I hurt in places?

[Littleredhead]

Born in 84 have ED, had test done at age 23, I have the normal pain of every joint, that normal and not it. I have nerve pain and ear pain, I have had ear pain for a year, nerve issues for over 20 years. The ear pain is mainly in the right, comes and goes. And even the odd time the sound. Good to like you hear underwater. Finally seeing ENT at the end of month, nerve thing is another story. I have pluses in a spot then it will stop. And I swear unless I jab a knife there I can’t feel a dam thing till starts up again. Hands/feet’s are the worst. I barely can feel them, the only way I know I burnt my finger was when I looked down at it and it was blistering! Now I am not sure if this is ED so help, I have a few strange things up with me, that doctors go HUMMM.

[cyberbarn]

Just because someone has EDS doesn't mean that they can't have other things too. It sounds like you need to talk to your doctors because some of that isn't usual for people that only have EDS. Have you had an neurology appointment?

[Jay66]

I got mild neuropathy from hEDS, but I am glad you are seeing ENT as, like cyberbarn says, just because you have one condition doesn't mean you cannot have many more. I also have diabetes which can cause neuropathy. They can both cover up the symptoms of MS and other nerve problems. The hEDS can cover up the symptoms of other ailments because joint pain/pain is pretty much the most common feature of so many problems.

Having said that - all this is possible from hEDS, so don't be letting your imagination run away with itself.

[Tillyray]

Hi. I'm sorry to hear you're suffering..When I was young-er I began with ear problems after a virus. I had muffled hearing for months which became intermittent over the years. pulsing pains/ stabbing/ piercing comes and goes.I have felt the sensation of water in my ear without any water. I've always felt excruciating pain from mild cold temperature or on planes.As a child I was considered to have 'deafness', this improved. I have never addressed this ear problem in its own right as an adult, but it was taken into account at my hEDS diagnosis consultation this year.I also have intermittent tinnitus and experience pain & disorientation from loud noise.

15 years ago I was misdiagnosed with having MS, after a serious viral illness left me unable to coordinate movements. I had slurred speech, numbness and a partially paralysed left side/leg.I had not had a stroke. Although brain lesions were detected after an MRI and the MS label attached, it was some years later removed when my symptoms worsened but a lumbar puncture and other tests proved negative.It was found I had nerve damage.Neuropathy.But my state of health was a mystery until I did my own research,and help from here put me in the right direction to hEDS diagnosis...I had always suffered with leg pains and cramps since a child.I have constantly heavy,painful legs still, Muscle pains and the joint problems -to name but a few😜 -

I think I understand what you describe as the pulsing, then stopping. I too have this. I also have burning or ice cold patches that come and go- I forget the name for it-. I have,and randomly get numbness in areas and could ' stick a knife in and not feel it'...I've had permanent tendonitis/tenosynovitis in my left ankle since 2015. Lack of quick intervention has caused foot drop, and I suffer constant pain and sensations in my ankle & foot. I also often have no feeling in it..I do have other conditions associated to EDS, and some that are not.

Even if you have an EDS diagnosis already, but experience new,or unusual symptoms, you should always have it checked out as it may or may not be connected..I know about Doctors going 'humm'. When you have a lot going on and symptoms overlap, it makes it difficult.. EDS is a little understood condition by Doctors.But you can get help & support from -HMSA- hypermobility.org and ehlers-danlos.org

Definitely get referred to a neurologist as I originally did..keep going for the right answers and hopefully treatment will follow.

Best wishes🙂 xx