Hello,

This is my first post, but I've been a long time follower of this site. I joined a few months after John started (couldn't recall my user name etc so made a new one), but had a major set back. I'll try and keep this quick, but it may be of interest to a lot of people on this site.

Background, I'm currently 31 years old, female 5'6. I have always been active, played baseball, hockey, cycling and worked out with weight for the first time when I was 15. I've been heavier set most of my life, but far from obese or anything. Genetically I've always had a lot of muscle and strength for a female. I have a family cottage and at a young age loved to canoe. Six years ago I decided to invest in a kayak and immediately fell in love. My passion in life is kayaking on open water, flat water, rough water, early morning, late evening.....there is nothing cooler in the world that kayaking at midnight with the moon and a full sky of stars. I have a buddy who invested in a kayak as well so sometimes I go solo, other times with him.

In the winter I have an indoor rower and work out with weights, in the summer I ease up on dieting and do mainly outdoor kayaking. The summer of 2005 I was in the best shape of my life, and this is where the story takes a crazy turn.

One of my weekend activities was to kayak with my buddy and we'd stop at this island and hike up a 10 minute hill and have lunch on this cliff overlooking the river. It's a steep hill, but as the summer progressed it always got easier, quite typical. During the summer of 2005 I found it was getting a lot harder, I was sweating more, my quads would ache a bit and sometimes I'd even have to take a little break and catch my breath. I had been feeling very fatigued during workouts a few months before so I had cut them out a bit figuring maybe I was over training.

Then in sept 2005 I started getting a really weird rash on my hands, my knuckles were red, my nail beds were inflammed and my hands felt very stiff. I saw my GP who ran some blood, all seemed well. Then a few weeks later I noticed a rash under my eyes, looked like the dark circles one gets when they don't sleep, but red! I went back to my GP, he didn't have a clue. A week later it started on my eye lids, almost purple. I did some research and soon realized there was a good chance I had an autoimmune disease!! After a lot of reading I went back to my GP and demanded a rheumatologist. In the mean time i was starting to feel fatigue like you wouldn't believe!!! Work was getting really difficult to last an eight hour day (and I work in the government so we're not talking a crazy stressful job!). At this point I had three autoimmune disease it could be.

I got my appointment and had a lot of blood taken. I was tested for everything, lupus, Lyme disease, a whack of autoimmune diseases etc. ALL my blood was normal. But, lucky for me, my hands were picture perfect for a disease called Dermatomyositis (I will call it DM from here on in). It's an autoimmune disease causing inflammation in the muscles and skin. Basically your immune system starts to attack itself, no reason, no cause. One has a genetic predisposition (although there isn't any signs of any on either side of my family) and then either UV or stress or weird infections, can maybe bring it out. I had spent 3 weekends straight learning to roll my kayak in super hot temperatures shortly before the rash started. Maybe...but I'll never know.

Anyway, I got a dermatologist who took a knuckle skin biopsy which confirmed the skin diagnosis for DM. But with my negative blood my rheumatologist didn't think I had any objectionable sign of muscle weakness. Within two months my muscles started to ache like crazy. Mainly my quads and shoulders with other random pains. Going up six stairs felt like i was squatting 70lbs. My body daily felt like head to toe DOMS. But, I could function.....get out of bed, go upstairs etc. They look for a muscle enzyme present when muscles break down, creatine kinase, CK. I had no sign of this, and since I could squat my own body weight during my appointment, my rheum would not agree I had it in my muscles. You can see how annoying and stressful this was, and the fact that i had a muscles disease seem really unfair and ironic after years of working out, eating well and supplements.

I got sooo tired i couldn't work. Took time off, work was really supportive given I was never sick and 29 at the time. I demanded to have a muscle biopsy, given all my reading indicated this was the definitive test. I had something called an EMG test done by a neurologist (they jam electrodes into your muscles and look for inflammation) I passed with flying colors. I had a second one, passed again, meanwhile it's now Dec and I'm feeling more and more sore with every passing day. I was given malaria medication.....helps with the skin inflammation but it did nothing. I wasn't sick enough to warrant predisone and/or immunosuppresants, and I also really didn't want this either. What do you do....

