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I have to second the principles of neural science as it truly is the bible of neuroscience, but if you’re a real beginner I could not recommend neuroscience: exploring the brain more. Used it in neuro 100 first year of college. I’m a senior now and I still use it because of its clear descriptions that don’t involve vocabulary or concepts you may not understand yet.
Edit: typo
This book is fantastic and completely worth the money.
I also recommend the anatomy coloring books, and surprisingly, if you search Pinterest there are a lot of really nice charts and pics.
My experience exactly. Although I left many early as they clearly had no clue what they were doing. Have you tried Muldoney's plan for EDS? https://www.amazon.ca/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
Its highly regarded as a PT resource in the EDS community.
Thanks! It’s been an experience. I actually shifted my career a bit from a more physically demanding position to a less active one due to ic. (Not a mover, but an archivist and I was moving a lot of boxes, items, collections, etc.) Diet does help-at least at first-you may be able to cheat more as you recover. This is just a stupidly frustrating road block before you get better. It does get better. I just got a new bike after being unable to really ride for years!
It’s very easy to feel hopeless and down on yourself, but try to remember that just because your life has changed doesn’t mean it’s over. Ic has made me more empathetic, helped me help others, and given me new perspectives on life and my own strengths.
Meal prepping and finding a protein shake you can tolerate might help since eating on the road is tough. I still have fast food, but might have a plain burger, plain fries, and a water or a plain grilled chicken sandwich.
I do outdoorsy stuff on weekends, but I definitely have to time it out and give myself downtime. I’m also on medication that helps and do bladder installations at home. Find a urologist who specializes in IC.
Meditation and managing emotions can also help, though that’s easier said than done, as I am learning.
I did PT for a year twice a week. It was a slow process, but it’s an effective one. It helped to start with a consistent practice and learn what I could do at home, which is what I do now. There’s a book called Heal Pelvic Pain that gives exercises you can try at home.
https://www.amazon.com/Heal-Pelvic-Pain-Strengthening-Incontinence/dp/0071546561/ref=nodl_
It’s not quite as effective as a specialist I imagine, but it’s something you could try to become comfortable with the process.
Ok first there is a great book available as a textbook for PT specific to Eds from a PT with Eds that you can purchase on amazon. https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
I am currently a part of two research studies on EDS. One in Boston run by Dr Matt Holick whom I urge everyone with EDS to contact and join even if only remotely to contribute to the genetic research portion to identify all the markers for the hEDS folks and aid crispr. The other portion is aiding in finding better palliative treatments so our suffering is less. The other study is a PT specific study run by Plymouth state college by an amazing PT who has his whole heart into finding ways to help us help ourselves.
Don’t take my word for it for sure. Don’t take anybody’s word for that matter and dig as deep into it as you can and try to really understand what is going on and what you can do to help make its impact not so heavy.
If you just gave up and gave in and said to yourself this is the card I was dealt and just take it, what do you honestly think will happen to your body? Muscles will degrade and you will legitimately hang off of your extra loose ligaments. Do you know how I know this 💯 because this is me right now. I finally have gotten to the point where my body cannot take anymore. I have disks in my back degenerating and I slipped a disk mushing dye into my hair. I’m pissed and finally got to the point of I’m going to be wheelchair bound again but this time in a power chair because my arms are garbage point in life. I can come back from this I’m sure at least enough to stay out of the chair for longer. There was a girl with EDS on American ninja people we can heal but not by freaking sitting there and taking it.
Seriously though if you don’t want to deteriorate and be taken by this disease then fight man or don’t be surprised when it’s you stuck in a chair wondering how in the fuck you got there.
https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
I have seen definite progress every few months.
There is no end date to physical therapy and Ehlers. We have to do exercises forever to not degrade... I know how hard it can be.
Hey fellow Zebra! I also have hEDS, POTS, and ADHD! Plus hemiplegic migraines and I'm autistic. I'm currently in my final year of my MSW program and I'm doing my internship in a primary care setting. Everyone else has given good advice re: accommodations and communicating with your school/agency/supervisor, but I wanted to chime in for EDS specific stuff. This shouldn't be construed as medical advice; these are just my own opinions based on personal experience.
