about a year ago with extreme fatigue and sinus/face nerve pain and a few months ago I started experiencing numbness and tingling down my face, arms and legs. I couldn’t walk with the loss of sensation and tremors so went private with a neurologist and MRI came back clear so not MS!

My gp suspected fibro at the first point of contact, once I got a clear MRI and blood works I was told it was fibromyalgia. Is it common not to go to rheumatology to rule out anything there?

Anyway my mobility and tingling is better, been replaced by burning nerve pain all over and my hands are on fire! Seems like carpal tunnel but I’m sure it’s fibro too since it mirrors so much. I’ve started gabapentin, naproxen, take cocodamol for the pain too.

Things I’m going to start looking into to help:
Anti-inflammatory diet
Saunas
Acupuncture/reflexology
Swimming/yoga
Supplements

Is there anything else anyone can advise that might help me? For an active, travel obsessed, full time worker.. the last few months has been very different. Hoping to find a new normal soon - not how I thought the first year of my 30s would go!

Thanks!
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
493
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Hi and Welcome!
I am fairly new here as well, but some great folks here; understanding, empathetic, and all around helpful.

Your GP can order the same blood tests that a Rheumatologist would to rule out other things like RA, Lupus, etc, so one does not necessarily need to go to one. Kinda of depends on the GP tho, a lot dont want to mess with it, so they make referrals.

Sunkacola has some great advice & things to try in a big post here

Hope you can find some relief. Just remember, try not to overdo, but do try to stay active.. even a little bit helps
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,319
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
I also recommend the advice post that cookiebaker suggested. I wrote it, and if you have any questions about it, feel free to ask me here or in a PM.

Definitely try all the things you mention. But only try one at a time or you won't know which one is helping.
Anti-inflammatory diet will only help if you actually have inflammation, of course. You may not.
Saunas are good for getting relaxed but the effects won't last long. Nice to do, though!

Supplements.....be careful with that. If you start taking something without knowing if your body needs that or not, than you risk the possibility that you will be overloading your body with something it already has plenty of. Getting blood tests to determine your levels of the minerals and vitamins ahead of time is a good idea.

Don't fall for things advertised ad cures for Fibro or even that will help, if you find them online. There's no way to know what is really in those pills or powder and it may be nothing good but just cheap junk, nd could be even harmful to you. If you get a supplement, do so only after researching it, testing your own bod to be sure you need that, and then get it from a reputable shop or from a brand online that you can verify is a good brand.

Do accept advice from anyone but be aware that nothing works for everyone, and what made a huge difference for one may do nothing for another.

Yoga and swimming.......great idea, both!!
 

