mental health / fibromyalgia

[Mommagonnaknockyouout]

Suffered for years but never known about fibro till somebody at work asked if I had it due to some little symptoms I was displaying. I do suffer mainly with anxiety. Doc says fibro is all to do with mental health what's everyone else's views

Sorry for sp mistakes. Cold fingers. Oh and my legal wragle is not finished and im no longer on a wage. The children ask me when will i be able to play with them and its heart destroyng. I have about 5 mins of concentration at most then it lapses and i sleep for ages in the day as exhausted doing bloody nowt! Chin up op its super hard but try to get into the pain clinic for a consultant and psychology.

Momma - ask at your GP surgery if they have a GP there who specialises in Muscular Skeletal disorders. I was lucky in that my own GP did specialise in exactly that, and he was so supportive.

He put me on meds that worked, gave me sick notes for 2 months at a time, sent me to a specialist who gave me an official diagnosis, and generally listened to me and believed in me. That made an awful lot of difference.

Reading my 1st post back sounds a bit scary where I said I lost my job and home, and though it happened to me, it won't necessarily happen to you, everyone is different. So apologies for that.

I have good days where I can walk for around half a mile, and bad days where I can't even walk to the bathroom. I can't stand up for more than a couple of minutes, and my balance is wonky to say the least. Like Pancakes I too was super fit before this, have put on weight, and have a chaotic nervous system which often gives me the sensation of my skin crawling all over my body. [flowers for you too] .

It's the absolute pits!

Fibro tends to be the last diagnosis a GP will make after they've exhausted all the other possibilities, so you need to push for any and all help you can get. So Momma, find that sympathetic GP, and PM me if you need any more help.

I believe that fibromyalgia is a catch-all diagnosis for a set of real symptoms whose cause cannot be pinned down. I suspect that once the causes are known they will vary from person to person. I was diagnosed with fibromyalgia 20 years ago. 5 years ago I discovered I was autistic. Because of the autism I have low muscle tone and hypermobility. I now believe that the fibromyalgia is actually part the physical symptoms of being autistic.

hedgehog, you are likely right. www.researchgate.net/publication/272825258_Neurovisceral_phenotypes_in_the_expression_of_psychiatric_symptoms

Hedgehogs, yes i do think that it is something that as of yet they cannot pin down. However hypermobility or not (i do have) and so do most of my family in some form or another, i believe has bugger all to do with Autism. You may have been diagnosed on the scale, but i have certinaly not got autism. Fact.
That comment sprouts utter rubbish.

There is so much so called research for and against the diagnoses of fibro that you will well find another research that refutes that link.

I'm in miserable agony today, Shirtsleeves- I'm glad my doctor has prescribed me opiates for days like this. It can be medically appropriate, not 'shocking'.

My linked research was regulating the hypermobiliy/autism link brought up.

My mum is convinced her high stress job/life was the main factor in her development of fibro. She also had a bad virus just before her symptoms began. She had to dramatically change her lifestyle to live with it. Isn't there evidence that the sleep hormone has something to do with it? So high stress may affect the body and put it into some sort of spiral that causes fibro....

So sorry to hear of you and so many others suffering

Your GP is wrong! Yes fibro is used as a dumping ground diagnosis but it is primarily an auto immune condition that is now increasingly being linked to gluten sensitivity

I have had Fibro for 15 years, by 10 years ago I was so crippled I was unable to walk without 2 sticks but spent most of my time in a wheelchair

On my 42 birthday my 2nd private and well respected Rheumatologist told me there was nothing more that could be done for me and they had to try and keep me going for a long time yet

Fast forward 3 months, with a referral to a specialist physio who deals with Fibro and an exclusion diet she recommends I was able to walk without sticks and not in major pain

Its 4 years now since we found out that gluten had caused my fibro and its taken time to repair the damage but I never use a wheelchair and I walk unaided still

My physio has helped turn mine and hundreds of others lives around, she works in our local NHS hospital and privately at the local Nuffield and is also a qualified nutritionist

There was an article in the daily mail recently that explained the link between coeliac disease and the inflammatory process that causes fibromyalgia

Obviously this isn't the case for all sufferers but will be relevent to a good percentage

Just a further note, hypermobility is also linked to coeliac disease, they are located on the same gene, anecdotally many coeliacs myself included (and my daughter) have a diagnosis of hypermobility too

Do you have a link to the research, please?

