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kafie

Questions About Blood Pooling

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I was just curious if there is anything else that can cause the blood pooling seen in dysautonomia?

As in, both legs, both arms - without any visible varicose veins or spider veins.

I've never had a blood clot. I have had one pregnancy (and to my knowledge, chronic venous insufficiency is more common of people who've had at least two pregnancies).

I've never heard anyone complain about purple hands or feet following a pregnancy, but then... many women I know tend to not really talk about their health concerns, and activity helps the veins push blood around (I certainly have noticed that as long as i'm moving around my feet don't pool as bad - it takes about a minute of standing still for them to fill and turn an ashy purple).

I'm not the most active person in the world but running around after kids all day (I also babysit two kids other than mine) has actually done a wonder on my muscle tone (yeah, I got "mom arms", and them, along with my legs are pretty solid - I haven't had muscles like this since I was a teen!). So... if the concept is that I'm just dealing with deconditioning... I call bs. My syncope is actually worse despite the increased activity, and I never noticed things like the redness or vein bulging from the blood pooling except maybe the last year and a half.

I guess my main question is: Is it possible that my pregnancy worsened this condition, and would another cause my veins to permanently dilate more and worsen the pre/syncope and blood pooling?

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My opinion is that deconditioning is temporary but it can make you feel off for a long time. Even a week or two off from your regular routine can lessen your energy levels. It's important to power on through the next few weeks to restore what you've lost. An increase in your nutrition helps too--eating a well balanced diet with plenty of foods with high electrolyte content helps immediately.  It's possible that pregnancy effected your condition but only a doctor can diagnose that. There are several conditions that cause blood pooling, you can read up on it and bring them up with your doctor. https://www.webmd.com/dvt/dvt-venous-insufficiency

 

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 Pregnancy can make dysautonomia worse.   Blood pooling is a symptom of dysautonomia, causing blood vessels not to constrict properly. This symptom (and the condition itself) aren't related to physical fitness.  You can be as fit as fiddle and still get hit with full blown dysautnomia.  That's what happened to me and many others.  

If you are able to exercise, though, that might help with improvement of dysautonomia symptoms in the long run. 

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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. 

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Thanks everyone! I'm definitely going to ask the POTS specialist when I see him (whenever that is... the referral was sent in two weeks ago and I haven't gotten a call yet). I was just curious if anyone knew.

I figure this is pretty much a cardinal sign, but I'm not sure if I had it before and just never noticed or if pregnancy really made it worse (almost all of my symptoms have gotten worse since - except my resting heartrate, which has gone down (probably because of all the activity)).

I did experience a remission during my pregnancy (even with my arthritis). To my understanding that's because the immune system is suppressed to protect the baby... and I guess it's pretty common with autoimmune illnesses to get suddenly a lot worse afterwards (I guess the immune system goes nuts).

Does anyone know with that if it tends to settle back down again eventually (my son is over a year now so I think I may have passed that point)?

I'm on plaquenil though, so maybe that'll get my immune system to back off. I'm finally starting to feel that it's actually starting to kick in, so that's something.

I've been wearing compression stockings for the last few days and that's been helping I think. The day I got them I had 7 instances of presyncope (luckily no faints) that day alone, but in the last few days I've only had 3 in total (and not a single one yesterday). So, here's to hoping this is a trend that'll continue.

I just hadn't really decided if I want two kids or not and if another pregnancy will make this worse I think it might be one and done (I get there's an increased work load but my son has slept through the night since he was like 6 months... and I feel like my body is falling apart!) - this gets much worse and I'm honestly not sure I couuld take it of two kids. In one aspect that makes me a little sad, but in another... if I end up having to take methotrexate, I may not be able to have another one anyways.

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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?

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They don't recommend trying to get pregnant until you've been off methotrexate for 3 years (even for the fathers) and I really don't want to have any after 35 (I'm 30 now). I also have PCOS and I figured that between methotrexate I'd have a very small window and a possible relapse with a low chance of conceiving again.

I don't usually ovulate except a couple times a year (no joke) and had to take supplements to even get my LH to spike high enough to trigger ovulation (the first month I got a positive ovulation test was when I got pregnant, took us a year and eight months... which isn't really that bad honestly).

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2 hours ago, kafie said:

They don't recommend trying to get pregnant until you've been off methotrexate for 3 years (even for the fathers

Please check that again with your doctors. I take methotrexate and was told 3 months, not 3 years. I don't think the waiting time is going to be the biggest problem. So, maybe this is good news?

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I have pots or orthostatic hypotension  had it for the last 6 years  I got hit pretty hard when it first happened, I stopped eating gluten and many of the symptoms got better I was very functional,

But two months ago after an infection I had a relapse  shortness of breath is a very big problem I can also see blood pooling in my hands and feet pretty scary stuff with the breathing.

A few things have helped me one very important thing try to always breathe through your nose it relaxes you and activate your parasympathetic nervous system over the sympathetic.

Also butcher's broom has a visible effect after an hour you can see the blood pooling go away in your hands and feet it's astonishing for me at least.

But I take it moderately I don't think you want too much Construction just enough in my opinion to bring it back into some balance.

An H2 blocker before you eat helps me to a bit but I don't think because of Mast Cell Activation disorder I just think it reduces blood pooling in your gut what counteracts the breathing problem.

. And one other  thing Liposomal Vitamin C   it's easy to digest apparently helps with blood flow.

