Diagnosis EDS, POTS and Riding (mostly venting)

[DawningDreams]

I am a high school student (graduating in 2019) who was diagnosed with Ehlers Danlos Syndrome (Type III, Hypermobility) and Postural Orthostatic Tachycardia Syndrome last year. I’ve had issues with constantly injuring myself for as long as I can remember but it’s always been relatively manageable because it’s only one or two joints at a time.

Over the summer, my POTS symptoms increased significantly with dizziness, passing out, heat intolerance, etc. I’ve been put on new medication (Midodrine) which has helped significantly but hasn’t improved my brain fog and chronic fatigue.

For the past three-four weeks, I’ve been having issues with a major EDS flare-up. My hips, shoulders, knees, ankles, wrists, elbows, neck, fingers, pretty much every joint, is out of whack and dislocating/subluxating constantly. The pain has been unbearable and it’s been hard to take care of horses or even walk down to the barn. I’m getting more blood work done (inflammation panel, cbc/electrolytes, etc.) to rule out anything that is treatable that’s causing this flare up.

Without answers, it’s been hard facing the fact that I may not be able to (or it may not be safe for me) ride much. I am selling my POA filly (purchaser coming to pick her up this weekend, hopefully) but I’m also considering having to sell my mare. She’s higher-strung, OCD boss mare mentality, and a very forward horse. However, she is my first horse and I don’t know if I could ever bring myself to sell her. I’ve considered leasing her but I’m worried about her being treated wrong/ridden roughly as she is very sensitive and doesn’t forgive very easily. I’m at a loss for what to do as riding for even 30 minutes is exhausting and excruciating. I want to do what is right by my mare.

Any ideas for making riding more bearable? I’m currently riding in a close contact Pessoa (bought used so not sure what kind) so I’m not sure if there is a different kind of saddle that might be better (would have to be reasonably priced)? Suggestions on what to do with my mare?

[downen]

Hi DD, I’m so sorry you have to deal with this at such a young age! I also have POTS, but it is due to my Addison’s Disease (Adrenal Insufficiency). Your post caught my interest in that there seems to be a link between Addison’s and EDS (if you google the two diseases together you’ll see what I mean). There is also a link between EDS and POTS, leading me to believe that EDS is an autoimmune disease. Autoimmune diseases often come in multiples, I’m afraid. Have you been checked for autoimmune activity (ANA test)?

The reason I’m inquiring is because the POTS is very often a SYMPTOM of another issue, not the issue itself. When you get further testing done, I would insist they do a full endocrine workup, ANA, and a tilt-table test (if you haven’t already had that). My thinking as that you could have some issues with your endocrine axis which could be triggering the POTS. In my case, my adrenal glads stopped functioning and stopped producing aldesterone, which regulates potassium and sodium, which lead to the POTS. Once diagnosed and treated, I rarely get POTS symptoms any more.

As far as dealing with POTS, the key is hydration, hydration, hydration and salt, salt, salt. I’m not sure what tests you’ve had, but be sure they check your potassium and sodium on a regular basis. I’m sorry, I can’t help with the pain aspect, but I suspect if you get what is causing the POTS under control, perhaps that will address the pain (it did in my case). You might also try CBD oil (made from hemp). You can get it online, and it does help with inflammation, although with EDS it might have too much of a relaxing effect to be useful.

Ask your doctor about Fludrocortisone, it’s a much better choice that Midodrine for regulating your orthostatic system.

If I can be of any further help, feel free to PM me. I’m in my late 50s now, but I was having issues younger than you are now, and now in hindsight I can see what was going on, but at the time the doctors just sort of wrote things off. I hope you can get to the bottom of things and feel better soon!

[LauraKY]

POTS, brain fog and chronic fatigue scream possible Lyme or other tick borne disease. Has that been investigated?

https://www.txlda.com/lyme-in-tx/

[vali]

For the POTs, I strongly recommend Saltstick capsules. For the EDS symptoms, you may want to look at the Facebook group called EDS and the Cusack supplement protocol, many people have found some of the supplements helpful. My daughter has also benefited from working with a pt who works with the Pilates reformer and who has experience with hypermobility and EDS.

[DawningDreams]

Downen, thank you for your feedback! I’m not entirely sure what panels and tests they are running currently but we are still waiting to hear back from the doctor about results. My cardiologist wanted me to try the Midodrine first before the Fludrocortisone because I tend to react negatively to steroids and steriod-like medications. I have a follow-up with him in about a month to see and discuss further options. I drink 100-120 ounces of water/fluid every day and have been taking 5 1gram salt tablets daily. I do try to get daily exercise but it can be difficult with the pain and joint damage (I’ve been supposed to start Dr. Levine’s exercise regimen but have been unable to due to the EDS flare-up).

