So it's a wheat allergy huh?

About a month ago I visited a Chinese herbal medicine doctor. A week before my visit I attempted a fast of sorts:

Day 1: only juice tea and water
Day 2-4: add veggies and fruits
Day 5: add grains.

Well I made it to day 2 before I had to have some protein! I ate peanut butter.
On day 3 or was 4th of July and I allowed myself a little red meat and rice. The rest of the time I continued my fast.

The dr said no wheat, dairy, sugar, or coffee. I started an herb mix she made for me.

Last weekend I allowed myself some dairy sugar and wheat. My symptoms came back along with a rash on my back. I repeated day 1 of the fast.

Apparently a wheat allergy can explain all of my symptoms from the last 6months. This is according to Wikipedia.

Another article indicated that wheat is the number 1 trigger for migraines when eliminated along with a few other things the migraines disappeared. (this was a study from the 70s!)

Okay no wheat, limited dairy and sugar. And I'm proud to say I've been coffee free for nearly 2months! I feel pretty good too.

Feeling somewhat better

Yesterday I wrote "Finally feeling better. i havent taken my much needed nap in 3 days and im actually feeling like my vibrant self again. Now its time to be productive again"

But I did need a nap yesterday and one today. The eye pain is back and I'm still taking quite a bit of ibiprofun.  Wednesday I saw the massage therapist at Kaiser. She said my back looks like I have scoliosis. great! I guess it's a good thing I'm seeing the physcial physician. I didn't even know there was such a thing.

The good thing is I am not quite as exhausted but I don't want to jinx it.

ANA

Update: ANA is abnormal and my cortisol level is slightly high. More bloodwork was done and I have another test I need to take in order to rule out anything to do with my high cortisol level. I will know the results in 1 week. They are in fact determining if I have Lupus. (Fact: some doctors are retarded especially the rheumatologist I saw today who questioned me on my genetic disorder...I guess Ill be easy on him since it is considered a "rare" disorder.)

The Rheumy thinks its all Fibromyalgia. The GP thinks it's something "mysterious" and sent me a referral to the physical physician to check out my shoulder pain (may be a pinched nerve)

Feeling terrible.

Feeling pretty freaking terrible today. If you want can you please pray for me?


It's a sad day for me because I had to let my supervisors know what's going on. I've forgotten that I changed some session times and have missed them. I really hope I get better soon.


I got one test result back: erythrocyte sedimentation rate. It's in normal range, which although doesn't indicate I'm free from disease or inflammation, it most likely rules out a certain cancer that it tests for. One step closer to figuring it out.


Another test back: Creatine kinase test. It's normal which means I do not have muscle damage. okie dokie.


T4 test is back: in normal range which means it's not a thyroid problem.

New GP and tests

"I have good news. I saw my new GP today and he actually listened to my concerns. Hes taking all sorts of tests and sending me to rheumotology and cardiology. Finally gonna figure this out. I want to feel better already."


NP: "Good! Always get a doctor who listens to you!"


CW: "Yah he even wants me to wait till tomorrow to get my bloodwork done in case he wants to add more."

Sun Sensitivity

‎"(disclaimer: this is a fb vent sorry ahead of time) I hate my body seriously. 20 min in the sun ruins the rest of my night. My head feels like its boiling inside. This is no typical migraine cuz wouldnt the migraine meds kill it?"


TC: "Dehydrated, when I'm dehydrated nothing helps but a nap and tons of water"


NW: "i dont go in the sun for any exposed time, our family is full of skin cancer stay inside its better for you!"


JE: "I know!! :D put an ice pack over your eyes and eye brows, doing this will clear your vision. Heat up a rice bag and put it on your neck and upper back, relaxes the muscles therefore improving blood flow, hot shower will do the same. Another good one is get a neck massage, relaxes your tense muscles and finding the knots in your neck to relax will give it ease and try heading to bed in a dark quiet room, it will remove any of the lingering effects and the associated side effects :)"


CW: "Apparently photosensitivity is associated with lupus... Hmmm..."


CW: "Also i dont know anyone else who gets this bad a reaction from the sun...."


SG: "I was diagnosed with lupus, its extremely hard to diagnose and in most cases not all is accompanied by a skin rash of sorts the meds suck and made me feel worse then the lupus so though it would help to get a diagnoses and you can have a normal day to day life I really hope you don't have it lady and what ever is wrong is fixable with more tolerable meds"


SG: "If hot enough the sun makes me nauseous and screws with my breathing and eyesight but nothing like you are experiencing"

CW: "It doesnt have to be hot. cuz i can handle the heat ok if i stay in the shade."

