New Fibro Symptoms

caramani1967

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May 23, 2022
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9
Hello, I’ve been really down and don’t know where to turn next. I was diagnosed with Fibromyalgia about 25 years ago. I pushed myself through the last 25 years with all the flares. I got Covid in January of this year and think I’ve been in a flare since April. I’ve been going through some new symptoms; Forearm pain, wrist pain, pins and needles in hands, knee pain, calf pain, back and ankle and foot pain. All at once, usually it’s one area then moves to another area. I made an appointment with my rheumatologist and she placed me on celebrex, which I could not tolerate after 3 days. Does anyone else have all these areas of pain at once? Anything I can take (otc) for the pins and needles? I work full time and make chemo blankets and need to get one done this week, but my hands won’t allow it. Will this flare ever go away, this has been the longest flare and it’s impacting my life drastically! Very depressing to watch my family to continue through life activities and events without me.
 

JayCS

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DX FIBRO
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I pushed myself through the last 25 years with all the flares
I got Covid in January of this year and think I’ve been in a flare since April
new symptoms; Forearm pain, wrist pain, pins and needles in hands, knee pain, calf pain, back and ankle and foot pain. All at once, - ----- Does anyone else have all these areas of pain at once?
rheumatologist and she placed me on celebrex, which I could not tolerate after 3 days.
(otc) for the pins and needles?
I work full time and make chemo blankets and need to get one done this week, but my hands won’t allow it.
Will this flare ever go away, this has been the longest flare and it’s impacting my life drastically!
Very depressing to watch my family to continue through life activities and events without me.
Hi caramani - it's tough to think we've had it all, at least more than enough, and then a new level arises....

I'm there: the jabs triggered MCAS which has stopped me being able to go to work since December, or even move much. I can now do 15-20% from home, nothing physical, before 35% there. I'd been in a full fibro flare for 2 years and this 2nd MCAS flare after the 2nd jab doesn't look as if it's going to go away, altho I'm working at that for many hours most days.

My (25) new/changed symptoms started inside of hours / days / weeks of the jabs, so they were the triggers: D'you think the flare was triggered by CoV, although 3 months later? Does it feel like fibro or something else?

I was also put on celecoxib ('Celebrex') and another COX-2 inhibitor, also didn't tolerate them, after 1 day. They aren't for fibro pain, meds hardly help for fibro pain anyway. Doesn't sound as if you wanted to continue with meds, and tolerate their bad side effects, but if you did then pregabalin ('Lyrica') might be a better bet for fibro.

Whilst many people have alternating pains, mine were usually independent of one another, and I could treat each individually. So I get my local pains down to almost zero with various kinds of physiotherapy, mainly stretches, exercises, acupressure, but also things like cold showers. Now without therapist I successfully find something helpful on youtube, looking each symptom up with the PT form.

Also generally with supplements, the more commonly known ones for pain being: magnesium malate, NAC, Ω3, CoQ10 and SAM-e. Typical supps for pins and needles would be B-vitamins, vitamin D (sun), magnesium, Ω3, ALA, ALC, curcumin & turmeric (if your stomach tolerates those 2) and treatments: acupuncture & TENS unit.

To allow meetings longer than 30' with family & friends I'm developing various techniques - lying down with eyes closed near them, listening, enjoying and sometimes chipping in, or taking longer breaks alone. I talk with them all about what I need, what helps, what doesn't and they also (try to....) make suggestions. Instead I learn to savour and love as much of my new much slower life and communicate via mail and sometimes phone. And increase activities that I can, to be happier, always on the look-out for something new. Of course various mental techniques like mindfulness & relaxation are very helpful for that too.