My pain isn’t all related just to EDS though. When I was 12 I was diagnosed with Complex Regional Pain Syndrome after being in excruciating pain for months for no apparent reason. I’m currently in ‘remission’ but do have flare-ups from time to time. My EDS and POTS symptoms began before that but I’ve never been the same physically after the CRPS ordeal.

LauraKY, I’ve only ever been bitten by a tick once and it was a Lone-Star tick. That was way after my symptoms began increasing but I’ll definitely mention it to my doctors and see what they think.

Vali, I see a physical therapist regularly who is very well versed and experienced with my conditions. He is a functional manual therapist and has helped a lot with my muscle spasms, back pain, etc. I’ll definitely look into the Cusack protocol.

[downen]

Well since your pain issues started at age 12, I would bet there is something more going on than just the EDS. Autoimmune issues often begin during puberty, as the hormone fluctuations can act as triggers. Even more reason to explore the endocrine side of things.

As far as pain relief, I’ve had pretty good results with alternative therapies. I’ve gotten Acupuncture for years, and recently have discovered Reiki. If budget permits, I’d give them a try!

I hope you can find some answers sooner than later. As advanced as medicine is these days, it seems many doctors have goggles on when it comes to seeing things “outside the box.” I’d research as much as you can, and keep fighting for answers!

[impeggysue]

I have EDS type III and POTS. EDS and POTS and unexplained pain or regional pain are all symptoms of your underlining disease (EDS which is more than a mutation in your collagen production it also causes autoimmune issues and endocrine issues). Few doctors and even fewer people understand the complex nature of EDS and how it impacts multiple body systems. I have had a long struggle with this disease and I have learned a lot along the way. Here are my suggestions:

1. Most stated have EDS support groups. Find your state’s group and get in touch with them. Through my state’s EDS support group I found doctors that specialize in EDS. This is really important. It is not good enough to see a local physical therapist or a cardiologist or a pain management doctor or an orthopedist or neurologist, or endocrinologist or rheumatologist. You must see specialists that specialize in working with EDS patients; most doctors do not. You may have to travel far distances to find the right doctors. Remember you have a RARE disease most local doctors will not know what to do with you. You also must see all of the doctors I mentioned above and you must see ones that specialize in EDS.

2. Join the Facebook EDS support group they have lots of good advice.

3. Learn everything you can about your disease, you must be your own advocate and you must persevere until you find the right people to help you.

4. Find a great Physical therapist that specializes in EDS, dry needling really helps me. Your need muscle strength to compensate for your ligament and tendon weakness but you have to be careful not to push too hard either. I am also trying the a new hormone protocol that looks promising. Many people with EDS do not metabolize pain medication like normal people so you need to work with pain management specialists that understand this. (For instance lidocaine and Novocaine have no effect on me)

5. Get measured for ring splints and order the silver ring splints they really help keep your fingers from dislocating.

6. Figure out what is causing your pain and get it fixed when you can. Unfortunately EDS can be many surgeries. I have had ten so far, but the right orthopedist is crucial. You will be prone to ligament tears, labral tears of the hip and shoulder, back pain etc. There are some exciting advances in fixing these issues using cadaver parts to reconstruct ligaments and labrums. (My surgies have been successful in reducing and sometimes eliminating pain by using cadaver parts and fusions). I also have my surgeries in the winter when it’s cold and I wouldn’t want to ride much anyway.

7. Keep records of all your medical problems, medical visits, medical records. You may need them in the future for disability claims. Talk to a lawyer that specialzes in EDS disability claims. I am 41 and will have to take disability retirement within the next few years.

8. I have two horses. I can not manage to do the barn work like I once could, but I can still ride. I know the happiness having my horses gives me and you need something to look forward to. I have some friends that ride my horses when I am too ill and a supportive family (that really helps)

9. When it is hot, ride very early, ride in the shade, drink lots of electrolytes before riding to help keep the BP up and have reasonable expectations.

10. Make the most of the time you have, remember even when your having bad days you still have good days to look forward to. I have days where the paIn is unbearable and I have days where I feel really good, remember the good days, Be positive, there are lots of people in this world worse off than us.

11. Remember EDS is autosomal dominant and they have not found the gene mutation(s) that cause EDS type III yet. That means you have a 50% chance of passing this disease on although your genetic counselor should have gone over all of this and your family history with you.

12. Remember everyone with EDS is different. My two cousins have EDS III and they have different problems than me. Some people manage very well with EDS for many years.

I live in Maryland so if your anywhere near me I can give you the names of some top specialists. My orthopedist is a miracle worker, he pioneered the techniques for using cadaver parts on EDS patients. I would fly across the country for him. I would be happy to help in anyway I can feel free to send me an email I am happy to chat anytime, it’s not easy having an invisible disease.

