Possible link with dysautonomia?

[DizzyPopcorn]

Greetings all,

I was just wondering, my mother had Reflex Sympathetic Dystrophy (Complex Regional Pain Syndrome) for 14 years, before dying in 2015 of cancer (terminal, metastasis). She finally rest in piece, pain free, because she was taking upward of 30 pills a day just to function properly. Still, her courage in difficult time and her rigid education shaped me to become who i am today, and i'm grateful for that. A lot.

My question is 2 fold.

1) Can her death (which was a huge trauma for me (even to this day), both mentally and physically), cause pots? My symptoms began about 1 year after her death, day for day.

2) Can her form of dysautonomia mean i was genetically predisposed for pots or other form of dysautonomia?

Thank you and have a good day,

W

[Delta]

@whoami,

I am so sorry about your Mom, and I hope you find much comfort in happy memories of her.  Your questions are very good.  I can tell you that in the month leading up to my first intense symptoms, I was under some of the worst stress and worry of my life.  Looking back, I had other things going on for a couple of years before that I couldn't explain but just kind of blew off, such as intolerance to heat when heat didn't used to bother me.  In my case, it's hard to think that the worry didn't play some part in bringing it on "full on".  I don't know much about RSD but I do know that dysautonomia can be familial.

[DizzyPopcorn]

23 minutes ago, Delta said:

@whoami,

I am so sorry about your Mom, and I hope you find much comfort in happy memories of her.  Your questions are very good.  I can tell you that in the month leading up to my first intense symptoms, I was under some of the worst stress and worry of my life.  Looking back, I had other things going on for a couple of years before that I couldn't explain but just kind of blew off, such as intolerance to heat when heat didn't used to bother me.  In my case, it's hard to think that the worry didn't play some part in bringing it on "full on".  I don't know much about RSD but I do know that dysautonomia can be familial.

 

Thank you for the kind words. Even typing this while thinking about her bring me tears to my eyes. It was literally the worst experience in my life, because it was 1) the first time dealing with mortality, and 2) I accompanied her during her worst symptoms, alongside my father. I was the one to call 911 when she was convulsing on her wheelchair because of her brain tumor. I was holding her with me, crying just praying to whatever exists (im agnostic) frees my mother from her pain and problems. Unfortunately, the prayers were not enough and she had to die a horrible and painful death. 5 months before assisted suicide was legal in my country. Go figures.

Sorry, i had to vent a little bit. I still have that one on the heart.

In any case, if dysautonomia is familial, it seems that there's a good chance i was unlucky enough to have that gene passed to me :(. Hopefully not, but its difficult to think positively when you feel weird all the time.

 

I thought this kind of stuff (death, medical conditions) only happened in movies. Guess they're real

[Pistol]

@whoami - I sympathize with your feelings. What you experience is grief and everyone deals with that differently. The most grief I experienced was the death of my father and loosing the ability to work from POTS. I definitely went through all of the phases. Especially when you go through grief for the first time it is important to talk bout your feelings. Have you considered seeing a counselor? I was lucky enough to have a very supportive family and group of friends who listened to me and guided me through it. Being alone makes it a lot worse.

I do believe that any stress - physical or emotional - can set off POTS symptoms if you have dysautonomia.  I also believe that depression and anxiety can mimic some dysautonomia symptoms which would be another reason to consider counseling. These feelings are real and understandable and only show that you are a human being. 

be well!

[toomanyproblems]

On 7/15/2019 at 8:49 AM, whoami said:

1) Can her death (which was a huge trauma for me (even to this day), both mentally and physically), cause pots? My symptoms began about 1 year after her death, day for day.

2) Can her form of dysautonomia mean i was genetically predisposed for pots or other form of dysautonomia?

 

In my own case I had an acute sequence of events begin the exact day I went to divorce court ending 32 years of marriage. I noticed my right ankle swelling significantly that morning. I went on to acutely develop severe symptoms including losing over 20 lbs in two months (I was not overweight starting out) and significant POTS symptoms. My right leg continued to swell but my eventual diagnosis of CRPS was delayed by nine months as they aggressively pursued a cancer diagnosis because of the rapid weight loss and swelling of my right inguinal lymph nodes.. 

In research, I found around 7% of people who develop CRPS do so not because of physical trauma such as surgery or injuries, which is normal for development of CRPS but instead from a severe emotional trauma such as a death or divorce. Research has also shown that severe emotional trauma can affect you the same way as physical trauma because it's in the same part of your brain. That's why some anti-anxiety/anti-depressants help with either thing. So I would say yes, a death could precipitate dysautonomia in the same way physical trauma or infection could.

