Aspergers and Fibromyalgia: Hi, I... - Fibromyalgia Acti...

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Aspergers and Fibromyalgia

Bounceee profile image
29 Replies

Hi,

I have both Aspergers (AS) and fibromyalgia, being diagnosed late in life with both and with 'severe primary fibromyalgia'. During my journey of trying to understand both the AS and fibro, I have sometimes wondered if I have fibro because of the AS, as I really can't understand why I have fibro. I know there's a school of thought relating trauma and/or abuse to having fibro (which I have suffered) but I find it such an unusual illness that it begs lots of questionning. I also know more women have it than men, so again wonder if it's linked to abuse as more women are abused than men.

I also wonder when I hear people talk of their fibro and 'flare-ups' as I'm constantly affected by it and don't therefore have flare-ups. Again, something I find flummoxing!

I'd like to start a discussion therefore on AS and fibromyalgia to see what others have to say, share, etc

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Bounceee
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29 Replies

Hi there,

I have had fibro for 23 years since I was 25 but was ill before that since the age of 19..... I am not sure what bought on my fibro ...was it the six years of constant illness that ended up in an op that did not go well... Maybe... And maybe this is another coincidence but there are quite a few of us on this forum who have children with aspergers ... I have a son who I diagnosed very early on as I taught children with aspergers and autism in a language unit.. The professionals were a little slower to twig... But fortunately he was diagnosed by the age of 6

Back to my fibro I don't have flares either ... I have bouts of fatigue and brain fog but my pain is constant and continuous daily and with my GP we have worked out meds that just manage it to a constant degree....

So is there a link between aspergers and fibro .. I am actually hoping not because my son broke his shoulder 3 years ago and he still suffers some pain and the drs are baffled... I am so hoping this is not the start of fibro in him..

VGx

My son now 22 was diagnosed with Aspergers aged 13 it is very mild. I really do hope he doesn't ever get Fibro.

I really don't know what started my fibro. My mum died in early 2011 and I had an accident in late 2011, an op in 2009 and had a fair bit of trauma growing up but had good times too so don't really know where it all began I am only recently diagnosed but have had bouts of pain on and off for years but constant for about 20 months.

Sarah-Jane profile image
Sarah-Jane

I don't know whether there is a link, but my work brings me into contact with a lot of aspergers/autism and have no knowledge of any of them or their families having FM or ME. I cannot dismiss it as I don't know enough, but why worry about what caused it? You need to worry about now and your future.

If you are not having flare ups, be grateful but not complacent. They are often linked to over exertion and not looking after yourself properly. Mine are linked to over reaching, pulling a muscle and causing them to react. Flare ups are when you have things worse than usual moving from say a 6 to an 8 or 9.

So look after yourself.

Ginsing profile image
Ginsing

I must be honest an my knowledge about Aspergers is limited to when I taught special needs at college. However I do so agree with Sarah-Jane the time to think about is now and the future, how you takle and look after yourself with Fibro. I agree if you do not suffer flare be thankful so many do. I suffer constant pain and do not have "flare" I manage with medication rest and learning to pace myself. If I have a "flare " it is usually my other problems giving cause for concern. It is like anything we all differ but one thing for sure it doesnt go away we just have to learn how to cope. xgins

charlii profile image
charlii

What I find strange is that there seems to be quite a lot of mums with fibro who have a child with Aspergers Syndrome here....just like me. Coincidence or something more?

Will be interesting to see what people say. Thank you for such an interesting thread xx

JulieN55 profile image
JulieN55 in reply to charlii

I have a 34 year old son with Asperger's ,and I have fibro. Just spoken to another lady who has exactly the same scenario. She has met several people like us.This seems a little more than a coincidence?

ladymoth profile image
ladymoth

I have a son with Aspergers, too. He's very high functioning and managed a 1st class hons degree - but he is noticeably eccentric!

He's 35 now, and has suffered bouts of exhaustion, depression and 'achiness' linked with too much stress, so I'm wondering if he will also end up with a diagnosis of fibro.

In my experience, almost anyone undergoing a period of high stress will start to exhibit fibro-like symptoms, so why do some people get better when the stress stops, and others get stuck with it long-term?

Another mystery which may be solved in time!

Moffy x

in reply to ladymoth

My son is 22 and also high functioning and just completed a 4yr hons degree in computer science he is extremely intelligent but doesn't suffers fools gladly and I tend to be a fool a lot of the time ;-P but we get on brilliantly most of the time and are quite close but we can spark off each other!

