What other conditions have you been d... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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What other conditions have you been diagnosed with in addition to EDS?

ehlersdanlosukehlersdanlosukEhlers-Danlos Support UK224 Voters

Please select all that apply:

104 Replies
ClassicalGirl
ClassicalGirlAdministrator

Fibrous dysplasia

I have Aspergers, HMS/EDSH, IBS & am undergoing tests for secondary Raynauds.

Hi I've got the same disabilities as you :-)

Raynauds confirmed & now looking at Lupus & Scleroderma also

Synovitis, sesamoiditis, tendonitis, crps

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congenital hip dysplasia,congenital shortening oesophagus with congenital hiatal hernia,angina,menieres,migraines.hernia.

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Degenerative disc disease, neuropathic pain and nerve damage. Dysesthesia.. weird sensations. ha ha youre not kidding..possible vertebrobasilar insufficiency

Migraines, permanent numbness on right hand side, Sjogren's syndrome, rheumatoid arthritis, borderline osteoporosis, gastro-oesophageal reflux disease.

You sound just like me.

I am deaf and i have endmetriosis as well .

I have been diagnosed with endometriosis, gastric reflux, IBS, migraines, pelvic adhesions and possibly adenomyosis, depression and anxiety x

Hi along with all that is listed above i also have B12 deficiency and hypothyroidism I also suspect that i have POTs but have not been diagnosed as yet. I have also have Migraines, reflux, tendinitis,bursitis, scoliosis,Degenerative disc disease, heitus hernia and virginal prolapse, I also have an above knee amputation due to non union. I have recently had my Gallbladder removed after a stone got stuck causing severe acute pancreatitis and a grumbling liver and pneumonia.

Muli disc-Degenerative disc disease

Also 21 miscarriges, 5 premeture babies 2 prem rupture of mebranes, 1 deceased. 1 set of living twins aged 13, 18,20 yr old survied

Have you been checked for Antiphospholipid syndrome?

Seizure Tonic-Clonic no reason found

I am also autistic and dyslexic along with EDS3, fibro, depression and past experience of CFS.

Fibromyalgia, gastric reflux (likely a hiatal hernia), tremor, body temp. regulation problems, dental issues. Had Pigmented Villonodular Synovities in what had been my good knee; not positive it's related.

Graves

Endometriosis and brittle asthma

I have also been diagnosed with Hypersensitivity and Endometriosis.

Gastroparesis, raynauds, migraines, congenital extensor tendon dislocation.

IBS, chronic fissures, chronic pelvic pain, anxiety. Poss raynauds.

Endometriosis

Plus Functional Neurological Disorder. I suspect POTS or OI but not confirmed.

I'm also diagnosed with autism, Tourettes, ADHD and OCD. I possibly have POTS but it's not on my list yet.

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Raynauds Syndrome

Hashimotos thyroid, hypotension,Ménière's disease

Auto-immune Thyroiditis (Hashimoto's Disease); ME/CFS; Early onset DDD; Nerve damage from failed spine surgery & repeated dislocations; Arthritis; HMJS; Trigeminal Neuralgia; ongoing Dental problems; due to severe endometriosis from almost the start of my periods (14) I became a regular patient on the Gynae ward, after upteen surgeries, several rounds of hormone treatments & 4 miscarriages I finally had to have a radical hysterectomy at just 21 yrs old!!

Rheumatoid Arthritis, POTS, IBD (beginnings of Crohns Disease), PCOS, Hiatus Hernia, Varicose Veins, Affect Regulation problems.

Aslo chronic pancreatitis, hitatal hernia, acid reflux, Dislexyia, Discalcla, HMS, pacidermitist, Depression, ADHD and Mild Autism

Also forgot Atomic Bladder dysfunction and pcos

gastroparesis, eosonophilic oesophagitis, migraine

Self -Eds ,Systemic Lupus,Rheumatoid arthritis,sjogrens,raynauds,fibromyalgia,Complex regional pain syndrome,photosensitivity,migraines,reflux,livedo reticularsis,brachial plexus damage,slap tear,asthma,coctochondritis,thyoid cancer.

