Chrissy, 20 year old female, 2/16/10

Hi~ this is kind of a question and kind of a reply in one~  when i was growing up in my teens i had the awful leg aches as my legs grew...as i got older into my 20's i was tired most afternoons and would need a nap after work, i just could not keep my eyes open...then the stomach problems started....it seemed slowly over time the different problems that come with Fibro were afflicting me~  then I got a dizziness problem in 95 ~ on 9/11/99 I was at work and could hardly function~ but made it though my shift ~ 9/12/99 was my last day of work and was worse than the day b4~ to me this was the day Fibro hit me like a hurricane....

does this not happen to everyone??  does everyone not get blasted with the pain like a mac truck hitting them??  do some just keep getting the symptoms slowly until they have all the symptoms of Fibro??

My pain was so intense i could not hold onto a 1/2 gallon of milk~ I thought i had ms and was losing muscle tone~ the pain traveled all around my body in the different quad's if it wasn't in my whole body at once....the dizziness that i had with it was so bad i had to go on hands/knees to the bathroom from the bed...it was living hell.  Finally after about a yr to yr and a half that super strong intensity subsided~ it made it much easier to continue to do all the testing to rule out other illness~ which finally gave me the Fibro answer.  Now I'm controlled, except for the once in a while crashes, by my meds.

Just thought id bring up this question of how the fibro hit her~ gradually or like mine- boom!

Hi Cherie!

That is intense! Personally, mine was a gradual thing but it started when I was really young. I didn't realize that all my issues as a kid were all connected until I got diagnosed. All the sudden, it all made sense (well most days!). We can definitely add how she started out with the pains and then all the sudden it was huge flare up! Is there anything else you'd like to add to her symptoms or hobbies? 

Thanks for the input!! Hope you are feeling well! 

- "Faith" :)

The sports that you play may be part of the problem. They are hard on your body and make the fibro even feel worse. I have found that Warm water swimming is a great way to help with the pain.

I know that it is very hard to stop doing what you love to do but in the long run I think you will do much better with pain when you do.

I wish you the very Best, Debby

Hi Debby!

You are absolutely right and in my case, I did need to stop :( it was heartbreaking for me but I eventually got over it... But for our imaginary patient, sports are something that young people often do and thought it should be included. Since real experts are going to be checking out the "patients" and giving advice, it would be good to hear what they have to say about that!

Do you have anything else in particular you'd want to add? Should I add swimming her hobbies? Sounds like a good idea to me!!

- "Faith" :)

Faith~

Thank you for telling me about your journey too~ I have had this since ..well lol ...99 and always thought everyone got the fibro like i did~ like a virus~ but after reading your journey Im wondering if i did not have the fibro yrs and yrs ago and for some reason this was the ultamate crash of crashes?!  I guess I'll never really know

But~ I wanted to say a very big thank you ~ i feel like I not only learned something today~ but I've learned something that I have been blind to and over looked for over 10 yrs now!!!  My dear friend told me of her journey ~ which was more like yours~ Im just so blown away, LOL

Everyday i learn something new~ it makes life so SO cool!

thank you!!

Cherie

Hi gang!

Growing up in the "dog world" and I know Mardy will understand this, the physical demands on the body may not seem to be too stressful but at times, especially in the ring at the shows, the stress was tremendous.  I started training dogs with my Dad (now deceased two years) when I was 8 years old.  I was also a "placed victim" for Search and Rescue practice along with my sisters.  This meant we'd go into the woods and find obscure hiding areas for the dogs to find us.  It included climbing trees, getting in the midst of streams (during the winter as well), hiding in plain sight, you name it, we did it.  When I "complained" of discomfort I was told it was growing pains.

Then 15 years ago next week I was diagnosed with Adult Onset Still's Disease and 11 years ago tomorrow (2/20) with FMS.  Growing pains my butt!!!  So here's what I have to suggest about "Chrissy" your 20 yr old patient:

Do NOT stop moving, however, a cutting down in exercise is highly recommended.  The unfortunate side effect of stopping cold is a complete stiffening of joints and muscles, definitely not something that's desired.  Finding something with fluidity would be recommended but not jolting.  I also highly recommend massage therapy, either deep tissue, hot rocks or shiatsu.  Each of these work in their own way to improve circulation, mobility, and limit or reduce the amount of pain to the touch especially the deep tissue and shiatsu.  The hot rock treatment is for relaxation more than anything else and is just a nice thing to do for yourself.

