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Aspergers and fibromyalgia

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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I have been treated for depression for two and a half years but suspect I may have fibromyalgia because of trawling the internet looking for solutions to my 'ailments'. Doctors are rightly sceptical when patients self diagnose so I haven't yet found the courage to broach this topic. I haven't got AS (I have diagnosed my husband, and my younger daughter has just had a diagnosis) though there is and has been (I now realise, having done some family detective work) a lot of depression and anxiety in my family, maternal and paternal lines - I suspect there is some interrelatedness of conditions going on. I have only questions myself, not clinically sound answers I'm afraid.

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Hey Bouncee,

I think you have just brought up a topic that a lot of people are wondering. Lots of people have asked this before and wondered this so it's great that you could bring it up though.

First though, I want to point out that my heart goes out to you with regards to trauma you've been through. Regardless of ASD, I have a strong belief that this is a big factor in itself. I'm wondering if to treat this this aspect of it, would it be worth if you went for therapy try address the issues as it seems that lots of woman find this helpful and reduces their symptoms, even though it doesn't cure them. You may benefit from counselling regarding the emotional aspects of being diagnosed with the new conditions, and so late in life. But I understand every one is different and what works for one person may not work for another. It's personal preference and individual differences. I, personally, did have some counselling and it did help to me deal with a few of the hurtful issues in my past. I was going through a terrible flare up which has finally lifted. The ASD, evidently, is going to have a large impact on your emotions anyway and having to live with the personal challenges of ASD, especially without a diagnosis or support, will have had an influence on your emotions and consequently, your Fibro. Even if only indirect. The way in which different factors link together and influence one another is complicated.

The more pressing issue is whether there is a biological link. There is some anecdotal evidence to suggest this. For example, a lot of mothers with Fibromyalgia have children with autism. I suspect a lot of mothers on this site will be in this situation - or new users may find this familiar.

Of course, situation is also supportive of this theory - as is mine. I have both the conditions too. I was diagnosed with autism as a young girl but when I was teen I began to realise something else wasn't right either, I was certain something was very wrong come my sixthteenth birthday, and I was eventually diagnosed with Fibro after a trigger point test.(There is a brief discussion in some of my blogs.)

It's definitely an issue that needs discussing. As the ASD site is still fairly new I would advise you posting the blog on the Fibroaction community fibroaction.healthunlocked....

I am sure many users will so to speak - jump at the chance in responding to you and sharing their story. :)

I hope this helps. :)

Take Care and Kindest Regards,

wanderingwallflower xx

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I just want to say sorry for any confusion in my words. Or any poor word choices, of course a lot of that can be put down to fog. xx

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even though it may not cure their Fibro*

of course, your situation is supportive of this*

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Hi I have AS but I don't have Fibro, I do have alongside my AS a confirmed case of EDSH/HMS & a yet to be confirmed case of secondary Raynauds.

Having a daughter with Autism also I am noticing a trend in that she & many of the other children we meet with at our specialist 'tots group' all seem to have 'auto-immune' illnesses running alongside their ASDs & am growing intrigued as to the relationships between the two. At present the common ones are HMS/Fibro/Hypotonia & I would love to hear more from people on their views/observations of this.

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Hi and thank you to each of you who've taken the time to reply on my blog.

Oenone:

One thing I'd like to say in reply to what you've said, is that if you do ask to be assessed for possible fibromyalgia, make sure you're asking a GP or consultant that accepts it is a known medical condition. It is recognised my the BMA, NHS, DWP etc so don't accept any nonsense from a practitioner who doesn't; they'll waste your time and possibly make you feel worse.

Funkyfairy:

I have had a lot of help with the trauma and with my AS now, though I agree with you that late diagnosis mixed up a lot of emotional responses and created problems in itself. I did however pretty much always have to find my own help, so that's an unfortunate obstacle in itself. I have a friend now who has a GP willing to work with his sensitivities as an AS and also with abuse he has suffered. I recently finally had enough of a consultant at a Pain Clinic that never considered my AS when prescribing medicine and gave me too high a dose each time. Lastly, I'm sorry to hear you're dealing with both conditions but pleased to hear your livliness on your blogs. No mean feat! I'll try add this blog to Fibroaction Community as you suggest too.

Springsong:

Thank you for your observations too. Could you let me know what EDSH, HMS and Hyptonia are? I haven't come across these abbreviations before.