11 miscarriages ,losing one of twins twice,four kids,who between them have Eds adhd,aspergers,epilepsy,chiari 1,raynauds,pots,colorboma,asthma,insomnia,tourettes,irritable bowel,reflux,depression,migraine,photisensitivity,urticaria angiodema,.

Have you been checked for Antiphospholipid syndrome? / APS?

Mast cell disorder,hiatus hernia, Asthma ,cc and cataracts

I believe that I have most of the symptoms of ME, as per the latest criteria, i.e. ICC and IOM/SEID; however, after seeing Fibromyalgia diagnosis on my records or being told that, no doctor has even been willing to discuss possible M.E. They don't take that seriously and it has been a long uphill battle. I have asked for a tilt table test, 24 hr heart monitor, etc. for more than one year and changed doctors. The doctor overrode my clear suggestion that I seem to have an orthostatic intololerance condition, did not read the NHS own guidelines about what should be done in that case, and sent me for heart x-ray and 5 min ECG. After getting results of that, told me my heart 'can stand the stress' whatever that means, and prescribed statins as my total cholesterol was slightly raised. I have gone to a third gp and requested specifically to be seen by a cardiologist on the list of POTS clinics by name. Only then did I have any attention whatever paid to my symptoms. I have had symptoms of POTS, unexplained fainting, and symptoms of EDS for years. The Fibromyalgia diagnosis, while I know it is a real illness, has been a hindrance in dealing with doctors, all of whom do routine blood tests and tell me all is normal. I am mostly bed bound, and still being treated like someone they'd rather not deal with. I was so grateful to finally be heard and referred to a specialist in POTS, who diagnosed also EDS. It seems to me that a patient who has actually read the NHS website and pinpointed what investigations and treatments need to be done, has about a 50/50 chance of either being treated with contempt for claiming to have a clue about what causes their extreme disability, or alternatively be sent to a specialist who knows about their illness. In my case, it is a variation of the contempt, with just silence when I ask questions or want a referral, etc. They do not want to discuss it. I was lucky to have one GP in my current practice who was willing to refer me to the nearby POTS clinic. Otherwise, I would continue to be told 'all your tests are normal'.

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Alongside EDS I have been diagnosed with fibromyalgia, hypothyroidism, raynauds phenomenon, achilles tendonitis, plantar fasciitis, sleep apnoea, supraspinatus calcification, diverticulosis, chronic paroxysmal hemicrania, kyphosis, vit d defiency, tinnitus, pes planus, rectocele, cystocele, chronic anaemia, migraine, ganglion cyst, sebcutaneous eczema (I suspect this is a misdiagnosis and that it's actually sjogren's syndrome). I'm also under investigation for Ankylosing Spondylitis.

Celiac Disease, Migraine, Anxiety, Allergies and possible Endometriosis

Bursitis, bipolar disorder, Raynaulds, hip dysplasia, vitamin D deficiency, migraine, chronic UTI. I think that's about it!

endometreosis

Lupus

Atrial fibrillation. It may be a consequence of all that PoTS tachycardia apparently...

Also diagnosed with ovarian cancer, severe obstructive sleep apnoea, map-dot-fingerprint dystrophy, extreme myopia, cataracts.

BJ_UK
BJ_UK in reply to BJ_UK

Oh, and congenital dislocation of both hips, asthma, cold urticaria, psoriasis and a congenital partial bladder obstruction, not to mention a recycled.

BJ_UK
BJ_UK in reply to BJ_UK

Rectocele not recycled!

also diagnosed with severe autonomic dysfunction migraines, menieres disease, severe gastro motility issues fed via PEG-J tube.

Anxiety

Reynards, ovarian cancer, endometriosis, adonmyosis, prolapse, varicose veins,

Severe acid reflux, swallowing difficulty, oesophageal, stomach & bowel dismotility.

