Fibromyalgia/M.E. and autism

[Sally44]

I am diagnosed with Fibromyalgia and my son with Autistic Spectrum Disorder.  I am noticing he is getting some muscle/joint pain, only lasting 24 hours, but it is similar to how my conditions started.  Does anyone else have a dual diagnosis or have both within the family?

[Sally44]

I have had alot of success by treating it with diet.  (Having said that I have spent the last two weeks eating and drinking what I shouldn't and I am paying the price for it!).  I am seeing a physiotherapist (who also has FM) and she is also a qualified nutricianist.  Her website is www.tacklingfibro.co.uk.  It mainly involves removing all simple carbohydrates (to stablise blood sugar and stop that crashing tiredness we get).  You have to remove all stimulants eg. coffe, tea, alcohol, sweetners etc (this is to stablise adrenaline type hormones).  You have to eat something every 2 - 2 1/5 hours to help stablise blood sugar.  I also found out I am gluten and dairy intolerant.  But the tiredness has gone, so has the brain fog.  I have alot more energy.  I am not exhausted and in pain when I wake up.  I have energy throughout the day.  I don't have constant headaches and eye pain.  the joint/muscle pain is subsiding.  
Previously it was very difficult, especially around the time of diagnosis.  I could have gladly gone to bed and stayed there.
I think there is some kind of autoimmune thing going on with FM.  I have noticed for years that it somehow involves what, or how my food is being processed, because a couple of hours after eating I am falling asleep.  Over the years I have also developed some kind of allergy or hay fever, allergic asthma, food intolerances.  I feel as if my whole body system is out of whack and it is slowly having a knock on effect on other systems.  
I really need to get a hold of myself and get back on the diet because I do feel so much better on it.  But my problem is I get stuck into something.  I forget to eat.  I get ravenous and I reach for the nearest thing (usually something like the biscuit tin).
I am hoping there is some kind of breakthrough with FM soon, because I would hate my son to be feeling as bad as I did and for no-one to understand what was wrong with him.  I am annoyed at any suggestion that it is pyscosomatic.  And the fact that my son (who is 7 and autistic) is showing symptoms of the disease shows it is real, as of course we already know!

[888mom]

Yes, I do get the rash across my face.  It lasts for about a week.  It never gets bad, though.  And I get it usually due to stress, not sun.  When I spend too long in the sun, I get sick with something like bronchitis, kidneys infections, cold, flu, ear infections, sinus infections... no rash though.  So, for years, the doctors kept saying I did not have any sun sensitivity since I didn't get a rash from the sun.  Hello, if I am getting sick like immune system crashes from sunlight, that would to me suggest a sun sensititivity.  Doctors are well, I'd call them stupid but they're not.... I think they are lazy, a lot of them.  If you don't fit their textbook of what a disease is, then you don't have it, and if you don't fit any of the textbook definititions, it must all be in your head.  I was one criteria short for many many years of lupus, though I had everything else.  Oh, and the skin rashes with lupus, only 90% of the lupus patients have that... so doctors think you can't be one of the 10% who do?  And if they don't see it on you, but you have photos, they still don't believe the p hotos?  Anyways, I finally got some good doctors.  They aren't the brightest in the world, but they care about their patients and actually spend time with you instead of trying to kick you out the door in 15 minutes or less.  Oh, and I am on both a lupus med and a fibromyalgia med... I am taking Lyrica for the pain, which has been recently approved for fibromyalgia.  It knocks a lot of pain out, but I warn you if you aren't on it... it makes you gain weight if you don't watch what you eat.  As long as you keep an eye on it, though, you should only gain 5 pounds initially which generally comes off after a few weeks.  I am also taking plaquenil, which is used for lupus people.  It helps keep my immune system well, not attacking itself.  Before I was getting bronchitis about once every 2 months, every cold that any friend got, ear infections, sinus infections everything... Plaquenil kind of keeps my immune system from attacking itself when fighting off these bugs.  Well, technically, maybe I don't have lupus.  But the rhumatologist and primary care doctors say I definitely have an autoimmune disease, specifically some sort of connective tissue disease, since for the last 15 or more  years, I have had a positive ANA, extremely high SED rate, off and on anemia, joint pain, chronic fatigue, and just bad immunity to illness.  I have had some success with diet as well, for weight loss and for symptom control.  I end up gaining my weight back when the docs put me on a couple rounds of prednizone (steroids).  It's really really frustrating.

