Dysautonomia/POTS/Ehlers-Danlos

[bocaburger]

Hello, I hope it's ok to post here and I apologize if not since I am not dealing with a special needs kid.

My sister (25 years old) was just diagnosed with POTS and probable EDS (hypermobility type). She has been sick for at least 10 years but hasn't been able to get a diagnosis that makes sense until now.

I am trying to find as much info as I can about her condition(s) but unfortunately they are not well researched and there's not a lot out there. If any of you have dealt with these disorders or any type of dysautonomia I would appreciate some help.

Thanks

[mrsbuttinski]

Welcome.

There might not be any moms with children who have these conditions on this board- these are typically dxs that come a bit older. But there might be some moms with them.

I know 2 people with EDS and one who had a POTS dx for a time. All 3 of them have other health concerns that impact their presentation, so they may have very different issues than your sister deals with.

This is a pretty good overview of POTS-

myheart.net/pots-syndrome/

This is the support and information site for EDS-

ehlers-danlos.com/


I have a friend whose DD has EDS- a milder form with hypermobility. She also has an amplified pain syndrome. The kid gets hurt a lot- but, TBH, I have suspected ADHD in this kid for years. She's very impulsive and gets hurt doing stupid shit. She's a drama queen by nature and rather a tiresome individual- she has a developmentally delayed brother and she is vicious to him. Aside from injuries, she seems to have a lot of issues with stamina (I am suspect- she's a gymnast and dancer) and also sleep.

My niece also has EDS. Hers is a hypermobility presentation. She has had surgeries to stabilize some joints going back to her teens and also had one or two replaced. Hers comes with fibromyalgia and hormone issues related to her pituitary gland. She's only 30 and is unable to work currently. Previously she was a high energy, creative and engaging person. She works hard at living her bests life, but sometimes it is really hard for her.

I have a friends whose son had POTS. His was thought to possibly be related to his puberty growth spurt; they thought he kind of outgrew his blood volume and once his growth slowed, the symptoms went away. He was also converting at times which made it hard to understand what was going on. That also passed with medication and T therapy.

Both the EDS girls belong to a support group they found through the EDS link. Be careful, though, some of those groups devolve into a race to the bottom.

[bocaburger]

mrsbuttinski, thank you so much for your response. The POTS link you included is the most helpful one I have read so far. Much appreciated.

[akafred]

I'm afraid I am not much help. I have had some mysterious health issues my whole life. My only real dx is Hashimitos Thyroiditis, and a pseudo-dx called "mixed connective tissue disorder" (similar to lupus but different). Because of the Hashi's, dx of lupus wasn't possible because the tests for one can trigger positives or borderlines in the other. There are also overlapping symptoms from other connective tissue disorders. But it doesn't explain everything.

I've recently learned about EDS (hyper mobility mostly) and it fits like a glove, but I have not yet had testing. I plan to discuss with my PCP on our next visit to see if it is worthwhile to test for it (DNA/genetic testing).

I do get lightheaded when standing and dizzy at random times but IDK about POTS.

[cam]

Hi. I have EDS Hypermobility Type. I don't know where to begin on the topic (and my links are all saved on my old computer), but I would be happy to answer any questions you might have about my experience or anything else I can.

[mcribster]

EDS and POTS are often related to lyme and associated infections. many people have chronic lyme w/o knowing it or remembering a bite. I did not know i had it and passed it on to my son. it presented as autism. he is extremely hypermobile and has had bouts of POTS like symptoms/vertigo. Dr. Horowitz has a good book called Why Can't I Get Better that covers many of the infections that these infections masquerade as. Good luck.

[bocaburger]

Oct 31, 2016 12:37:38 GMT -5 cam said:

Hi. I have EDS Hypermobility Type. I don't know where to begin on the topic (and my links are all saved on my old computer), but I would be happy to answer any questions you might have about my experience or anything else I can.

I guess my most important question is, what has been the most helpful in managing your symptoms? I know it's not really treatable but I would love to give my sister some practical advice on how to improve her quality of life.