AS: "I have been having a lot of headaches too lately..I will have to go get checked out..when I get them they get bad the one I got tonight made me throw up...usually I just sleep and they go away"

SN: "Sun does that to me too. I get a headache almost right away in the sun >_< Then you get dizzy and weak. Then nauseous and then you want to jump off the roof of your apt b/c you feel like you are getting slammed in the temple and/or forehead with one of those spike balls lit on fire. It sucks. I'm sorry :( Never go outside w/o sunglasses. The moment the sun hits your eyes it is just a matter of time until the migraine comes."

Vitamin D Deficiency

"Blood tests show I have a Vitamin D deficiency. But I can't find any substantial or sound information on this and it's effects."


SM:"There is a thought that MS can be caused by vitamin D deficiency. Take lots of supplements!"


SR: "My friend (who also has migraines) was also vit D deficient. She noticed a big diff when she started taking the presciption Vit D"


LF: "drinking milk is helpful, there are some brands that have additional vitamin D :)"


CW: "apparently the effects of low vit d levels have more to do with low calcium because calcium needs vit d to absorb properly."


MF: " I have the same thing and low Iron. It's a typical thyroid issue. Ive been tolled that I should take fish oil but don't know why"


MP: "we are all taking a wonderful D3 supplement. It has helped with asthma and that "down" feeling. www.maximumD3.com"

DS: "I wouldn't be taking vitamin d supplements over the counter. Most vitamins if you take an excessive amount, the body will just excrete what it does not need. Vitamin D is different and gets stored in the body and eventually can get to a toxic level."


AK: "Really. I did. I take liquid vita D so it will absorb in my body. By day three my depression was gone."


PM: "Really. I did. I take liquid vita D so it will absorb in my body. By day three my depression was gone."


CW: "I go in the sun for 20 minutes and i wind up with a migraine."


SM: "Drink milk and wear a hat... sorry its been so hard."


SN: "Vitamin D is super important. I take a supplement for D3. Anything that impacts the blood is something to watch out for. Don't take too much of any supplement but there are some things that you should take a vitamin for. I take a multi, D3 and Omega-3. Not a fish oil though. One b/c I'm vegan and 2 b/c when my Gma and mom both got cancer, their Oncologist said NO FISH OIL! Try enriched soy milk too. It has all the vitamins milk has and more. I like the vanilla."

Lymph nodes

"Okay: so as far as my illness stuff is concerned heres what i know. The lymph nodes in my neck are pretty swollen. However all my vitals and cbc counts are good. My TSH level is health and I dont have any liver issues or mono. From what Ive read, I should tak e it easy and rest. If my symptoms dont improve in 2 weeks I'll need to get another checkup cuz it could be something more. In the case that it is serious it hasnt become serious yet. If you have any tips I could use it cuz my neck feels like its on fire. (stayin positive :)"


"ive had a severe increase in migraines too. most i would get was 3 a month now its 8 a month."


"Why would anyone want to fake throwing up and be in tremendous pain? i dont even care if it doesnt show up in labs i dont ever like feeling that sick and really dont wish it on anyone."

thyroid?

Okay its been a bad night as far as my health symptoms go. i looked up where a thryoid is and thats exactly where it feels inflamed and hurts. i had two dreams where my throat was closing and spasaming. The first dream I called 911, the second dream involved a supernautral encounter in a haunted house. LOL our bodies do weird stuff sometimes.


I told my dr today that both my grandma and great grandma have it and she let me get the test however her great tip was "just think positive thoughts".


Oh and she did a quick "depression questionairre" where all the questions about emotions were asymptomatic but the ones about physical health were very symptomatic. and i have major depression so i know thats not what im dealing with right now. she still tallied up the test and said i had "mild depression" lol. shes a nice dr but....common now.


She said my lymph nodes in my neck were really swollen but her explanation was that I'm fighting a virus. I told her my blood count was all normal and she said it must be a small virus. What the eff?! If I don't get better in one week I'm gonna push to see another dr or specialist.


My mono and liver tests came back normal now I'm waiting on my TSH test and Vitamin D.


I forgot to mention that I stopped my rounds of prednisone so my heart palpitations are near gone and my pain in my neck is back.

