Tingling face?

[knovesrx]

Hi. I "think" I have been diagnosed with Fibromyalgia. This is all still in the works but my RA ruled out Lupus and Rheumatoid Arthritis through MRIs and blood tests. And, I think I'm experiencing a flare that is lasting much longer than others and has new symptoms. Do these ring true with others? My face has been numb and tingling off and on for about three weeks--around my mouth and jaw. one side at a time. My arms and fingers are numb and tingling when I'm not using them and it's incredibly hard to wake up. I feel like I could sleep all the time. I have no appetite but am able to eat if I make something. I'm taking Duloxetine, Gabapentin, meloxicam, and cyclobenzaprine as needed. I find duloxetine and gabapentin very helpful and do not think I could work full time without them. When the flares first started a year or so ago, I slept for days straight and was unable to work. I keep the cyclobenzaprine for emergencies--back spasms, legs issues but found that it helped with the tingling in my hands. I know this is a lot but would appreciate some input. I have arthritis throughout my body but especially in my back and hips. I feel too young for this(55) but like many of you have spent my life working on my feet and working like a super woman. The duloxetine helps, but the fatigue is making me a little depressed. Thanks in advance for the support,

 

[Auriel]

Hello Knovesrx welcome to the forum I have experienced tingling in the face, hands, and feet I also have thyroid issues, r.a and lupus were ruled out in blood tests though I’ve not had scans for those, but I’ve found the left side of my face sometimes tingles and is generally loads worse with headaches and migraines I get ( and I get them a lot!) hope you having an ok fibro day 🌤

 

[Jemima]

Hi. I "think" I have been diagnosed with Fibromyalgia. This is all still in the works but my RA ruled out Lupus and Rheumatoid Arthritis through MRIs and blood tests. And, I think I'm experiencing a flare that is lasting much longer than others and has new symptoms. Do these ring true with others? My face has been numb and tingling off and on for about three weeks--around my mouth and jaw. one side at a time. My arms and fingers are numb and tingling when I'm not using them and it's incredibly hard to wake up. I feel like I could sleep all the time. I have no appetite but am able to eat if I make something. I'm taking Duloxetine, Gabapentin, meloxicam, and cyclobenzaprine as needed. I find duloxetine and gabapentin very helpful and do not think I could work full time without them. When the flares first started a year or so ago, I slept for days straight and was unable to work. I keep the cyclobenzaprine for emergencies--back spasms, legs issues but found that it helped with the tingling in my hands. I know this is a lot but would appreciate some input. I have arthritis throughout my body but especially in my back and hips. I feel too young for this(55) but like many of you have spent my life working on my feet and working like a super woman. The duloxetine helps, but the fatigue is making me a little depressed. Thanks in advance for the support,

Hi Knovesrx,

I'm sorry it took so long for you to get a response on this (thank you Auriel!) Somehow I missed your post completely!

I noticed that you didn't mention pain anywhere in your post at all - only tingling and fatigue. I imagine that you are experiencing pain distinct from your arthritis to have landed on fibromyalgia, but also wondered why you only "think" you've been diagnosed? Could CFS (chronic fatigue syndrome) also be a potential diagnosis? Longer flares do come along from time to time - have you got any sense of what may have triggered this current one?

It's really not a lot in terms of what you can talk to us about here - it's always good to share and support one another! Of course, for you, it absolutely is a lot. Many of us can relate to feeling too young for this, and having lost our superwoman/man status. You're not alone, so feel free to connect any time

 

[Auriel]

Yes I was wondering where you was? You usually on it! I think there’s another one that’s not been answered yet , here you are have a bit of chocolate

 

[knovesrx]

Thank you Auriel and Jemima for the replies. I figured the tingling was fibromyalgia but was a new symptom. I didn't mention pain because it is largely controlled by medication--duloxetine, gabapentin, and meloxicam. I started this whole journey in Pain Management at the hospital after a back spasm and hernia. It was at that time that MRIs revealed the extent of my arthritis; throughout my body but especially in my back and hips -causing me to walk bent over for comfort. My RA originally thought I had Ankylspondolosing (sp?), then RA, then Lupus and now it seems like it is Fibromyalgia. I hesitate to say I have a concrete diagnosis because I see her again in a few weeks after a trial with hydroxychlorquine. Blood tests first showed very high inflammatory markers. Then I changed my diet to eating mostly clean and am losing weight and the inflammatory markers returned to normal. I don't think that the hydroxychlorquine has reduced the inflammation at all. If anything, my hands and arms have gotten worse. So, I think that may lead to a definitive diagnosis. As far as triggers go, I work generally over 50 hours a week on my feet. I have changed my job somewhat to accommodate mobility issues. Until recently, my job was in retail management and involved a lot of walking and lifting. Now, I'm a pharmacy tech with much less walking and almost no lifting. I wear a back brace and compression stockings and have "nurse" shoes. All of these things along with the medication have helped tremendously. The most annoying and difficult symptoms are fatigue and brain fog. The flares started a couple years ago and lasted 4 days each time. I thought I had the flu at times, then thyroid issues, Epstein-Barr, on and on, leading eventually to auto-immune issues. All of this accompanied by doctor visits and blood tests. I also got a lot of unexplained rashes and yeast infections. I slept for all four days. Now, the flares have extended to 2 weeks. I obviously can't sleep all day and can function with LOts of caffeine but worry that I may not be able to if the fog gets worse. I should also mention that I am post menopausal and overweight. And, I have an extended family member who was wheelchair bound for decades due to arthritis and my mother died from complications related to early dementia. I know this is a lot but even just typing it all out helps and makes me feel like others understand. Honestly, I didn't understand fibromyalgia and always kind of thought it was something that was maybe not so much a "real" disease. I hope that doesn't sound horrible. I just didn't understand. And, I feel like saying I have fibromyalgia give people the impression that I'm weak. Thanks again for the responses. it helped tremendously!