Thanks for sharing your experience.

[mrsbuttinski]

Oct 28, 2016 13:45:07 GMT -5 akafred said:

I'm afraid I am not much help. I have had some mysterious health issues my whole life. My only real dx is Hashimitos Thyroiditis, and a pseudo-dx called "mixed connective tissue disorder" (similar to lupus but different). 

I do get lightheaded when standing and dizzy at random times but IDK about POTS.

Orthostatic (postural) hypotension can be a symptom of hypothyroidism. If the levels of thyroxine are even a little low, it can lead to a slower heart rate and blood pressure which can cause a feeling of dizziness when rising or standing. It will be more pronounced if you are dehydrated. I know people with Hashimoto's who hydrate with pediatric electrolyte solution to avoid this- they claim it helps with weight control/water retention. I've not actually tried it, but I drink a lot of water through the day. 

As a young woman, I had a lot of trouble with this, especially on warm days and during my period. I used to go to ground in my science labs on the regular. I switched to a more proactive endocrinologist. swapped out Armour for branded Synthroid, and went of OCs to keep my endometriosis in check which helped a lot. 

[seadragon2013]

Oct 28, 2016 13:45:07 GMT -5 akafred said:

I'm afraid I am not much help. I have had some mysterious health issues my whole life. My only real dx is Hashimitos Thyroiditis, and a pseudo-dx called "mixed connective tissue disorder" (similar to lupus but different). Because of the Hashi's, dx of lupus wasn't possible because the tests for one can trigger positives or borderlines in the other. There are also overlapping symptoms from other connective tissue disorders. But it doesn't explain everything.

I've recently learned about EDS (hyper mobility mostly) and it fits like a glove, but I have not yet had testing. I plan to discuss with my PCP on our next visit to see if it is worthwhile to test for it (DNA/genetic testing).

I do get lightheaded when standing and dizzy at random times but IDK about POTS.

I also have Hashi's that affects my joints, plus a diagnosis of joint hypermobility syndrome. As far as I know, my Orthopedic surgeon never diagnosed me EDS as a child, but I have a long history of sublaxations and dislocations (shoulders, elbows, thumb, sternum, hips, knees, ankles, spd in pregnancy).

OP, I have found that PT to stabilize problematic joints has been helpful over the years. Certain forms of exercise are either off-limits or need to be closely monitored (running, contact sports). I jog because I love it, but I have to take it slow and take time off right away if joints start to hurt. The elliptical and exercise bike are my BFFs. Balance can be an issue - my joints slip sometimes, so I am probably more careful than most about falling. I also consciously try to avoid hyperextending joints just because it's so easy to do without thinking.

Basically, there is a lot your sister can do to manage hypermobility and maintain an active lifestyle with the help of her doctor and physical therapists.

[akafred]

seadragon2013, yes I have a lot of joint separations and dislocations in my history too, including now a torn rotator cuff because of it. I remember this convo when I tore my ACL where the ortho surgeon was asking why my knee was so loose. Then he tried the other knee and commented that it was also loose. Asked if I was ovulating (nope; menstruating). Checked my fingers and elbows and said, "Huh, all your joints are loose." Told me some women get looser joints when ovulating and then dropped the subject.

The other one that stood out to me in the EDS symptoms that seemed odd was skin tags. I have oodles of them.

[cam]

Oct 31, 2016 22:03:14 GMT -5 bocaburger said:

Oct 31, 2016 12:37:38 GMT -5 cam said:

Hi. I have EDS Hypermobility Type. I don't know where to begin on the topic (and my links are all saved on my old computer), but I would be happy to answer any questions you might have about my experience or anything else I can.

I guess my most important question is, what has been the most helpful in managing your symptoms? I know it's not really treatable but I would love to give my sister some practical advice on how to improve her quality of life.

Thanks for sharing your experience.