Here we go again

2 weeks I've been ill. Ok almost 2 weeks. It started off as what I thought was a cold. I would have a hard time sleeping at night. My chest hurts my head hurts. Sneezing etc. I had my neuro apt last thursday and everything checks out normal. (apart from the fact she was seriously concerned I would ever get a brain aneurism due to her little knowledge of EDS).
That night I had a pretty bad migraine from what I thought was being in the sun too long. It took 2 maxalts and a tylonal to let it subside. 3 am I went on a ravenous search for chocolate rice crispie treats and milk. I fell asleep at 5:30.
I had my ENT appointment the next day and he said my sinuses were looking good apart from that I was cleaning it raw... Gave me some atl gel and a round of prednisone.
My BP at the drs was 86/54 or something like that. The temp outside was 99F. I worked from 3:30-8pm. I felt horrible. I went to CVS to check my BP and it was normal.
Couldn't sleep again that night. Called out such from my work on Sat.
Taking the steroids and I'm feeling slightly better. Not sleeping well enough but better.
I'm getting these loud heartbeat feelings in my neck. There's a pain in my chest under my left breast that is radiating up back and out. My hair is falling out somewhat. I'm extremely tired during the day even with 6hrs of sleep and being awake maybe 3hrs. So I'm glad my work is a kind where I can take it easy and still do a decent job and only 2-3hrs in length. Otherwise I'd be more screwed. I'm sure there's other symptoms I'm forgetting but these are the main ones. I hope I feel better soon and I can chalk it up to done weird virus or stress. In the meantime I'm seeing my GP on Friday since I've been having vague symptoms for 4 months now. I found out a few months ago that my grandma and great grandma both have over active thyroids.

Migraines

It all started 2 1/2 months ago when my cat scratched my toe. It was deep, deep enough to get it taken care of by a nurse at Kaiser. Cleaned out and ready to go. Later I was doing something with my wicker chest and got a splinter on my right ring finger. After a week it was still hurting badly and starting to look infected. I went in to the dr again and had it surgically removed, including a portion of my nail. Awesome.

 After that I noticed a strange rash on my stomach. Small rings everywhere but only on my torso and each side, not just one side. I thought nothing of it. I thought maybe it was eczema. I thought maybe it was hives. It was a rash from a virus, turns out. But the dr said there wasn't anything more to it than just a rash and that it would go away in a few weeks. It did.

  Over the last 2 1/2 months my "allergies" have been acting up. Or what I think are allergies. I've woken up with bloody noses a number of times, sometimes daily. I've worked hard to do the sinus rinses, clean out my nose, take allergy mediation, etc. One day a few weeks ago I was feeling rather ill. So ill in fact I thought I really needed medical attention right away. To the ER I go!

  Found out it was low blood sugar. My sugar level was at 60 and the absolute lowest before it becomes dangerous is 70. Great now I have hypoglycemia, which I always knew about kinda but never wanted to really admit and actually never had any proof of.

  Still after all of this my eyes are hurting, a constant pressure between my eyes, a point where I'm not sure if it's my eyes or my sinus. Stupid me, I thought I should try my Flonase again, although I know it gives me headaches.

  Friday, after I tried the Flonase, my eyes were hurting pretty badly, so I thought I would try and see a dr that day. I got a dr early in the afternoon, hoping I would be in and out before I started work. The dr checked my eyesight, 20/20 but because my eyes were so sensitive she wanted me to be seen by the ophthalmologist. As soon as the tech at the ophthalmology department shone those lights in my eyes I knew I was getting a migraine. They dialated my eyes and I went into see the dr. I was about to throw up! She finished her tests and turns out my eyes are super healthy! Which is good news but at the same time, why?! why are my eyes hurting?

  Well I wound up again in the ER, JOY! Given diuladid zofran and benadryl. Still my eyes were hurting. But at least the dr there was able to push my old prescription for Maxalt. It's been a year since I've been able to get it covered. Out of pocket costs 250 for 9 pills! It's the only migraine medicine that works for me. So that makes me happy. No more ER visits for migraines (hopefully.)

  Now the kicker, you know what really really sucks about getting migraines so often? Now I worry about my death, I think great! My death is gonna really really suck. Migraines are the WORST thing to ever happen on the face of the planet. No joke! We should do "Walk for a Cure for MIGRANES" because it really is a living hell.

Badly due update

I suppose I should post an update. It's been almost 8 months!

Well the week before New Years I came down with another sinus infection. One night I had a terrible migraine, the kind that made me be in the fetal position but wanting to be near a toilet at the same time...

Not having a car and knowing not eat else, I called an ambulance to come get me.

Fire department came and as they helps me out to the ambulance I throw up all over the concrete walkway.

