What is this? Pain in my face

WithMyLaserPun

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Joined
Sep 16, 2020
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4
Reason
DX FIBRO
Diagnosis
04/2009
Country
DE
State
LP
Well I appreciate you so much! When my imternist pressed down etc she said i have weakness and goto p.t. but yes the p.t. place says they will do a neuroexam!! Prob more than neurologist lol. I went out today in 94 degrees which never woulda bothered me, and pooooof it wiped me out. Backs of my legs gettin out the car feel like big heavy water balloon sensation!!! Do u get that?? And for 2mo this isn't goin away. How long is a cycle supp.to last??
I am sorry you're having to deal with this, it's really exhausting :/ I used to get a lot of pain and heaviness in my legs, and I used a stick for years. MY pain and symptoms move around a lot, and the leg stuff has gone away for me, but now it's all in my neck and head. I also do not deal well with heat, I get a lot of swelling in my hands and feet and I know that's pretty horrible, so I feel for you having that in your legs. I second the opinions above that going out in cooler temperatures is a better idea. Hope you feel better soon <3
 

Affinity

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Sep 9, 2020
Messages
123
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Very true! I was very happy I did it but telling you the effects of the heat and sun to see if u share them. It is very peculiar.
The heat and sun are very difficult for me to manage, too, I live in Texas and I did get a really bad flare up in August due to these things, although it is finally starting to subside. I usually try to exercise outside early mornings but sometimes my family wants to be more active during the day and it's really hard on me, unfortunately.
 

TJB

Active member
Joined
Aug 17, 2020
Messages
30
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
Hi,
Im diagnosed with Fibromyalgia and CFS/ME (depending on what Dr believes in which 😬) and I experience everything you mention.
Face pain being neuralgia I’m told. All to do with muscles and nerve endings.Weakness, muscle weakness etc.
That said the conditions symptoms can be from other aspects known within ie gut issues, low vit d/folate etc., blood pressure and so much more. Caused by Fibromyalgia or the other way round I don’t know and probably never will.
One thing I would say is never let your Dr just say ‘ah, that’s just part of Fibro’ as that’s not ok. Firstly most elements could be helped, should be checked and secondly a medical presumption is not ok and could prove to be dangerous if left.
x
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
283
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
never let your Dr just say ‘ah, that’s just part of Fibro’
A few months I kept asking myself and others: "Is that part of fibro?" Now I'm not the least interested in the answer any more. What I want to know and keep finding out successfully is: "What behaviour can stop it?" Takes a lot of observing and self-discipline and motivation to want to get everything "down to zero" as much as possible, but I do/have all of this and I'm well on my way, despite setbacks thru the colder weather now.
 

TJB

Active member
Joined
Aug 17, 2020
Messages
30
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
Hey, if you can cure yourself purely by behaviour your a rare one. Do share with medical people and experts.
 

TJB

Active member
Joined
Aug 17, 2020
Messages
30
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
Hi WithMyLaserPun,
I suffer with swollen feet, ankles, toes and fingers .....complained about to GP but it’s just been ignored.
I find the swelling always happens when the weather temperature goes over approximately 19 degrees and/or from being on my feet .
If you find out anything about this I’d love to hear from you.
x
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
283
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hehe, I assume you're oozing with irony, TJB... I know a few therapists who actually at least claim they can and *don't believe that they are talking about real fibro-patients. An example is liebscher-bracht.com who claim you just have to do their exercises.
(Which a lot of people here think are brilliant - even my mum in the UK - and use them, but they don't do much for me).
You've probably deliberately disregarded all my other posts to make that point...?
But I'll explain, because I guess quite a few people aren't sensitive to the difference, altho I know quite a few good people here know exactly what I mean.