After being off work for 2 months I couldn't take it, I went back to work and with the bonus of a blackberry, a custom schedule and working from home on really bad days, just toughed out the pain. My facial rash looked like I had suctioned goggles onto my face for hours, my knees where red, elbows red, ears red, hands red, knuckles got these weird lumps on them etc. and still head to toe muscle pain. Every eight hours of sleep felt like 2-3, I would overheat doing laundry or vacuuming and I had to crash for two hours after work. The only thing I managed to continue physically was walking my dogs...which was really difficult some days, but I was stubborn and needed to do something.

Eight months after my muscle biopsy request I got an appointment. The results....fully positive for DM. They took a cubic cm from my left quad. I was the happiest biopsy patient ever as I fully suspected it would show up. So, the disease is really rare, 7-10 in a million, and only 10% of these have nothing showing up on blood work. I still have never once had an elevated CK level. My blood is picture perfect. I joined a DM forum, really good people, and soon discovered how bad this disease can be. Throat muscles can crap out for months, making liquid diets the only option, heart muscles can get inflammed, lungs too. Some people can't even get out of bed on some days etc. Wow. The second biggest annoyance is that DM is the only autoimmune disease with a correlated cancer risk. Lovely. I was screened like crazy, had a mammogram scare, but everything was fine. There is a two year window of concern and then after that you're the same as everyone else.

When my muscle biopsy results came in my rheumatologist started finally paying attention to me. I was heading into that appointment to tell him off and get a new one, but he totally surprised me and offered me top of the line treatment. Something called IVIG, intravenous immunoglobulan therapy, instead of prednisone and immunosuppressants, since i was 'functioning'. I was really happy. Basically they blast me once a month for two days with other people's foreign antibodies in the hopes that it gives my body something else to fight and in time it should "reset" my immune system. Lucky, I live in Ontario, Canada and this is covered as it's about 10K a month! In the US sometimes it's an issue with insurance companies as they'd rather see people try the toxic cheap drugs.

I have had six months of treatment and my rash is way, way better. Still on my hands, but whatever. My face is pretty much back to normal and my muscles don't hurt nearly as much. When spring came I started walking my dogs on my buddy's property, so longer and longer, building up the legs. It has been 1.5 years since the facial rash started.

Eight weeks ago i thought I'd start a diet, and incorporate indoor rowing. Surprisingly it went pretty well. Three weeks ago I started weights again, obviously way lower loads than before. I recorded everything I ever did in a log book so I have a lot to reference. I am steadily making nice gains, and so far don't seem to have any negative side effects disease wise.

My biggest problem is still fatigue, I would classify it as debilitating fatigue and I often feel like a narcoleptic, or someone with a flu, that fuzzy headed, can barely concentrate feeling. Three months ago I asked my GP to try me on a drug called provigil, it's a narcolepsy drug with very minimal side effects. He agreed, and this had changed my life. I can take the minimum dose and am able to work a normal day, come home and make dinner again (I love to cook but had no energy for well over a year so you can image what this does t clean eating!) and have a "normal" life. As treatments continue (probably for at least another year) I hope to reduce the need for the stimulant. But, it's a great med, not amphetamine base, no crash at all, just switches off the sleepy feeling, yet I can even nap if i want....very odd, but as I said, to me it's been life changing.

The current results: still normal blood, no CK, eating 2000-2200 cals a day, rowing indoors 5x a week, 2-3 full body workouts (way lighter than before....but making steady progress). In 8 weeks I have lost 9lbs of body fat and gained 3 lbs muscle...gotta love muscle memory!!

Anyway, I've often wondered if my years of supplementation with whey and glutamine, eating clean, high protein basically "saved" my muscles from more devastating breakdown. It's only a theory as there really isn't much research as it's so rare. All i do know is that I'm one of 2 people on my DM board (about 40 regulars) who still has no elevated ck.

I plan on posting my diet and workout shortly, would love some extra input. The one thing i would like to mention is that for anyone who feels non motivated some days and is thinking of skipping a workout....don't! you never know when something is going to happen and you actually can't! There is no worse feeling! Three weeks ago when I was lying on my bench in the basement, all sweaty with my dumbbells, you have no idea who wicked it felt! It's sooo good to be back in the game!

cheers and good luck to all. It's such a nice change to be back reading this type of info and less sicky info, although I'm still a regular poster on my other board....as there's no cure for this disease, you just hope it goes into remission. I have no doubt I'll get there.:tucool:

I respect your ability to deal with trying situations, especially when the medical people are almost seeming to fight against you. I understand the frustration of getting a medical result showing your own body fighting against you.

