A GTKY

[panicked]

So it seems as though many of us on this board have chronic illnesses. Anyone care to share? 

I'm Celiac, dx last year, strict GF diet 9 months. IBS as well. (I'm super fun.)
I'm also asthmatic and have numerous allergies. 

[kirra]

Ehlers Danlos syndrome Hypermobility type (EDS or HEDS)
Postural orthostatic tachycardia syndrome (POTS)

I have a whole list of diagnoses, but they're a result of my primary illness.


Eta anxiety disorder NOS. 

[beefjerky]

Celiac here as well - dx last year after a lovely bout of DH following my TDAP booster when I was in the hospital after my C-section. Also, Hashimoto's hypothyroiditis dx last year as well. Good year for me. Pretty sure my thyroid meds need to be adjusted because my hair is falling out in handfuls and I'm fucking freezing all.the.time. It's been tough figuring it out though bc I just weaned DS3 so I didn't know if my symptoms were from pregnancy, breastfeeding or weaning. Ugh.

Off topic a little but carrotsmakemefat the only way I was diagnosed with EBV and CMV back in 2009 was with a Western blot. I went for over a year with misdiagnosis after misdiagnosis (and endoscopy/colonoscopy/bone marrow biopsies (those were fun)/ultrasounds/CT's/MRI's) until finally a random PA decided to run the Western for mono. I tested negative on every single mono blood test but the Western showed positive. It was almost funny because it was in the middle of my PhD when I was in the lab running western after western. I could have done my own and figured it out sooner!

[Deleted]

Degenerative disc disease in my spine.  I was doing aqua therapy, and it helped but now the pain started all over again for no reason.

I also have a bunch of random neurological symptoms and lots of fatigue. My hands feel numb at times and my legs don't work like they normally do. I have problems walking, and I feel exhausted doing simple things like washing my hair or walking up a flight of stairs.  My hands and feet are always freezing (they've always been on the cold side) but now even in the heat, they are cold.

I've been tested for Lyme multiple times and I was seeing a neurologist, but she referred me to a neurosurgeon once an MRI showed the disc disease. Neurosurgeon recommended a fusion surgery, but said she wasn't confident that it would solve my issues, and then she just randomly stopped practicing.

It seems like my symptoms come and go. I feel sick for 3-4 months and then feel fine for 1.5-2 months. I've had "relapses" of the pain 3 times now. Last August, January, and again this August. I feel like my body weighs a metric ton.

I guess my next stop is a rheumatologist. I feel really defeated.

[trixiedicksnatch]

Well obviously with my giant post, I have chronic severe headaches. All different types and severity and high blood pressure (unmedicated its generally 160/85 and much higher). I also have GAD and OCD and am dealing with PSTD from having my dd. 

My new med plan has been working great so far but for some reason my blood pressure is reacting really weird. My systolic is hanging out between 107-127 while my diastolic has been getting higher 89-102. So that's weird.

Ive been in counseling for a few months now to help with the mental health stuff and its been helping me deal with my issues in a much more healthy manner. It took me a long time to finally throw in the towel and admit that I needed real help. I still have lots of bad days and nightmares, but things are better than they were.

I am glad this board is here, and I hope for better days for everyone 

[panicked]

Aug 19, 2014 1:35:44 GMT -5 trixiedicksnatch said:

Well obviously with my giant post, I have chronic severe headaches. All different types and severity and high blood pressure (unmedicated its generally 160/85 and much higher). I also have GAD and OCD and am dealing with PSTD from having my dd. 

My new med plan has been working great so far but for some reason my blood pressure is reacting really weird. My systolic is hanging out between 107-127 while my diastolic has been getting higher 89-102. So that's weird.

Ive been in counseling for a few months now to help with the mental health stuff and its been helping me deal with my issues in a much more healthy manner. It took me a long time to finally throw in the towel and admit that I needed real help. I still have lots of bad days and nightmares, but things are better than they were.