The basis for everything else was/is osteopathy, and especially cryotherapy & acupressure to improve the fibro-problems.
I wouldn't directly call that behaviour, altho it's not meds either (since they don't help me).
As you probably realize - by "getting down to zero" I don't mean curing. I have 30 diagnoses, most are chronic and a lot I've had for 40 years. But most of them I have got pretty much down to zero, however *without being able to cure them. If I treat them right, my dry skin doesn't itch, my gut doesn't explode, my stomach and esophagus don't burn and my back didn't ache (until fibro came along). This treating means a hell of a lot of abstinence and finding alternatives to keep life fun - that's no cure. And it's not funny...
That's what I've been doing for 30 years to be able to live and not take my life for maddening itches and pains: Not funny...
But this competence is helping my pain management now. Which is helping me once again turn a new leaf / life!
With Getting down to zero I mean knowing what I can do without herbs or chemicals to reduce the symptom as soon as it comes up. OTOH I've got to know how to get a lot of my pains down to zero in 5 mins - with arnica cream and a hot water bottle, back exercises and yoga, if need be a cold shower, I can get all my joint pains most of my clavicle and back pains down that quickly. OTO they will come up again, because they are chronic, not cured. I have about 15 things which wake me up at night. I'm working on that and have more success than with meds like amitriptyline or CBD oil.
With "behaviour" I mean finding, becoming sensitive to & adjusting to the invisibly moving sweet spots of all my activities, plus resting actively, using breath-holding, yoga, legs&arms-up, cold showering, then pinpointing & treating the symptoms which come up. What remains I go to my acupressurist for.
For the Ache/exhaustibility/feverish-flu-feeling and getting reset regularly: cold showers, breath-holding, putting legs & arms up & "yoga" exercises are not enough. I need the whole body cryotherapy, ear-acupressure.

Talking to docs & experts? you jokingly suggested: I talked to a distinguished professor in the rheum clinic I was in, where they offer whole body cryotherapy to everybody with rheum and fibro there, about why it was last in my list of things to try out and he said: Because it's so individual. It will always be on the list of what patients find helps them, but never get on the list of scientifically proven, because these sort of things aren't suitable for being measured ... And true: I started with -130°C, that hurt. Then went to -110, that was great for a few days. -120 was good for 1 month, then I needed -130 whilst it was hot. Now it's cold outside I've gone up to -150°C, sometimes it doesn't help that much, today it was brilliant. How can I talk to scientists about that? My GP agrees with me tho and my docs are pleased I've found something.
But let me half-jokingly ask you back: Why should I talk to docs about it? Do you "believe in docs" despite having fibro?!?
I sometimes question whether it's worth talking about what helps me here on forums at all, because up to now no-one here has even talked about trying cold showering, which takes 1 minute or doing the breath-holding exercise, which takes 3 mins per round, no money, no docs necessary. On one other forum I'm on, several people use cold showering, others are thinking about trying both. But what does it take... ? If it isn't a pill, prescribed by a doc... ;-)
 

Hopefullyyours

Active member
Joined
Aug 7, 2020
Messages
60
Reason
Undiagnosed
Diagnosis
06/2020
Country
US
State
FL
Hi,
Im diagnosed with Fibromyalgia and CFS/ME (depending on what Dr believes in which 😬) and I experience everything you mention.
Face pain being neuralgia I’m told. All to do with muscles and nerve endings.Weakness, muscle weakness etc.
That said the conditions symptoms can be from other aspects known within ie gut issues, low vit d/folate etc., blood pressure and so much more. Caused by Fibromyalgia or the other way round I don’t know and probably never will.
One thing I would say is never let your Dr just say ‘ah, that’s just part of Fibro’ as that’s not ok. Firstly most elements could be helped, should be checked and secondly a medical presumption is not ok and could prove to be dangerous if left.
x
Hello!! I just found out my Auto Nuclear antibodies are positive and ASA. Neuro. Sending me to a new rhumatolgist wed. Ugh! Just mainly weak n heavy feeling legs arms n neck sometimes. Xo to u!!
 
