LastUnicornLady

Hey, everyone. I am trying to remember the name of a hybrid cane/forearm crutch that I saw an EDSer using once. The handle twisted around your arm to provide wrist support, and it had black foam... I can't remember the brand to save my life! Does this sound familiar to anyone?

I've been doing occasional iv saline treatment at a "wellness clinic" near my school. I find they help a lot with getting my heart rate slightly lower and increasing my energy. I wish I were able to get them more often, but I'm self-pay and it gets kind of pricey...

Hey, everyone. I have been struggling a lot with fatigue and balance issues lately, and I'm starting to look into getting a rollator/walker. I've been using a cane, but I've had to use it significantly more frequently, and it's just not enough. I causes more pain in my hand and shoulder, and I have to juggle carrying anything in the other hand. I'm a college student, so I have to lug a backpack around quite a bit. Do you guys have any suggestions on looking to find an affordable rollator/walker? Also, do you of you use one, and does it help with leg fatigue/weakness? Thank you!

Thank you for the kind words and advice! I ran out of zofran and haven't been able to refill it in a while, and being off of the zofran has helped immensely with constipation. It's still a pretty big issue, but I am having more frequent bowel movements. I see my doctor in a week and half so I will talk to him about a zofran alternative (have tried chamomile and ginger and other home remedies with little to no results). I've also been taking some magnesium and eating a softer diet, and that seems to have helped. I'll be talking to my doctor about the gi issues and hopefully will get a referral to a specialist, but I may wait until I see my psychiatrist in September to get off of the seroquel and see how I do then. Gastroparesis seems almost certain due to the symptoms...

Hey, everyone. I am struggling a lot right now with my gastrointestinal system. I've stuggled with constipation a lot over the years, and it seems to have been worsened by the Seroquel I started a few months ago, in addition to the zofran I take for nausea as needed. For the last week and a half, all of my symptoms have doubled in severity. I haven't been able to have an actual bowel movement in a week now despite taking a daily stool softner and repeated attempts at stimulant laxative usage and a suppository. I've also had really severe nausea to the point of nearly vomitting after almost everything I've eaten. I've tried ginger tea, heating pads, my zofran (which has worsened the constipation and not helped the nausea much). I'm at the end of my rope, and my follow up with my doctor isn't for a few more weeks. Help?

My biggest coping skill for vacations is to take frequent breaks. Schedule in down time between activities, and make sure everyone in your party understands that if they want go do something back to back you may not be able to participate. If you're out doing museums, zoos, and other tourist attractions, make use of any wheelchairs or motorized scooters they may have available. Make sure you have water on you at all times, and a small snack if hunger/salt is also an issue for you. Hope this is helpful information.

Hey, everyone! I've been taking Zofran as needed for several years now to deal with my pretty severe nausea that happens pretty much every time I eat right now. The entire time I've taken Zofran it has worsened my constipation issues and I dealt with it okay; however, now that I've had to add an anti-psychotic that also has constipation as a side-effect, I am no longer able to deal with the constipation issues. I'm in the process of seeking a second opinion to get off of the anti-psychotic, but that's been delayed due to long wait lists. I'll be seeing my PCP in about a month for follow up and I'll be talking to him about Zofran alternatives, but I was wondering if anyone else had any experience with anti-nausea meds that aren't Zofran, which might not cause such bad constipation?

I've been having really bad night sweats for a while now. I will wake up 3+ times a night drenched in sweat to the point where I actually have to change clothes every time. It's super uncomfortable, and I feel like it can't possibly be good for me to be sweating out so much water when I already have difficulties with dehydration. Right now I'm without A/C so that's obviously a factor, but I'm fairly certain I've been having this issue before losing A/C. Does anyone else struggle with this, and is there anything you've found to help?

Ha e you ever seen a chiropractor? I also have EDS and my ribs get out of alignment easily and often. I have to see my chiropractor at least once every two months to keep my chest pain semi under control. If you do decide to visit a chiropractor be very careful and talk about your medical issues as length prior to being adjusted. If you can find one, I recommend trying to find a chirp who uses an activator tool instead of manual adjustment, as I find it is significantly more gentle on my fragile joints. I'm not sure if this will help you at all, but that's something I wish I had known about sooner to help relieve my chest pain.

I have definitely not been able to "acclimate" to summer heat, I just have to avoid it. I am currently living in Texas without A/C (only for another week when we move!), and it is miserable. It's been pretty consistently in the 90s since June began, and it gets over 100 pretty often in the July/August months. I have to sit in front of a fan constantly, or I get quite sick and unable to function. However, my body also responds terribly to the cold. My joints do not like the cold at all, so I honestly find that I have to be inside during both extremes.

I have EDS that causes severe joint pain in addition to my POTS symptoms including leg weaknes, particularly right side. I use my cane on bad days, when going for extended walks, or when i'm having issues with balance. Mine is green plaid, which helps me feel cool as an 18 year old using a cane.