It's frustrating because now doctors are saying the fibromyalgia is not an autoimmune disorder.  There is such a confusion on what fibromyalgia actually is.  I think it's also a  catch all for people with some sort of autoimmune disease that hasn't manifested itself completely yet.  That's what my current doctor says.  She says that having a diagnosis of lupus is closer to what I have than a diagnosis of fibromyalgia.  But, in reality, I have some sort of unspecified connective tissue disorder that presents itself similarly to several of the others but not exactly not mixed connective tissue disorder.  It's just really a pain in the butt... I'm moving soon, and I'll have to go through the anxiety of getting new doctors, all over again... so I'm upset about that too.  Many years ago I was diagnosed with Lupus, when I was living in Virginia, and I was on plaquenil back then, and when I moved to Florida, I couldn't get a doctor to agree with the diagnosis and they all said it was in my head, and then I had a doctor in Florida tell me it was fibromyalgia.  I was just happy to be told I had something.  I couldn't get a doctor to refill that plaquenil prescription either, so my health deteriorated a bit not being on it, but I had to be off it anyway to get pregnant.  I'm glad to be back on plaquenil again.  It really does help my body stay healthier.  Also it seems to help my fatigue issues quite a bit, so long as I avoid stress as much as possible.  

Do you have problems raising a child with autism with fibromyalgia?  I find it difficult many weeks.  I have my motherinlaw watch my daughter once a week for 4 hours, and that helps a lot.  But, with the therapy sessions and play groups to get her interacting, it's quite tiring.  My husband has to do a lot at night, and sometimes I'm just so tired after dinner, that I can't even do the whole bedtime routine.  Oh, and then if I try to do too much, I get sick.  Like, the past two weeks we were so busy and I was so stressed and I didnt' get any naptime for me, I ended up getting a kidney infection and bronchitis at the same time.  And it wasn't like I wasn't drinking enough water for the kidney part.  I think it was the stress and not enough sleep did me in.  

I worried about whether or not my daughter might get an autoimmune disorder.  How old is your son?  One of my cousins got rhumatoid arthritis when she was about 10.  Her sister got it as a teenager.  Kids can get autoimmune disorders, though it's hard to diagnose.  I think most people develop them late teens and early 20s.  

[Sally44]

So far the shoulder pain happens once every couple of months (it presents like frozen shoulder).  I have been to the doctor (who diagnosed Fibromyalgia for me, but he says FM doesn't manifest in children).  He said to mention it to the paediatrician.  The Paediatrician diagnosed my son, but has no knowledge of Fibromyalgia.
I will definately take him back to the GP if it becomes more frequent.  I am not keen on painkillers, and found they did little for me apart from give me a headache.
Someone has sent me information about the Marshall Protocol and how that has helped an autistic boy who also had CFS.  I have never heard of this protocol and will mention it to my Nutricianist next time I see her.
I am having some success treating FM with diet.  I don't know if I have been tested for Lupus but I know my symptoms are similar to it.  
Regarding the rash across the face, I do get that, but it doesn't last for long.  Do you get the rash across your cheeks and nose and how long does it last for?

[888mom]

Okay, this is my opinion, and it is only one of many many things that it could possibly be, and I'm only making a comment because i know a little bit about pain symptoms.  If he is getting muscle/joint pain, you should ask his pediatrician to check if he has some form of juvenile arthritis or other autoimmune disorder.  Kids can get autoimmune diseases as well as adults.  I was a teenager when I started getting pain symptoms.  I was have been rediagnosed with lots of things, but at one point had a diagnosis of fibromyalgia (the latest thing the doctors say I definitely have is lupus).  Anyways, autoimmune diseases can be genetic.  You may not necessarily get the same one either.  For example, my mom has grave's disease (autoimmune disease of the thyroid).  I have a few cousins with rhumatoid arthritis.  One of my nieces has type I diabetes (type I is considered autoimmune).  More than half my extended family has some sort of autoimmune disorder, with pain and fatigue symptoms.  Some got whatever they had as kids, and others during teenage to early adult years.

Good luck with your son.  Pain is not a fun thing.  Just make sure if you're giving him ibuprofin for the pain that you give it to him with food.  I remember taking a lot of pain meds as a teenager, and the docs were concerned that I ate enough with the meds so it wouldn't ruin my stomach.  Oh, and if he's going to be taking pain relievers over an extended amount of time, you'll need to run that by the doctors as well too.  Some pain meds affect the liver, some affect the kidneys, some affect the stomach.  They do so less if you take them with food.  



Not to worry you either, but well, anyways, always good to involve the doctor.  He can do a few simple blood tests to figure things out.  Also, it may depend how old he is.  I remember my sister had growing pains in her knees for years, from the age of like 8 onto teenager.  They went away after she stopped growing.