Though she probably eats well, perhaps a closer look at her diet would be a good idea as well.  Is there enough intake of vitamin D (seems to be a growing problem these days), and is everything being used by her body correctly. Therefore, a hormone and vitamin panel blood work maybe required by the doctor (I hope she has insurance)

For a time there was a thinking of perhaps Malic Acid and Magnesium being helpful for those with FMS but it's something that bares DISCUSSION with a doctor and not to be taken on by one's self.  The combination with certain medications is NOT a good one.  There was also a study in England, I believe, a number of years ago with Bee Pollen but the results varied too much to say that it was helpful.

Though "natural" and organic solutions are wonderful and preferred taking into account how much is absorbed by the body is often overlooked, I'm afraid.  If Faith wants to go as natural as possible she's going to have to do a great deal of reading.  

So do you think I've looked into this stuff at all?

Ellen

Faith...... Interesting one, girl, thanks!  Does she live in the dorms or with family or in an apartment and with or without roommates? 

On a personal note, I had very painful 'growing pains' in my legs as well.  That was in the 70's with the movie Love Story and maybe another one about bone cancer and I didn't think I had bone cancer as I felt fine and people said it was growing pains, but it sure was horrible pain.  I now have gone on to find out I have a really high pain tolerance too.  I have said elsewhere that I had really low blood sugar and almost passing out every time I stood up (which nobody ever did a tilt table test for blood pressure), and my blood pressure then went very low for many years.  It's been up lately, which seemed to go hand in hand with when I was feeling better.

As for Chrissy, the faux patient, I'll tell you what I always started patients with, and that was deep breathing.  As an OT we could work on relaxation techniques and I basically set people up with the overall picture that they were going to need to get to feeling they were in the driver's seat of their health care and today so many people really aren't 'centered'.  They're tied to their computers, TVs, phones, cars, Ipods, Wii, .. on an on.  I'd then teach them that the most important thing was to monitor their fatigue and THAT is the most important thing. 

Not the clock.  Not the # of reps.  Not how much they did the last time and doing more today as they are 'training'.  They are now training to get well, and they would benefit from getting to know their inner doctor.  I'd plant the seed of how to study up on things.  To get copies of information from labs and diagnostic/ imaging, notes of visits, etc. so that they can look up things on their own.  Take thyroid for instance.   If you were to download the hour video about hypothyroid or look up the information somewhere about best thyroid testing, would you know what your labs were?  So then who has the power -- the doctor's office with the chart.  Is that right?  I then would suggest they start learning about ALL the concepts that are right here on Lumigrate.com -- food allergies, full barrel syndrome/ chronic illness, thyroid, supplements, and how to make changes that last.  

To start thinking of their health care as an 'interest' or as a 'job'.  An Interesting Job?  Because of her age in particular, I'd include education sources for studying about brain development, as the frontal lobes are not completely done developing until late teens for most women, early to mid 20s for young men, and there are an awful lot of people of all ages 'self medicating' right now and then that's even more of a concern for those who are in the age where 'everyone is doing it' and the life experience hasn't caught up to most related to NOT.  This was prevalant enough before all the TV shows of spring break and girls gone wild, etc.  It's just insane now, and I speak from the experience of having friends left and right with college aged daughters and seeing what they're having in their lives compared to when I was 20 (30 years prior at the time of this writing). 

I'd be sure to, in my kinda 'hip way', talk about how partying is fun and all that, but it's something that those with chronic medical conditions need to look at differently.  Maybe that percolated up more today because I was just looking at the website for the health education center that I used to work for at the famous party-school I proudly call my alma mater, Colorado State University. I used to be the person the students who got caught with alcohol in the dorms had to come and pay $8 to take a class about alcohol to.  Needless to say that was the LAST way they wanted to drop $8 and they were sometimes quite unpleasant as they had to run an errand to pay me.  I used to tell them to come and tell me if they didn't like the class and I'd see about getting them a refund.  I never had one come back.  I also used to give out condoms in bulk.  And any information about STDs, anything ... a big room full of brochures is where I sat amidst. 

