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Chronic illness with flareups in teenage girl
heathers
reddon666 wrote in little_details
Time: Now
Place: Capital-city Australia

My deuteragonist is a seventeen-year-old girl with some kind of chronic and occasionally debilitating illness. Most of the time she feels relatively normal (very little pain, etc), but she has episodes where her symptoms get much worse and she's temporarily incapacitated.

The main symptoms are pain (particularly a stabbing kind), nausea, and a general feeling of weakness. She's short, very skinny, and pale, which may or may not be related. She can also have issues with walking and focusing during her flareups.

I'd like it if this was something that could have been diagnosed in childhood or early adolescence and thus have hung over her for years. I would prefer it to not currently be a progressive disorder, but something with a chance of becoming progressive later is fine. A shortened lifespan is also great for the impending-doom factor.

I have looked into...

  • chronic migraines

  • fibromyalgia

  • Crohn's

  • multiple sclerosis

  • cystic fibrosis

and played around with a handful of symptom checkers, as well as scoured tags on this LJ.

Thanks in advance!

I have fibromyalgia and that sounds a lot like my experiences, minus the nausea--although some of the medications I've tried have made me nauseous, if that symptom is necessary you could always have her switch to a new medication whenever you need to bring it on. FWIW my symptoms started when I was 17 and I wasn't diagnosed until my early 20s, but I've had doctors tell me they've diagnosed it in patients as young as 14.

It doesn't come with a shortened lifespan, but when you're told from a young age that you'll be in pain for the rest of your life, the idea of living to a ripe old age can have its own impending-doom feeling sometimes.

Some people can also get nauseous from intense pain...I don't know if fibromyalgis would do it since I don't have it, but I've thrown up from menstrual pain many times.

For that matter, severe menstrual pain fits all the symptoms OP wants. /has just emerged from it

Except shortened lifespan, I guess. Endometriosis looks like it would fit those symptoms very neatly, and carries potential long-term complications for fertility, etc.

yup and said pain can trigger migraines.

*waves hand* I have fibro and nausea that is assumed to come from it. Various gastro issues go along with fibro, and nausea, while lesser known, can definitely be one of them. Also, the above person is completely accurate about severe pain causing nausea. I have nausea-nausea and then I have pain-nausea, which is significantly more severe and not touched by anti-nausea medication.

Your diagnosis age is too young for multiple sclerosis, but Crohn's fits your requirements. It comes with a high risk of bowel cancer later in life so while it's not a shortened lifespan in itself, it's certainly likely for a number of reasons. Many people with Crohn's have malabsorption (which leads to malnourishment) and while her doctor will have prescribed various supplements it's always a juggling act as to what will work, what won't work and what will cause a flare-up. Any kind of childhood malnourishment can lead to short adult stature, and early development of Crohn's could certainly work for that. This link has a good overview of paediatric Crohn's which, as the child is still growing, can have a wider range of effects than adult-onset Crohn's.

Also, it would be nice to see a character with this particular illness - I think it's too unsexy for most writers!

Sadly, I had a friend with MS diagnosed at in her early teens which was ususally young. It progressed very, very quickly. I think however in that case it might progress too quickly to very severe disability (and shortened lifespan) for the effect needed in the story - unless that action is only going to take place over an few months to a year.

Hm. I ended up going with CF, but I'm not totally sure if it fits with the character as well as I was hoping. How fast did her condition progress? The story where she's a main character occurs over a very short timespan, but it's part of a large universe.

It progressed from occasional need to walk with a stick some days and limitations on some hand movements - she either had to have someone chop vegetables or buy ready chopped to, three years later, unable to stand or rise to her feet and and very limited hand movement - able to open and close her fingers but not grasp anything firmly. She could do a bit of typing style movements and reach out one hand a little way. Problems with urination, for her, did not start until the condition had become very severe. There were good days and bad days, early on, and the bad days seemed to come out of the blue - she had a few days where she just woke up unable to move at all (and was in pain.)

There is a lot of individual variation in how individuals are affected with MS so you could choose how it is going to progress for your character from within the various effects that different people experience. Of three friends with MS, there is the friend I told you about, a friend whose sight was affected long before she experienced any motor problems and whose legs were affected much more than her arms or hands, and someone whose hands and arms are affected more than his legs, although he can only walk short distances.

You might find that the attitude to MS and people with MS are different in the UK and US and more positive in the UK, but this would only be based on a few instances. In the UK there is a multiple sclerosis society who have a website here www.mssociety.org.uk.

Hope this helps.


I set your longer comment to unspam -- it showed as 'suspicious' because of the link in it. Sorry about the inconvenience! It did show up in my inbox, which was how I managed to find it.