Sometimes getting whacked with something like this can change your whole outlook on things. Some people go to the positive like you have, others spiral down into self pity.

In my own situation which was nothing like yours, I found staying as active as I could helped me mentally and physically to stay strong.

Good luck. :tucool:

Very inspiring! Thank you for posting your story. It makes me very happy to hear that you can physically and mentally get back to working out after all of that time. What a challenge, it's wonderful to hear how fitness has rebounded back into your life after that struggle. Good for you! :)

Normally, I don't read any post that is longer than about 3 lines because the sad reality is, that I have the attention span of a gnat, :cry: but I am glad I read yours....It is really easy to take your health for granted, and just assume that it is always going to be there.

I also worry about auto-immune diseases. I already have one (Hashimoto's thyroiditis), which I hear predisposes one to other auto-immune diseases. :bang:

Anyway, I am glad to hear that you are doing better -- and I hope your good health continues. :gl:

yeah...the post was definitely long, and I left a lot out! I think the worst was/is having to do a lot of the leg work yourself, demanding specialists and test when no one has offered them. By far there are worst things out there, thank god I'm not a hypochondriac because wow...the internet can be good and bad all at the same time.

I can say that for sure my views on certain things have changed. I used to not really respect "chronic fatigue", use to think it was just lazy people making excuses. I had my eyes opened wide, that's for sure. As well I think one of the biggest issues to over come was the fact that all my life I've been perfectly healthy. I had my appendix out when I was 15, pheumonia once when I was a kid, the odd sinus infection but otherwise a very boring medical history.

The worst issue with this is UV. I have to wear spf 60 all the time, as sun can set off a flare. It's sorta like being the anti-superman....sun wipes me out completely. Since I've seen no sun for almost two years I caved and finally got some tan in a bottle :rolleyes:, and actually it looks pretty decent. I even had the fluorecent lights shut off above my desk at work as I turn pink, it goes away when I get home, but why stress the system out.

The only advantage I have taken was when I finally got the muscle diagnosis. It falls under neuro-muscular, and therefore I could apply for disability parking. I never use it when i'm out shopping or anything, but I can park my car anywhere downtown while at work at any meter for free! So I'm only taking advantage of the city :D. Best part is that it doesn't exprire until 2012, regardless of how I'm feeling. I figure it's like a 10K mini lottery. That's been the only bonus.

I've definitely learned a lot about myself. What's important, what's not etc. I start back on the water next weekend as I'm making my first trip up to the cottage. I've been really busy so that's mainly been the delay.

I think this forum in general is one of the best ones I've seen online. All the people are really fantastic and the posts are all very educational. I will make a point of posting more often.

Congratulations on your diligence :tu: and your rapid recovery. :claphigh:

It just goes to show that even with the best doctors, we all have to learn about ourselves medically. We can;t rely on one doctor to know all possibilities, even in his/her own field since there is so much these days.

And thank God for the internet. It is clear you did really excellent research.

Good for you!!!!

I was wondering where you lived... that your medical plan made you wait 8 months before the muscle biopsy. I find that appalling, particularly with the visible symptoms that made it clear this was no "imaginary" ailment. I presume you are not in the US because any doctor who made you wait like that could get his a## sued off in a heartbeat.....

Good guess, I'm in Canada. Generally treatments are ok, it depends on where you live. I'm in Ottawa, Canada, the capital. Our system here at the moment is terrible! The eight month wait was extreme, but I think my blood being negative had a huge part to play in that. My rheumatologist (the main doc) I really don't like. He's apparently the best in the city. I actually wrote him this huge letter about how it's great he gives me a standing ovation for a body weight squat, but as I was actually squatting for a long time with weights and can no longer do so, that this should be considered. I went on about how 10% can be negative etc, etc. He wrote back that ok, we'll do one, but it has to be done by a neurosurgeon.....thus the wait. If I had different blood results I'm sure it would have been better.