But in general, if I were her OT, i'd be getting her linked up with whatever services she could tap into with her college -- PT, counseling, personal trainer, office for disabled students if she needed anything special and qualified for services.  And mostly try to help per find someone her age who also wasn't going to get to 'be a typical 20 year old'.  I'd try to minimize the # of appointments she had with me so she had more time with the other providers (yes --- generous and ethical of me).  I'd also suggest she keep coming back once a month to me to touch bases and if she didn't have the insurance or money for that, I'd tell her to call me or I'd call her.  I used to tell my patients that I come with a money back, lifetime guarantee!  And they'll call you as long as they need you and once they don't anymore, they're gone.  "Some people come into your life and quickly go.. .they leave footprints on your heart .. and you are never the same" is one of my favorite sayings related to how I view being an occupational therapist / provider to people. 

Here is the link to Colorado State University's counseling/health services Care for Body and Mind portion of their website that has podcasts!  They have one on Nose Breathing, Progressive Muscle Relaxation, Body Scan, etc!  FREE!  And really good!  Here it is!  health.colostate.edu/CounselingServices/index.cfm [11]

I would say keep up with any physical activity that she can still do, because once you stop, it's harder to start up again. She might want to space her running out, for example if she runs an average of 5 miles a day, spread them out, 2miles in the morning and 3 miles in the evening or vice versa depending on how she feels. Also, add more relaxing warm-ups and cool downs to her exercise routines. Her muscles will tighten easier and stay tighter (at least it seems to me) than non-FM people. So, take the extra time to help them relax before and after each run. Swimming as a cool down/ or warm up is a good idea, or even just soaking in a hot tub after a long game of soccer will help. That way she can still enjoy her activities without being in too much pain.

As far as the headaches- I had really bad ones in my 20s because of my hormones and food allergies. I eat a healthy diet, but I never knew until I spoke to an allergery specialist that my headaches were caused from some of the food I ate. For me, I have to stay away from tomatoes- which I LOVE! But if I'm having a stressful day, or the weather is changing, aka my body is already weak, my allergies will act up, so I stay far away from tomatoes.

I have learned over the years that I can eat them raw, but I can't eat them sundried. It's been a lot of trial and error. I recommend keeping a diary to help when you are trying to figure all of this out. Write down what you ate, and then 20 minutes later how you felt (ie-sick to your stomach, light headed, bloated, numb hands, just ok, ect...)

The other cause of my headaches was my hormones were out of wack. I'm on HRT treatment now and if I get a pill with too much estrogen, I can get migraines. I know other people that get migraines from their thyroid levels being off balance. And, there is always blood sugar levels to test too. And, the simplest - is she drinking enough water? Running, school, soccer, AND fibro? All of those take a lot out of you- make sure to drink a lot of water.

hope this helps some people-

Nice job, as always, from Amy!  "Energy Conservation" concepts.  Reminders about stretching and the benefits of warmth to muscles (which is 'inhibitory' to the nervous system (up to 20 minutes, then after than heat actually becomes excitatory when it's over a certain temperature, hence you'll not be able to sleep if in a hot tub too long, for instance).  FOOD ALLERGIES (HUGEST of all topics in many regards as so many people are completely unaware still, which is very unfortunate for them but also reminds us how many people can benefit from good health education and outreach).  Diary/journaling details so you can track and figure things out (and YOU become the central role of your health care team).  And Hormones .... thyroid and gonadal. ( See my previous blog Hormones are Here, about Scott Rollins' bioidentical hormones seminar OR the one about his fibromyalgia talk, from late July ... I'll put a link to those here for your convenience).  Then best of all --   We basically run on water, oxygen and fuel/foods/ nutrients which include sugars, proteins and fats in the right ways.  Naturally, Deirdre Rawlings, ND, PhD as the selected nutritional expert for Lumigrate is a critical piece of the information we have here at Lumigrate as that way we don't have to 'recreate the wheel'.  She's the best I've ever had the priviledge of knowing based on nutrition and fibromyalgia specifically and best of all in the same groove and complementary with my 'homey" and founding naturopathic contributor Christopher Lepisto, ND, whose three videos are on the Videos tab here at Lumigrate.