I am glad this board is here, and I hope for better days for everyone 

I dealt with gad and OCD tendencies in the past. It sucks. I'm so glad therapy is helping you. I still have bad days (mostly nights actually, Hence the fact that it's 3am here and I'm posting). I hope you can get your bp figured out and continue healing.

[TrickyBob]

I have circadian rhythm disorder, my body cannot register night from day so I sleep at all weird hours. There is no medication fully tested in people who can see so I can only try OTC medications.

I have a lot of GI issues which need to be tested and taken care of.

Both my rotator cuffs have tendinitis and I have lower back lumbar problems.

I read this board secretly but I suppose now I will participate.

[beefjerky]

Aug 19, 2014 3:25:55 GMT -5 TrickyBob said:

I have circadian rhythm disorder, my body cannot register night from day so I sleep at all weird hours. There is no medication fully tested in people who can see so I can only try OTC medications.

I have a lot of GI issues which need to be tested and taken care of.

Both my rotator cuffs have tendinitis and I have lower back lumbar problems.

I read this board secretly but I suppose now I will participate.

Just to be clear, I'm liking that you're going to post on the board and not secretly read it

[caramia]

I've posted some on the IBD Support Board, but it's super slow... and I like reading about other diseases/illnesses.

I was diagnosed with Crohn's disease in 2009.  Since then, I've had 4 colonoscopies, an endoscopy & a bunch of CTs.  I also have a Crohn's-induced arthritis, so I feel super old most of the time.  At one point I was diagnosed with fibromyalgia, but I'm pretty sure that was just the arthritis (no swelling, so it doesn't look like normal arthritis).  I also have problems with muscle pain & headaches, a suppressed immune system from the meds, and sleep issues. 

If you have to schedule a colonoscopy, let me know.  I'll tell you my secret method for making the prep less terrible  

[panicked]

Aug 20, 2014 17:42:35 GMT -5 caramia said:

I've posted some on the IBD Support Board, but it's super slow... and I like reading about other diseases/illnesses.

I was diagnosed with Crohn's disease in 2009.  Since then, I've had 4 colonoscopies, an endoscopy & a bunch of CTs.  I also have a Crohn's-induced arthritis, so I feel super old most of the time.  At one point I was diagnosed with fibromyalgia, but I'm pretty sure that was just the arthritis (no swelling, so it doesn't look like normal arthritis).  I also have problems with muscle pain & headaches, a suppressed immune system from the meds, and sleep issues. 

If you have to schedule a colonoscopy, let me know.  I'll tell you my secret method for making the prep less terrible  

I have none planned, but I like to file things away in my "Useful tips for later" file. SO... spill it!

[orangeglow]

I keep forgetting about this board, but saw this and wanted to post!  Hopefully it will help me remember.

I had severe acid reflux disease.  At one point they counted 21 active ulcers in my esophagus.  My esophagus also does not perform peristalsis and my stomach has a higher than normal acid content.  SO they did a toupet fundoplication which is a 270 degree wrap around my esophagus instead of the nissan fundoplication which is the full 360 degree wrap.

While in for the surgery they repaired a small to moderate hiatal hernia.

Within a year I had a chest x-ray for an unrelated reason.  Showed a large mass in my chest.  It ended up being over 70% of my leftover stomach. It was deemed a severe recurrent paraesophageal hiatal hernia.

They went in to repair it and used human skin tissue to bolster my fragile diaphragm.  I got regular check ups using a CT scan.  Within 3 years the paraesophageal hiatal hernia was back.  The next surgery will involve full open chest (the last two were laparoscopic) with removal of scar tissue and possibly some if not all of the human skin tissue.
With all of these internal changes I suffer from either diarrhea or constipation almost constantly.

I don't digest certain foods properly and I get full really quickly.  

I was told to get pregnant now if we were planning on trying because they aren't sure how fragile things will be post surgery.  I am extremely young for this type of recurrence without a traumatic injury.