Raynauds syndrome

Carpel tunnel syndrome

Migraine

Endometriosis & adenmyosis

Fibroids

Hip & knee dislocation.

All of the above plus Small Fibre Neuropathy , Erythromelalgia

Scoliosis

Hi, I just found this site so thought I would join since I have Ehlers-Danlos Syndrome, hypermobility type. I answered this poll and for my other conditions, I have chronic fatigue but has not been diagnosed as CFS. It's just part of EDS picture. Also have bronchiectasis, believed by some researchers to be related to EDS. Also migraines. There are more, but those are the most disturbing.

I'm going to browse for a while. It's always fun to find a new support site. Thanks.

Endometriosis and Gastroparesis

Yes i have POTS confirmed 2015.

PsArthritis Pcos Crohns

POTS 2015

Endometriosis, Raynauds

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Autism, Osteomalacia (Vitamin D deficiency), ligamentous laxity, dystonia, dyspraxia, hyperaccusis

Lipedema

3 premature rupture of membranes; 5 premature children

Underactive thyroid should be on this list too

Personality disorder

Autism

Endometriosis, adenomyosis (just had a hysterectomy - taken last chance to have kids), pancreas insufficiency, neuropathy, lupus like disease, Crohn like ilieitis, vertigo, early scleroderma, migraine and atrophied feet/lower legs and wrists/hands.

I take a lot of painkillers but still work fulltime. I can only wear orthopedic shoes and use a wheelchair for longer distances.

Raynauds, hiatal hernia, GORD, Nerve damage, migraines, B12 deficiency, Iron deficiency, vitamin d deficiency, hypothyroidism, scoliosis,Asthma, Plantar fasciitis,Degenerative hearing loss, carpol tunnel, trigger thumb, tennis elbow, Ehlers danlos,vertigo, premature menopaus. Possible Chrons (waiting for test results), Fibroids (one big one removed now have another), lupus anticoagulant, Episcleritis, sinus problems, shoulder bursitis.

Autism, ADHD, Sleep Apnoea and Raynauds in addition to EDS :)

Dystonia

hEDS, MCAS, POTS, SFN, B12 & VIT D deficiency, degenerative discs, migraines, TMJ, cervical instability

I've got Tinnitus, endometriosis, plantar fasciatis, hEDS, IBS, chronic fatigue, vertigo, ADS, scoliosis, intermittent tingling and numbness in arms, hands, legs and feet!

Multisystemic Sarcoidosis with major organ involvement, complete autonomic nervous system dysfunction, adrenal insufficiency, hypopituitarism, chronic neuropathic nerve pain, suspected neurosarcoidosis,pulmonary fibrosis ...Prior to all the above I also went through diagnosis of fibromyalgia and chronic fatigue syndrome , IBS but I am almost sure they have been superceded by the above.

Forgot to add need recurrent ferritin infusions, potassium, phosphate and calcium also deplete at speed despite infusions, spinal surgery, gall bladder removal surgery initially for stones but was infected so full removal with stent ,nausea and motion sickness, loss of balance and eyesight issues. Hearing is struggling at the moment

Ella95
Ella95 in reply to dodo3

I've had my gallbladder removed as well, due to stones and chronic inflammation

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Asperger's, migraines, asthma, peripheral neuropathy (burning).

MCAS, Thoracic Outlet Syndrome, Raynaud's, BPPV,

PoTS, Raynaulds, Mastocytosis, microscopic colitis, Restless leg syndrome, complex EDS, osteoporosis, osteoarthritis.

Autism, ADHD, Raynauds. Pretty sure I have POTS, but my GP is reluctant to refer me because it's "very rare".