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9 hours ago, kafie said:

They don't recommend trying to get pregnant until you've been off methotrexate for 3 years (even for the fathers) and I really don't want to have any after 35 (I'm 30 now). I also have PCOS and I figured that between methotrexate I'd have a very small window and a possible relapse with a low chance of conceiving again.

I don't usually ovulate except a couple times a year (no joke) and had to take supplements to even get my LH to spike high enough to trigger ovulation (the first month I got a positive ovulation test was when I got pregnant, took us a year and eight months... which isn't really that bad honestly).

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. :D

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Dysautonomia isn’t autoimmune.  Blood volume increases during pregnancy (and decreases with childbirth). That’s usually why some people feel better during.

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On 8/25/2018 at 11:42 PM, KiminOrlando said:

Please check that again with your doctors. I take methotrexate and was told 3 months, not 3 years. I don't think the waiting time is going to be the biggest problem. So, maybe this is good news?

I'm sure I must have mixed that up in my head! Thank you for that information!

On 8/26/2018 at 11:10 AM, yogini said:

Dysautonomia isn’t autoimmune.  Blood volume increases during pregnancy (and decreases with childbirth). That’s usually why some people feel better during.

That makes sense. My assumption was that having RA may have an effect on the dysautonomia (the syncope predates my joint pain but at this point the symptoms do seem to have a little ebb and flow together, but it might be that my body just likes to do it all at once more often than not (or that because of the overwhelming amount of suck I can't tell which is causing which symptom)), though I thought the theory was that POTS & OH may be immune mediated (which is totally not the same thing, I know, but both may react to things that get the immune system excited (infection, viral illnesses, ect)).

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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?

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15 hours ago, StayAtHomeMom said:

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 was diagnosed about 4 months ago. I'm seronegative so it only showed up on my x-rays (wearing of the bones around the joints). My family has it on both sides and I've had joint pain for probably about 5 years. It got worse over the last year and started waking me up at night so I got my doc to refer me to a rheumatologist (I also have an entrapped nerve in both elbows but it's the motor nerve).

My sister had JRA at 7 (which remitted and relapsed recently). My mother got it around 17 - so I guess I got lucky getting it a little later in life.

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1 hour ago, kafie said:

I was diagnosed about 4 months ago. I'm seronegative so it only showed up on my x-rays (wearing of the bones around the joints). My family has it on both sides and I've had joint pain for probably about 5 years. It got worse over the last year and started waking me up at night so I got my doc to refer me to a rheumatologist (I also have an entrapped nerve in both elbows but it's the motor nerve).

My sister had JRA at 7 (which remitted and relapsed recently). My mother got it around 17 - so I guess I got lucky getting it a little later in life.

Wow. What treatment are they doing for you?

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I'm on plaquenil right now. It's barely done anything (i'm not getting the prolonged morning stiffness anymore, but the pain is still there). I'm also in a prednisone taper (10->2.5mg, currently on 5mg till Thursday, and will be finished with it in about a week and a half).

If I don't see anymore improvement with the plaquenil in the next month or two we're moving on to methotrexate or sulfasalazine (I'm thinking methotrexate might be the best bet, it seems to be pretty effective for a lot of people - and it's what my rheumatologist suggested out of the two because the injectable is supposed to have less side effects (primarily the nausea is what he's concerned about)).

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6 hours ago, kafie said:

I'm on plaquenil right now. It's barely done anything (i'm not getting the prolonged morning stiffness anymore, but the pain is still there). I'm also in a prednisone taper (10->2.5mg, currently on 5mg till Thursday, and will be finished with it in about a week and a half).

If I don't see anymore improvement with the plaquenil in the next month or two we're moving on to methotrexate or sulfasalazine (I'm thinking methotrexate might be the best bet, it seems to be pretty effective for a lot of people - and it's what my rheumatologist suggested out of the two because the injectable is supposed to have less side effects (primarily the nausea is what he's concerned about)).

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. 

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Luckily my RA is still in the early stages. I'm actually kind of lucky that the doctor was willing to treat without the bloodwork. I know a lot of people have that problem, especially with early seronegative RA. So... mostly we're working to prevent any more damage (or it progressing to an organ (my father has it in his lungs and has to be on oxygen during the day)).

But that is pretty cool! I had no idea they did replacements for such small joints. My hope is that I won't need that. Provided by blood work doesn't change and since my ANA is very low, chances are that the progression will be slow (probably how I made it 5 years with symptoms with only mild wear) so I shouldn't have any deformities till I'm in my golden years (here's to hoping!).

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9 hours ago, kafie said:

Luckily my RA is still in the early stages. I'm actually kind of lucky that the doctor was willing to treat without the bloodwork. I know a lot of people have that problem, especially with early seronegative RA. So... mostly we're working to prevent any more damage (or it progressing to an organ (my father has it in his lungs and has to be on oxygen during the day)).

But that is pretty cool! I had no idea they did replacements for such small joints. My hope is that I won't need that. Provided by blood work doesn't change and since my ANA is very low, chances are that the progression will be slow (probably how I made it 5 years with symptoms with only mild wear) so I shouldn't have any deformities till I'm in my golden years (here's to hoping!).

It sounds like you found a good doc. They are so hard to find. :D

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2 hours ago, StayAtHomeMom said:

It sounds like you found a good doc. They are so hard to find. :D

Yeah, I really like my rheumatologist. He's been really comforting and reassuring that my symptoms aren't just something to pass off and we're actually going to do something about that. Now, if only my GP had that kind of bedside manner.

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