What is this? Pain in my face

TJB

Member
Joined
Aug 17, 2020
Messages
21
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
Hi,
Irony isn’t the correct word!
Each to their own of course, but ultimately with hundreds of thousands of sufferers, then if there’s a quick fix they would all be doing it. ..problem solved. That’s not the case.
x
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
211
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
As I said: I know that and agree. I don't feel as if you are listening to me at all... so let's leave it.
 
Last edited:

TJB

Member
Joined
Aug 17, 2020
Messages
21
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
Definitely lol
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
893
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi,
Irony isn’t the correct word!
Each to their own of course, but ultimately with hundreds of thousands of sufferers, then if there’s a quick fix they would all be doing it. ..problem solved. That’s not the case.
x
No one on this forum is claiming to have a quick fix. That's because there isn't one. We all know that.

Many people here have tried things that turn out to help them, and so they come here and spend time writing about these things, as JayCS does, in the hopes that something that helps them will help another person. No one expects that what they suggest will work for everyone or be a quick fix.

Posts that claim to have a cure-all or quick fix are spam posts boosting a product they want to sell, and those are either not permitted to appear or are deleted quickly by the moderators.

Occasionally also a person has come here and insisted that what they did would work for everyone, and even become disagreeable about their insistence. Those people don't last long as posters here because we all know that any claim to that effect is false.

I have written a long post with advice. I have put to use everything that I wrote in that post and every one of those things has been helpful to me in one way or another. But I make sure to say also that each person has to experiment, because everyone's reaction to something will be different. It is my hope, and also the hope of JayCS, that what we have to say will help another person.

Personally, I appreciate the things that JayCS writes, because it is clear that he is doing his best to be helpful to others, and I think that deserves a lot of credit.
 

Hopefullyyours

Active member
Joined
Aug 7, 2020
Messages
45
Reason
Undiagnosed
Diagnosis
06/2020
Country
US
State
FL
Hi all! Just got told positive SSA by 2nd rhum. but she wont say i have sgrogens bcus my blood shows no inflammation so cant treat me! Whatda hek..does anyone know bout this topic?? She also said she feels my symptoms present fibromyalgia
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
211
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi HpflYrs - I'm similarly a bit at a loss concerning Sjögren's, so I'll now be consulting my 2nd rheum. who'd dxed FMS and then praps a 3rd.
I think it needs to be watched, in your case also. Even if it's not - yet, it may develop there. I don't really want to take meds anyway, unless I reaally have to. The professor in the rheum. clinic said: It won't make any difference to you whether it's Sjögren's and/or Fibro. The doc in the centre for rare diseases said: It would help her if she knew the Fibro were actually Sjögren's. I agree with both and neither... :unsure: It does make a bit of a difference to me. And I don't think it isn't Fibro, even if it were Sjögren's, because the symptoms fit to both and understanding them as both, helps me understand and be more flexible in my approach to them. And if it does become Sjögren's I will have to watch out for lymphomas in time (but OK, I am watching already, a bit).
Sjögren's - In my case I seem to have a few signs (dry mouth, TPO, IgG4 and Alpha-Fodrin-A are too high, lymphocytes reduced, but no ANA, no metabolic acidosis), so there is a suspicion, because of which I had a lip biopsy done. This is Grade 2, which is neither fish nor fowl either. Why I haven't had SSAs done I don't know, but have read that if SSAs are negative, then Alpha-Fodrin can support the diagnosis.
Diagnostics of Sjögren’s Syndrome by Means of Anti-α-Fodrin Antibody
 

Hopefullyyours

Active member
Joined
Aug 7, 2020
Messages
45
Reason
Undiagnosed
Diagnosis
06/2020
Country
US
State
FL
Wow thx 4 tellin me! Did ur blood show inflammation? Do u also feel the heavy limbs and shoulders. I always feel it gettin up off couch like concrete ughhh
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
211
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
No inflammation as far as I know. Not exactly shoulders, 'just' all limbs - arms & legs. Whatever position I keep in longer than 10 mins. It's got better tho. Depends on my overall load. Today I took quite some time to get out of the dentist's chair altho he hadn't done too much... The good thing about this concrete is, it doesn't directly hurt (me), just looks strange. The Big Ache is sometimes associated with it, but often not.
 

Hopefullyyours

Active member
Joined
Aug 7, 2020
Messages
45
Reason
Undiagnosed
Diagnosis
06/2020
Country
US
State
FL
What big arch?? Do u have rashes like me? I was just at derm dr and he said i have beir spots!! Immune system issue w circulation omg! Ughhh. White spots on arms n body
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
211
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Ache, not arch :D Thru things like overexertion my complete body aches as if I had the flu and/or feels feverish. Some may call this fatigue, but I have inner energy and often quite a bit outer energy, so I separate the two. Also my muscles may feel weak, altho they aren't. The muscle stiffness is also separate and doesn't necessarily mean ache. I suspect 'fatigue' means Ache plus lack of energy plus weakness.

No rashes, no spots, unless I take chemicals, like COX2-inbitors or Metamizol. Just an invisible itch (outside and in: gut = IBS/ intolerances).

You mean "bier spots" I think - interesting and rare! Hadn't heard of it, looked it up: Need no treatment, apartment from praps psychological. I think they look interesting & cute, like *beauty* spots, I hope you manage to come to terms with them. Strange when we have things which look painful but aren't (like my stiffness), whilst all our true pains are all invisible to others and ourselves. But we can use it as a sign for others that we are different that way, like: "Look at this! - and that's only the tip of the iceberg...".
 

TJB

Member
Joined
Aug 17, 2020
Messages
21
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
I agree, however, everyone has their own experiences, understanding and often huge amount of knowledge in theit diagnosis and dealing with it (too often a diagnosis can be debatable too).

Id like to think everyone on here wants to support and help others.

If there was a simple, quick fix, let’s face it, this forum would be pretty pointless as we’d all be sorted. That’s common sense, not irony lol.

My opinion should also be respected and not replied to with comments of personal presumption.
 
Top