Is that any help?
 

caramani1967

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May 23, 2022
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9
Thank u for your response and providing so much detail. I started yoga videos the other day. I’m also about 25 pounds over weight, trying to lose the weight too. Seems like I’ve been wishing everyday to end and able to go bed early. I will ask my doctor about pregabalin when I go back in August. My FP recommended Cymbalta, but I have a demanding job and need to be alert. I may need to take 2 weeks off to try something. Just need the pain to go away. Thank u for your response!
 

sweetkamie20

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May 16, 2022
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345
Thank u for your response and providing so much detail.
I admire your spiritedness and commitment. I think you are going to find things that help tone down what you are feeling though it might take some trial and error. We are all doing trial and error journeys alongside you.

I am just learning about things myself and dont have the same symptoms but JayCS has a lot of personal experience and tons of research invested in everything fibro-related so you found an amazing resource right here!

Dont be surprised if replies to this post take a while to come in - new posts dont get posted in order so this might not be seen by everyone for a bit 😒 But more replies will come!
 

JayCS

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My FP recommended Cymbalta, but I have a demanding job and need to be alert. I may need to take 2 weeks off to try something.
But you're not going to take holiday leave are you? For decisions like this I talked with my bosses when a good time might be and they encouraged me to just go ahead and take sick leave as needed. Their regrets came after talking about the jabs which they encouraged me to take although I'd told them it might be weeks to months before I'm back and now it turns out I won't be back, praps never. But the regrets weren't for them, they were for me (like it should be). I did it at a time where I could leave my "workplace" as "tidy" / wrapped up as necessary and everyone concerned knew I was going to take a risk - and even applauded my courage.... *sigh*.
Of course taking meds isn't quite that risky. But testing melatonin and CBD oil I also did at a convenient time, in the end it put me on sick leave for a month.
Actually I similarly prepared them when the fibro full flare started and always discussed everything in between. I could joke that I'd always done this, even managed to have accidents at convenient times.
And it's win-win tho, as I've been working quite a bit despite sick leave since December and am continuing similarly the next 2 years. Too specific to explain, but meaning more money for me and more relief for them.
 

fimi

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Apr 12, 2022
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233
Reason
DX FIBRO
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UK
Hi Caramani, I can see that you've received some great advice already (they're a great bunch on here, and JayCS knows his stuff) :) So i just wanted to welcome you and say that whatever you're going through, we are always here to listen.
So glad you're here, and please keep strong. :)
 

sunkacola

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You might want to try a TENS machine for the pins and needles tingling sensations. It sounds a bit counter-intuitive, but it works for me and might for you.
 

BelindaJ

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Aug 26, 2020
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9
Reason
DX FIBRO
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8/2019
Country
US
State
NC
Lyrica helps with my pins and needles, but work with your doc on the correct dosage. If what they prescribe initially doesn’t help then an increase may be needed. That’s what happened with me. The tingling used to keep me awake at night, but is now under control which is crucial because good sleep is vital for fibro sufferers! Good luck!
 

cookiebaker

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Joined
Jul 26, 2022
Messages
493
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Look into Gabapentin
gabapentin did absolutely nothing for my pins/needles - but, we are all different. it did make me slightly sleepier, too, but not by a lot.

if at all possible, most of us try to stay away from prescription medications - non-medication therapies, supplements, and dietary changes are often enough to relieve a lot of symptoms

if one does need to turn to prescriptions because nothing else works, then that is what needs to be done, and no judgement for it.. but we do like to try alternatives first.
 

Cutiegirl

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Sep 18, 2022
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I had a 3 month flair up this past spring and then I was diagnosed with fibromyalgia. I started July with a 4 day detox and then a 21 day radical metabolism reboot (Anne Louise Gittleman). My flair up stopped. So did my Gerd. Inflammation decreased. I am working on healing a leaky gut and it seems to be working. I have cut out dairy, gluten, sugar and nightshades. I stick to a simple diet that I can make ahead of time. Every Thursday or Friday I reintroduce one thing to see how my body will react. It's a slow process but it is working!
 

sunkacola

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Cutiegirl, that is fantastic. I am so happy to hear people reporting improvement through diet and exercise and lifestyle improvements rather than using only drugs to dull the pain.
Good for you. :)
 
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