I'd like to add one additional piece.  I've always said that Myers Cocktails (Vitamin and Mineral IVs) were my 'lifeblood' and I'd not have had a career as an OTR after my onset of fibromyalgia in OT school.  (For more details of what I've done related to fibromyalgia personally, I'm the second contributor in the "Your Story About Your Fibromyalgia" in the Forums/ Fibromyalgia section.  

I have been communicating with Scott Rollins, MD (Lumigrate's 'home boy' MD) about IV nutrition, as his clinic is about to finally launch their program!  (The IMC was started 2 years ago and has had many programs to put in place and this one took this long).  He and my contact, Milton Hammerly, MD (Author of a wonderful book on Fibromyalgia, also one on PCOS and Diabetes), have provided and reviewed a link about this important form of nutrition for those with fibromyalgia, in my experience as a person with fibromyalgia.  Dr. Rollins' protocol at his integrative medicine center is going to include other things which he feels people with FMS need in addition to the vitamins and minerals.  In a nutshell what I heard him say at a seminar was that even with ideal supplementation and nutrition in a person with chronic fatigue/fibromyalgia which is symptomatic with pain and fatigue, the amount the body can absorb into the blood system don't have enough for the cells to uptake, as people with fibromyalgia have a disturbance of how the mitochondria are functioning.  For ME, it was like the IVs were what allowed things to get turned around for me and then I titrated down in the frequency of them to where now I haven't needed on for a very long time.  Well, there have been some days I would have wished to have one but didn't and my body's been able to get through whatever setback it was having and then I'm at an acceptable level with pain and fatigue.  This to me is very simply why it's so important to learn to breathe, get the just right amount of blood pumping in conjunction with getting pure water and air/ oxygen in and toxins out!   (Trying to make it very simple, sometimes that's best.) ~~ Mardy

For more details, here are a couple of links to studies at Yale with NIH/NCCAM funding documenting the benefits of Intravenous Micronutrient Therapy (Meyer’s cocktail):

apha.confex.com/apha/134am/techprogram/paper_134303.htm [16]

www.ncbi.nlm.nih.gov/pubmed/19250003 [17] 

I'm looking forward to REAL and not imaginary patients benefitting from ALL the wonderful information flowing here.  Thanks everyone!

Here are the links to resources I referred to within Lumigrate:

Scott Rollins' Fibromyalgia presentation blog post by me: www.lumigrate.com/blog/fibromyalgia-and-chronic-fatigue-scott-rollins-mds-solving-mystery [18]

Scott Rollins' seminar about bioidentical hormones: www.lumigrate.com/blog/hormones-are-here [19]

I just was reminded of this most excellent contribution by Deirdre Rawlings (link for the full piece below)...

"Bacterial overgrowth and yeast infections are thought to be one of the triggers that cause fibromyalgia and chronic fatigue syndrome.   As the standard American diets (SAD) have grown increasingly focused on processed foods, sugars and refined grains, and our environment is full of chemicals and pollution, this has led to a substantial increase in harmful bacteria in the intestinal tract for many of us.

When there is an overgrowth of too much bacteria, yeast, fungus, and/or parasites inside the gastrointestinal tract (GI) the intestinal lining becomes damaged and weakened.  This permits undigested food particles, disease-causing bacteria, and potentially toxic molecules, to pass directly through the weakened cell membranes and quickly spread throughout the rest of the body.    When this happens, toxins pass through the intestinal walls into the bloodstream and are carried to the liver.  The liver becomes over-worked in an effort to detoxify this increased load of toxins.  To make matters worse, these toxins which are circulating in our blood stream activate antibodies and cause irritation and inflammation throughout other parts of the body plus a host of other distressing symptoms.  In addition, it causes oxidative damage which speeds up the aging process.  It becomes what is more commonly called leaky gut syndrome."  TO SEE WHAT DEIRDRE's details of symptoms and treatment (foods and probiotics), please follow the link to her post in her Forum in the Nutrition Section.  I think this is one of the BIG keys for my problems and now restoration to health.

www.lumigrate.com/forum/link-between-fibromyalgia-beneficial-bacteria-probiotics [21]