Originally tried to post a longer reply but it got designated as spam. About 3 years from the sort of symptoms you seem to be describing to unable to walk with very limited ability to move hands and arms. Can also affect sight and urination. Sorry to be brief, but trying to post this again.

Cystic fibrosis is a close fit. Nausea is common and so is low weight because energy is concentrated on breathing. Even if she had a lung transplant in her 20s, her life expectancy might only be another 20 or 30 years.

I have a close friend who has sickle cell anemia, and the symptoms you describe seem to fit well. Most of the time she can participate in normal activities, but some days she's in so much pain that she can't leave her house, and every few months she'll have a crisis that requires treatment in the hospital for at least a week. She also has avascular necrosis of the hip due to the disease, so she can't walk for long distances, climb stairs, etc. or else she'll be in a lot of pain (in fact, she's scheduled to get a hip replacement sometime next month which will hopefully help with her condition).

I'm not sure about Australia, but in the U.S. newborns are screened for sickle cell, so it's definitely a disease your character would have to grow up dealing with. As for life expectancy, right now it's in the mid-40s, which is something I try to avoid thinking about :/

Sickle cell anaemia is not routinely screened for here in Australia, as it's very uncommon, but as more people of African and African-American origin settle in Australia testing is becoming available.

Have you thought about lupus? It may not fit all your symptoms, but it fits quite a bit of what you want.

Systemic Lupus Erythematosus or Sjögren's Syndrome would be a good fit. Shooting pains and/or partial paralysis are possible symptoms, along with exhaustion, photophobia, nausea, migraine, and secondary depression.



(Sorry - it had to be done)

Edited at 2014-08-31 12:28 pm (UTC)

A person can also experience organ failure if things get really bad. That can be quite serious, but there can also be a recovery from such a thing. This could lend itself to good plot twists for a story.

I looked at your main symptoms and actually saw myself there - osteoarthritis. The nausea and focusing issues are caused by the pain, and as hips, knees or spine are commonly affected areas, that causes walking problems.

I have crohns and basically that fits me to a tee - I get all of those symptoms and more, but I look fine and when it's under control I'm (mostly) healthy with very few restrictions in my day-to-day life. I was diagnosed at 13 (I'm 23 now) but I have friends who developed it and were diagnosed in their early childhood (around 4-5).

I often have trouble with mobility during flare ups as one of the common effects of crohns is joint problems - that causes mobility issues, but on top of that I'm sometimes so weak and exhausted that I feel faint and breathless after just a few minutes of standing up and walking around.

Have you looked up Chronic Fatigue Syndrome because that's often seen to be the same thing as Fibromyalgia but others consider it a separate thing so searching that might get you more info.
(Can be exacerbated by various things like overdoing exercise, changing weather conditions, other illnesses like colds and flu; can be debilitating; causes brain fog affecting focus and memory etc; generally has fibromyalgia type pain even if they're not actually the same thing (and from experience I can say the pain can cause nausea) and though in itself it's probably not going to cause a shortened lifespan I've read that people with CFS do have a higher risk of cancer etc so it can impact indirectly on lifespan.)

I'm not sure about nausea, but sickle cell anemia, lupus, or juvenile rheumatoid arthritis all can cause quite a bit of pain, weakness, and fatigue. I wouldn't go with fibromyalgia - it's not likely associated with a shortened lifespan and as far as I know it doesn't tend to be diagnosed in children.

Untreated celiac can cause all of this, and it's not always easy to follow the strict gluten free diet you have to follow for life. The moment you're not in control of your own food, you're basically rolling the dice. Practically any time I eat out at most standard American "family style" restaurants, even if they have a gluten free menu, is a 50/50 chance I will have some kind of symptoms for days. It can affect your social life if you're not doing anything around food or eating with other people. Especially if you're young and highly reactive and have had "accidents" around other people.

Some of the symptoms will be similar to Crohn's or IBS, but not everyone has bowel symptoms (as in diarrhea). My bowel symptoms consist mostly of stabbing pains.

And the neuro and joint pain symptoms can be incapacitating for a lot of people.

Edited at 2014-08-31 04:17 pm (UTC)

seconding the celiac thing too - I'm not (I've been tested for it frequently though) but I AM severely lactose intolerant and like celiac sufferers, eating out is a huge risk and causes stress - crohns and other inflammatory bowel conditions often come with their very own unique dietary requirements which not only change from patient to patient but can also change from day to day or week to week, which is absolutely the most fun you can have in the world ever.

I'm thirding the Crohn's vote.