What other conditions have you been d... - Ehlers-Danlos Sup...
What other conditions have you been diagnosed with in addition to EDS?
ehlersdanlosukEhlers-Danlos Support UK259 VotersPlease select all that apply:
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
congenital hip dysplasia,congenital shortening oesophagus with congenital hiatal hernia,angina,menieres,migraines.hernia.
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.
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'.
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.
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
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
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
I've had my gallbladder removed as well, due to stones and chronic inflammation
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)
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)
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
In the process of being diagnosed with painful bladder syndrome
Oh and fluid & inflammation of the heart
I have that too, though unexplained in my case.
Bless you! It's very odd!
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.
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
Pots/cfs/under active thyroid (autoimmune)/ ataxia/ hyper mobility syndrome and dyspraxia.
UCTD, demagraphism, coeliac disease, hashimoto's.
Bursitis, tendonitis. Miniscus tear with cyst. PCOD, hiatus hernia with chronic GERD, IBS, dry eyes, folate anaemia, tmj problems, lockjaw, cervical and lumbar spinal stenosis
Lupus, pericarditis, chronic pain
Lyme disease, severe cervical erosion leading to C5/C6 discsectomy & fusion
MS and ADHD
I'm autistic and also have endometriosis/adenomyosis. Plus my immune system is super-paranoid and dramatic
Pernicious anaemia, endometriosis, sinus tachycardia
Alongside my EDS I'm diagnosed with: POTS, MCAS & Chronic Idiopathic Urticaria, Gastroparesis, Chronic Migraines with Auras, Cerebellar Atrophy, TMJD, Hearing Loss, Auditory Processing Disorder, Bladder Dysfunction (use catheters), Breathing Dysfunction, Severe Asthma (I'm dependent on Steroids orally, so adrenal issues as well), Autoimmune Hypothyroidism, Foot Drop, Kyphoscoliosis, Hiatal Hernia, SVT, Heart Valve Regurgitation. Also have a few mental health diagnoses: CPTSD, AN, EPCACE, GAD and Depression. Also have severe Onset and Maintenance Insomnia. I'm also being prophylactically treated for Iron Deficiency Anaemia and Vitamin D Deficiency after being severely low in the past for them both. Being screened for Osteoporosis/Osteopenia because of a break I had recently. So will see what the outcome of it will be.
Bladder issues SVT MGUS Migraines Diverticulitis Scoliosis Bursitis Asthma COPD Tendonitis Degenerative Disc Disease in the cervical, thoracic and lumber spine lordosis Disease Berry aneurism mixed Sleep apnoea Allodynia Hyperacusis arthritis spine/hands/ neck post-herpetic neuralgia Chronic Kidney Disease Heart valve regurgitation partial hearing loss reoccurring Sinusitis
I have only recently got the final diagnosis of Classic Like EDS , and only got diagnosed as severe HSD five years before at the age of 50 , despite over 20 years of Rheumatology and other appointments. The family gene test is in the pipeline.
I have voted POTS in the list but my actual diagnosis is for another Chronic Dysautonomia condition called, Sinus Node Reentrant Tachycardia Syndrome, which makes me wonder whether future surveys should state Dysautonomia/ POTS, as although less common than POTS , there are other Dysautonomia conditions probably linked to EDS , and whose symptoms are definitely made worse by the effect of EDS on the body.
Over a period of over twenty years I have racked up a syndrome or condition for every letter of the alphabet , if I am allowed to use the non medical term Queasy for the letter Q!The most unusual being one of the A's, as part of the spectrum of migraines , suspected Alice in Wonderland syndrome , a rare neurological symptom which causes hallucinations where things in my vision become bigger or smaller or change in colours for 20-30 mins before the onset of migraine pain. Suspected.... Because the neurologist had no idea how to test it and felt too self conscious to add it as a confirmed diagnosis in his notes.
I will say , you haven't lived until you have witnessed neon pink cows in bright yellow fields or seen an eight foot long wasp sitting on your bookcase.
I have many more syndromes , including rarer ones, which can definitely be attributed to the effect of EDS over the years on my connective tissue. Many of these were diagnosed just before , and during my assessment at a Behcets CoE because Behcets was considered before EDS.
The Dysautonomia causes gastrointestinal dysmotility, I've been hospitalised for possible bowel obstruction over the years only for it to be overturned as they did not have the knowledge to know that it was Pseudo bowel obstruction.
I have trouble swallowing and also suffer from regular vitamin deficiencies, likely to be caused by the poor absorbtion in my intestines. UTIs , GERD, choking , and small intestine infections and constant IBS- C is the norm.
