Mikaela

@fncrmmf
Community Voices

What do you eat when your health makes it hard to cook?

<p>What do you eat when your health makes it hard to cook?</p>
52 people are talking about this
Community Voices

Stretch marks?

Do any other HSD/hEDS young people get more and more stretch marks all the time even though nothing appears to be changing with t their body size wise? I’m 18 and I’m not growing anymore and I haven’t been gaining much weight, but I keep getting stretch marks in strange places? I know stretch marks are a part of hypermobility disorders, but it just seems a bit excessive… Are they going to slow down/stop? Is there anything I can do for them? They fade pretty well, but it would be nice to help my skin out by stopping them from happening so much :/

9 people are talking about this
Community Voices

Do a lot of you often have the symptom of your skin feeling like it's burning?

I have several other chronic issues, so don't know which one causes this (fibro, lyme neuro damage).

22 people are talking about this
Community Voices

Does anyone get a lot of jaw pain?

Is jaw pain and clicking in their jaw. It clicks and sometimes only helps when it pops but the headaches can last all day, sometimes several. At times my jaw locks and I can't move it really or eat much that makes me chew too much. Who do I talk to about this? #EhlersDanlosSyndrome #Jaw #Pain #EDSjawpain

7 people are talking about this
Community Voices

Any advice for covid with EDS, POTS, MCAS?

#COVID19 #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome

I have hypermobile type EDS, POTS, and suspected MCAS, and i just got diagnosed with Corona for the first time (2x boosted on top of Moderna). My whole body is on fire, my joints are all angry and I've got a gnarly migraine. Any advice or warning signs that i should contact my PCP? I'm temporarily living in a foreign country by myself too so i don't have a lot of my normal coping tools.

6 people are talking about this
Community Voices

Any advice for covid with EDS, POTS, MCAS?

#COVID19 #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome

I have hypermobile type EDS, POTS, and suspected MCAS, and i just got diagnosed with Corona for the first time (2x boosted on top of Moderna). My whole body is on fire, my joints are all angry and I've got a gnarly migraine. Any advice or warning signs that i should contact my PCP? I'm temporarily living in a foreign country by myself too so i don't have a lot of my normal coping tools.

6 people are talking about this
Community Voices

Any advice for covid with EDS, POTS, MCAS?

#COVID19 #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome

I have hypermobile type EDS, POTS, and suspected MCAS, and i just got diagnosed with Corona for the first time (2x boosted on top of Moderna). My whole body is on fire, my joints are all angry and I've got a gnarly migraine. Any advice or warning signs that i should contact my PCP? I'm temporarily living in a foreign country by myself too so i don't have a lot of my normal coping tools.

6 people are talking about this
Community Voices

EDS and hand trembling

I have EDS and since the onset of my symptoms that got me diagnosed I've been having issues with muscle trembling in my hands, fingers, wrists, and ankles after I use them for something like an hour of gardening or a day on the beach or sometimes I can't tell why, does anyone else have this issue? I did some initial googling but it was all either unhelpful or way ominous or not the same as what I'm having. If you have, what do you do about it? I would talk to my doc about it but I'm sure I'm not really sure what is a docs appt vs a "Google search n deal with it"

1 person is talking about this
Community Voices

Any tips?

Hi there!

I'm in my first year of PhD and finally getting answers for my chronic health issues but I've got until July for my appointment to get evaluated for EDS by a specialist and a couple weeks until I see a rheum so I'm trying to manage pain until then. My hands have been getting really bad and I work on the computer, does anyone have any tips for minimizing or working thru issues or adapting your cooking etc to funky fingers/hands? Also, my ADHD n joint pain get in the way of routinely doing my PT, does anyone have any tips for things I can do to be better about it? Any tips for how to manage expectations/support without profs seeing you as unreliable?

Thank you!

7 people are talking about this
Community Voices

Any tips?

Hi there!

I'm in my first year of PhD and finally getting answers for my chronic health issues but I've got until July for my appointment to get evaluated for EDS by a specialist and a couple weeks until I see a rheum so I'm trying to manage pain until then. My hands have been getting really bad and I work on the computer, does anyone have any tips for minimizing or working thru issues or adapting your cooking etc to funky fingers/hands? Also, my ADHD n joint pain get in the way of routinely doing my PT, does anyone have any tips for things I can do to be better about it? Any tips for how to manage expectations/support without profs seeing you as unreliable?

Thank you!

7 people are talking about this