Trying to balance active times with restful times, though the balance point is a moving target. Heating pads/packs - various types for various purposes (i.e. clay holds heat longer, rice conforms to body better, electric is constant and level heat but obviously not mobile, etc). Vehicle seats that are highly adjustable and heated (I probably use this feature more as a heating pad than I do to warm up). Massage. Chiropractor if he or she is very familiar with hypermobility so as not to loosen joints further. Spring for things that help, especially in the areas of common usage (i.e. a quality chair - as in quality for addressing hypermobility as not all quality chairs are equal in that regards - if at a desk regularly, a bar stool in the kitchen if doing a lot in there regularly, a desk or other workspace table at a proper height relative to a chair, etc). I've done PT, surgery, braces, etc. Everything depends on one's severity, which joints are most impacted, and other such factors though.

[bocaburger]

@akafred So interesting that joints can be looser around ovulation. My sister's other, more systemic symptoms are definitely affected by her menstrual cycle but it never occurred to me that hormones and connective tissue can interact like that.

[bocaburger]

seadragon2013 mrsbuttinski I'm very interested in the connection with Hashimotos. I have Hashimotos as well as a couple other family members, but my sister that the post was about does not. I insisted on her getting a full thyroid workup last year and everything was normal. But I doubt it's a coincidence that there is so much overlap between these conditions and such a strong family history...

[bocaburger]

@akafred cam seadragon2013 mrsbuttinski Do any of you have advice about driving while symptomatic? My sister has been feeling really unsafe in the car because she'll be out somewhere, start feeling crap, and need to go home but feel too out of it to drive well. She lives in a somewhat rural area so giving up driving would be huge but she obviously doesn't want to get in an accident. Any thoughts?

[cam]

Nov 6, 2016 14:27:49 GMT -5 bocaburger said:

@akafred cam seadragon2013 mrsbuttinski Do any of you have advice about driving while symptomatic? My sister has been feeling really unsafe in the car because she'll be out somewhere, start feeling crap, and need to go home but feel too out of it to drive well. She lives in a somewhat rural area so giving up driving would be huge but she obviously doesn't want to get in an accident. Any thoughts?

What symptoms is she having that impact her driving? For example, my driving ability is most - though not exclusively - impacted by back pain, hip pain, and tremors, but how I deal with the first two is obviously different from how I deal with the last.

[bocaburger]

Nov 6, 2016 15:03:26 GMT -5 cam said:

Nov 6, 2016 14:27:49 GMT -5 bocaburger said:

@akafred cam seadragon2013 mrsbuttinski Do any of you have advice about driving while symptomatic? My sister has been feeling really unsafe in the car because she'll be out somewhere, start feeling crap, and need to go home but feel too out of it to drive well. She lives in a somewhat rural area so giving up driving would be huge but she obviously doesn't want to get in an accident. Any thoughts?

What symptoms is she having that impact her driving? For example, my driving ability is most - though not exclusively - impacted by back pain, hip pain, and tremors, but how I deal with the first two is obviously different from how I deal with the last.

For her it's the autonomic nervous system symptoms from the POTS - brain fog, lightheadedness, etc

[akafred]

My POTS or whatever symptoms are positional. As long as I don't change position, no problem.

[mrsbuttinski]

My young friend with POTS was not cleared to drive at the time. It played into his choice of college.

[cam]

Nov 6, 2016 16:45:33 GMT -5 bocaburger said:

Nov 6, 2016 15:03:26 GMT -5 cam said:

...

For her it's the autonomic nervous system symptoms from the POTS - brain fog, lightheadedness, etc

I get lightheadedness when I suddenly make a significant change in my position. I do occasionally experience lightheadedness and/or brain fog tied to a more intense tremor episode, so for that I would need to pull over for a bit when I feel it starting. The majority of my brain fog though comes from my ADD, so not really helpful to your request. For your sister, it may be helpful to make note of events leading up to episodes (i.e. what was she doing when and in the period just before an episode, what had she had to eat or drink that day and how close in time to the episope, what time of day did it occur, etc) and watch for any trends that might [hopefully] come to light. That information could allow her to plan around or minimize episodes (in frequency and/or severity).