StayAtHomeMom

As far as I know, having an underlying cause of hEDS makes it difficult to treat. There is no cure for hEDS and all they can do is treat the symptoms. Have they tried you on any medication yet? If you do try one of those centers please update this. I would be interested to know how well it works out for you.

Number 2 is the thing I think that would help me get my disability. I have suspected ADD and OCD. Couple that with POTS and it should be enough...maybe. I am working on my underlying cause again and in theory if it is what I think it is (type of skeletal autoimmune) then it should make it a perfect case. I can't sit too long, or stand too long, I may have to leave or call off at a moments notice. That sort of thing I am pretty sure would qualify me. I kind of feel like listing all of my bad day issues makes me feel like I am exaggerating. Because of the fact it is not like that all of the time.

Please be careful with the prednisone. My mom is stuck on it and has been for a while. Every time she tries not to take it, after a few days she can't get out of bed. Because she has been on it for 5 years or so she ended up with high BP and diabetes. It is great short term though. Methotrexate is supposed to be good. It didn't work for my mom though. She tried a few things and then they tried the humira. None of it helped like the doctor wanted. She was moving around lots better with the different medications but the swelling wasn't coming down. They tried an infusion medication. Rhemacaid (I think). That worked really well but suppressed her immune system too much. She ended up getting pretty sick. Not sure what she is on now. She moved to a different state and the doctors are horrible so she is having some issues and pain again. I imagine if it gets much worse she will just travel down here (a 12 hour drive) and see her old doctor. Hope you never have to get it done, but my grandma told me that they can do knuckle replacements. She has severe RA as well (my step-mom's mom). Thought that bit of information was kinda cool. It is exciting to see what medicine is capable of doing.

Wow. What treatment are they doing for you?

I agree with Pistol. That sounds like a job that would be very difficult to do. My job is office work and even I have issues with just that. I could not imagine doing any physical demanding work.

My hubby recently had an attack with high BP. He was 190/116 with chest pains. If his aspirin hadn't brought it down before I could get him away from work he would have been at the ER. PLEASE!!! Be careful with such high BP. 180/120 is potential stroke zone. I hope your symptoms calm down soon. It is scary when those numbers get up there. Good luck!!

I am hanging in there I am physically and emotionally in a better place than I was 2 years ago so that is the upside.

My elevated HR was not a perfect 30 point jump when I was testing everyday before my diagnosis. Even now my garmin shows high of 120 some days and 150 others. It depends on what I am doing, hydration levels, and time of the month. When I did research in the beginning before my diagnosis I remember reading the POTS is known to have symptoms that cycle. I have not had a dizzy spell that lasted longer than a second or two in about a year and a half or so. But when it started I had it constant for about 3 months then it would come and go as it pleased. That is what makes this diagnosis so hard to deal with. It is constantly changing. I hope you feel better soon. I know when I feel bad like you described sometimes I have to take a break. A few days of rest and hydration and I feel better. If I keep muscling my way through without the break I just keep getting worse.

Having an autoimmune can cause POTS (or at least go hand in hand. Chicken/egg sort of thing). Also not to freak you out but once you have one autoimmune you have an increased risk for others. Plus if I remember right RA can cause inflammation and be active before it causes the joint pain. So you may have had it before the diagnosis of it. My mom has it and it hasn't taken long for her fingers and toes to twist. I think she has had it long before her diagnosis. Just dawned on me, your only 30 how and when did they diagnosis you with RA?

I like it! "Feet wrists" thanks for the giggle. Glad I am not the only one that has trouble finding words.

What do you do?

She did when I first seen her a few years ago and diagnosed me with polymorphic light eruption. Most people get it when they go on vacation and their bodies aren't used to that much sun. And she did an ANA that came up negative. My thing is I have been getting it almost every year for the last 7 or 8 years. And this year has been worse. It covered my face (first time that happened) then it disappeared after a month and showed up on my forearms. I went and seen her and she gave me another steroid cream and it cleared it up but then it showed up in my upper chest and shoulders immediately after. It is itchy and obnoxious. The longest it has ever showed up was 2 weeks and it resolved on its own except this year.

I am seeing a neurologist. He is the only POTS specialist in my state. I need some med suggestions since mine are not working as well as they used to. And I am hoping he will have some ideas for underlying. Autoimmune runs so high on my mom's side and I have learned some new things since I seen him in January so I am hoping at the very least he might know someone good in my area. Or maybe he will suggest Vanderbilt or Cleveland Clinic to try and find my underlying. I found out my grandmother had the jak 2 gene which caused her myleofibrosous (not sure on spelling) and one sister has Sjogren's and Lupus and another has Hashimoto's. Plus I have a rash that has been moving and irritating me since April. It is the longest it has been around. Dermatologist just keeps throwing creams at me. I am also coming across information that what is normal for me is abnormal for most people (back pain and noisy joints).