 

[Jemima]

Hi again Knovesrx,

50 hours a week on your feet is a lot for a fibro body, so it's not surprising that you're getting triggered, and I think you should give yourself credit for managing so much! How far have you got with figuring out ways to manage your symptoms? You might find it useful to read through Sunkacola's post that is pinned to the top of the General Discussion section of the forum, where she outlines tips for managing fibromyalgia.

Do feel free to share as much as you feel like here - I'm glad to hear it is helping you to type it out! Also, don't worry about not having understood fibromyalgia. A lot of people don't know much about the condition and have preconceived notions about what it is, having never experienced it themselves. I suggest having a poke around in the forum and reading experiences of others - this will probably help you get a sense of what you're dealing with, and also arm you with the knowledge that you're not alone!

In terms of fibro flare durations, the longest flares I've had have lasted for weeks or even months at a time, while others have only lasted a few days. Don't assume that because your recent flares are longer this will always be the case - your symptoms might well calm down again soon. Especially if you can pinpoint some new ways to support your body!

Particularly looking at the dreaded fibro fog, I found taking supplements to support mitochondrial function (this is the energy conversion that takes place in your cells) was transformative for me in helping the haze to clear. I take CoQ10 and Alpha Lipoic Acid for fog. If you want to try something like this, shop around to find inexpensive but reputable brands, so you can try it out without breaking the bank!

I can relate to having survived on caffeine as a necessity dealing with this condition, but keep in mind that the more tired you get, the worse your symptoms will become. Figuring out how to improve your sleep should make a really big difference to the fog too. Coffee can only carry us so far!

On your family members, I'm so sorry to hear that you and your loved ones have experienced such struggles. However, know that your family's health profiles and your own are not the same, and your fate isn't bound to theirs. The more you can claim your autonomy and figure out how to really look after yourself with care and compassion, the better you are going to feel

Don't hesitate if we can help in any way!

 

[Auriel]

Caffeine wind’s mine right up makes my neuropathy, pins and needles worse then the migraines and headaches start so now I’m mrs decaffeinated decaf tea , decaf coffee decaf living in my decaf house

 

[Jemima]

Caffeine wind’s mine right up makes my neuropathy, pins and needles worse then the migraines and headaches start so now I’m mrs decaffeinated decaf tea , decaf coffee decaf living in my decaf house

I think I'm lucky on this one - I don't seem to be so sensitive to caffeine. Also, I would willingly mud wrestle anyone who tried to take my morning cup away

 

[Auriel]

It’s alright there are doctors who still don’t think its a real thing I swear they’d believe hypochondriac’s before they’d believe us , maybe have another word with your doctor about things and maybe ask if you can have a sit down more in work if you can x x x

 

[Drummer76]

I've been dealing with this issue for 2 months now. Primary Dr done blood work,everything good. Sending me to a Neurologist which is very extended to December.
I thought it was something to do with my heart since I had a heart attack last December,but after a hospital visit over another issue,the heart is ok and not causing me any issues.
I have had Fibromyagia since 2006 and on disability now. I can't use anything for pain except Tylenol which doesn't even take care of the headaches. There are several medications I have to avoid. Life if crazier now dealing with FM and heart issues

 

[Fibrofighter39]

Welcome to the club..this is one if most annoying and scary symptoms..i have asked about it here not too long ago...tingling around the mouth ...it is indeed a symptom if fibro..everytime i experience it i burst in tears

 

[knovesrx]

Thanks, Drummer76 and Fibrofighter39. Yeah, the tingling was scary. I am an overweight, 55 yr old woman who experienced similar tingling and numbness a few years ago, along with chest pains. I went to the hospital and was rushed in for tests. It turned out to be GERD. But, the extended tests also found a heart murmur and a small abdominal aneurysm. So, I know that face tingling can be a scary symptom. I was relieved that a lot of people experience this as a symptom of their fibro. I find it annoying and distracting as I spend much of my time rubbing my face. It only lasted a few days. Thanks again!

 

[Carolyn Rhodes]

Yes! I get the numb and tingling in my arms and hands also, in my feet. Not a comfortable feeling at all.

 

[knovesrx]

Me ,too, Carolyn Rhoades.

 

[JayCS]

knovesrx, I'm another strong one. Not sure how often or long my flares were before the dx - my wife long wanted me to go to a rheum.
Then my continual full flare smashed my 45-50h/wk to the ground and I've only been able to get back up to 10h/wk, more backfires.
Having adapted using strict pacing & getting pains down by symptom pinpointing & tracking helps give the appearance of some normality. Aside from acupressure for the pains it's amino acids that have given my full energy back, decimated stiffness, improved sleep a little.
But I'm still working on the insomnia, plus & Ache which result after more than 2x2h/d of activity.
So I'm only "strong" cos not giving up and working on the fibro full time, exercising, researching, reading, writing etc.
This improves it praps 1-2%/month, and might allow more live work, but I need a lot of time "for myself", it is necessary self-care.
So questions that might get increasingly relevant are: How much longer is it good to take this load, what further alternatives have you got?
Even if I didn't have disability benefits & overtime: I prefer working with less money for a life with less pain than for one with more of both...