I'm making notes from all your comments and using them to further work out ME!!

xx

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Firstly, to answer your question to Springsong, I would make an educated guess at Hyper mobility Syndrome for the second one. This is where the joints are too flexible and the person is more prone to sprains, breaking bones. Hyptonia, I don't have any idea I'm afraid. Hopefully you'll hear from Springsong soon though. :)

I am pleased that you have had some help and support although I am sorry you had to find your own help, I agree there's little worse than having to go through someone traumatic and having trouble getting the support you need. That happened to be sixth months ago and it's completely completely destroyed my faith in the system (especially as my problems for very much psychological), and came come to knocking my faith in human compassion (but it didn't because I know I can find lots of lovely caring people on here, and I have great friends, I really do, I just didn't tell them about my issues re. AS and Fibro, but they are always supportive when I talk to them about the things I feel able to do). I also want to say I sympathise with your experience with the consultant, at least you realised and took action. I think it's good that your friend is getting support from a willing GP. It would be great if you could acquire the same GP as him. :) And thankyou. :) I like to consider myself as, quite a jolly person really. I think that's the biggest test of strength, not allowing to challenging to turn you into a person that you know, deep down, you're not. I also know that, if that's the last thing thing I have, it will be my personality and my spirit. It's the one thing my conditions don't have control over. :) That's the main thing I've learnt, ever since my diagnosis of Fibro.

Finally, I want to wish you all the best with everything. I'm sure we'll talk again soon. :) xxxx

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something traumatic*

almost completely*

and came close to knocking my faith in human compassion*

Sorry for the mistakes. :) I know what I'm trying to say, it's my 'good ol' friend' Fibro fog. xx

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EDSH/HMS are Ehlers Danlos Syndrome Hypermobility type/Hypermobility Syndrome (sometimes thought to be the same thing) where a genetic defect with collagen within the body makes all the joint tissues more 'bendy' & we are prone to easy bruising, sprains & ligament tears/ruptures.

Hypotonia is a condition affecting muscles & ligaments again where they lack the usual resistance or 'tone' meaning the sufferor is usually very late at learning to sit, stand & walk as they may need extra help/support to do so.

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I'm a late diagnosed adult with ASD. I have four children, two of whom are diagnosed with ASD. I've been doing some research into my own family history and have discovered a considerable history of Autism. Some older members of the family actually being institutionalized in mental hospitals in the 1940/50's with the condition, clearly before the nature of Autism was better understood.

After concerns over the possibility of my having Parkinsons Disease; which my father had, (because of a tremor I experienced along with difficulty with swallowing) and being treated for some years for Arthritic type pain, because of the high rheumatoid factor blood results; but with none of the characteristic red joints, i've now been referred to a rheumatologist who has diagnosed Fybromyalgia.

Previously, pain was often worse in winter, but in more recent years has been Chronic all year round. For me, the pain has been ongoing for many years, but my description of a 'flair up' is when the pain becomes so intense that the meds don't help and the depressive, episodes that accompany such relentless agony, become more severe. The fatigue secondary to the pain, making life extremely difficult to manage. I've suffered frequent falls throughout the years and am now extremely unsteady. My sensitivity to loud noise and crowded environments, I put down to my ASD and has been present since childhood, but their is no doubt that my sensitivity has become even worse in my aging years.

As you mentioned in your post, women seem to be more prone if they have experienced abuse and i was the victim of abuse as a child and sadly, I did also endure a number of abusive relationships in my adult life, so I guess I fit the typical pathology. Trauma; mainly emotional for me, has had a significant effect on my condition throughout my life. Eg. The sudden death of my Brother last year, the sudden death of a former partner, the premature death of my mother and the suicide of my older brother, all taking a significant toll. However, in my aging years even small upsets or increased stress levels can push me into a phase of uncontrollable pain. As an Aspie, I find stress extremely difficult to manage and the smallest concerns can leave me highly anxious. I'm also Dyslexic, so struggle greatly with daily living.

As mother, it's clear to me that my genetic history has significantly contributed to my children's ASD condition, however, my own diagnosis of FM has also brought me to realize that my sons (although un-diagnosed with FM) are also suffering FM symptoms. One quite markedly and he is only a teen at present. This leaves me deeply saddened as I wouldn't wish my level of pain on anyone, least of all a child.

In talking with other adults I know who are on the spectrum, it seems some of them too have an FM diagnosis. I'm not an academic or particularly well educated, but anecdotal evidence seems to point to these two conditions being co-morbid.

