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I live in Malta, a tiny island in the Mediterranean. This should say it all. I went to the 2 Neurologists that exist here. One referred me to a psychiatrist, the other to a gastroenterologist because I mentioned digestive issues.
A rheumatologist diagnosed me with fibromyalgia/cfs and told me that he can’t help me further. I’ve been ill for twenty long, heartrending, lonely years. I’m 39 now.
If I had money I would book a consultation with Dr. Diana but I have no money. I live on €400 ($528) a month in social benefits and the cost of living here is quite high. My condition has recently taken a turn for the worse. I don’t know what to do.
Can anyone help?
I live in Malta, a tiny island in the Mediterranean. This should say it all. I went to the 2 Neurologists that exist here. One referred me to a psychiatrist, the other to a gastroenterologist because I mentioned digestive issues.
A rheumatologist diagnosed me with fibromyalgia/cfs and told me that he can’t help me further. I’ve been ill for twenty long, heartrending, lonely years. I’m 39 now.
If I had money I would book a consultation with Dr. Diana but I have no money. I live on €400 ($528) a month in social benefits and the cost of living here is quite high. My condition has recently taken a turn for the worse. I don’t know what to do.
Can anyone help?
Hi Nancy,
Do you think you have EDS? Are they any geneticist near by? On the home page Dr. Diana has a symptom check list. Answer it and send it to doctor Diana it should help clue you in to the problems you are having. I am 37 almost 38 and I have been sick for a very long time too. You are not alone. Do you have a Facebook account because there are lots of EDS support groups. Also, google Ehlers Danlos national foundation. The web site has wonderful information and a forum as well. It has info on completing a Beighton test. Also, are other members of your family suffering from the same symptoms as you? For example in my family my grandparents, my mom, her siblings, myself, and my kids all have EDS. I was the first one diagnosed because I have a severe form of it. The severity of EDS can range from on person to another, but the form/type runs true in among family members. You mentioned you saw a neurologist . What symptoms are you having? EDSers tend to have a external communicating hydrocephalous and can also have a Chiari I malformation. Unfortunately, the doctor has to be well-versed in EDS to pick up on the hydrocephalus and the Chiari I malformation. Have you seen a cardiologist? A cardiologist is important because in EDS, regardless of type, we are all at risk for vascular rupture. It is important to have yearly echoes to monitor the diameter of out aortic root. Plus EDSers are at risk for LVDD, POTTS, mitrial valve prolapse, etc… Do you have dysautonomia too? I know how isolating and overwhelming this disease is. Hang in there. You are not alone. Even on your little island there are others with EDS there too. Maybe you can be the one to start a support group there for EDSers.
Shonda
ShondaI had check the eds symptoms on wiki some time ago and didn’t relate that much. But maybe I’m missing something…
I do have a paternal aunt who is as severe as me. My dad, siblings and a cousin seem to all have the same problem but very slightly. I’m trying to download an updated version of adobe reader because the symptom list wouldn’t open.
I never went to a Cardiologist. My heart rate is slow (60) and I don’t suffer from tachycardia. I sometimes have heart flutters which make me cough but I attribute that to low potassium. Usually it’s resolved after I eat a banana.
As for my symptoms I currently have:
severe dysautonomia
low grade fever during pms
long, irregular cycle
low bp
multiple food and medication intolerances
very painful constipation (lower left pain)
seizures
neck/head pain
cold extremities
low exercise tolerance
ankles swelling if sitting or standing
pain in feet
brain fog
fingers hurt when I type
random pain here and there, sometimes a shoulder, sometimes a leg
disrupted sleepForgot to thank you for your reply! Thank you so much! It’s such a relief to be able to write here and find help.
Symptoms list still won’t open! How frusrating
Dysautonomia/ CFS, M.E. Potential Symptoms
© Genetic Disease Investigators, 2013, All Rights Reserved
Name: (This will be kept confidential, but is required to reassure the ethics committee that you are a “real” person):
email address:
Where do you live? (state or country if not in U.S. is fine)
How many years ago you were “triggered” to go downhill? (or state if you’ve always been sick)
Please place a “1” in each box that pertains to you, even if the symptom is listed more than once.