Maiseymouse profile image
Maiseymouse

Hi im from northern ireland this has been something i have connected myself many of my friends with fibro have children with aspergers .I have two with aspergers and they are a boy and girl i have aspergers and fibro i only discovered this in my adult years theres very little help out there but i knew i wasmt crazy and ive worked out this connection .Im currently on holiday but when i get back im getting my diagnosis of aspergrrs as il be in a prrfect place to help my kids .God bless you such a relief to hear i knew there was a connection.

NordicNavajo profile image
NordicNavajo

Hi

I have fybro and have developed it since an RTA in 2007. This period in life was especially traumatic for many other reasons (death of father who I was carer for and the suicide attempt by the father of my child) It was all too much. My child has asperges. It took medics and education until he was 13 to diagnose despite constant cries for help (he was also suicidal). I look at his asperges as a gift now, a gift that makes him who he is among other things. He has a similar viewpoint on it. He is developing in areas that if he had "normal" vision of the world he may not enter or notice. He suffered badly being beaten severely at mainstream schooling and missing 3 years of school life. Between us we have what you have in one. I often wonder if I am not on autistic spectrum as I find myself thinking "the more I meet people the more I love my dog" frequently. I don't suffer fools. have grown silently intolerant to the daily abuse that life buckets out and am now pretty much a recluse.

I didn't get flare ups until a couple of years ago when I became bed bound for some 3 months plus losing all body functions intermittently after a bought of shingles which has left me unable to walk very well and in constant pain. I sometimes can walk unaided for a few months and then "it flares up" . I still have a very stressfull life mainly due to eventually losing job and being left in a lengthy court battle for any benefit. I am just getting the courage to re apply after a destroying experience with a beast of a judge last year. I really want to be back where I can move around and have symptoms that although painfull are copable with. In last 6 years I have 10 good months due to wellness plan before shingles took over after being demanded to stop the wellness regime that kept me mobile (its a court thing).

I do thinbk that there may be a genetic link between the two, and as I get older I feel that I probably fit both categories. My son like me is incredibly double jointed with a hypertension rating of 9 (which means he is a bendy boy) I think that there is a proven link between fybro and double joints as it was thrown at me in court in document form. Science knows these links exist but they don't do anything about them. I look at asperges as a gift and fybro as a curse.

Ps thank you for your post, I don't come here often but was compelled to share with you

NN :)

fibrodude profile image
fibrodude

I have fibro and aspergers...as does my brother...we are both now in our forties...I'm pretty sure my mum had fibro but she is no longer with us so I cant ask her.

aura2 profile image
aura2

Connection not sure, abuse not in my case. I believe the amount of people on this site the odds are some will have a child with aspergers, the same as the amount of people that worked for the .NHS or in education etc .I have been diagnosed 25yrs having fibro longer . Abuse no. I had a wonderful childhood and happily married for 48yrs . Although I have had 13 ops. And two whiplash . I agree with those that say .. Finding out how it started will not help one bit concentrate on today staying healthy pace yourself and be positive and happy .. Thought to add to the pot ..my mum , brother his 3 children my son and myself all have had carpel tunnel syndrome is this connected to fibro ( i am the only one with it and maybe my mum ) or genetic? And nothing to do with fibro .

I belive that research shows 85 per cent of us are born with inherited damaged DNA .

Enjoy the sunshine if it is your way .

cherryflan profile image
cherryflan

I have fibro and am hyper mobile. My son is hyper mobile and has sever autism (I believe following MMR vaccine) he is 15. My daughter is 3 and is not vaccinated but also is hyper mobile. I am in pain everyday. I do have flare up's that cause extreme pain. Stiffness like someone poured glue down me and loose of strength (like I can't lift the kettle etc) I suffered sexual abuse as a child. I suffered a slipped disc in my neck, following that I really noticed I had fibro and was diagnosed. Stress doesn't help one bit. Raising children is a worry but raising a special needs child, being concerned what the hell will happen to them when you're gone is even more difficult. This could be a link.

JulieN55 profile image
JulieN55 in reply to cherryflan

That is something I worry about .How my son will cope when we die. I am 63 and he is 34. He is very isolated, very brainy, and holds a good work position in computing but no friends, and will not join a club or do evening classes to make friends.

Walnutwhip2 profile image
Walnutwhip2

I do have fibro but I do not or know anybody with aspergers. I have NEVER been abused. My fibro happened after a long bout of infections called flaryngitis, i also am currently going through a 3 month (so far) flare up, I have had fibro for 19 years & not had a flare this long before but many smaller ones. Is it that being a carer & pushing yourself has bought on fibro or even having to deal with yourself having it, I'm not too sure as I haven't had any contact with it.