I was going to tell my rheum off when he offered up the ivig treatment. I had researched it and although it carries the risks of foreign blood, sometimes you got to put a bit of trust into screening. It's not blood, it's acutally clear and very manufactured, thus the high cost. The drug options are way worse, but far cheaper. So when he offered up top of the line treatment I decided to give him some more time. I only see him really 3-4 times a year. If I need to deal with symptoms I go to my GP. He know nothing about this, and really hasn't learned much, but he basically sets up all the malignacy screening and prescription items.

It was actually my derm, really nice guy, who freaked and phoned to find out what the issue was. if it weren't for him i would have had to wait longer no doubt.

All in all it was a huge crazy experience. I for sure agree, when things go wrong it's always good to do some research. The strange thing is there were signs for at least nine months leading up to the rash. I was just basically slowing down. Blammed it on aging maybe, I was close to 30..but come on! Then maybe over training, but doubted it.

The autoimmune world is a really crazy place. There are so many worse stories by far than mine, a lot of kids too. There's a junior version of mine and wow.....the things people go through. It's eye opening for sure.

cheers

Wow, amazing stuff. Good for you for being so persistent through all that.... Thank you for posting this-- it's informative and inspirational.

Well, after being off from exercise for so long, then in spring starting my indoor rowing and a few weeks later weights again, this past Sunday I finally got my ass back in my kayak. We went up to clean the cottage out and I had an hour to spare. It was awesome :D

It's been about a year and a half since I've been on the water, which is nuts considering for the past six years it's been 3-5x a week. I zipped across the river in fantastic time, came back and floated in the middle for a while just checking out the scene.

It's Canada day this coming weekend so we're planning on heading up for 3 days and two nights. I absolutely can't wait for an early morning paddle as well as a later evening paddle. Best feeling in the world. I really, really missed it.

cheers:tucool:

One has a genetic predisposition (although there isn't any signs of any on either side of my family) and then either UV or stress or weird infections, can maybe bring it out. I had spent 3 weekends straight learning to roll my kayak in super hot temperatures shortly before the rash started. Maybe...but I'll never know.
This part especially interests me. My brother was diagnosed with Type 1 Diabetes at the age of 4, and just before it happened he got very sick with a virus for 4 or 5 days, and the doctors have told our family that this could be what triggered it. His diabetes gets out of control when he gets a basic stomach flu or something like that, to the point where he has to be put in the hospital for something that might keep the rest of us at home for a few days(This is so they can have him on an IV and be able to constantly monitor his blood sugar). Do you notice any difference when you get sick, do you feel 10 times worse than you did before?

First just wanted to say :claplow: on your persistence and keeping with your exercise in spite of life's challenges. Dealing with uncertain diagnosis for so many months was probably very difficult. I am surprised the doctor didn't do a trial run of prednisone as a diagnostic test. (I know steroids are nasty drugs but if it was responsive to steroid treatment with the rash that would be basically diagnostic for DM as it is not that rare for DM to have normal CK levels.) Then again hindsight is 20/20


This part especially interests me. My brother was diagnosed with Type 1 Diabetes at the age of 4, and just before it happened he got very sick with a virus for 4 or 5 days, and the doctors have told our family that this could be what triggered it. His diabetes gets out of control when he gets a basic stomach flu or something like that, to the point where he has to be put in the hospital for something that might keep the rest of us at home for a few days(This is so they can have him on an IV and be able to constantly monitor his blood sugar). Do you notice any difference when you get sick, do you feel 10 times worse than you did before?

I know this question wasn't directed towards me but I thought I'd give it a shot since I know something about both DM (Dermatomyositis) and DM (diabetes mellitus). It is true that there is evidence that either of these conditions can be triggered by environment factors but the underlying pathophysiologies are quite different.

Most likely your brother's problems with infections is due to diabetic ketoacidosis. Basically fighting the infection changes the levels of insulin the body requires combined with other changes in body chemistry in response to infection this creates a dangerous situation to which the diabetic patient's body is not able to properly respond. So, your brother requires hospitalization and careful monitoring. A similar situation does not exist in dermatomyosisitis per se. As dermatomyosisitis is an inflammatory disease, an infection may cause a flare up of the disease but this would be something quite different than what your brother experiences.

Sorry for my ramblings - I just really like this kind of stuff.