Yes, this has happened
Almost Never / Never
I Don’t Know
“Allergy prone”Do you see “dancing” lines; “spiders”, insects
“Terry’s nails”: nails lose their moons, flatten, redish at tips with tiny white dots 1mm away
Abnormal lipid profiles
ADHD
Agitation
An eye turns in, or double vision when looking far right or far left
Anaphylaxis
Anti-phospholipid Syndrome
Bipolar presentation (euphoria and/or dysphoria — depression/suicide ideation)
Blood pressure drops when standing
Bradycardia or tachycardia
Breast fibrosis
Candida or thrush (may include a white tongue)
Cataplexy
Change in sense of smell; smell “hallucinations”
Change in sense of taste
Changes in voice
Changes in your visual field
Chewing food is difficult
Clear fluid comes out your nose when leaning forward
Coma or cataplexy; stupor: times of staring off into space, unaware
Confusion
Conjunctivitis (“pink eye” for unknown reason)
Constipation
Delayed gross motor skills (walking, crawling, etc)
Delayed speech as a child
DepressionDermatographia (skin turns red, white, or welts with a scratch)
Difficulty breathing
Difficulty concentrating
Diminished bowel movement; constipation
Disorientation
Dizziness
Double vision
Change in depth perception when looking right or left
Dry eyes
Dry mouth
Dry mouth (xerostomia) and possible increase in number of cavities
Dry, sore throat (due to decreased mucous production)
Dysarthria (difficulty speaking)
Dysphagia (difficulty swallowing)
Low pancreatic enzymes
Ear-aches
Easily motion sick
Easily startled (“jumpy”)
Eczema
Environmental sensitivities
Epilepsy; seizures
Extreme fatigue
Fast heart rate (tachycardia)
Feeling “bipolar” or having episodes of anger or rage
Feeling of pressure or fullness in your head
Flushing
Frozen shoulders
Gastroparesis
GERD
Gingivitis
Hallucinated presence of people not actually there
Headache – migraine, tension, cluster or unknown type
Headache at back base of your skull, radiating down your neck to the tops of your shoulders
Hearing loss
Hearing “whooshing” in your hears, Ringing in your ears
Heart attack
Heart palpitations
High Ig E
High serum tryptase
High urine methyl-histamine
IBS
Illogical thinking
Inability to concentrate; ADHD; loss of “executive function”
Incoherent speech
Increased body temperature
Irritability
Left ventricular diastolic dysfunction
Lifelike objects — unable to distinguish them from reality
Light sensitivity (photophobia)
Little or no fever when sick
Liver enzymes “off” or liver fibrosis
Loss of balance; frequent falls
Loss of coordination (ataxia)
Loss of gag reflex
Low ACTH
Low cortisol
Low gall bladder ejection fraction
Low immune system (may include candida, frequent UTI’s, high viral Ab titers)
Low level anxiety
Low muscle tone
Low sex drive; heightened sex drive
Lung fibrosis
Macular degeneration
Memory problems
Mental confusion (brain fog)
Metabolic Syndrome
Multiple sclerosis
Narcolepsy (without the gene for narcolepsy)
Nausea
Neurogenic shock — unable to move or speak when on your back
O.C.D. tendencies
One (or both) lid(s) droop, esp in the morning
One (or both) pupils are too large, esp in the morning
One side of your face is “weaker” than the other (a crooked smile, for example)
Osteopenia
Osteoporosis
Pain or weakness of neck or upper shoulders
Panic attacks
Perspiration stops
Poor healing
POTS — heart rate increases by at least 30 bpm from lying down to standing still for 10 min.