I also had to have a gall bladder removal despite being not "the right type" to need one. When they finally removed it they said it was surprising that there were so many stones in it as I was so underweight and that it looked like it had become floppy or caved in.
I did suffer from the worst periods and took medication for years to try and reduce the bleeding. I bled heavily for a month after my first child but nobody made any connections. I finally got diagnosed with adenomyosis and then had to have a full hysterectomy at age 40 because it appeared as though I could be bleeding elsewhere in the body and hormone periods were causing lax joints and severe body pain and even pancreatitis!
I had constant Aphthous ulcers and most of my teeth had to be removed before 40 because of movement in the gums causing cracks and decay. This had been happening since my childhood and there is nothing more upsetting as a child ( or an adult) to be accused of not brushing your teeth or sneeking sugar when you work hard on looking after your mouth.
I had so many bad appointments about my jaw but because it did not lock in the day I was then treated like I was imagining things , eventually I got Trigeminal Neuralgia. I was accused of irrational anxiety and dental phobia because nobody believed it when I said my anaesthetic was not working, on one occasion I passed out in the chair as the dentist ploughed on hitting the nerve.
After also being diagnosed with Sicca Syndrome , Red Eye and Dry Eye syndromes and recurrent blepharitis and Anterior Uvietis I got desperate as I am an artist and could not lose my sight.
People kept mentioning Behcets , so I managed to get a referral to one of their specialised clinics , thanks to advice from the Behcets Society via HU. At those appointments they finally diagnosed Recurrent Aphthous Stomatitis Syndrome , Fibromyalgia , Chronic Migraine Syndrome, CFS / CPS, peripheral neuropathy and noted the Dysautonomia symptoms. All the other usual suspects for these conditions were ruled out. And of course my first GHSD diagnosis , but because I didn't have Behcets they could not continue my assessment.
They suggested that I should be referred to the Dysautonomia and EDS Clinics in London to my GPs , as, because I live in Wales , they could not refer me direct , my doctors said they could not refer out of Wales. Odd , as the clinic that recommended it was in England!
There are absolutely no services in Wales for these conditions and despite being requested by all my other consultants to see me Rheumatology would not give me an appointment for Hypermobility related issues.
In truth , my excellent Rheumatology Physio , whom luckily has an interest in Dysautonomia , asked for advice about how to treat me until my appointment with his Rheumy consultant team , their answer , " Is she getting an appointment? You probably know more than us , we wouldn't have a xxxxxxx clue."
Local neurology also has no one specialising in gastric , Fibro or autonomic nerve dysfunction so there was no point in heading there ( a doctor at the Behcets clinic also worked in Wales and confirmed this apologising for his own lack of knowledge in it too).
Finally local Cardiology diagnosed the Dysautonomia as SNRT with POTS features, this has probably been more disabling and has had more of an impact on my daily life than the lifelong subluxations , tearing ligaments and tendon strains from popping joints that should have given the Doctors a clue over the decades. You learn to deal with injuries and avoiding them , you can't avoid activity onset tachycardia , vertigo , dizziness , fainting and blinding tunnel vision that can strike at any moment without notice from an uncontrolled autonomic nervous system. Now Standing is my Cardio.
In my youth I was dismissed as weak muscled , clumsy and the fainting and syncope blanking out , tremors and neuro symptoms I had from age 9 were misdiagnosed as Juvenile Petitmal , I can let them off for that , at the time, little was known about EDS or Dysautonomia in the 1980's. I'm rather less inclined to be forgiving about them passing me back and forth and not testing me properly in the last twenty years though.
The Behcets clinic had also suggested that I have MCAS because of the extreme autoimmune like responses and infections from bug bites and skin injuries and I also have Raynaud's Syndrome.
It is only in the last few weeks with forms in hand and a new proactive GP on the books that I could say, " look, can we finally get this EDS thing set in stone" he did the right tests ...Classic Like. Luckily , I took my youngest daughter with me and I got two 50th year gifts as she was diagnosed as Classic on her first attempt , I am so relieved she won't have to go through the hell I have been through to get a diagnosis. I just wish I hadn't had to become a medical savant and gone through so much distress , and appointment failure , trial and error to get there myself.
Absolutely feel for you. I was that “clumsy child” back in the 80s who was told it was all in my head if I felt pain or said my body didn’t feel right. I pushed harder to fit in and made every sports team, gymnastics and ballet. Constantly felt fatigued & would end up broken and bruised yet ignored all the injuries as they were just “growing pains”. Fast forward a few years and I developed anorexia and bulimia in my teens.
