Question for those working with EDS/Etc

General
,
1

Hi, all! I’m new to the group, and have been kind of shy about posting previously-- but I have a question that I haven’t been able to get answered with days of Google searching, so I thought asking some peers might be helpful…

I’m 25 years old, and have been symptomatic (chronic, debilitating pain) since 17 y/o. It left me unable to do anything physical without severe pain (walking even a city block, lifting anything at all, bending, etc) as well as chronic severe joint and muscle pain, subluxations, etc. I was diagnosed a year ago with EDS (they think it’s HEDS, but unsure) and went through a year of PT with mediocre results (but enough improvement to be able to hold a full-time job), and was diagnosed a month ago with an undifferentiated autoimmune disorder, which my DPT and PMR think has been exacerbating the EDS dx and slowing my progress. After a little over a month on meds for that, I’m seeing improvement and I’m very hopeful.

With PT, medications, and other things like a standing desk I’m able to work FT at this point without taking too many sick days. However, I’ve found that needing to see so many specialists so frequently has become an issue. My PM&R requires visits every 3 months, Rheumatologist made me come in 3x in a month [hopefully this will become less frequent over time with stabilization of meds, but I’m guessing this will still be 2-4x a year], and PCP requires visits every 3 months due to prescription of other controlled substances, not to mention an annual derm visit, OBGYN, etc.

For those of you physically able to work full-time, how do you manage balancing doctors appointments (for me, we’re talking 12+ doctors visits per year) and a full-time work schedule? I was literally fired from a previous job for asking for time off just for the PM&R visits (for EDS), and I’m not sure how to approach this with my next employer. I work in healthcare, and they seem insanely callous about it, which is ironic.

I appreciate any input anyone could provide. Thank you!

1 Like
2

I am not working full time but as close to it as I’m able and the only way I have found balance with all the Dr Visits and work is that I take every other Wednesday off and I schedule all my appointments for those days. I also have two children so it comes in handy for all their visits as well. The point I’m trying to help with though long winded, is maybe talking with your employer about a preset day or two during the month to have off and trying to schedule as many appointments as you are able to in those days.

3

That’s really helpful, thank you! Getting the appointments all onto 4 days a year and taking the whole day is definitely more palatable than taking 12 early afternoons…

4

Hey there Scs, welcome to the group! It’s been kind of quiet around there lately, so we’re glad to have someone with questions!

Don’t be shy about posting, nobody here bites! And also remember these things:

  • you chose your screen name to be anonymous
  • your profile is visible only to other members
  • every member on the community has been screened, and we are pretty sure they are genuine members, where they say they are
  • we expect civilized behaviour from our members at all times, and our moderators make sure that happens.

This community is as safe and supportive as an online community can be. We’re glad that you found us, and we hope that you are as well!

5

Hello EDS community members!

We have a new member who could really use your input. Do you have a few minutes to give her some ideas? Here’s Scs’s question:

For those of you physically able to work full-time, how do you manage balancing doctors appointments (for me, we’re talking 12+ doctors visits per year) and a full-time work schedule? I was literally fired from a previous job for asking for time off just for the PM&R visits (for EDS), and I’m not sure how to approach this with my next employer. I work in healthcare, and they seem insanely callous about it, which is ironic.

I appreciate any input anyone could provide. Thank you!

If you are getting this notification by email, you will see this near the bottom of the message:
image
You can click on “Visit Topic” to see the thread, or you can just hit “Reply” to reply by email. Your email will post automatically to the discussion.

If you have any questions or comments, email us at modsupport@bensfriends.org (click on that), or if you are on the community, click on our avatar and message away!

We love hearing from you! And @Scs would really love to get your input.

All the best for a 2020 that’s as good as can be!

Seenie from ModSupport

@trust_level_0

6

I can see u are frustrated I am a APRN and have a 22year old son with classical hyper mobile type EDS. He has Celiac, poor absorption on B vitamins, Chronic Fatigue, and he vomits 4 times a day unless he takes high doses of zofran.
He is currently being worked up for a CSF leak by a neurologist

After waiting a year to get on Dr. Paces schedule (she is a Gastro Nuerological doctor)

We finally got in. Dr Pace specializes in EDS

Gastrointestinal diseases. Interestingly most EDS if not all have gastrointestinal disorders. The link is the lack of collagen to hold tissues throughout the body of EDS patients. That is why 99% of spontaneous CSF leaks are EDS patients.

Dr. Pace is doing biopsy’s of the esophageal stomach duodenum after my sons last endoscopy.

Dr Pace showed me the pictures of the tissue and they are night red swollen and very inflamed looking - she suggested mast cell disorder.

Dr Pace will look at u differently because she is so knowledgeable about EDS and gastrnueroly

Dr Pace is located at the university of Utah hospital

U need to get all ur records into her and spend a year calling confirming they have ur stuff and then they evaluate if u meet her criteria

It is a lonely frustrating and hard journey

On the medical front dealing with this disease

It is exhausting-

Dr Pace will make u feel like somebody gets it

Good luck

7

Depending how I’ll u are getting state support for medical disability’s is.a idea

Working from home do u can manage ur schedule better

Or really looking at the fact with all ur stress is it worth it to work full time

Options include anything u can do to make things work

8

Hi Scs, I’m new to this site also. I was diagnosed with EDS in November 2019 but I have been dealing with other chronic issues for more than 30 years. If you don’t have one yet, I strongly recommend getting a Family Medical Leave Act (FMLA) form completed by your doctor and yourself. This will officially put management and human resources on notice that you will be requesting leave for health reasons. With the completed form, this will eliminate management counting your leave occurrences against you as long as your FMLA form is current and you have documentation from the doctor for each visit. This also prevents them from firing you because of your chronic illness. You may want to check with your employee assistance program representative or human resources.