At the emergency room I informed the dr that I had taken the following medications over the weekend: tramadol, trazadone, celexa, immitrex, and excedrine. I explained I was worried about seretonin toxicity.

Nurse said she was rushed that night and sent an aide in to draw blood and insert IV. He did a horrible job and even walked out of the room while I had the band on my arm still.

They ordered me morphine and reglan. I told the nurse I was nervous and that I hate taking morphine. He said "what's gonna happen? You're in a hospital."

Heart rate went up to 150 and I started shaking uncontrollably. Both nurses came in and looks worried. One nurse said to me "you need to calm down."

They have me ativan and I ended up falling asleep. My mother came and later told me that the nurse informed her I had a mild seizure.

Can everyone now say "Seretonin Syndrome" and "Malpractice"? Ok good!

Needless to say I will never go back to that particular ER again. I threw out my trazadone and immitrex.

A week later I was in antibiotics and my worries took hold. A friend gave me a ride to the ER where the doc gave me a full checkup just to ease my mind. However after two rounds of amoxicillin I wound up again at urgent care begging for my usual: steroids and super strong antibiotics. Knocked the infection right out!

A couple of things I've found out since:
Peppermint oil is a godsend for migraines. I rub some on my temples and it eases the tension right away.
I have to take a quarter dose of tramadol now since the side effects are too strong for me. Which is totally fine as long as it works.
I recently had a dx of patellofemoral pain syndrome. (pain in the knee) which is obviously EDS related.

And lastly, after years of being the one in the family who has these odd diseases I've been getting family members inquiring about both Chiari and EDS. I guess I'm not a hypochondriac after all! :)

more tests

Got some basic blood work done, turns out my Vitamin D levels are down. Anyways, I went in today to see the doctor and she ordered food allergy tests, a stool test for signs of bacteria in my stomach, and a celiac test. Gonna get my blood drawn this weekend.
Got a new RX for nortiptyline and singulair. And another referral to the neurologist, yay!

ALSO: the bedbug issue was a bit crazy, had to get a stupid RX just to relieve the itching. They are gone now, finally! still getting my apartment back in order :/
and I got a wonderful sinus infection in the middle of all that! steroids and antibiotics kicked that.

spider bites

got more now. 3 on my foot, two on my shoulder and one on my other elbow!. they are definitely spider bites because 1)I've had bedbugs before and their bites and they tend to be smaller and there would be more of them in one area such as my leg or something. 2) I feel a pinch and stinging feeling in the area I find the bite. 3) the middle feels hard and painful but everything around it itches. 4) It scabs over after like 5-6 days. 5) looks like bulls-eye bites where the middle is red and a little white then red again. 6) my mom helped me clean my apartment last week and killed like 5 spiders in the process...

I'm highly allergic to them and it sucks. 3-4 benadryl a night relieves the all over itching, tightness in my chest, and congestion. I still get itchy where the old bites are....

Physical Therapy:
Had my second to last visit with the PT last Friday. We attempted to locate certain core muscles and activate them. (IE clench specific stomach muscles). Realized that even slightly activating those muscles causes tension in my neck. So, PT gave me a few light neck stretches. Basically, he is concerned about the limited range of motion in my neck. Of course he gave me stretches where I look up and I was really nervous about that. But I'm realizing that it's safe now. Its been almost 2 years since my Chiari surgery.

Heat Intolerance:
Last week the summer started...The temps went about 85F. Of course I got dehydrated and ended up sick. Wound up at the doctors office where they gave me IV fluids and tested me for various things. I'm A-OK. My body hates the sun...I got a heat rash on my chest and face, and my body doesn't regulate the temps correctly when it's hot out. So I have to be proactive about that. Wear loose light clothing. Stay covered up and stay out of the sun. Also stay hydrated. I bought some loose long sleeves from Old Navy, all cotton. I'm wearing shorts so my body can breathe better. Also, a desk fan. Bought several Smart Water's because other waters make me want to throw up.

Allergies:
My allergies have been in full swing for a month now. Taking Benadryl and Claritin like theres no tomorrow. Flonase gives me a headache so the post nasal drip is still pretty bad since I don't use it. Due to the issues related, I've thrown up a few times.

Stomach Issues:
This part gets a bit graphic....
I ate lunch about 2:30, threw up 4 hours later. I noticed my lunch in it as well as food I had eaten the night before. Made me realize that I might just have that delayed gastric emptying thing that people with Ehlers Danlos sometimes have... I used to think I had heartburn or something cuz I'm nauseous pretty much every day. I just don't think it's because I have too much acid in my stomach.
When talking to others with EDS I hear a lot that our bodies don't handle some foods very well.