“Pusatile vision” – your vision brightens and dims with your heart beat (often in the a.m. only)
Pupils are dilated; difficulty in focusing up close
Rashes
Restlessness
Rheumatoid arthritis
Seeing periodic flashes of light
Sensitivity to any stress (good or bad)
Sensitivity to light
Sensitivity to movement around you
Sensitivity to noise
Sensitivity to sudden sounds
Shaking
Shift in sexual preference
Skin peeling for no reason
Snoring
Straining makes you feel worse (Valsalva), such as blowing up a balloon
Stroke
Tendency to over-achieve
Textured surfaces bother you, visually
tongue seems too big; difficulty making some sounds, like “s”
Tremor
Tunnel vision
Type 2 Diabetes or insulin resistance
Unexplained facial pain
Unexplained sinus pain
Urinary retention
Urticaria pigmentosa — skin spots, hives
Vertigo (your surroundings move)
Visual “snow”
Voice weakens or quivers or becomes hoarse
Wakeful myoclonic jerking; twitching of fingers or other extremities
Wandering thoughts; inability to sustain a train of thought
Warping or waving of surfaces and edges
Weight loss for no apparent reason
Thoracic outlet syndrome or “frozen shoulder”
Interstitial cystitisSorry nancy they above post is a poor copy of dr. Diana’s check list. I hope this helps in someway. I figure it is better than nothing. You maybe have to drag her list into another file and open it. I know she is working on updating the forum .
ShondaI had check the eds symptoms on wiki some time ago and didn’t relate that much. But maybe I’m missing something…
I do have a paternal aunt who is as severe as me. My dad, siblings and a cousin seem to all have the same problem but very slightly. I’m trying to download an updated version of adobe reader because the symptom list wouldn’t open.
I never went to a Cardiologist. My heart rate is slow (60) and I don’t suffer from tachycardia. I sometimes have heart flutters which make me cough but I attribute that to low potassium. Usually it’s resolved after I eat a banana.
As for my symptoms I currently have:
severe dysautonomia
low grade fever during pms
long, irregular cycle
low bp
multiple food and medication intolerances
very painful constipation (lower left pain)
seizures
neck/head pain
cold extremities
low exercise tolerance
ankles swelling if sitting or standing
pain in feet
brain fog
fingers hurt when I type
random pain here and there, sometimes a shoulder, sometimes a leg
disrupted sleepNancy are you able to watch Utube? There are some great videos both on this forum and online about EDS. I was also thinking maybe you could see a dermatologist for a skin biopsy. They can be helpful for diagnosing a connective tissue disease. However, a negative skin biopsy does not mean you don’t have a connective tissue disease. Is there an endocrinologist on Malta you could see too? Do you have joint hypeermobility, subluxations, and pain? Google the Beighton score for EDS. Most of us never realize that were are flexible because we have always been flexible and our family is too. Remember it declines as we age. Your symptoms are common among EDSers. You may want to look into other connective tissue diseases too.
Shonda
Looks like I cut of part of Dr. Diana’s list. Here is the rest:
Interstitial cystitis (feels like you often almost have a UTI) or pelvic pain syndrome
Do you have other autoimmune conditions such as Rheumatoid Arthritis, M.S., Sjogren’s, etc?
Is there a family history of mental illness?
Is there a family history of Alzheimer’s Disease?
Are there autoimmune conditions in your family?By completion of this poll, I hereby certify that I am an individual with a suspected or confirmed
diagnosis of dysautonomia and or M.E./ Chronic Fatigue Syndrome.I understand that my identity will be held strictly confidential, and only used only to confirm the ethics of the poll.
If you do not wish to participate in further studies (likely based on your results), please indicate here:
Thank you so much for your help in getting out the word to the world that we suffer with more than fatigue!
I managed to open the list. I filled it in and sent it 🙂
Your concern and commitment to help me is moving. Haven’t encountered much of this before.
Yes there is an endocrinologist in Malta and I guess I can have a biopsy.
If joint hypermobility is being double jointed, I certainly am not.
In my teens I used to have a lot of joint pain and I remember my elbows and knees were particularly troublesome. My elbows used to click out of place when I used to lift the pet cat I had then. I used to need to crack them back into place. Later on I had pain in my knees and doc said it was ligaments. They especially hurt when I used to climb stairs. I used to wear elastic supports. Everyone said it was growing pains.