The less fun or interesting things - I've had a bilateral breast reduction to help with my double scoliosis.  Diagnosed with manic depression and currently on anti anxiety and anti depression meds.  Arthritis in both my hands as well as my left knee.  I've had skin cancer (NOT melanoma) twice.  TMJ in my jaw.  Really I have a 90 year old woman's body.  I'm 32.

[greenscreen]

I have Crohn's. Pretty similar to caramia . I have peripheral arthritis related to IBD and residual issues from taking high doses of prednisone.
Taking (many) medications and monitoring my diet has helped immensely, but managing it is still a balancing act.

[peachykate]

I have arthritis in my lower back, hips, and feet. Plantar fasciitis in my both feet, although that only acts up in the summer when I wear inappropriate foot wear :/ Ganglion cysts in both wrists which fill up with fluid when I lift things and then cause pain in addition to arthritis in that area.

I had shingles and was later dx'd with fibromyalgia when the muscle pain did go away after the shingles, now my rheumy says its only mild fibro and most likely just osteoarthritis from being a high level gymnast at a young age. I do still have some unexplained muscle pain but it's nothing like the few years following having shingles. I also always push for further testing because at first they just wrote my hand issue off as fibro but the hand specialist took one look and saw the cysts before he ordered the x-ray.

I also have gastroperesis, so my food digests mega slowly and gives me acid reflux, IBS like symptoms, and hyperemesis when I am pregnant. There, of course, is no cure so I try and manage it with diet and acid reducers. The real major bitch to the stomach problems is that I can't take anti-inflammatories for the muscle pain so a lot of the times I just end up taking nothing or putting on a lidoderm patch which only does so much. Not looking forward to winter at.all.

andplusalso endometriosis and interstital cystitis, but those are both pretty under control with birth control and diet

Not shockingly I also have GAD/OCD. I now take Cymbalta and it has been amazing for that and some pain control.

[Alex]

I have typed this out like 3 times and deleted it because it made me sad. Trying again.

PCOS/infertility
Recurrent pregnancy loss
Blood clotting disorder caused by a hereditary gene mutation (most likely cause of pregnancy losses)
Hashimoto's thyroiditis
Type 1.5 diabetes (autoimmune)
Tachycardia
Nocturnal seizure disorder 
Car accident damage: deleted because I forgot that I am under surveilance. Oops!
Chronic insomnia

I think that's it. I tend to remember based on pills I take each day. 15 pills, 4 injections. Living the dream!

[bcv513]

I have Crohn's too. It's mostly under control at the moment. I also have asthma and migraines, but I've had those for as long as I can remember, so they don't feel like a big deal for me.

[caramia]

Aug 20, 2014 18:59:03 GMT -5 panicked said:

Aug 20, 2014 17:42:35 GMT -5 caramia said:

I've posted some on the IBD Support Board, but it's super slow... and I like reading about other diseases/illnesses.

I was diagnosed with Crohn's disease in 2009.  Since then, I've had 4 colonoscopies, an endoscopy & a bunch of CTs.  I also have a Crohn's-induced arthritis, so I feel super old most of the time.  At one point I was diagnosed with fibromyalgia, but I'm pretty sure that was just the arthritis (no swelling, so it doesn't look like normal arthritis).  I also have problems with muscle pain & headaches, a suppressed immune system from the meds, and sleep issues. 

If you have to schedule a colonoscopy, let me know.  I'll tell you my secret method for making the prep less terrible  

I have none planned, but I like to file things away in my "Useful tips for later" file. SO... spill it!

Haha, ok: if you can, get the Prep-o-pik prep. It's only like 5 8 oz glasses, instead of a gallon jug of laxative. It works faster too. If you have the gallon jug, keep it on ice (keep a cooler near the bathroom) to make it easier to drink.
Ask for Zofran. Puking during prep is awful.
When you start having liquid BMs, alternate wiping with toilet paper & wet wipes. You won't need the wet wipes yet but it'll save your butt. Keep a squeeze bottle of warm water nearby to act like a bidet towards the end of the prep.
Set a timer on your phone & stay on schedule with taking the prep. If you don't get cleaned out all the way you'll just have to do it again later. Don't expect to sleep. Don't wear nice underwear or a thong. I usually fill the tub with blankets and pillows & just hang out in the bathroom with burning candles and lots of easy to read magazines.