Waj,

I agree with the other poster. Makes a lot of sense. The weirdest thing was that for 1.5 years while the DM was flaring (my immune system was going nuts on itself) I did not have one sniffle, cough or anything. Even when I returned to work during the flu season I could sit with people hacking away and get nothing.

About five months into my ivig treatment I cought my first cold in two years! It was actually sorta nice as I took this as a sign that my immune system had something else to do. I recovered very quickly, 3 days, lots of vitamins, fluids and good foods.

Then it happened again just last weekend. Little sniffly, but I feel fine. So I definitely seem to be returning more to "normal".

Mudphud,

The biggest issue in my treatment was my rheumatologist that didn't seem to believe me. Besides the rash, I seemed fine, blood was great etc. So it was my "word" he wasn't listening to. He put me on plaquinel (malaria meds) for eight months :eek:. They did nothing but were supposed to help the rash.

As the rash got worse my derm did give me a steriod topical cream, but as the worst part was around my eyes, you have to be careful of thining skin. I didn't see much of an improvement, so stopped due to the risk it poses to your actual vision (four years ago I got laser eye surgery, love it, and wouldn't want to mess with that).

Compared to many with this disease, rashes turning into lessions, not able to even get up out of bed or a couch, not able to swallow food etc I didn't have it that bad. It hurt...that's for sure, and caused tremendous issues with daily life, but technically I was ok, depending on how you look at it. Thus we discussed steroids, but at 29-30 I wanted to save them in case something worse appeared symptom wise.

When I found out the results of my muscle biopsy I was ready to give in and ask for pred, but that's when he suprised me and offered the ivig. Much happier with that option. I think too in Canada if you don't really have the blood backing it up and my rash wasn't all over, they hold off on steroids. I am the only person (might be one more) on my DM board who hasn't been on pred. Damn happy about that!!

cheers

Glad you finally got diagnosed. I understand how frustrating it can be when you know there is a problem and your doctor isn't listening. Weakness can be a tricky thing assess in a fit patient. Some of the people on this board would be very concerned if suddenly they could only bench 200 lbs even though that would still be more than average in that person it would indicate a problem.

I'm glad you are getting IVIg it seems to be the best therapy currently available but does often seem to be reserved for patients that can't be controlled with steroids. I wasn't trying to suggest that you should be on predinose only that before a diagnosis is made that doing a trial of oral steroids can be telling. If the symptoms respond to the steroids it indicates an inflammatory disorder and combined with your rash and weakness the diagnosis would be fairly obvious. Steroids are a cheap and easy "test" and a short course of them doesn't carry the risk of too many side effects as long term therapy does. However, if the doctor put you on Plaquenil it sounds like he was suspecting lupus.

My rheum claimed he didn't want to use steroids as I was quite "young". I was totally thrown when he offered the ivig. I didn't expect it at all, as I have read the same thing, it mainly used on people who don't respond to steroid treatment.

He mentioned he has one other DM patient, she'd been on steroids and methotrexate for a few years, started ivig and saw an amazing improvement. Who knows how things would have turned out with a different doctor. As much as he's really not my fav doc by any stretch, he suprised me with this and I went for it.

So, here we are now. It's a tough call too as pred has a lot of side effects, but getting blood products montly comes with risks too. You just try and make the best decision for yourself. So for now, advil on bad days, provigil to keep me going and ivig to treat the DM and I go from here.

:tu:

Wow, I've been a long time lurker and finally decided to create an account just to thank you for you're inspirational story. I recently made the decision for a healthier life-style for mostly the wrong reasons (vanity)

You've giving my will to work-out a whole new perspective.

Thank you

Thanks Saul. I'm flattered that my story made you form an account :) On a good note, after 9 weeks of indoor rowing, and 5 weeks of weights, I had my best workout last night. I went up in weights on every exercise! I started off slowly and I find I'm really starting to make some headway. Since I'm still hesitant to push it fully (like before DM) I'm relying on almost picture perfect nutrition. Something must be working right!

Good luck in your fitness journey, I'm sure you'll find a lot of answers to questions on this site, and now that you have an account there's no reason not to ask questions!

I'm sure you'll reach your goals.

:nod:

Wow, I can't believe how much time has gone by since I last posted. I have checked in a few times, and recently more often, given things have settled down a bit on my end. Here goes an update, I'll try and keep it short.