[Knubbsy]

Second the recommendation for pilates. It has helped me dramatically over the last year. Just be sure to get a good instructor - mine is STOTT trained but the studio owner is Power Pilates trained and also works with EDS clients. Both instructors are also trained dancers so are used to needing to stabilize hyperlax joints. My last PT recommended I stick to apparatus over pure mat since there are more accommodations that can be made. Look for instructors who specifically mention working with adaptive methods- some schools offer special training programs for adaptive Pilates (Pilates Method I think has an MS certification). Dance Strong also seems to have promise since the creator mentions strengthening hyperlax joints and working with the tightness that they cause but I haven’t tried it yet. But something my mom (hEDS, Sjogrens, Lupus, UC, etc) has always emphasized that I need to keep up muscle tone in my core, quads, and hamstrings. Those really stabilize loose hips. Her’s atrophied during a Lupus flare up and it was miserable to build those backup.

As for saddles - I ride in a Bates Innova on a TBx. The narrow horse (but wide tree) + narrow twist+ adjustable stirrup bars keep me fairly happy - horses with more sprung ribcages do leave me crippled for a couple days. As a teenager I rode in an ancient Crosby CC that worked for what was then diagnosed as “growing pains” (EDS, ITBS, and probably patella tendinitis). Pay attention to where the stirrup bar is and if the saddle is really designed with someone your height in mind, whatever that is.

I also found that forward thinking is better for me. Kick rides tend to exacerbate my hips more so I wouldn’t necessarily count that as a fault for your mare (for your own use at least.)

@impeggysue

11. Remember EDS is autosomal dominant and they have not found the gene mutation(s) that cause EDS type III yet. That means you have a 50% chance of passing this disease on although your genetic counselor should have gone over all of this and your family history with you.

Good news is that a donor gave a significant amount towards hEDS genetic research! The ED Society announced it yesterday (well significant by normal people for standards, I’m not sure how far it will go in medical research)

[DawningDreams]

Thank you everyone for your feedback and suggestions! I recently got the results back from my bloodwork - they ran a full CBC, electrolyte panel, and autoimmune panel (tests for 150 conditions/diseases). Everything came back totally normal except for a slightly low sodium (even though I’ve been taking 3-5 1gram salt tablets a day on top of increase salt in food) and low, but still in the normal range, magnesium (I do take a calcium/magnesium supplement so it’s a little odd).

I recently began trying to start Dr. Levine’s POTS protocol exercise regimen but it’s been difficult due to joint pain and dislocations. I’ve started dedicating at least 30 minutes out at the barn every day doing general care and work which seems to be easier on my body than the gym. I am starting a riding fitness, pilates-based program along with a stretching/strengthening schedule.

My physical therapist has been wonderful for the general aches and pains but has created a lot of frustration with this flare-up. He tells me that one of my cranial/cervical nerves is just ‘stuck’ causing all my upper body issues. He’s not recognizing the dislocations/pain as something joint related. He even told me that because of the nature of my hip dislocations, I’m forcing it to pop out even though I’m not.

We are looking into finding a rheumatologist to see for more information. One had agreed to see me before reading my medical history. She called back and said that I needed to go see someone at UT Southwestern because of the rarity of EDS and POTS. My doctors are trying to set up something with a doctor there but no progress has been made.

Because I am still in High School, writing and general movement throughout the day has been a struggle. I’ve been having to use a wheelchair (which sucks with my shoulders, wrists, elbows, etc.) because of my hips, knees, and ankles causing so much pain while walking. Writing has been miserable because I have to hold the pencil/pen so tightly and it causes dislocations/subluxing of my fingers.

I rarely get more than 3-4 hours of sleep a day (which doesn’t help with fatigue and brain fog) because I can’t ever get comfortable. Any time I move, my ribs, shoulders, hips, etc. shift causing pain. I do take withania complex and now a muscle relaxer to help me sleep but they rarely help. I’m exhausted and kind of at the end of my rope.

[TheBrownHorse]

Hi! fellow POTSie here!

I wanted to let you know I totally here you. POTS pretty much swept me off my feet for… well, it still does. I was dx in 2011, and had a great POTS specialist at UCSF at the time, though we didn’t get anywhere. Mine stems from refeading from Anorexia Nervosa (or that’s their best bet). I just actually had a TTT the other day… finally on a medication called Pindolol which has made life slightly more livable.

Horses have been a great way to help with POTS. Though somedays I just simply don’t have the energy or the brain power to go out there, I try to find someone to drive me so I can at least groom my guy or feed him some carrots. I know it sounds miserable and pushing yourself TOO much is defintetly counter productive, but a little push each day does make you stronger.

I too don’t sleep, have you heard of lifting your bed up at the head? research that, I’ve yet to do it but I have heard good results.

There’s a huge Facebook page for POTS that is a wealth of knowledge and also a lot of drama. I am thinking of maybe starting a POTSie horse page? would anyone be interested? We could all connect on there…

Best wishes to you!