[panicked]

Aug 24, 2014 23:06:42 GMT -5 caramia said:

Aug 20, 2014 18:59:03 GMT -5 panicked said:

I have none planned, but I like to file things away in my "Useful tips for later" file. SO... spill it!

Haha, ok: if you can, get the Prep-o-pik prep. It's only like 5 8 oz glasses, instead of a gallon jug of laxative. It works faster too. If you have the gallon jug, keep it on ice (keep a cooler near the bathroom) to make it easier to drink.
Ask for Zofran. Puking during prep is awful.
When you start having liquid BMs, alternate wiping with toilet paper & wet wipes. You won't need the wet wipes yet but it'll save your butt. Keep a squeeze bottle of warm water nearby to act like a bidet towards the end of the prep.
Set a timer on your phone & stay on schedule with taking the prep. If you don't get cleaned out all the way you'll just have to do it again later. Don't expect to sleep. Don't wear nice underwear or a thong. I usually fill the tub with blankets and pillows & just hang out in the bathroom with burning candles and lots of easy to read magazines.

Good to know! When I did mine, I used the Fleet prep, which was just a very small bottle (6oz, I think) of the mosst salty liquid I have ever tasted, a suppository, and two laxative pills. The liquid was drank in two doses, the pills before bed, and the suppository right before I left for the hospital. I had never heard of the crazy amount of liquid one until way later. 

[cinnamoncox]

Just noticed this board. Yay!

I have wicked anxiety, generalized and some incident specific.
OCD (an anxiety related disorder)
Unmediated ADHD, the meds exacerbate my anxiety worse than I thought possible.
Migraine disorders, both with and without visual auras.
And a chronic back and neck problem from a car accident.
And disordered eating, which is honestly the least of my worries/problems at this point.
I'm prone to depressive episodes, not sure it's full blown depression.

[katie]

I just discovered this too and at a time where I'm feeling pretty down and anxious. I have interstitial cystitis (chronic bladder disease). Depression and anxiety mostly controlled by meds.

I've been diagnosed with GERD and stopped my meds a couple months ago when I ran out. I'm so disgustingly nauseous, having diarrhea and constipation in like the same day. It's flaring up my anxiety because it was never this bad. Every flare up I guess has just gotten worse. I'm calling the doctor tomorrow but I'm just worried.

[Deleted]

Hey-yo. Well. lol. Here is me. (I just discovered this board BTW)

Lyme (battling for about 3 years, currently in a new flare )
Celiac - super sensitive
Meniere's/BPPV


Due for multiple allergen testing, both environ and food testing in a few weeks. I hate my body right now. Grrrr.

[macchiatto]

MS
PCOS
Issues with low blood pressure and hypoglycemia that crop up off and on
Had prediabetes, reversed that, but it's something I keep a close eye on. Both parents and both grandmothers are/were diabetic (Type II) so some serious genetic loading there.

[Waffles]

Hypothyroidism - been working on getting medicine figured out for nearly 10 years. Still haven't found a medicine or dosage that works. Because of the thyroid disease, I've got horrible fatigue. And it's probably the cause of all my other problems, too.
Social Anxiety. I'm afraid to make phone calls. Afraid to message/text some people. All weekend I just shut down because I know I need to contact some people right now, and I'm freaking out.

[phoenixrising]

I guess I will chime in, although I feel like I have nothing going on compared to some of you...

I have an eating disorder (ED-NOS...mostly compulsive overeating, interspersed with periods of severe restriction), IBS, and depression with anxiety (which I am medicated for). I also struggle with a lot of compulsive behaviors.

I can control my GI symptoms by following a lower carb diet (like when I did the Whole30, my body felt amazing), but restricting in that way usually feeds my eating disorder (so when I did the Whole30, it led to some pretty significant binge eating), so I sometimes feel like I am on an endless loop.