Hey, everyone. I've been sick for nearly a week now and was finally diagnosed with mono. I know from past experience that having any kind of infection can leave me fatigued and nearly bedridden for weeks. Some typically healthy individuals can take weeks to months to get over mono, and I'm curious if anyone with POTS/EDS has experienced mono, and if so how did it go? Is there nything I can do to give my body the best chance possible at recovering in a timely fashion?

Hey guys! I'm wondering at what point you finally decided to purchase/start using a wheelchair on a semi-regular basis? What symptoms prompted you to do so?

After years of thinking about it, I'm finally pursuing a medical assistance service dog. I found a local organization that assists in adopting a young dog from a local shelter and training it to be a medical assistance service dog. I'm really excited about the prospect of having a service dog who can assist me during/after fainting episodes, when my pain levels or fatigue are high. I've only seen a few articles and stories about people with medical assistance service dogs for POTS/EDS, so I was wondering if I could connect with anyone on here who does have a service dog. What was the process like for you? How has it improved your life, and what are some tips you might have for me? Thanks so much!

I was having a lot of issues at the time, and was referred to a GI doc for stomach pain and other such problems. I mentioned off-hand the fact that I had been having issues with passing out, and she suggested I look up POTS, and maybe get in with a cardiologist. It took two tries to find a cardiologist who would listen, but I finally got a diagnosis because of that gastroenterologist.

So sorry you ended up being admitted, Becia, but hopefully this will allow you to get the best care, and hopefully it will be a short stay.

There is definitely some amount of family history for me. My mother, grandmother, and at least two (possibly three) siblings have vasovagal syncope or NCS. I also have a genetic disorder called Ehler's-Danlos Syndrome, which frequently linked to POTS.

Just boosting this to see if anyone has insight to share.

I'm so sorry to hear about everything, Becia! It's difficult losing a loved one at any time, but particularly when you're in an already precarious health state. Hopefully you are able to manage without a trip to the hospital.

I'm not sure why, but I've noticed feeling severely depleted after showering or swimming. My chest and stomach get tight. They cramp up. I have a hard time catching my breath, and I feel like I'm not getting enough air in. I'm in pretty severe amounts of pain. Recovering from swimming takes a lot longer than recovering from a shower, but there's a definite rest period for both. I'm usually better from a shower with 2-3 hours after taking one, but the swimming lag can carry over into the next day. I've been trying to use swimming as a good source of exercise for me because it's typically easier on my joints and I don't feel my POTS symptoms quite as strongly. But as soon as I get out of the pool (or before I get out of the shower), I start cramping up. Pretty soon it's my entire right side, the area underneath and stretching into my chest. It feels like I'm wearing a corset too tightly and it's jabbing into me and restricting air flow. Does anyone else get like this? Do you have any tips on how to possibly make swimming work a bit better for me? I really don't want to have to give it up, because I feel like there have been definite benefits from it- increased Vitamin D exposure, for instance. Getting out of the house, for another. I just really want to make this work, and would like a few tips to try before I give it up... Thanks so much everyone! Sorry I haven't been updating lately. I've been really preoccupied with sorting through my new(ish) EDS diagnosis and learning everything that comes along with that. I'm also trying to work on moving past the searching stage into the coping stage to accept my new life and what it means for me.

Thank you for the concern, everyone! My throat actually already looked better this morning, so I didn't go to the doctor. I suspect that it was a virus, due to the course it ran and how it looked. Probably silly to suspect strep. looneymom- I've had several cases of tonsillitis over the years, but never strep. I'm actually more likely to get a respiratory infections like bronchitis than I am to get a throat infection, normally. We also determined that Ehler's-Danlos Syndrome was the cause of my POTS.

Welp... I seem to have caught some sort of bug. Possibly strep. Just what I needed. (Said no one ever.) It has really hit me hard, but I'm doing a fair job of staying hydrated- that's been my primary objective this weekend. That and getting enough the eat. I may or may not go to the doctor tomorrow... I guess we'll just have to wait and see. (I don't like going to the doctor right away.) So... I've asked this before, but I'm asking again- any tips for coping with an illness on top of POTS?

So glad that doctors are trying to help you, Goschi! A lot of people have negative experiences with doctors, so it warms my heart to hear that things are going well for you overall. Hopefully this stay reveals some answers. Did they give you any idea how long you would be there?

My mean platelet volume, was actually low, Aimes. My doctor and I have never discussed Ativan, or any kind of drug to control them. We may at my next appointment, though, if they continue. At this point, we're just waiting to see if they get better with increased potassium and magnesium.

Well... Ended up in an emergency doctor's appointment because of extreme heart palpitations. Of course, I didn't have any palpitations while I was there, and certainly not while they were doing the EKG. Because that's just too easy. Isn't that how it works, though? Anyways, I also got some blood-work done, which came back normal. And the EKG came back normal, too. The doctor said it was likely just "normal" palpitations that are often seen with POTS, and gave me info on what to look out for in case they did get dangerous. Anyways.... He ran some blood work, and everything came back normal (didn't test vitamins, just CBC and kidney function) except for the mean platlet volume. He wasn't too worried about it, and I'm not either, but I was interested to know if anyone else had that. Also, do you have tips for coping with extreme heart palpitations that aren't dangerous or anything?