Very interested in your opinions and ideas re- the seeming explosion fibro diagnosis

[maydaze43]

Hi everyone, great to be able to finaly post here!
I am really intererested in peoples views about fibro,
And why we are seing such a rise is diagnosis in the last couple if years.
I have been unwell for many years, only receieving a diagnosis of fibro a few months ago...of all the illnesses i thought it could be, i never even considered fibromyalgia.
When i became really physicaly unwell a couple of years ago, and im talking barely functionable, even though i was still working. I insisted on a vitamin D test...low and behold i was severely deficient. My daughter has also just been diagnosed.
She also is severely deficient in vitamin D.
I also know of others who have been unwell because of this deficiencey.It is known that vit D deficiencey and fibro symptoms can be basicaly the same.
I personaly feel very dubious about the fibro diagnosis when all other avanues have not been explored.
I havnt had any other tests apart from the bog standard ones.
Ei for lyme, no cat scan, no ms evaluation.
Obviously, and even though she is a lovely woman, the doctor tries to push psyche drugs on me every time i see her dispite the fact that ive made it more than clear i do not take psyche meds under any circumstances..Ever..due to a massive and hellish cold turkey withdrawal many years ago.My reasons are also political.
Your thoughts about this would be wonderful.
Hugs to everyone suffering x

 

[diamond]

Hi Maydaze43.....i have heard that vit D deficiency is common in fibro. I take supplements as i dont get out in the sun much and have very sensitive skin.

My personal belief is that it is a faulty stress response system that causes fibro...where the volume and sensitivity to emotional stresses gets turned up and up and never really returns to normal...like its running in fight or flight mode so much that the central nervous system stops functioning and resetting
itself.

This in turns messes up something called the HPA axis and makes our brains respond differently to all stimulus.

I know that's how mine began after a series of big emtoional traumas i got like a burning vibrating sensation first in my legs that became debilitating pain as it continued for hours.

Gradually this pain spread bit by bit. I did a long post a few months ago that many people joined in with personal experiences and ideas.

You are right not to take any drugs you are not comfy with. I hope its a nice day in Wiltshire...I love Salisbury and the surrounding countryside. x

 

[Northernelf]

I have had so many tests. I went through a few months thinking I had MS but that was ruled. Then I was told it was probably Lupus, that was eventually mostly ruled out. I got a couple of wicked pneumonias and it turns out I have low IgGs - so I am on plasma injections to prevent me from catching everything that goes around (it's working pretty good).

Having said that, this all started out with joint pain that has spread from my hands and wrists to my whole body - all the main joints of my limbs and often my hip or low back. I have seen three rheumatologists (and the one neurologist that ruled out MS) and was diagnosed with MS, nothing, and fibro (by rheumy 1,2, and 3). An internist said maybe "Lupus lite".

Anyway, three years later my pain is huge. I take ampitryptiline to sleep and stop tingling and nerve pain. I may have fibro because I do get muscle pain and tendon issues and definitely fatigue, but the very symmetrical joint pain may mean something else - BUT blood work won't work on me anymore because of the plasma I use. Huh.

Sometimes they just don't know.

 

[DK_engineer]

My pain started very much like yours, Northernelf, symmetrical joint pain in my hands and wrists thar spread to other parts of my body. Everyone thought it was rheumatoid arthritis at first. They did tons of blood tests on me to rule out rheumatoid arthritis, Lyme, lupus, scleroderma amd probably some other things I am not aware of. No scans, though, so sometimes I wonder if they did a good job ruling out ms. Part of the reason the rheumatologist called it fibromyalgia is that I did not improve when she gave me prednisone (it just made me really anxious).

I think fibromyalgia diagnosis has become more common over the last decade or so because the science has shown that it is not imaginary and that it is a separate condition from depression (which is also not imaginary). Also, fibromyalgia has a course of treatment that is distinct from other conditions, so it makes a difference whether or not the doctor diagnoses it.

I suspect that in the future, as medical technology improves, fibromyalgia may be understood to have different types, much as arthritis has been over the last 100 years.

 

[maydaze43]

Hi willow hmm i think its such a minefield,if it is a stress response thing then it really doesnt surprise me at all..my whole life has been very truamatic...but i guess i wonder why now? I have always felt much mucher tireder than other people although was always physicaly strong.But only in the last couple of years has everything really hit the fan physicaly.
It has been a particulary horrible couple of years.Those times when you really feel you cant and simply dont want to... Take any more... :-/
I have never felt suicidaly depressed like i have the last year.. And that feels very very alien to me...no matter what life bombards me with ive always seen some sort of learning from it...not lately...i feel truly defeated at times...but it is all very up and down... How long ago did everything start with you?? Was it a gradual thing or sudden with the burning legs?
Yeah the west country is really lovely..somerset tends to be a bit prettier than wiltshire i think... thankyou for replying...this forums been a bit hit and miss for posting so havnt seen any replies till now... X

 

[maydaze43]

