Link with Fybromyalgia?

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Do any aspies out there have relatives who suffer from fybromyalgia, or has anybody heard of any research into a link between the two?

Basically, I'm a 50/50 aspie/NT woman who's had problems with sensory integration all my life. My sister is completely NT, but when she was 19 (8 years ago) she developed fibromylagia. At that time the doctors could only explain it as "sort of like rheumatism or arthritis but for nerves, we think, but we don't know."

She has since moved from South Africa to London, and the specialists there tell her that the latest theory is that it's a neuroprocessing disorder – they tell her that whereas most people have a sort of unconscious sense of their body (my leg is coming out of my hip, it's currently bent, I'm walking now... I don't know what the technical term for this is) her neurosystem is fritzing and has no idea how to interpret this information, so it's telling her she's in pain.

So, to summarise, it looks like rather than two completely unrelated syndromes, we both have miswirings in our brains that affect our sensations.

What I'd like to know is, does anybody else have family members with similar conditions? Does anyone know of any research into a link between aspergers and fibro, or into using treatments designed for the one on people who have the other? I'm really interested in seeing if sensory integration treatments can help my sister - she's in chronic pain.

I haven't heard of a link, but I've heard there's a link between aspergers and low cortisol levels, which can cause extreme lethargy. I have lethargy/chronic fatigue (not the syndrome) but I think it's a symptom of a medical problem that I have.

For those unfamiliar with fibro and what it is:

http://www.fmnetnews.com/basics-symptoms.php

It's frequently misdiagnosed, and doctor's have only recently acknowledged that it exists.

I've never heard of a link between Asperger's syndrome and fibromyalgia or seen any studies or theories about it. However, I have Asperger's syndrome myself and am suspected to have fibromyalgia or something similar.

I've had chronic pains and various other symptoms that resemble fibromyalgia for years, but my doctors haven't really put a lot of effort into finding out exactly what I have. It took years to convince them it's not all in my head, because they kept looking for neurotypical expressions of pain and didn't believe me because I kept a blank facial expression and my monotone voice regardless of how much pain I felt. I finally have an appointment with a specialist in a couple of weeks and I'm hoping he can shed some light on what's causing the pains and the other symptoms I've been experiencing. It would be good to get an actual diagnosis after all these years, so that I can know for sure what I'm dealing with.

Astaut, that's actually very interesting - I struggle with my energy levels and I've been provisionally diagnosed as insulin resistant. I'll suggest this to my doctor.

My mom has fibromyalgia.

2 cousins with fibro.

Me and my mother both have Fibromyalgia. She also has a lot of Aspergian characteristics. I also have Interstitial Cystitis and Hunner Syndrome which some say are on the same genetic marker as Fibromyalgia. it definitely feels like someone turned on the pain dial and now it's stuck and can't be turned off. It's actually painful to be touched.

How is your sister dealing with the pain, what are they giving her for it?

Taupey, at the moment she's basically controlling it with drugs. The new doctor she's gone to has changed her regime - I'll get the details for you.

It's really something to see other families with the same tendencies towards both aspergers and fibro

It's a very common disorder... it'll be common among autistics too. There doesn't seem to be much research on the topic, but it's interesting--maybe there are common genetics.

Sorry for the delay in getting that treatment info. I'm still trying to pin my sister down on it.


Callista, good point about it being generally widespread. I'd love to see some studies being done into whether there is a link or not.

No. The link doesn't exist. It's just a common disorder.

I have both Asperger's and fibromyalgia (since I was 14), but I'm not sure there's a concrete link between the two. I'm the only person I've heard of who has both. Severe sensory issues and fibromyalgia could very well have a strong link, though.

There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.

Taupey, to improve fibro, you need to ...

1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.

2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.

3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.

4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.

5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.

6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!

7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.

They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people.

9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most

10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.

I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.