There's no need to be so rude PancakesAndMapleSyrup. I wasn't talking about you, or anyone else for that matter. I was talking about myself and my hypermobility. One of the symptoms of autism is low muscle tone. Fact. One of the causes of hypermobility is low muscle tone. Fact. Because of autism I have low muscle tone and hypermobility. Fact.

I don't see why Fibro should be a 'catch all' for symptoms that cannot be pinned down to one particular cause. After all there are several conditions that have similar symptoms to Fibro, but are isolated, such as ME, MS, Lupus, ETC. Saying it is a 'catch all ' reduces the seriousness of it, and demeans those who have it.
Therefore for me, the name Fibromyalgia is THE name for THIS set of conditions until it is otherwise proven beyond doubt.

Fibro used to be known as Fibrositis, and has been around for decades, it is not a new thing. Even so, it has only been in the last few years that serious research into the cause has begun to take place, mainly USA side.

Fibromyalgia is officially recognised by both the Government and the NHS as both a medical condition and a disabling one, so any health worker or official who says otherwise knows sod all, and needs to be further educated.

I also take opiates and I'm damn thankful that they're available, for without them I wouldn't be able to function on any level.....I hope your agony soon alleviates Chrysalis

It is a debilitating physical condition that causes widespread constant pain in the body. The science bit is that your pain receptors are basically broken so send pain responses when they shouldn't do. It can be triggered by a physical or mental trauma but is not a mental illness.

Many people with fibro do suffer mentally as the illness is very draining. It is also very variable. I know people with it in wheelchairs and unemployable and others who work 4 days a week.

Identity i feel for you! What have given you for breakthrough pain?

Wheels, stress would not surprise me. Takes too much toll on the body. The sleep hormone is melatonin. Normally you get this from 'blue light', being outdoors or an open window etc. This builds up during the day and then eventually you have enough of a dose to fall asleep. However it also keeps you awake with tablets, phones, comps etc now as they emit it too. You can download a free app called f-lux or twilight which goes by your screen clock and emits a reddy/orange colour to stop the blue light keeping you awake.
Unfortunatly when you have a nap in the day you break up that melatonin cycle as it is used up very quickly especially in deep sleep. You theb dont have enough to get you back to sleep later causing the onset of insomnia and a break up of the brains sleeping pattern ie deep/light sleep etc. Tgis is often why the life expectancy of a shift worker is less than one who has not.
Hope that gives you a clearer picture.

Hedgehogs, apologies. I snapped and im sorry as that did come across as rude. I thought you were blanketing everyone. again apologies........fact ;)

Apology accepted.

I snapped a bit back too, sorry. I'm having a really shitty day today and feeling very fragile. Probably not the best time to be on MN for me.

Some interesting views. No medication given for the pain just for 2 conditions .. Fluoxetine and loperamide . Told to take painkillers

I think EDS is vastly underdiagnosed... I hear lots of people saying "I have the exhaustion and pain and IBS of fibromyalgia and I'm hypermobility"... Well that matches the dx criteria for EDS! I think if doctors were more acquainted with the zebra theory, doctors wouldn't see fibromyalgia as a catch all, "we don't know so we'll say it's this" condition, in the way they've come to use that for ME/CFS too.

Identity You missed my point totally. It is shocking at the level they are prescribed, not that they should never be described.

I find it's hard to have an open conversation with some people who have chronic pain. I know it's hard to be open minded but opiates aren't always the answer and I say this as someone who does take opiate medication! Pain 'relief' shouldn't be handed out by GPs the way it can be. People should have accept to proper pain management.

Dd went for a CFS assessment recently and was told she does not have it primarily because she has no MH symptoms. Apparrently to obtain a CFS dx, you now must have MH problems. The consultant then suggested that her pain could be psychosomatic. Cobblers IMO.

I did make it clear she has hypotonia and hypermobile joints, IMO it's EDS but trying to get any form of dx or treatment looks almost impossible.

I didn't even know I was hypermobile until a recent medical assessment. I thought everyone could touch their toes and put their hands flat on the floor.

Huge problems come from trying to split "physical" from "mental". There is no clear distinction. Perception of pain from cancer is " mental", because pain is purely subjective. People with visible physical lesions can have symptoms which are purely "psychological" in nature.
There really is no line to draw. If medics, and everyone else, stop trying to categorise in this way, a lot of the arguments about fibromyalgia, CFS/me, etc., may stop.

What we do know is that fibromyalgia often causes huge suffering and needs more funding.

I have my genome, I have a gene that makes me sensitive to pain. It's fuck all to do with a mental health problem in me.