I occasionally take breaks. When I am stable enough I don't deal with any doctors for a few months. Just because dealing with them can be so exhausting. Finding good doctors are so hard and just getting to them, being rushed out, and being made out like you are crazy is just exhausting. I am currently back into trying to find out what is my underlying again. I am seeing my specialist tomorrow with the hopes he can help me to at least be pointed in the right direction. I am sure I have autoimmune but the tests keep coming back negative and I can't prove I have it or what kind.

Ah. I understand not wanting to get pregnant after 35. That is one of my blessings of having my kids so early. When they are 18 I will be still young enough to really enjoy them being out of the house. And hopefully they will follow "family tradition" and have kids early and I will get to enjoy my grand kids a lot. My boys are 12 and 15 now and I am already looking forward to it.

That sounds like a scary combo. Check with your doctor and pharmacist.

I have 2 boys 3 years apart. I think 3 years is a good age gap. Far enough apart to have their own life but close enough to get along. Plus my older son helped out with my younger. I have a brother 3 years younger and 7 years younger. The youngest feels like a son to me sometimes while the middle child feels more like a brother. Also it is my understanding it takes up to 3 years for your body to get back to pre-pregnancy. The female body goes through so much to have a child it takes a long time to get back. With your son being a year old you still have time to think about pros and cons to having another kid. And depending on where you live larger age gaps are not uncommon. My brother's fiancée found out she has PCOS recently and they told her if she wanted kids she needed to start trying soon. My brother didn't want to at first because of how old his son is but he gave in and finally agreed. His son is currently 8. So there will probably be a huge gap. Why would methotrexate prevent you from having a child?

Other people will have advice on the hyperPOTS, I have regular as far as I know so I can't help you there. Metoperlol was my godsend medication. It is not working as well right now but I have been on it for over a year. Amazing for heart palpitations and bring HR down to more manageable levels. I want to say congratulations on your diagnosis. I know how scary it can be not knowing. I hope they can level your body out soon so you can get better. Good luck.

I have read some people lose their symptoms during their pregnancies as well as it gets worse during. Afterwards I haven't seen anything. Talk to your doctors and see what their opinion is. I would try your specialist and your OB/GYN. Personally I have had 2 kids ( when I was 16 and 20) my POTS didn't show up officially until I was 30. I suspect I had it very mildly since I was 15 but it didn't get bad til I was 30. I hope you find the answer you are looking for. It definitely sounds like you have your hands full.

Curious: has your thyroid ever been checked? Not just the TSH but all thyroid tests. Have you ever found you underlying cause for your dysautonomia? Encouragement: I know the bad days seem like they stick around forever, but they do get better. I know the feeling of doctors that don't listen. My boss (who has a PA) told me a few weeks ago that the ranges are averages and 0.5 is something most doctors ignore because it is close enough. I think it is stupid but I kind of understand. When baking does half an ounce of extra liquid really make that much of a difference in your final product? On the opposite side, when measuring in a lab it could be disastrous. I hope things get better for you. I was doing great and I have noticed myself declining slowly the last month or so. I made an appointment to see my specialist, hoping for a med change and hopefully it will get better soon. I do the same thing as you. I question all my tests. I point things out. If the doctor dismisses me then I find a new one. I don't have time for a doctor to treat me as a lesser because I want to understand. And sometimes pointing it out can make them think of something new. Don't give up! Take a break if you need it but never give up.

I agree with yogini it could be a stomach bug. Try to stay hydrated. And if you can manage it try some broth (it has high sodium). Either way it should pass soon. Have you tried tyenlol? It may help the fever (if you have one) and the headache. You could try sleeping through it. If you think it may be something else and it has been more than 24 hours I would get with a doctor. Hope you feel better soon.

Always Cold blooded. Even as a kid. I believe I have issues constricting because when I smoke a cigarette I usually feel better. Nicotine constricts blood vessels. But I was curious because they way our bodies freak out I wondered if it could flip flop.

Yes!! I have worse issues when I get overheated and it makes it worse. I don't know what I would do without central A/C. I didn't have it last year for a few months and I about lost my mind. It is like my head is full of cotton all the time. And I can't find words or memories. Like the tracks are missing. We laugh about it now as a joke but when this happened it was not funny. My hubby and I were discussing what to make for dinner. And I was trying to tell him that there was a bag of tater tots in the freezer. I spent ten minutes describing them, miming, anything to get him to understand. Finally I drug myself out of bed and had to grab them out of the freezer and show him. I could not find the word tater tots. It drives me a little crazy even now but it is not so bad now. Sometimes I go whole days without "losing" a word. Usually when my brain fogs up I usually try to get extra sleep that night (I am usually worse in the evenings) and the next day it is a little better. Hope you feel better soon and the doctors find out what is going on.

I do well with the midodrine except the tingles are annoying. I have had them since day one almost every dose. I have been on it for a year. I have a low body temp and always Cold but I usually don't have issues getting blood drawn.

I meant can vasoconstriction issues change to vasodilation issues. Or vice versa. Is there no test to tell what kind of issue there is?