Bug bites:
Bug bites from hell! lol. Something is biting me and I don't know what, but I do know that I'm really allergic to it.




I have at least nine bites on my arms at this point... Needed four benadryl to stop the terrible itching that I have all over both of my arms...If this doesn't get better by Monday I'm definitely needing to have the Dr. give me something stronger...

heat

the heat has been getting to me. its gonna get hotter this week too. came home from work and slept for 2 12 hours now im watching tv with my feet up.

anyone have suggestions for dealing with the heat?

also my ankles and wrists have been unstable for a few days. i've been using my ankle braces and its been helping a lot. i wonder if its from the change in weather...

FMI

For my own information:

Immitrex doesn't really do much
Flonase give me migraines
I hate not being able to just rest my chin on my hand.

Also! I forgot to mention on my last post that I got the Sketchers Resistance Runners. They are AMAZING!!! I can walk the mall, disneyland, or down a few blocks! They are great. It feels like I'm walking on a firm air mattress. You know that feeling when walking where you the ball of your heal shoots terrible pain up and you feel it in all your joints, then your body just feels like collapsing on itself? Yah, don't really get that in these shoes. Highly recommended L)

FB Group

If you live in Southern California and have EDS join the "SoCal Zebra" Facebook group. It's open to everyone.

Lately

EDS:

I've been getting physical therapy since I moved. We've been working on my shoulder muscles. Activating muscles I've never used and relaxing muscles I've used too much. It's harder than it seems. Physical therapy has made a difference but I'm not sure how much difference it will make. Since I need to use the proper muscles in my shoulders to do any other exercises I need to keep up with this.

Also, I've been trying to work on my core muscles. I need to do that more. Both shoulders and core muscles are the basics to exercising. If I don't have those in order I'm in trouble. I've put on some weight and I need to get toned.

I bought a DVD that will teach me Tai Chi. I will get it and try it and then I will post here how it works out. Also, I tried the elliptical machine at my boyfriends gym. As long as I don't work my arms/shoulders it helps me with my cardio. I start at a 2 or a 3 and go for 10-15 minutes. I might get an old school gazelle machine to keep at my place to use instead of going to the gym.

I've told several people in my family about my condition hoping they too will look into whether they have EDS. My sister definitely has it, I think my cousin does as well as my mother. We won't know though unless they actually get the blood work done.

I really need to take my calcium and vitamin D. I don't want any bone density problems later that they say EDS can cause. But, the pills are a pain to take since I get nauseous quite often. I wish they had it in liquid form...

Tramadol has been my life saver lately. It gives me this euphoric feeling that keeps my brain from properly recognizing pain. My migraines only trigger I have found has been pain. As long as my pain is down my migraines go away. Kaiser has stopped covering Maxalt, so I really need to keep my migraines from coming.

My lidoderm pain patches work wonders on my shoulders. I only fear that I will have to use them longer than I really want to. I don't want to keep wearing them throughout my whole life. I really do want to get some control over my shoulders! Very frustrating. At least it's not a pill and doesn't get in my blood system.

Fructose Malabsorption:

This diet has helped significantly. I just avoid things such as bread and apples and turn to things such as rice and bell pepper. It's not too bad since I preferred those things anyways. I had some mishaps with protein bars...oops. stay away from those. Also I ate barbeque chips today, that was a no no.

I used to feel quite often that my body felt depleted of something. Now I realize that is because my body wasn't digesting the things I was eating properly. Now that I'm getting most of my nutrients to stay in my body rather than leave as quickly as it used to, I feel much better. I have more energy to use throughout the day.

I love love to bake. I actually prefer baking to cooking. The only things is now I realize my body can't handle sugar properly. My boss recently made a chocolate cake using yogurt. I ate the cake and felt fine. I'm really excited because this gives me a whole new area of baking sweets that my body can tolerate! I'm a much better baker than I am a cook so this is good news. :)

fructose malabsorption

I realized rather quickly this last year that I can't eat cake. I don't know what is in it that makes me feel sick quickly. I know that I am sensitive to sugar. I have IBS. My stomach gets nauseous and I drink some soda to soothe it. I don't know what to do about it. I also suffer from depression. I found out that fructose malabsorption and depression may be linked. Fructose malabsorption I'm going to look into this a bit more. I've always hated apples because although they are healthy I feel like it has too much sugar for me and I get a headache. I always thought I was hypogycemic but this may be the real issue for me.