I was well prepared for my ASD dignosis, but quite ill prepared for the FM. I'm an owner of a small business, which I run part-time in order to facilitate the care of my ASD sons, but also to hopefully afford them some form of employment in their future, but I'm scrambling for strategies right now, to make my life more bearable in both my care commitments and work life and would welcome any advice, so that my latter years are more productive and that the pain is more manageable.

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Actually, I discovered it is the higher amount of oxalic acid heavy metals that the Autistic face. Search oxalic acid and autism. I take vitamin D to reach a blood level of 50-80 ng/ml (blood level is important and sometimes the I found the autistic like myself have poor vitamin D absorption) , carrots (6 baby carrots) , chromium (from liver or raw kale, but if choosing supplement do not overdo it), and calcium citrate tabs, N-acetyl cysteine and mercury free omega fats. Got rid of the oxalates and heavy metals by glutathione and oxalic acid reductase. Ask your Dr. before starting any dietary changes. I want you to ask yourself when you sun yourself does the fibromyalgia seem to be better???? :) I am a biochemist I know some things thanks to God.

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Please respond to me if you are still suffering from fibromyalgia.

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I realise this is an old thread but the last reply was more recent, is anyone still reading this who has AS and FM. I have a definite diagnosis of AS (age 48) and a tentative one of FM. The psychiatrists dealing with the AS diagnosis were very unsurprised by my pain and chemical/medication sensitivities and said FM in people with very late diagnoses of AS is not uncommon. The nervous system just can't cope with the constant overload of information, smells, noise etc and it becomes 'damaged', the FM stems from that damage. We must remember FM is a condition caused by the way the CNS processes pain and not the musculoskeletal framework itself. When thought of in those terms you realise why living a life with an ASD, trying to fit into a world that is really quite alien would cause the kind of problems that trigger FM. A lot of ASD sufferers are victims of some type of abuse too, we are more vulnerable than your average neurotypical person. Again that psychological damage can affect the CNS and cause Fibromyalgia.

If anyone out there is still reading, I'd love to hear from you, how you're dealing with two conditions that 'feed' each other and what coping strategies you have.

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Hi! I was diagnosed with Asperger's aged 28 and fibromyalgia four years later. I've often believed the two conditions are interlinked. Had no major childhood traumas except for constant bullying. I actually believe the trauma of discovering I was Aspergic triggered the fibromyalgia. Also have depression and anxiety. And possible dyspraxia.

Life is not at all easy and it's hard to keep going sometimes with all this to deal with.

Anyone else got both conditions too?

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Hi,

I have both and dyspraxia so we are very much in the same boat. Bullying is my abiding memory of the education system, I took precious little else away from it. I was seen as clumsy and weird, it didn’t help that I looked weird thanks to my mother deciding I wasn’t allowed long hair (at a time when long hair was the height of fashion) and I wore NHS specs. I didn’t need to have an ASD to get bullied but it helped!

I was diagnosed with Asperger’s in late 2015, along with the Dyspraxia and BPD. Like you anxiety and depression have been a part of the journey, it was a breakdown that led to more intensive investigations as to why I was so out of place in the world taking place.

The Fibromyalgia I think started in roughly 2001, I wasn’t troubled too much by it, it was there and I’d have rotten days but I lived an active life up until 2013, when within weeks I had a nervous breakdown and my physical health hit rock bottom. I had constant pain, something I’d never had before, I was 45 and felt 80. I’d lost my mum the previous year, we’d had to move to a new town (one I hate) and my stepdaughter had left home on bad terms with her dad. I missed my own children who were all grown up but still lived in our old town. I think all these factors just tipped my already fragile mind over the edge and when it crashed my nervous system directly affected the level of the Fibromyalgia. Weirdly it was a mental health nurse who actually mentioned Fibro to me, I had heard of it and can now trace my symptoms back all those years but he said the way I sat made him think it likely - apparently we tend to shift about more than most, clearly because no position is comfortable for very long.

Please try and pace yourself while you’re still young, I know they are undecided as to whether Fibro worsens but I think in people with Asperger’s it does over time. Our brains don’t rest as easily as neurotypical brains do and that causes a degree of fatigue to the nervous system. If you’re pushing physically too then you’re getting a double whammy. My GP says one feeds the other and it’s a vicious circle. If you can do yoga or anything that helps relax mind and body at all, do it, I wish I’d known when I was younger what I was dealing with so I could have approached it all differently. I’m 50 now and I’m on high rate care and mobility on PIP, if one person can be helped by my experiences and avoid ending up this way, I will share any thoughts, experiences etc with you all.

Take care,

Sue

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Call me an idiot ,but what's fibromyalgia?

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