How long did it take u to find out you had fibromyalgia?

mrsb62

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Hi
So I am new to this forum. So they have said its 80% I have fibromyalgia but need to do more bloods ECG AND blood pressure.

My question is how long did it take everyone to get there digonise due to its took me nearly 4 years.
 

cookiebaker

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it took me a couple of years, but from what I have seen, it can take on average, around 5-7 yrs

and now that I do actually have a "formal" diagnoses, other docs are all jumping to that as a source of my current physical issues - which i am pretty sure are more related to the neck arthritis problem, and nerves being compressed...
 

sunkacola

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So hard, I think, for many of us to answer that with accuracy. At least that is how it is for me. I had had chronic pain for a long time, but I have always had a high pain tolerance and a lot of energy, and it was only when the pain reached a certain level that I told a doctor about it. Then it was about 3 years before I was diagnosed with fibro. So, did I have fibro all those previous years or not? Hard to say.
 

mrsb62

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Thank you for replying guys I was like you full of energy doing 60hrs at work then carried on after my first fall and then suddenly bang everything just stopped me dead and suddenly I couldn't walk or do what I use to do.
 

JayCS

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Always an interesting question... put slightly differently and in combination with different replies makes me think about things differently...!

Lifelong I've had pains of back & muscles, oversensitivities of stomach, gut, skin & 'nerves'.
Also lots of strange small symptoms that improved, p'raps after getting rid of mercury fillings.
P'raps since my swine flu 2011 I got flares of severe fluey ache and stiffer after not moving.
My GPs and I thought it might be fibro, B12 & D3 didn't help, my wife thought rheumatoid.
Then also still full of energy, with a lot of strenuous working, I crashed to 0 for 10 months.
"Diagnosis" took only from the 1st rheum. appt. Oct19 to a 2nd one Feb20, via "10" other docs.
To exclude "worse" diagnoses behind all my many symptoms I went to 45 docs in 1.5 years.
First tests & treatments made everything worse, then supps & good PT better, except energy.
But my jabs Dec21 and Feb22 triggered MCAS, explaining all previous oversensitivities.
Supps & diet etc. improved all "25" new/changed symptoms, except mainly fatigue/Ache....

I accelerated my fibro diagnosis with:
a vague knowledge of fibro, a 2nd rheum. opinion, and many parallel appts.
Similarly I accelerated improvements by lots of self-education and self-treatments.
 
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mrsb62

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So was that the covid jabs that you had? It's just that since I had my 3 I was very ill with all 3 and myself and my hubby went back and since I have had them jabs I have been worse than ever especially with my mobility and tiredness.
 

JayCS

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So was that the covid jabs that you had? It's just that since I had my 3 I was very ill with all 3 and myself and my hubby went back and since I have had them jabs I have been worse than ever especially with my mobility and tiredness.
Yeah, I spose we're the lucky few that overreact to the CoV-jabs - without any upsides like being CoV-immune life-long. 😜
From what I'm hearing for people who have fibro or CFS it's MCAS that is the most likely reason.
Others are deeper allergic reactions, possibly to the excipients of the jab (IgE, which has been excluded in my case).
And the other big one is post-vac syndrome. Looking at those symptoms mine are more "allergic"/histamine-y than them, so again more MCAS style: burning sinuses, skin, mouth, tongue, altogether 25 new/changed symptoms.
healthrising sort of pointed me to MCAS before my first jab, so I knew from that beforehand it wouldn't be a piece of cake (and my wife knew cos she knows all my overreactivity). But my reactions were even stronger than imagined, not recovered after 72 days (2nd jab), whilst healthrising had implied 2 weeks. So re-reading that it quickly became clear that it might be MCAS and so I did more and more of the supps treatments recommended and so got the accompanying symptoms under control, except to this day increased exhaustion compared to the fibro-exhaustion....
Maybe one of these 3 possibilities can help you?
Edit: I'm aiming on getting the bivalent jab on the 7th, cos I know CoV itself would very likely be much worse for me, since my fibro starting was possibly triggered by swine flu and then the full flare from a normal flu, praps amongst other things....
 
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mrsb62

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Sorry I couldn't get back in my account after changing phone blooming thing.

I have had 4 jabs with covid and it seems to make it worse and worse. I have had the injections I'm on loads of medication which are knocking me out but it's got to the point now where my husband has to get me out of bed get me dressed.
 

JayCS

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I have had 4 jabs with covid and it seems to make it worse and worse. I have had the injections I'm on loads of medication which are knocking me out but it's got to the point now where my husband has to get me out of bed get me dressed.
Oh dear! Hope it doesn't stay like that, but improves either by itself or by you finding something.

(The 3rd reduced my maximum energy even further, so on the one side "worse and worse", like in your case:
Before the jabs, just from fibro, I'd stabilized my energy to 35%, so could still go to work a few hours a day.
The 1st jab brought that down to 5%, 72 days to get up to 30%, which was my aim for getting the 2nd.
The 2nd again brought that down to 5%, 9 months to get up to 25%, off and on.
The 3rd (bivalent) brought it down to between 10 and 20%: less, but more stable, more calculable.
Using an antihistamine and all my many fibro & MCAS supps again, this time I have not only less of the histamine-y side effects again, but also much better sleep than before the jabs, actually it's minimized my fibro insomnia, which may be keeping the minimum energy higher, but definitely increasing quality of life, & time.)
 
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mrsb62

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What is antihistamine?? Sorry to ask I just want a better quality of life so I am looking at different things xxx
 

JayCS

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What is antihistamine?? Sorry to ask I just want a better quality of life so I am looking at different things xxx
That's actually nothing to do with fibro itself, it's a med to reduce the neurotransmitter histamine in our bodies, esp. for people with allergies like hayfever. In my case I have no allergies, but the immune system condition MCAS, which has lead to after the jabs now reacting to histamine in foods, although I still have no allergies and no histamine intolerance. I have always had intolerances to a great many foods, which I've been booking as IBS-D since learning of that, my allergist "suspects" it.
@cookiebaker also educated me that antihistamines are often put into sleep meds, as many of them make drowsy or sleepy. More modern ones ("2nd generation") don't make you as drowsy as the older ones. Since I'm quick to be zombified day and night, even by supps, it was important to find an antihistamine that doesn't make me drowsy, and I was lucky that my allergist had the right instinct, just I had to make sure to take it before bed, rather than in the mornings, and that way it together with all my many sleep supps and the 3rd jab has made my sleep fairly good now. But I actually take it because of my histamine reactions from the jabs, in my case burning sinuses and skin, nausea and a lot more. Mine is one that isn't available in most English speaking countries, rupatadine/Rupafin, a 2nd generation H1-antihistamine.
It doesn't improve my progressively increased fatigue from each jab though.
 

cookiebaker

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i have had no problems with the covid vaccines... a bit of a bruised feeling in the arm where the jab was and maybe a bit overly tired for a couple of days after, but other than that, no problems at all. I have had 5 jabs now - the most recent being the bivalent version this past November.
Because I also have COPD, the thought of getting covid just terrifies me...
 
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