Have EDS, many symptoms--next steps?

[Elianne]

Hi,

I was diagnosed with Ehlers Danlos Hypermobility type about 7 years ago at age 52, bringing a lightbulb moment of relief that I wasn't  a hypochondriac! I have subsequently had a secondary Fibromyalgia diagnosis.

Ialso have CHD, having been referred because of chest pain, which I am not convinced was angina in nature, however following an angiogram, I do have severe plaque in my small arteries, and just diffuse in my main one. My symptoms are not constant stantith tupical angina pain so could be Fibromyalgia related

i mentioned to my cardiologist when I last saw him about two years ago, about my dysautotonomic symptoms, and he said more or less that I should live with them. He suggested a referral to London, which after my GP obliging, was told by them that it needed a consultant rheumy referral. This all got complicated and I didn't bother takin it further

i would just like someone's thoughts on my symptoms. I don't think I have pots as my Pulse is always slow i.e. in the 50s. If I get a sudden startle or anxiety it will go up to the 70s, but generally less than 60. 

my symptoms

chronic fatigue ( comes with EDS and Fibromyalgia also)

insomnia - never feel refreshed. New Fitbit shows only one cycle of deep sleep about 20 mins

                 Could wake at night and be away for a couple of hours. Tried everything, and now on Circadin ( melatonin)see if it will help, but 8 days in not much happening

chest pain ( particularly when really cold weather, )

hypotension ( just took it now and it was 88/60 but generally systolic 90s but when I go to GP or

                    Any appts, it is usually 135 ( white coat!)

postural hypotension - lots of faints in teens and twenties, but now know my limitations and            always warn people if o a, having a procedure and get up slowly

faulty thetmostat for heat/ cold. Clammy one minute and could be shivering the next

cold hands/ feet nose- even if heather nglocks off in a warm home I am aware instantly 

IBS - could have sudden bloating, and with it comes yawning with inability to 'catch' yawn/ get breath when eating or afterwards

reflux

swallowing issues - food e.g. Rice, smallbits will stick in my throats and I will regurgitate and reswallow. Video fluoroscopy could see it happen but couldn't see any physical reason for it

nocturia- as if not emptying bladder properly

 Over Reaction- startle response . E.g. If someone walks in and o wasn't expecting it would automatically jump, then get palpitations

sensitivity to stimulants e.g. Caffeine, MSG, cold remedies

sensitivity bright lights/ sounds

pulsating sensation in eyes about 5 times, where I can actually 'see' my pulse

Most of these symptoms I have had most of my life, but my faitigie is so bad today, I was surfing the net, to see if o could find some answers and advice, and stumbles across this site

sorry of the long first email, bit sometimes it's good  and therapeutic tote it off my chest

what I am looking for is--does anyone here have symptoms like this, and possible suggestions of consultants

 

Thank you all in advance 

 

 

[DizzyPopcorn]

3 hours ago, Elianne said:

Over Reaction- startle response . E.g. If someone walks in and o wasn't expecting it would automatically jump, then get palpitations

I can comment on this point. As someone who has severe anxiety, I react to almost anything for no reason. Even the smallest noise. I know you say you aren't hypocondriac but in my case it does it even though I don't have any health issue (that I know of)

[StayAtHomeMom]

I have most of your symptoms, I was diagnosed with POTS last year. The heart rate jump is what is needed for the diagnosis though. I brought my suspicions to a cardiologist who diagnosed me. After 9 months he sent me to a "local" (3 hours away) neurologist who specialized in POTS and autonomic dysfuntion. I have been suffering for over 2 years with my crazy symptoms. It was nice to have the validation. Unfortunately my specialist has yet to find my underlying cause. Good luck. I know finding a doctor is hard and the hoops they make for you just makes it all the more frustrating.