Hello Bouncer

I have cfs/me and fibro. I use support groups to help with it. Its amazing how many people I meet through the groups who have AS too.

I've researched a lot into my own condition, as have others. The common factor between me and the AS aufferers seems to be leaky gut syndrome. This seems to create a chemical toxicity that can set off anxieties and behaviours.

I have flairs because I use too much energy and my body complains and slows me down. If I stay away from trigger foods I flair less.

I have had car accidents which gave me the diagnosis of fibro. I've had illnesses that I didn't recover properly from that gave me the diagnosis of cfs/me.....but I am convinced that a badly performing gut came first....

They really don't know enough about these conditions to know 100% what is really going on and why.

I've had major stresses since getting married which could be described as abuse....but I think that's a red herring plenty who suffer abuse don't get fibro. But having fibro allows us to feel and experience pain, both physically and emotionally, in a different way. The gut stores chemicals needed for pain management and anxiety management. These chemicals can be blocked by toxins. This leaky gut scenario is well documented as relevent research into AS.....maybe that's your connection?......just my thoughts though. Doctors and science have yet to prove anything

stressedok profile image
stressedok

I've had fibro, diagnosed at age 19. I'm 42 now. Got older child AS and other problems n other kids are ADHD. Youngest shows signs of fibro..... So is there a link?

mikeymoo profile image
mikeymoo

Hi there, I'm 34 and believe that I have some level of AS but I have't been for a test because I'm scared people will laugh if I make the suggestion. I have always had a problem socialising and would be described as eccentric. I was diagnosed with fibro 2 years ago but I can't say if the two are linked???

ladymoth profile image
ladymoth in reply to mikeymoo

Hi Mikey,

aspergerstestsite.com/75/au...

You might find this site interesting!

Moffy x

mikeymoo profile image
mikeymoo in reply to ladymoth

Cheers Moffy, I did do a test online & scored 36 on AQ stale I think it was. I will have a look at this site as well:-) Hugs x

mikeymoo profile image
mikeymoo in reply to mikeymoo

AQ scale:-)lol

aura2 profile image
aura2

I scored 19 thanx Moffy

Hi

Like you i have it constantly the pain all over serve so bad all i want to do is not be here, i cant walk, im always exhausted and feel like no one ever takes me seriously or wants to know, i feel like im constantly fobbed of by the medical profession who dont even regard it as a disability so i understand where your coming from, good luck jo

zipitydoo profile image
zipitydoo

I was diagnosed 3 years ago with fibro. My 20 year old son has Aspergers, dyspraxia and dyslexia. He has just finished his 2nd year at uni studying computing. He has one more year left then wants to do teaching.

JulieN55 profile image
JulieN55 in reply to zipitydoo

That`s amazing that he can even think of a social career as teaching. Mine is a software engineer ,which seems an ideal career for someone with Asperger.

robpw profile image
robpw in reply to JulieN55

Like fibro the austistic spectrum covers so many people we all function differently

Kirby profile image
Kirby

My brother may have AS though never been diagnosed and also has MS. I have fibro which has a lot of overlaps with MS. But it is interesting that you mentioned Primary Fibromyalgia. It's not a term I've heard before in relation to Fibro but of course with MS there is Primary Progressive and Secondary Progressive. My brother has PPMS and doesn't have flares as such but people with relapse-remit MS have flares. I have this hunch that Fibro, like MS (and probably ME) has similar categories ie primary progressive, secondary progressive and relapse-remit.

trekster22 profile image
trekster22

Welcome I have both and I believe my fibro was caused by abuse, but I also have EDS 3 which can co occur with Aspergers.

There is an established path with hyper-mobility and Fibro trouble is that most quacks don't have enough knowledge about these things& don't join things together just see as one item at a time

Another fact is that many with Asperger's are TG or TG have Asperger's syndrome!(Chicken&Egg thing?)

One thing that it seems linked to is too much Ammonia on the brain which is all of these plus Alzheimer's type.

But there is another link to these with increase in Glyphosate use and GMO crops along with a mirrored decrease in male fertility also now finding birth defects along with heart decease in countries like south america where grown wholesale and sprayed but there trying to keep it quiet/fob off

But many that are very supple go on to have Fibro i used to be able to do the splits/lay flat out behind me after kneeling down/Hook hands up behind back one over the shoulder other round lower down and overlock palms together. plus turn head round far

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