Been having extreme abdominal pain, seem to be going in circles at the doctors

Teenaged daughter struggling the same with chronic right sided abdo pain (like appendicitis, cramping every 20-40 seconds constantly), that fluctuates lightly in intensity (from rolled up in a ball unable to get up for days to able to bear it and sit or go to school under pain meds, but never gone), tachycardia, POTS, chronic fatigue, myalgia, nausea, headaches, migraines at times, facial flushing, sweating, striae from top to bottom, body temperature fluctuation not cycle related, hypermobile ....

Only diagnosis: EDSIII AND copper poisoning.

POTS, EDS, Mast cell activation are all linked together.

They don't know which way around, but they are linked by statistic.

(new study in 'Nature Genetics' Dec 2016 article about tryptase is highly interesting and I wished we could do that genetic testing for duplication or trippling of tryptase allel, One Gene Mutation linking three mysterious, debilitating diseases)

I have to say though for her warmth helps more than cold.

An emser salt bath quite good, but not getting rid of pain, but one point lower (out of 10).

But people can have as many diseases as they like, is one very true saying.

So having EDSIII collagen issue (and dear collagen sits everywhere) can be the answer

(since it is a multiform manifestation disease and no EDSler is the same than another EDSler)  

or

you simply have something else unrelated (and treatable!) to it.

So your symptoms need an as deep investigation as any non-EDS person. But being prepared nothing might be found = helped.

Celiac on thing to exclude for example. Or sugars if they can't be digested well. Instead of one breath test after the other, during a colonoscopy the enzymes can be tested in a biopsy in one go, too. (lactase, maltase, fructase...)

For us the impact of being hypermobileEDS is mainly on gastrointestine part (bummer), from physical  location to function to malabsorbtion (even urea constantly almost not measurable like starvation), hence need really to top up with supplements, which has improved overall score of pain (but not gone at all).. for us - just describing our experience- meat a big no no to eat, it really causes her 1-2 points more pain within 12 hours, when it reaches the colon. 

You can see via a food diary if there is anything, that could trigger your pain.

Magnesium made a huge difference in bowel movements,

VitD, VitC, VitB complex, CoQ10, Palmitoylethanolamid (fatty acid) seem to help, too. Aminoacid shakes to get 'protein' in digested form in.

Since we struggle with copper poisoning as well, have to do very careful supervised chelating and propping Zinc up.

You need to support the collagen building as much as you can so that there is no deficiency in nutrients causing more havoc since it is already fautly.

this might already improve symptoms a bit or take the edge off. But maybe not.

Urine samples are another problem.

We just had a good midstream urine sample for culture, she definitely had urinary tract infection signs, complaints and bacteria were visible (microscope), but 'no significant growth' on result. She was given antibiotics anyway and within 24 hours uti signs got better and within 48h gone....... so I am very bias with 'urine was all clear'.

Ultrasound is a great imaging. So that's good.

There is one more thing (and useless for us), once via x-ray, MRI, blood tests, severe obvious the the blind eye problems were excluded (as far as exclusion goes, radiologists make mistakes too, no lab test is 100%),

we were put on a neuropathic pain medication (pregabalin, gabapentin, amitriptyline) trial for months.

It didn't help us, but if you search,

the connection of neuropathic pain to connective tissue issues is big, too.

So if 'nothing' obvious can be found (but you need more investigation first, like a look into guts be it MRI, xray and a colonoscopy),

you might try the pain specialist neuropathic pain med path, too?

We keep Amitriptyline since it does lower the pain a bit and helps sleeping since sleeping was impossible.

Gabapentin and related drugs had no influence for us.

It's a long road.

I hope something can be found and tackled in your case.

We were also treated for abdominal migraine with no success. You might like to read up on symptoms and treatment (meds, trial) of abdo migraine, too.

PS: her pain got also huge during ovulation, menstruation and lutheal blood cyst rupture (she had constantly hemorrhagic lutheal simple cysts staying for months, size about 3cm = normal, seen in ultrasounds, MRIs, laparoscopy, on different sides, so was not the cause of root issue).

She is put on continuous contraceptive pill and that additional pain is gone at least and the struggle with iron/ferritin deficiency.