When I reached my 20’s that was all past and I started the IBS/constipation phase. At 25 I got diffuse muscle pain. And at 29 I started with dysautonomia. Muscle pain is gone now except for a day here and there usually with menstruation. IBS is out of control and along with dysautonomia, it is ruining my existence!
I do get frozen shoulder every now and then and once, some 4 years ago, I got up normally from bed and my shoulder simply slipped out of its socket. There was no jolt or anything. I didn’t stumble. It was all very normal. I immediately lifted it and ‘hinged’ it back in its place. It was all very automatic. Then I had the frozen shoulder from hell for a couple of weeks. Nothing of the sort has ever happened before or since. Even whenever I fell I never dislocated anywhere.
Hi Nancy, you don’t have to be double jointed to hyperextend joints. I hyperextend my knees and elbows past negative 10 degrees. I first learned I could do this form my physical therapist and my doctors. i never realize I was doing it. All my joints pop too and it’s actually subluxing. Sounds like you’re describing you joints doing that. Even sounded like you had a complete dislocation that you managed yourself. For me it started in my ankles, TMJ/jaw, and my patella on my left knee. Now it’s almost every joint my body from my thumbs to my shoulders to my big toe. I would try to find a dermatologist that knows something about connected tissue diseases and maybe she can order a skin biopsy for you, and then from there you can go to an endocrinologist. If you could find a genetictist that would be even better. Do you have the stretchy skin? Check multiple places on your body. It only needs to be 1.5 cm or greater. Doctors prefer the volar surface of the wrist. Do you have abnormal scaring? Like thin, white, transparent, stretch marks? I hope you can also check out the videos on here that dr. Diana made. They are full of wonderful info.
Hi
I can’t be sure but I don’t think I hyperextend my joints. I do think my skin is stretchy. I don’t have abnormal scarring. Would a genetist give me a more definite answer?
I’m starting to believe my BF has EDS :/ He was operated at 15 for scoliosis. He has hyperflexibility. He has had more than one dislocation. His joints pop often and loudly especially his jaw! He suffers from dry eyes and his skin is stretchy. He also suffers from low stamina/fatigue and low stress tolerance. He gets very anxious and panicky and very tired if under stress. He also manifests the classical ADHD predominantly inattentive type symptoms. He is not really ill like me but gets very tired easily. He often has insomnia and occasionally he has unjustified diarrhea.
Hi
I can’t be sure but I don’t think I hyperextend my joints. I do think my skin is stretchy. I don’t have abnormal scarring. Would a genetist give me a more definite answer?
I’m starting to believe my BF has EDS :/ He was operated at 15 for scoliosis. He has hyperflexibility. He has had more than one dislocation. His joints pop often and loudly especially his jaw! He suffers from dry eyes and his skin is stretchy. He also suffers from low stamina/fatigue and low stress tolerance. He gets very anxious and panicky and very tired if under stress. He also manifests the classical ADHD predominantly inattentive type symptoms. He is not really ill like me but gets very tired easily. He often has insomnia and occasionally he has unjustified diarrhea.
A geneticist is the best doctor to see for the diagnosis of EDS and other connective tissue diseases. It may take a awhile to get into one, but when you do give them a complete medical history. Include every thing no matter how small or unrelated they may seem. Do this with your family members as well.
It does sound like your friend has it too. Sometimes men suffer less from EDS than women. This is true in my family. The women are greater affected by EDS than the men. I hope this will be true for my son, even though he is showing the same symptoms I was at his age.I sure hope your son will have an easier life than the one we are having. At least he has you to guide and support him. Which is so much more than most of us ever had.
We will do our best to go to a genetist. Dr. Diana wrote me back this morning (it’s 23.43 now)and gave me some valid input 🙂 Thanks for suggesting that I fill in the questionnaire and contact her.
Last Tuesday I relapsed with a bang and it’s my fourth day in bed. Today was tough. Got so bored and claustrophobic! And lonely. At times I felt panicky.
Thanks for your wonderful support. Hope you are having a good, symptom-free day
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