Are you in physical therapy with someone who knows EDS well? My PT has been critical for keeping my symptoms manageable enough to work. He's a manual PT that helps me get my joints back in place, which is great because I usually have about 4-5 subluxations between my twice-a-week appointments. A good PT must be EDS-literate, though, because standard PT techniques (like stretching) will make us worse. If you don't have an EDS expert near you but find a PT who is willing to learn, Kevin Muldowney, who literally wrote the book on EDS, provides one-time consultations where he can draw up a treatment plan you can bring back to your local therapist (although these aren't covered by insurance and can be pricey). If traveling to Rhode Island isn't feasible for you, his book can be used as a guide for you and your physical therapist.
In general, just keeping an eye on your hEDS symptoms and making sure you're getting screening for all possible complications is something you shouldn't neglect. I didn't find out I had a tethered spinal cord until my late 20s, and after that was fixed, working became way more feasible.
My physical therapist recommended this book to me. It’s a comprehensive guide for ehlers danlos patients and their physical therapists. It outlines an exercise program to reduce pain. If you can find a pt who will work through it with you, it’ll provide the education they’ll need. Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_glt_fabc_WM15B8NE6EPRZM6KXSVR
My favorite resource for palpation is Trail Guide to the Body. It has really good pictures and walks through how to find land marks. I’m not sure if there are online resources for this particular series but here is the Amazon link.
Thirding this - it's actually called Principles of Neural Science. It's been called the bible of neuroscience more than once, and its in literally every neuroscience lab I've ever stepped foot in (seriously they seem to self-procreate). It's on amazon and is by far the most comprehensive, solidly biology-based neuro book out there. It's also pretty readable, which is a nice plus!
Definitely get rid of that doctor!
I was having the same issue and no infection, terrible bladder pain and urgency. For me, I had scar tissue on my bladder (outside not inside so not seen on a cystoscopy but found during another surgery). My doctor recommends this book to lots of patients:
Heal Pelvic Pain: The Proven Stretching, Strengthening, and Nutrition Program for Relieving Pain, Incontinence,& I.B.S, and Other Symptoms Without Surgery https://www.amazon.com/dp/0071546561/ref=cm_sw_r_cp_api_i_A7RtFb3RX3ZAD
I can relate to so much of this. While you’re waiting for a diagnosis, maybe this might help? I was working with an amazing physical therapist before Covid, and she recommended this book by Kevin Muldowney that’s basically all exercises.
Yes, it comes and goes. Sometimes I sleep with a 4% lidocaine patch on my lower back and that helps, too. My PT recommended this book: https://www.amazon.com/Heal-Pelvic-Pain-Strengthening-Incontinence/dp/0071546561/ . About half of what it recommends for pelvic pain also happens to be effective when the origin of the pain is OA.
This book is a guide written to teach PTs how to treat people with EDS. It’s approved by one of the top EDS experts. It’s basic enough that you should be able to do it yourself. Take the muscle relaxant at night. Yoga involving stretching is bad for EDS. Support is in this group
Rohen's is great:
https://www.amazon.com/Anatomy-Photographic-Atlas-Color-Study/dp/1451193181
University of Michigan also has some good photos you can get started with online:
https://sites.google.com/a/umich.edu/bluelink/resources/bluelink?authuser=0
Most of it was from PRINCIPLES OF NEURAL SCIENCE.
I have also used some papers, mostly directed to vision. Example this one.
Based on what I’ve heard from others, these two are the most popular. I have both books, but I haven’t read both from cover to cover. From what I have read, the content is very similar. But, TBH, it’s been at least 5 years since I’ve read them, so take this with a grain of salt. You should look at reviews.
Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS
https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_i_76NDPCXM7N8P3M930VEP
Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome
Doctors who understand are very hard to find. Especially about EDS. If youre in the US, there are EDS specialists scattered throughout the country here, typically orthopedics if im not mistaken. I FINALLY was able to get into one after a year long wait, u jus have to search for them and be patient to get into their office. He was by far the most helpful dr ive ever had. Recommended me to a whole list of other specialists who focus on comorbidities with EDS (dentist, pt, obgyn, cardiologist, ophthalmologist, etc) so they v much understand what’s happening from multiple aspects. It also might be beneficial to call different PT’s in your area and ask if they have anyone who focuses on EDS or know of anyone who focuses on EDS or connective tissue disorders in the area. Im at a point i refuse to see a PT unless they have at least a little experience or are willing to listen to me when i say “if i do anymore im going to start subluxing”. If a pt understands eds, they usually wont push u too hard. If u say stop they say ok lets do a different part of the body. Ill add a link to a book with a protocol for EDS patients that i give to every single PT ive ever had. It goes into what eds is and why it needs to be treated SLOWLY. Theres phases for the physical therapist to take you through, and another section for you to work on at home. Its very informative for an unknowlegable PT.