Carolyn Rhodes

Active member
Joined
Nov 27, 2019
Messages
48
Reason
DX FIBRO
Diagnosis
07/2017
Country
US
State
VA
Hi Haley,
I was diagnosed the same as you by my GP without Rheumatologist. I knew what I had since my Mom and sisters both have it...
My GP suggested the swimming and Yoga as well. Both are great but beware of over exerting because it could put you out of commission for a couple of days. Slow and steady works.
I take supplements such as Magnesium Fish Oil, Vit C and D3. Also, CBD capsule 25 mg with my doctors approval.
Welcome, this is a great forum with lots of nice peeps always willing to offer helpful advice.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi Haley! Lots of good suggestions already...
clear MRI and blood works I was told it was fibromyalgia. Is it common not to go to rheumatology to rule out anything there?
The ACR 2016 criteria stress we no longer have to rule anything else out for it to be fibromyalgia, but also that we still need to rule them out. That's to speed up diagnosis knowing that studies show that if these criteria fit it will likely turn out to be fibromyalgia (too).
As you've had blood works done, the question would be if these were comprehensive and encompassed rheumatological factors like CRP. It's likely, cos bloods aren't normally neurological. So it might be like @cookiebaker infers that they have been done. My 1st rheum. sent me to get ankylosing spondylitis checked via MRI, then disappointed sent me on to neuro and endocrine etc. I got almost everything done by specialists, that and orthopedists etc., so tallied >40 docs in my first year.
Anyway my mobility and tingling is better, been replaced by burning nerve pain all over and my hands are on fire!
That sounds severe and explains your 3 meds. But watch out for side effects from them, there are alternatives. And dunno what supps you've already considered, aside from the ones @Carolyn Rhodes has mentioned, but the B-vitamins, esp. B12, will have been recommended by your neurologist? If you research all of these like sunkacola's suggested, and dig a bit deeper, you'll find that there's the easy and the advanced version of all these supps - better and worse types, dosage, when to take etc..
Anti-inflammatory diet, Saunas, Acupuncture/reflexology, Swimming/yoga, Supplements.
Is there anything else anyone can advise that might help me?
There are "20"+ types of diet, 20+ types of physical treatment, incl. heat/cold therapy, that can be done to you, or you can apply yourself. If you think inflammation may be your biggest issue, there are another 10 supps that'd fit, but they also fit for many other of our problems.
As sunkacola's said it's about starting "low and slow", and as the ones you've listed have a certain evidence and fit to your problems you may not be needing more ideas yet.
Of the 5 big areas 1) mental 2) physical 3) diet 4) environment 5) pills, I'd start "one" of all you've suggested in each area. What you could add at the same time is 1) is grieving / acceptance / coping / tracking & analyzing / relaxing / pacing, and 4) sorting out and preventing environmental triggers outside and inside.
If there's one that I feel is missing most for nerve type problems it's one sunkacola recommends, electrotherapy, for instance a TENS unit (if you haven't got heart or seizures problems).
The one I'd go most careful on is sauna, as many of us have problems with heat, not (just) with the cold. But as anything it's a matter of pacing. For me 1 or 2x 8 minutes was OK, and max. But this is also the one with least evidence, aside from the very alternative method of reflexology. Short sharp cold, like cryotherapy actually has more evidence than sauna, since it improves inflammatory cytokines, a few studies say. Just aside from cold showering several times a night I'm thinking of trying whole body cryotherapy ('cold barrel') again, as that used to sometimes be very helpful for energy. I'm very lucky that it's in my own town, 10 cycle minutes away.
So reflexology: A weird one. But my cryotherapist & acupressurist did ear acupressure on me for a year, which is a form of reflexology. She did a great deal for my local pains, but I'm not sure if it was really the reflexological part. The most 'miraculous' treatments were 3 that activated breath, legs and I think it was temperature control, but that wasn't done on my ears it was directly on my body. And self-applied acupressure on my body is now one of my mainstays for all local pains or rather problems, as it even relieves of itching etc. I've even got a "miraculous" one there to calm panting immediately. Stopping going to her and having more motivation to develop my own exercises, stretches, acupressure, massage gadget etc. quickly resolved quite a few old things she hadn't had that much success with and also anything new. I think she and her treatments taught me a lot, but I'm much better off on my own now.
Anti-inflammatory diet: We don't actually think of it as anti-inflammatory, but the Mediterranean diet has a lot of medical evidence to help our general health, and actually has an anti-inflammatory component. We're not talking 'visible' inflammation here as in rheumatology / CRP, we're talking more cutting edge of deep down inflammation like cytokines & chemokines etc.
Acupuncture: Also has medical evidence for it (for fibromyalgia I mean all along). It harmed me, so if you realize after the first 3-4 times it is only hurting and not helping, stop. For many it does neither, but very good to try it. I've now found after 2 Western acupuncture stints, that Chinese acupuncture usually doesn't hurt me, despite thicker needles, and helps quite a lot.
Swimming/yoga etc.: Anything you like as long as you start low and slow, like @Carolyn Rhodes says, and that may mean for some activities a few seconds per exercise or a few minutes altogether.
For an active, travel obsessed, full time worker.. the last few months has been very different. Hoping to find a new normal soon - not how I thought the first year of my 30s would go!
Oh wow, I bet you're downplaying a lot here... I hope your new normal can still be "full time", and praps a bit above 50% of the physical activities you've been able to. I've had to divert my "full time" quite a bit, cos that went from 100% to 5-10% and then back up to max. 35% after about a year, and now 10-25% due to an additional condition. But then I've had quite a bit more of my life behind me, altho a great deal of it was a long hard painful slog that you've maybe been spared it.
That's the mental aspect, which if the fibro is severe may mean turning to a new life, new orientation, new mindset, new ways of contentment and happiness and then build up bits of your old life into it.
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
493
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
.....did ear acupressure on me for a year, which is a form of reflexology.

I prefer trigger point therapy myself, but everyone is different. the main thing is if it helps or not.