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JayCS

Senior member
Joined
Sep 5, 2020
Messages
283
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hmm, I tried to halve my last post, but got just outside the 120min edit limit... But this is 'moan, complain and vent' and that's what I turned out doing, for a change... :cool:
Now I still want to specify things, if only for myself, because I haven't really got my head around what's changing yet. Understanding & praps help appreciated...
I have been in a full flare for a year now, haven't been working since Jan20, and it hasn't ended, because if I didn't keep on my toes every second of the day I would still be in considerable pain. But because I am getting each symptom down to zero faster and faster, the amount of single symptoms may be 50-100, but the *time-amount of them is usually perhaps less than an hour per day and an hour per night.
My pain diary has changed completely. I used to have almost 30 symptom areas (abbreviated) which I scaled from 1-10, usually 3-6 (7 meaning having to cry because of them) and wrote down roughly how many hours a day they were there. Then in many cases it turned from how long to how often per day. And now I can neglect most of them and it's mainly the Ache, exhaustibility, stiffness & tiredness, plus feverishness (after strain), joint and back pains, so about 8 symptom areas. So nothing like it used to be. But I'll still have a lot of difficulty working and I still depend on the cryo 4x a week + acupressure once a week.
You are right, tho, in that I seem to be a "rare one", not because I "know the cure", but because I don't just *want to do everything, I *do everything I can all the time, to get it under control, because I am blessed with (quite some) self-discipline and an ascetic capability of abstaining from "normal things" and looking for alternatives, and because with the motivation & energy to do so and with having been able to stay off work to do so, without losing my job, getting paid, and getting all docs & all attempts paid...
In that sense it is not at all necessary to tell docs all this. *Because I am praps a rare one. But it seems to help telling others, because I'm not alone, there quite a few people on the forums I'm on who are using what I'm experiencing. OTOH I *am "talking" (summarized) to all docs and pleasantly surprising them, because they are not used to hyperactive patients like me... ;-) I do *very much understand tho if people look at what I'm doing perplexed, because if you're not built this way, having FMS or even CFS is not at all a good condition for changing it. But praps in baby steps, as ever...
 
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Tazza5523

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Oct 15, 2020
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Undiagnosed
Diagnosis
10/2020
Country
UK
Hi there, sorry I am new to this thread! I sometimes have pain at the back of my head and wondered if this was linked with fibromyalgia? Going by your post? Could you please let me know :)
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
283
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi Tazza,
well, every pain can be linked with fibro, because fibro can make old pains come up & start up new ones, and praps the other way round: the more pain ridden a person is the more likely they are to get fibromyalgia.
But as I said in my 3rd from last post in this thread I've come to the conclusion that the question if anything is linked to fibro is not particularly helpful, unless you don't want to improve it. A pain at the back of your head is a pain at the back of your head, needs checking by a doc if it is strong enough - orthopedist first if it is spinal, and neurologist? if it is higher). And parallel I'd ask/tell a physio, better still a osteopath, even better an acupressurist, if you have/suspect fibro: gentle ones. And also parallel I'd very carefully try a few youtube videos <pain at back of neck>... Same for the the other pains you've described in the coil/hormone-thread (lower back pain, pains in my arms, ankles, legs, back of knees, upper back). It might be hormones, it might be diet, it might be fibro-whatever, but it will probably need exercises and some manual therapy all the same...
 

sunkacola

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Joined
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1,047
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I sometimes question whether it's worth talking about what helps me here on forums at all, because up to now no-one here has even talked about trying cold showering, which takes 1 minute or doing the breath-holding exercise, which takes 3 mins per round, no money, no docs necessary. On one other forum I'm on, several people use cold showering, others are thinking about trying both. But what does it take... ? If it isn't a pill, prescribed by a doc... ;-)
Hey Jay don't be disheartened if people don't specifically mention they tried your methods. Some will and some won't but most won't bother to post about it. My long informative post of advice has received a few "thanks" posts but mostly no one ever says "I tried this and it did/did not help". Everything you say seems to me to be potentially helpful and is worth reading, so it's worth your while to write it.
 

JayCS

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Joined
Sep 5, 2020
Messages
283
Reason
DX FIBRO
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02/2020
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GE
Thanks for your encouragement, sunkacola!🥳 Goes without saying on my part (but I do like to every now and again) that your advice-post is of course great... Just that we agree completely... 👍
 
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sunkacola

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Thanks for your encouragement, sunkacola!🥳 Goes without saying on my part (but I do like to every now and again) that your advice-post is of course great... Just that we agree completely... 👍
:)
 

VPugh

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Oct 20, 2020
Messages
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DX FIBRO
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04/2012
Country
UK
The sheer panoply of symptoms is exhausting and brings about a bit of madness. I had gout recently and I was wondering how much I could blame of Fibromyalgia weakening me. One thing you can say as someone with Fibromyalgia is that life sure gets interesting.
 
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