Adenomyosis, endometriosis, PCOS

Hashimoto’s Thyroiditis (autoimmune) AS WELL AS

Grave’s Disease (vacillate between the two thyroid conditions)

Factor V Leiden

Thoracic Outlet

Carpal Tunnel

DDD

Sciatica

TMJ

Hiatal hernia

Mitral valve prolapse

Tachy/Brady Syndrome

Low Ejection Fraction

Borderline Addisons (cortisone trial you stabilize cortisol - stopped due to effects of cortisone)

There are others and a slew of findings which aren’t conditions of their own such as:

“Torn & shredded” labrum (hips/shoulders)

(Was at Mayo for two months for work ups as well as having lived in nyc for 18 years where I received A+ care Now in Canada and finding it hard to get even very basic primary care despite or maybe due to the many reports re specialists and findings)

PReich
PReich in reply to PReich

I’ll add a few as I think of them...

I have had

• ovarian torsion twice requiring emergency surgeries.

• Cold urticaria

• Vit D deficiency

• bucket handle meniscus tear req emergency surgery 3x

• deviated septum

• Thyroglossal Duct Cyst — Emergency Surgery

• Cellulitis (hospitalized isolation)

Bronchiectasis

GERD

Epilepsy

Anxiety

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Ankolising spondolitis ..lumbar region..scliosis c section ..canal stenosis.. compromised immune system..hiatus hernia..menieres desease copd..ibs.etc.etc

Gastroparesis, in the middle of an Autism assessment, POTS, hypothyroidism, Gastritis, Duodenitis, fatty liver, eczema, slow Transit Bowel, Migrains

Ella95
Ella95 in reply to Ella95

In the process of being diagnosed with painful bladder syndrome

Ella95
Ella95 in reply to Ella95

Sleep Apnea

Ella95
Ella95 in reply to Ella95

Asthma

Oh and fluid & inflammation of the heart

Dewy9698
Dewy9698 in reply to Ella95

I have that too, though unexplained in my case.

Ella95
Ella95 in reply to Dewy9698

Bless you! It's very odd!

Dewy9698
Dewy9698 in reply to Ella95

It is! I'm also waiting on an ASD assessment, both my sons are on the spectrum. You're a year older than my eldest.

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All of the above plus . Totally compromised immune system, unstable angina , meniers desease , hiatus hernia with gastric reflux , copd and intolerance to multiple foods , medicines and external irritants. I am severely intolerant to salicilate , eggs and mushrooms . I have to be very aware of the need to follow a very strict dietry routine . Also hay fever ,migraines , regular sinusitis and anaphylaxis . I have hypoglycaemia attacks . These occur from time to time with no regular pattern . Once woken in the middle of the night , another time halfway through eating a roast dinner . Not diabetic . Eventual conclusion your blood sugars just act in a strange way . I lost one of twins at 4 months another babe was born with severe developement issues and lived for just a few hours . I have veins in my leg and some fingers which split from time to time . Better stop there . I am beginning to feel sorry for myself and that will not do .

Antiphospholipid syndrome

Fibro, chronic fatigue, arthritis in multiple joints, PoTS, degenerative disc disease, scoliosis, carpal tunnel syndrome, plantar fasciitis, SI joint dysfunction, gastric reflux, hiatial hernia, chronic gastritis/duodenitis, IBS, diverticular disease, gastroparesis, Migraine, peripheral neuropathy. Mitral valve prolapse, SVT .......Oh, and suspected (waiting on my assessment) ASD.

JMHS (not EDS) -Along with - PoTS, fibromyalgia, IBS, Scheuermanns disease, hip bursitis, New daily persistent headache syndrome - and all the other fun stuff that come along with all these haha

Would like to find someone out there with new daily persistent headache syndrome - and hEDS/JHMS - to see how they’re dealing with it as the medication contradicts one another x

DIETHYLSTILBESTROL SYNDROME + Infant onset Systemic Lupus Erythematosus + childhood onset Primary Immunodeficiency Disease + Sjogrens + Small Vessel Vasculitis + Lichen Sclerosus + chronic intestinal failure (small intestine) + Slow Transit Enteric Dysmotility + many other typical secondaries

Mast Cell Activation Syndrome, arthritis, bruising, pelvic pain, migraines, neck pain, shoulder pain and dislocations, tendinitis, bursitis, myalgia, dry eyes, irritable bowel syndrome....

Endometriosis, ADHD, Anxiety