Are your ovaries good or 'on artificial pause'? Could you have a look into that if cyst rupture, ovulation and menstruation caused pain on off?

Just an idea.

For us not the answer, but a welcomed avoidance of another intermittent pain.

Thanks for the reply, I've not long got back from the doctors, they are going to test my blood for a few things including diabetes. (Doesn't explain the pain and symptoms apart from frequent urination). In regards to your comment about being bias about the urine samples being clear, every time I go to the doctors the first thing they check is a uti, I've done around 6 tests since I've been going about this problem and all have come back as fine.

I'm curious as to the checking my spine? What could this cause? Im still fairly new to Eds I was diagnosed in 2014 however there seem to be more things that crop up that are related.

I have heard about gut problems in edsers but I'm never 100% sure where my pain coming from.

The doctors also want me to be tested for stis also. Which I've looked at before but the symptoms don't seem to match but I'm going to book in any way

Oh good, please ask if

basic autoimmune disease panel is included (ANA, ENA, dsDNS)

and

VitB12, VitD, copper, zinc (don't get a fright, lots of different tubes have to be taken depending on test, but is not much blood, just many tubes. My girl had to give 9 tubes at once twice, without problem, unless very clumsy tech)

and celiac disease blood panel. Anyway liver enzymes, bilirubin, inflammatory parameters (white blood count, CRP) should be basic and always be included.

Glucose is good too since diabetes can alter blood vessels = oxygen supply = pain.

Cool would be an IgE and serum electrophoresis test, too. But I doubt everything done at once. For next time. ;-)

Urine sample via dip stick (just this little plastic strip with fields) is a great cheap quick screening tool, but does only pick up infections with bacteria producing nitrite.

Urine sample sent off to lab for culture is better, but can be false neg, too with 'no significant growth'. (die on transport, number too little)

(Can be false positive if not good mid stream urine and contaminated from outside vulva)

there is a poster here in this forum who can sing a song about her urine tests coming back negative constantly multiple repeated times and only another lab detecting a positive result. But it depends on symptoms, of course.

Yours don't sound like UTI anyway.

Spine: if a nerve is trapped or sometimes trapped, can cause pain. EDS is known for instabile spine. 

Exactly, before putting gut pain onto 'EDS' draw (functional) as cause, one has to have all common issues put aside (via MRI, via xray, via colonoscopy, blood and stool tests, food diary). It's a long search, but good.

Better than not being taken seriously.  (calprotectin and alpha1antitrypsin in stool would be another thing to look at)

All all the best! 

The doctors said that small adhesions were found on my either uterus or ovaries. But it's usually during periods where the stuff falls off and causes scars.

I had a test for every single std under the sun on Thursday, to be on the safe side. Waiting for 4 more results but the 3 they checked at the hospital came back clear.

I'll speak to the doctors on Monday when I go for my blood test and as about all you've mentioned. I know they aren't just checking for diabetes but some other stuff that I can't remember.

I'm hoping eventually I'll get to the bottom of this. I just hope that it isn't my depo injection causing the problems but I suppose if it's not my bladder it will be gut problems next.

That would interest me please.

My daughter had ascending colon adhesions found during laparoscopy, divided but pain went on after surgery.

Adhesions could be a sign of endometriosis and this often hurts. The only way is a laparoscopy to see and remove. hm.

Best best best of luck!!!!!!!!!!

Unless obvious to the blind eye. I saw once a pic of 'kissing ovaries', when adhesions pulled the ovaries together, so that they touched each other, well, that obvious can't be overlooked by a radiologist. ;-)

but small adhesions are really hard to see and still in 'study' stage how to do imaging (MRI) and what to look for. Deep pelvic endometriosis seems to be quite well taught, known and seen too in MRIs.

No, not all of them fully understand it apart from one doctor but she left sadly, Pots i find hard to explain but it's similar to Eds with different symptoms and problems etc. I don't think my gallbladder was scanned.

Sorry accidentally clicked reply when I wasn't done, clearly.

I read up on Interstitial cystitis and it sounds similar, I've recently been having random pulling pains which feel like it's in my bladder but it's not everyday.

I'm planning on going back to the doctors this week to find out more and what else they can do