No one thought to put the pieces together that my now horrendous periods and pain and the constant gaslighting (including me gaslighting myself!) contributed to my eating disorders. I was given antidepressants time and time again and even ended up self medicating with various “party drugs” in my early twenties just to try and “feel” something.
I have pushed my body to its limits over the years and it was only after I finally managed to fall pregnant that it started to break and not recover as easily (or hide the issues 🙈). First they diagnosed fibro which I felt like a total fraud. I was working as an EMT for the ambulance service and in my head, I couldn’t have “that” as it wasn’t a “real disease”. I know it is but trust me, the amount of gaslighting I’d had over the years and being told it was all in my head made me totally doubt myself. I pushed on and went back to work full time when my daughter was 6m old but I was constantly subluxing and picking up every infection and virus going. Long story short I had to leave my career and went into complete darkness.
My GP has been amazing and so supportive over the past few years ans it was thanks to her that I finally got the EDS diagnosis at the age of 44. I’m 46 in a couple of weeks and I’ve just spent nearly two weeks off my legs thanks to a massive flare up of every symptom going. I still hate myself and feel enormous guilt that I’m not totally “present” for my husband and now, 9yr old daughter. I am my own worst enemy!! It’s breaking my heart as my daughter is now experiencing the symptoms that I have. I just feel thankful that I have the knowledge to be able to advocate for her. I don’t want it to stop her from living a fulfilled life but at least I know she won’t be pushed to breaking point!!
Sending you lots of gentle hugs (because it’s always fun when someone hugs you and pops your ribs 🙈😂) and I hope you feel supported and seen xx
Please feel free to keep in touch if you ever need to chat to someone whom knows what you are going through , you can contact me via private message board.
Please , try to bash the guilt on the head with a mallet ( without popping your wrist as you do it ). It is not your fault it is genetics.
I've lived virtually guilt free for years now and its made a huge difference to my pain symptoms , my mental health and to how everybody close to me feels too.
I got honest. Stopped trying to push myself to do jobs or too much in a day that I'd then pay for , for days later. I told every one really simply that I would need to take things slow , cancel things sometimes last minute and need help. Any friends whom stopped calling were fair weather ones I clearly didn't need. My husband and family found it far more of a relief to know what was going on and know how to help. It made them all feel better too because they stopped secretly worrying about me and it also stopped them feeling bad or guilty if I did something for them that obviously caused me pain. Doing more chores they feel is a small price to pay for how much better we all feel mentally.
Speaking of Fibro , my youngest daughter was diagnosed with that too last week . Sad , as she is only 20 but also positive because as we know most of us EDS sufferers end up with Fibro so early because of all the nerve issues and wear and tear we have to deal with from a very early age. At least I can support her as she goes through it. In fact , laughing through pops and clicks together has probably made dealing with this much easier for us all through my childrens childhoods.
Take care , Bee
- autonomic nervous system dysfunction
- probable PA (GPC antibody +ve; low B12). Low vit D
- gastro-oesophageal reflux disease and hiatus hernia
- tendonitis, including 'trigger finger' and Mortons neuroma
- clinical depression with anorexia
- diastolic dysfunction of heart
- undefined proximal muscle disease
- possible glaucoma; cataracts
- drop attacks
- kyphosis
- attention tremor
- severe dental problems and infections
- subluxation of knee joints (replacement of left knee cap, but little improvement)
Vulvodynia, Restless Legs Syndrome (Willis-Ekbom Disease), insomnia, hyperacusis and tinnitus, acne, spondylolisthesis, degenerative disc’s disease, hallux valgus, carpal tunnel syndrome and osteoarthritis rather than rheumatoid. And some psychological nonsense that I don’t care to repeat.
Hypothyroidism, Endometriosis, Polycystic Ovarian Sydrome, Complex Regional Pain Syndrome, TMJ, Early Menopause, Astigmatism in both eyes… literally feel like I gain a new diagnosis each year 🤦🏻♀️🤣
Just to add I’m now experiencing really fun “indigestion issues” despite having to take lanszoprazole” daily… this fun little pill was given after I’d gaslighted myself over an internal bleed and ignored it to the point that I ended up being blue lighted into resus and taken in for a burst duodenal ulcer. Apparently my blood levels were critically low and to this day my GP doesn’t trust me when I say “I’m fine!” 🤣 I worked as an EMT for the ambulance service and knew exactly what was happening to me but didn’t want to “make a fuss” or feel embarrassed if it was a “pseudo” symptom.
lymphatic filariasis; complex migraine
Moderation team