houswoea

Thank you for your help! I have lots of GI problems, EDS joint problems, chronic pain, fatigue, ECT. I'm hoping it qualifies me for MCAS so I can try a new course of treatment to help that. And maybe the POTS could be tamed too!

Okie doke. I don't know if my testing is negative or positive and it is driving me up a wall. My Prostaglandin D2 level in 24 hr urine was 4389. The reference range says over 5205 is mastocytosis, but I don't know if I could still qualify as MCAS with something on the higher side, but under 5205. Other testing was negative or borderline. I was not flaring at the time.

I'm having some real problems with my stomach, and it's getting worse and worse! I recently had a transit study and pelvic floor tests (pelvic floor is okay). Since I wasn't allowed any laxatives, everything just completely stopped. Long story short, it's been weeks since I had a real BM even though I've drunk two full colonoscopy preps (miralax, dulcolax, magnesium citrate). All I'm getting now is water. I'm in a ton of pain. Please help if you have any ideas. I'll be talking with my gi doc from mayo next week. Thank you!

Hi, I did not find a thread discussing this... I started cymbalta for chronic pain and anxiety three weeks ago. It has helped both of those, however my pots is getting out of control. I'm hoping my body will get used to the med and stop reacting this way. Any experiences in this area! Thanks. On the bright side, I am remembering how good I am at typing while laying down.

Hi there, I have had pots with severe fatigue and chronic pain for about five years now. I basically gave up hope anything would work and that I would forever live a half-life. I went to the mayo clinic about a month ago because the chronic pain was unbearable. They gave me some mirtazapine (remeron) to try. And let me tell you that it has been a miracle medication. After about a week and a half the sleepiness side effect went away. I still deal with the hunger side effect, but gladly do so as it has given me my life back. I can actually do things with friends and experience life and even excersise. I wanted you guys to know. The Lord is good! Elizabeth

Guys, I know I say this like every week. But I'm reaching the end of my coping skills. It hurts so much. I don't understand how I can live the rest of my life like this. The pain is just too much. I know, wahwah. I just wanted to express that to somebody out there.

Hi again. I'm writing another post about pain. I'm on 3500 mgs of gabapentin and it's just not enough. Other narcotics impair my ability to drive and responsibly work with kids. I'm looking for something that could tame my crippling pain so I don't lose my job and could possibly have a social life. I see my mayo case manager in a few weeks and he is open to ideas but I have no ideas. So I'm wondering what is working for the rest of you? -Liz

I'm asking another question. I'm having swallowing problems, mostly with drinking and also just swallowing saliva. I start coughing and choking. Anyone else? Anyone? Bueller?

Hmm. I don't know if I had a small fiber test. I know that my feet have neuropathy, but I don't know about anything else. I gave up this morning and called my doctor at the mayo clinic. Maybe he will help me. I tried the diet once for six months and once for two. I plan to try it again soon. I think my sadness is a side effect of the nuerontin because I'm really depressed and emotional and it started with the increase in nuerontin.

Thanks guys! I think I did the neuropathy testing three years ago... Where they put those stickers on you and shock you? And the fainting is just pots, im sure. I tried cutting gluten, dairy, sugar/artificial sugar but it didn't make a difference. I plan to just keep looking into treatment options. Thanks for caring.

I'm in so much pain, friends. I applied to the chronic pain clinic in st Paul because my primary is afraid to help me. They don't want to take me because I'm complicated. My primary said just go up on the nuerontin until you feel better, but at about 2000 mgs, I start passing out and it's not much relief. I'm afraid I'm going to lose my job because I've used almost all my sick days because I can't stand up because my pain is uncontrolled. I have such bad spells where it hurts so badly, I pass out laying down up to five times in a night. I've done the dieting and attempting to excerisise, I still see a chiropractor and nutritionist. I don't know what else to do and I'm sad.

I like it. It helps me sleep and i don't find it makes me worse.

Hello, I am wondering if it would be worthwhile to see a chronic pain specialist. I worry they will assume since I'm young that I am not worth treating. Anyone have success with these specialists?

In the summer of 2010, I fell and hurt my shoulder. In October, I finally had all the tears surgically repaired, I completed physical therapy in march. All the suddenly the past few weeks, I'm having the same pain as before the surgery, and the movement and clicking and instability. Are there any other options to help heal my shoulder? My doctors can't give me any options. I know I've read about this problem here before, but I can't find the posts.

Someone else had mentioned doctors could no longer prescribe it. But I got it from my doctor at mayo so I figured it's probably okay. I'm still very leary,and I haven't taken it yet. It's just so hard to schedule when I have a job. I can't just miss stuff like when I was in school.

Hmm, that is interesting. Thanks!

Hey friends! I had my IUD placed seven weeks ago. I was both spotting and having two heavy periods in that time frame, so when I went to the check up the doctor asked that I get an ultrasound. She also said I should take another form of BC in addition to the IUD. Because my PMS has been INSANE lately (pain, matted hair, mood swings, and of course the POTS issues), she said yaz might be the best. The people on facebook said to burn it with fire because it's a terrible idea. Any input here?

Hi everyone! Trying to decide if this is a problem or just new. For about a month, at night I will be sleeping when I dream I'm drowning or falling or crying really hard or running and it will wake me up.... It feels like I have been holding my breath, but my heart isn't racing, it's just thumping really hard, very slowly. I mean, I've had six million ECGs, once upon a time I had a sleep study. No arrythmias (just pots). I'm not stressed about anything, so I'm thinking that maybe it will just go away.

They've done a ton of research... it's never been connected. Personally, I've seen some kids get better from diet changes and limiting chemical exposure, that's where I would link it. Underlying predisposition/condition, chemical environmental triggers. In some cases, not all.

I've always been told it's a genetic predisposition with an environmental trigger. With the new revisions to the DSM, mild functional autism may not be enough to qualify you for a diagnosis. Sometimes occupational therapists can help you learn to cope with stimulation and sensory issues though. However, I have EDS and severe LD. I have often thought there may be a connection between learning difficulties of all kinds and the types of issues we struggle with here. Along with autism, I have heard about many learning challenges (sensory integration issues, ADHD, LD, ect) mentioned here. As an adult, I don't find having a diagnosis helps much. Though technically I can claim reasonable accommodations from employers, I don't tell them, Well, except for my medical accommodations, which I need on occasion

huh. Interesting. I'm just gonna hope that it doesn't happen again and that my system somehow re-calibrates and stops freaking out I'd hate to cath. it's scares me.

Hey all, Wondering if you've had a kidney infection before, and also wondering how it affected your dys. Thanks! Liz

I'd just like to say that it's really hard to tell the difference between really bad pots days and actual illnesses. It's hard to decide when to see a doctor and when to go on as usual. Any strategies?

We really have no idea. For a while I cared, but now I just want it to stop. My gyn is at mayo, so they're pretty darn good

Wow! That is incredibly encouraging!! Thanks so much for your input!