I've now found after 2 Western acupuncture stints, that Chinese acupuncture usually doesn't hurt me, despite thicker needles, and helps quite a lot.

here in the USA they call the Western version "Dry Needling" to separate it from the traditional Chinese Acupuncture. I have a friend with FM that gets the dry needling done.. she says while it hurts initially, she usually feels better after a day or so.
I think I would be more inclined to try the traditional version 1st...
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I prefer trigger point therapy myself, but everyone is different. the main thing is if it helps or not.
Oh, my osteopath before her used trigger pointing as well as the gentler version, Jones technique, and she used it too. I myself can do it for my clavicle too. But usually when I tried myself, even pre-fibro, my whole back was full of "trigger points" and it just made it worse, I could never find out a pattern.
here in the USA they call the Western version "Dry Needling" to separate it from the traditional Chinese Acupuncture. I have a friend with FM that gets the dry needling done.. she says while it hurts initially, she usually feels better after a day or so.
I think I would be more inclined to try the traditional version 1st...
Dry needling is something very different to acupuncture, e.g. it treats myofascial trigger points, while Western and Chinese acupuncture use the traditional meridians - just the needles need to be thinner for most Westerners. So dry needling may be an adaptation, but it is very controversial if it bears any resemblance to acupuncture at all. Acupuncture has quite a lot of medical evidence, dry needling hasn't.
(One study however found 92% corroboration between the trigger points and the meridian points.)

Chinese acupuncture ideally means training in China, or from a Chinese, preferably being Chinese.
My acupuncturist is Chinese, another acupuncturist here in our town was in China for more than 5 years to learn it, whilst my GP has adapted to the thinner needles of Western acupuncture, after having been trained by a Chinese, but still adheres to all Chinese points and meridians.

So I think you may be thinking of dry needling as a Western version, but what I mean by Western acupuncture is closer to Chinese acupuncture than to dry needling.
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
Hi everyone,
Hi Hayley 😁. Glad you found this place! This forum's been a real help to me. I got better insight here in 2 weeks than in the 18 years before here 😂. Everyone's been very encouraging with real insight.

It's true: what works for 1 doesn't necessarily work for all but I've certainly gotten specific tips here that did help.

The overall tip that seems to have improved my life the most is learning to NOT push myself as I did before. I still overdo it sometimes but it's usually cuz i think it will be worth it. The tradeoff sometimes though is worse flares 😬

It sounds like you've got a great head start on understanding how to possibly manage fibro! I think if I had to summarize the best way for me to look at managing fibro it is a way that sun described it (correct me if I'm wrong sun): look at managing it like it's a game to figure out what your body needs from you 😁

My gp suspected fibro at the first point of contact, once I got a clear MRI and blood works I was told it was fibromyalgia. Is it common not to go to rheumatology to rule out anything there?
I was diagnosed by a GP who did blood work on me. As others here have said I don't think it's essential to see a rheumatologist but if wanting a rheumatologist's opinion is lingering in the back of your mind and you have the means to get it, I'd say it might be worth the trip if for no other reason than just having that question answered. Sometimes getting our mind in the game is about closing all the doors in our mind which are distracting 🙂

Anyway my mobility and tingling is better, been replaced by burning nerve pain all over and my hands are on fire!
Familiar with the sensation of fire 😬. Glad to hear there's some improvement ❤️

Things I’m going to start looking into to help:
Anti-inflammatory diet
Saunas
Acupuncture/reflexology
Acupressure and moxa have worked great for me. Even just massaging my ears has produces whole-body relaxation. Weirdly, acupuncture triggered my point into an unpleasant cramp feeling. Never did it again but gentle acupressure has been helpful.

(Be aware that moxa is VERY pungent and can be smoky. I still like it better than acupressure though.)

Swimming/yoga
Super ideas. I find when I get hot though a flare comes soon.

Supplements
I have to echo the cautions of others on the supplements. It truly makes a difference which brand you choose. I have 2 brands that are my go to's and, when you find 1, I'd probably stick with it for your next supplement trial run. I'm in the States and I can let you know which brands have worked for me if you want.

Also, like sun said, when you do change something, literally just change 1 thing so you don't have to wonder which thing is helping or hurting...that advice includes avoiding new multivitamins and high dose pills. Some of us need a lot of something but some of us can't tolerate a normal serving...

Hoping to find a new normal soon
In my experience, the sooner you can pace yourself/not push yourself, the faster you will find your new normal ❤️

- not how I thought the first year of my 30s would go!
I bet! Hopefully you'll find your ways to manage it quickly.

One of the blessings you might find is that life can be slower but full in a way that it wasn't before or at least more peaceful than it was 😎

Keep us posted of how things are going if you want!
 
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