Left off in June 07, had started getting back into working out, kayaking and my rowing machine. Given the autoimmune disease and the issues it causes with muscles, I was pretty happy with the progress. Then everything exploded and life completely changed…..but not the obvious reasons. My partner and I got a bit of an unexpected inheritance and moved from a townhouse in the burbs to a 10 acre hobby farm, all in a month and a half! We now have three horses, one was boarding already, and then we took her friend as she's older and needed a good home and then we bought a third one because she too wasn't being looked after properly. They are all female and the newer one and the oldest one didn't get along. They fought like crazy, pretty scary too. We put her in a separate paddock and well, you can't have that really, she just seemed pretty sad, they're pretty social creatures. So….in October of 07 I requested a miniature donkey for my bday! I sorta thought the mini horses were cute (seen them at the odd horse show etc) but I was more drawn to the donkeys. My partner is the one that actually rides, I sorta of trail ride. Why a hobby farm then, well I enjoy the work that comes along with it, the extra land, country air etc.

We found a local farmer who responded to our "mini donkey wanted" ad, and along came Simon! He was eight months old at the time and is now 16 months old and although I saw both his parents, they are normal looking short haired donkeys….Simon seems to be really hairy and looks like something out of the Himalas! He's shedding out slightly with the warmer weather, but even the vet and farrier (hoof guy) commented on his coat! Simon was gelded two weeks after we got him (much better for a pet) and the horse he's paired with and he get along really, really well! She's much happier with him. (I have taken photos and have them posted on flickr…..not fully up to date, but it shows most of everything I've mentioned here). The barn was built recently, and the previous owner didn't put the stalls in yet, we spent the winter doing this and it's beautiful….I don't have an updated photo yet. Three box stalls, one is super huge, and a donkey stall :) All black bars, black hinges etc. Looks really nice. We also built a horse shelter right away…there was nothing before. Anyway, we've been there almost a year, made a lot of progress on the property, I made two wooden gates for each fence opening so Simon and his horse, Rayne, can roam the yard once in a while :)
Here's the photo link http://www.flickr.com/photos/10446625@N04/ (http://www.flickr.com/photos/10446625@N04/)

Health wise I'm doing pretty decently. Had a flare up in december, but took a bit of time to relax from work, and it passed. I am still on IVIG for two days a month. Doc was going to try every two months, but with the crash in dec we figured we'd keep it at monthly. Muscle strength was ok, better than most people with this, but not fantastic but my biggest problem was fatigue!!!!!!!!! I approached my GP about putting me on Altertec (Modafinil or Provigil in US) and it has done absolute wonders. It's not a traditional stimulant, like an amphetamine, does something with the hypothalamus to turn off the sleep sensation. Weird thing is I can actually nap on it. I take only half of the prescription…seems to be all I need to be productive during my work hours, able to sustain an eight hour day, and get some stuff done at home.

A month ago I started out rowing again in the basement. The new house has this massive unfinished basement with a room that has a ceiling fan. I set up the gym down there and it's been my best one yet! I also take the dogs out daily and we boot around the acres, sorta of have a trail that we do. It's like owning your own park! In fact it's bigger than the park we had behind our old house! Wicked! For three weeks I've added weights into the mix. I do it in the am….pretty damn early given my commute is 1 hour to work, but so worth it.

I'm really enjoying getting back into it…again, but at least this time I was derailed for totally different reasons. Lots of labour instead of weights….but stone dust certainly, rock hauling and lumber moving counts! The diet was the main issue over the winter…..we couldn't quite get out of celebratory mode :) I've been eating picture perfect cleanly for 7 weeks, with 4 weeks of exercise added at 4 week days and farming on the weekends :) When I added the weights back in to the mix I've started to supplement with glutamine again….I find it helps and really can't hurt given the muscle issues. I still have blood taken monthly, and although I am fully positive for the disease, I still have no sign of muscle enzymes from breakdown in my blood. I remain a 1 in a million stat.

Way longer update than I thought! Oops! Oh, another part I forgot is that I'm on the last stages of getting certified as a sports nutritionist. Not that it'll really contribute to my day job..more for kicks. Love the subject and I love to cook! Combining macro ratios and taste has become a side hobby for me! I have my research paper left and that's it.

Good luck to everyone, on whatever goals you have.

Cheers!