Hi northen elf..oh god you sound like youve got a hell of alot going On?That must be really tough.. And yeah i agree with you very much, they dont know....maybe thats one of the hard things about fibro, is that we can never really be sure thats what it actually is ? it kind of pisses me off that someone gets diagnosed with something when all other possabilities have not been ruled out, and sent out the office with a script for psyche meds..x

 

[maydaze43]

Hi DK, i hope you are right.. I still wonder whether there is a link to vit d deficiency and maybe thats why there are more diagnoses...since everyobe had been told to use sun cream...but then i guess that doesnt account for it being mostly a female disease...although ive read that its becoming more common in men... I also still cant help feeling the diagnoses is a fob off x

 

[DK_engineer]

It is frustrating to have a condition which is so poorly understood. We don't have a chance at prevention or even targeted treatment without at least some understanding of root cause.

 

[diamond]

Hi Maydaze well like i say my fibro started after several years of major stresses the last of which kind of left my sympathic nervous system constantly set to hypervigilant.

It was a gradual thing..the more i was subjected to this anxiety type response the more my legs began to vibrate and the more times it happened the sensation began to turn to pain and waking up stiff. I guess it was just over a few months it became what i now know is fibro and spread through out my body...no longer needing any kind of trigger just daily random pain but still made much worse by stress that changed the pain from manageable to disabling.

It started in 2007 by mid 2008 there was no more denying it was real and i had to accept i wasn't going to get better and had to start modifying my lifestyle and limiting repetitive activity.

Over the years more symptoms have joined in randomly when i had spent a whole life with no sign of any health issues .... but from 2009 onward Vulvodynia interstitial cystitis IBS Tinnitus TMJ Migraines all joined the party.

Periods of depression are natural...its a tough illness that seems to know no bounds.

Yes Somerset and Devon and Cornwall all beautiful and you are near Bath which i love. Its a gorgeous sunny morning here...i hope the sunshine lifts your spirits. Take Care

 

[maydaze43]

Yep dk you are right..and that all goes for the fact that they say fibro is incureable also..im afraid i do not believe this is an "incureable" syndrome. This is not coming from a place of denial.. How can they say somethings incureable,when they dont even know what it is...or exactly what causes it. It makes completely no sense at all...

 

[maydaze43]

Willow i relate very much.. Ive suffered from weird unexplained symptoms and sensations for many many years,the actual physical pain began to manefest about 8 years ago in my face, then later spread into my lower back womb and pelvic area which has now spread to my fingers, shoulders,wrists etc etc and ive spent periods of time struggling to function.,especialy during the winter months when the vid d deficiency flairs up....for me the cog fog,memory issues crushing fatigue,weakness and the horrible depression are the most debilitating things.. And obviously there are
Also so many other weird a whacky symptoms... The pain alone? i could tolerate...i get you about stress also... Periods of stress are one thing, but its the unrelenting stress that goes on for years that does the damage i suspect...

 

[Trellum]

I guess the reason we are seeing more diagnosis now is because more and more doctors are starting to actually believe in it? Some years ago I think people with fibro suffered not knowing what was wring, never getting a clear diagnosis... but now I like to believe the medical community is starting to believe in it and is trying to understand it more.

 

[remnant]

There are better methods of diagnosing fibro today than before. Doctors have also come to learn more about the disease whose prognosis and diagnosis took long periods of time due to the fact that it is a syndrome. Some of the results do reveal the fact that it could be another issue altogether like Vitamin D deficiency or lupus.

 

[maydaze43]

Hi remnant, what do you mean by another issue altogether?
Trellum hi, yeah maybe thats it. I still cant help feeling big bucks to be made out fibro though.
Im still trying to wrap my head around the fact that they say this is life long?i find it difficult to accept statements like that when no one even knows what the cause is, let alone "what" it is...
Im not at alli n denial that fibro exists incase in comes across that way...i know all too well that it does..:-/
Hope you guys are as well as can be...x

 

[gryfalcon]

Fibromyalgia is a real thing. My child has had it since she was an infant. I can trace symptoms back to practically the day she was born. She has certainly gotten her D levels and B12 levels up. It helps, but it is not the final answer. There is also an association between fibro and problems in iron metabolism. My daughter is frequently anemic. Again -- it helps, but is not the final answer.

I do believe doctors are more aware of fibromyalgia because Lyrica was approved for treatement of Lyrica, and the manufacturer works with doctors to make them aware of it. Doctors see no real need to make a diagnosis when there's not practical treatment for them to offer. So, there probably are more diagnoses made these days. Lyrica is awful stuff, BTW, so I don't think you'd be missing much if you chose not to take it.

My daughter has gained a great deal of improvement with supplements. She's not cured, but she is much better. She needs a lot of fish oil, a,b,c and d vitamins, high does magnesium and malic acid, NAC detox regulators, co q10, and a few others. We don't do multivitamins because they don't seem to work very well.

She also finds that avoiding gluten and animal protein and focusing on a fruit and veggie diet can help when she is feeling particularly bad. Chipotle veggie bowl is one of our standbys.