As for your second question about genetics -- dysautonomia is found increasingly in people who have CRPS but I've never seen anything showing a firm genetic link to developing CRPS. CRPS is pretty rare though so maybe they just don't have enough people with it to have seen a genetic link. I would think your mom's case would be linked to the CRPS.     

[DizzyPopcorn]

My mom got CRPS in her foot after stumbling over a vacuum hose that was laying around just over a small step between our living room and the kitchen. The tip of her foot (toes) touched the middle section of her foot . Instead of breaking a bone and requiring surgery, it simply bent, causing a sprain that basically never healed and devolved into CRPS. So it was definitely a physical trauma in her case. Her cancer was caused by cigarettes. She smoked for a good 40+ years from the young age of 14.

I feel sorry for you, it must've been hard to deal with all that after a divorce. Not sure how you remained strong in such a situation.

How is it even possible to develop CRPS without a physical trauma? I thought that CRPS was basically your head registering a pain that did not exists anymore?

 

[toomanyproblems]

2 hours ago, whoami said:

My mom got CRPS in her foot after stumbling over a vacuum hose that was laying around just over a small step between our living room and the kitchen. The tip of her foot (toes) touched the middle section of her foot . Instead of breaking a bone and requiring surgery, it simply bent, causing a sprain that basically never healed and devolved into CRPS. So it was definitely a physical trauma in her case. Her cancer was caused by cigarettes. She smoked for a good 40+ years from the young age of 14.

I feel sorry for you, it must've been hard to deal with all that after a divorce. Not sure how you remained strong in such a situation.

How is it even possible to develop CRPS without a physical trauma? I thought that CRPS was basically your head registering a pain that did not exists anymore?

 

CRPS itself its not a type of dysautonomia. I assumed your mother had a separate dysautonomia diagnosis? 

I related my story to suggest that emotional trauma can cause these types of problems. CRPS is definitely a screw up in the brain regarding pain and wind up,  but its initiation can be connected to emotional trauma, possibly because physical and emotional trauma are registered in the same part of your brain. Perhaps POTS is the same. That was the main point I was trying to make. 

The original place I got CRPS was in a foot where I had several bad ankle sprains over many years but nothing recent and no ongoing pain.  CRPS, as well as dysautonomia are also more common in people with Elhers-Danlos syndrome, which I also have. I've sprained both ankles several times over the years. I don't know why it chose that spot and that ankle but it seems to have initiated due to emotional trauma. I was not able to find out the main site of others who got CRPS from emotional trauma. The study did include close to 10,000 people so it was a good sample. Interestingly, one of the main points was that those people who got CPRS had no more mental health problems before their diagnosis than the general public. Like many diseases, Drs are quick to blame CRPS on psychological issues instead of an actual disease process. This paper handily disproved that.     

[DizzyPopcorn]

1 hour ago, toomanyproblems said:

CRPS itself its not a type of dysautonomia. I assumed your mother had a separate dysautonomia diagnosis? 

I related my story to suggest that emotional trauma can cause these types of problems. CRPS is definitely a screw up in the brain regarding pain and wind up,  but its initiation can be connected to emotional trauma, possibly because physical and emotional trauma are registered in the same part of your brain. Perhaps POTS is the same. That was the main point I was trying to make. 

The original place I got CRPS was in a foot where I had several bad ankle sprains over many years but nothing recent and no ongoing pain.  CRPS, as well as dysautonomia are also more common in people with Elhers-Danlos syndrome, which I also have. I've sprained both ankles several times over the years. I don't know why it chose that spot and that ankle but it seems to have initiated due to emotional trauma. I was not able to find out the main site of others who got CRPS from emotional trauma. The study did include close to 10,000 people so it was a good sample. Interestingly, one of the main points was that those people who got CPRS had no more mental health problems before their diagnosis than the general public. Like many diseases, Drs are quick to blame CRPS on psychological issues instead of an actual disease process. This paper handily disproved that.     

No, my mother had no other dysautonomia trouble (that i know of, but she was open about her health, so i'm pretty sure her only problem was CRPS). I was seriously under the impression that CRPS was a type of dysautonomia, since it affect nerves.

She was diagnosed in about 9 months. But most of her knowledge had to be searched on the internet, because doctors were, for the most part, clueless.

 

EDS is hyper mobility of the joints, correct?

[toomanyproblems]

21 hours ago, whoami said:

EDS is hyper mobility of the joints, correct?

One form of it is primarily hyper mobility and that's the form I have.