If a doctor ever told me to just suck it up and live with it and give up on life basically i would probably never go back to them. I almost feel like that’s malpractice. Because there are ways to improve the quality of life w EDS. Its not curable sure but it is treatable. Itll take effort from u but it is possible. Dont give up just yet and look for some dr’s who actually care about ur well being and know what theyre talking about with EDS. :) <3
That’s was hEDS experts say is the problem with standard PT programs for us. I recently started this: Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_i_ND66CEK96RWMYWHKG02S?_encoding=UTF8&psc=1
It’s verrry slow going but makes sense for my body at least.
https://www.amazon.com/dp/1478758880/ref=cm_sw_r_apan_glt_i_R1EXM1B7RHY4PHZHMVV1 I don't often recommend things from Amazon but I have been using this book has decreased my pain by about 50%. If you can find a PDF copy somewhere on the internet I think it can probably help
Diagnosis and treatment of movement impairment syndromes is a good one. I used it in my time working with basic trainees. this one.
A copy of Kevin Muldoney’s book to your PT may be a good. Or find a PT trained in pelvic floor and manual therapy. https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880/ref=mp_s_a_1_3?crid=9JW8DEVK6T7P&keywords=kevin+muldowny+physical+therapy+guide&qid=1644385338&sprefix=Kevin+muldo%2Caps%2C157&sr=8-3
I love the idea of a new bag of some sort.
A book that I have gifted to multiple students and still use multiple times a week is Ortho Notes. It’s small and spiral bound, perfect for a desk drawer or scrub/lab coat pocket.
Another similar thing would be an anatomy app for her phone/tablet. I have one called Essential Anatomy, but I’m sure others may recommend other options.
Try this book, my physiotherapist said i didn't need to keep seeing her if i followed this book and to just book in with her if i had a problem or new injury https://www.amazon.ca/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880/ref=asc_df_1478758880/?tag=googlemobshop-20&linkCode=df0&hvadid=292914682536&hvpos=&hvnetw=g&hvrand=3964317137124261645&hvpone=&hvptwo=&...
Make a list, do 2 things a day.... make a phone call then do 10 min of physio. Set an alarm, have someone call to remind you, whatever you gotta do.
As a pta, I’ve found this “Ortho Notes” to be helpful, both for myself to remembering special tests, anatomy, etc. it’s also helpful for showing stuff to patients. It’s just a little flip book, so it’s easy to carry in a pocket or bag
Ortho Notes: Clinical Examination Pocket Guide https://www.amazon.com/dp/0803666578/ref=cm_sw_r_cp_api_glt_fabc_GCKE1H0TFKVFHG4V0VVJ
It is unlikely you need to strengthen your pelvic floor, so don't do kegels, these could actually be detrimental if you are tightening up an already tight floor and I think are more for women with a loose pelvic floor after childbirth say. Look up reverse kegels. This is the act of relaxing and 'dropping' the pelvic floor. I found Amy Stein's book helpful which talks through how to drop your pelvic floor whilst doing deep breathing.
Yeah mate it is tough in the UK to find a PT. Where are you based? There is Gerard Greene near Birmingham if that is helpful. I've not seen him but he is recommended on the UCPPS forum. Otherwise if you are really struggling you could always look up womens pelvic floor physios and then check to see if they would also do mens.
May be cheaper elsewhere, but this is the book I believe
Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://smile.amazon.co.uk/dp/1478758880/ref=cm_sw_r_apan_glt_fabc_M4M2VPN8WRD3ENGT3QRD
Hi, I can relate to how you feel.
Someone else on Reddit recommended this book and it has really helped me. https://www.amazon.com/Heal-Pelvic-Pain-Strengthening-Incontinence/dp/0071546561
I am not completely painfree but have made huge improvements in the past two months.
I haven't read it, but I understand that this book describes a protocol for PT for EDS, and it's supposed to be pretty good. It's apparently written by a PT.
https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
This has all special tests for each region of the body. Along with most tests you will use in an eval