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I seem to be at a symptom management stage rather than a focus on becoming functional again and it's frustrating


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Yesterday, I told the neuro that my most consistent symptoms since the last visit were nausea and pain (severe aching, cramping, muscle burning after waking, showering, being outside, physical exertion), so he presribed anti-nausea medication and lidocaine. Last visit it was a muscle relaxer to calm down flare ups. 

When I asked about medications that could potentially stop these things from happening in the first place rather than just relax me when they do happen, he said that if he had that answer (how to manipulate the autonomic nervous system), he'd win a Nobel Prize. 

God bless the man because he tries and I must overwhelm him, but at this point, I feel like he's trying to find a way to make me as comfortable as possible as I live out the rest of my life attached to the couch.

This feels like giving up. And I know people that are on these pain medications that are essentially zombies. It's not an approach I'm willing to accept. It does look like I'm going to have to be the one to figure it out for myself, but how do I convince him to try a different approach. Even if it's experimental, let's try some stuff that may end up making me functional again. 

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22 minutes ago, CallieAndToby22 said:

Yes I'm bed bound too and all doctors except my PCP have dropped me. I posted about the immune system and autonomic dysfunction but I'm too sick to continue research. I want to throw my hands up in the air. 

I get this. I almost feel hesitant to really push stuff because it's so hard to find doctors who even try. It would be so overwhelming to myself and another doctor to start from the beginning again. In fact, it has been in recent years already. I rarely contact my PCP unless I need referrals. I came to him with so many records a couple of years ago that he just assumed I had anxiety because he had no idea what POTS or dysautonomia were. 

Like I said, it's good that the neurologist even tries and he will support any protocols I want to undertake on my own, but anything that needs a doctor's approval or prescription (regardless of insurance coverage) becomes a bit more difficult. 

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5 hours ago, MTRJ75 said:

This feels like giving up. And I know people that are on these pain medications that are essentially zombies. It's not an approach I'm willing to accept. It does look like I'm going to have to be the one to figure it out for myself, but how do I convince him to try a different approach. Even if it's experimental, let's try some stuff that may end up making me functional again.

@MTRJ75 - it is not giving up. It means you are ready to get to acceptance. When I finally realized that there was no huge "healing moment", no "right pill", no "wonder treatment" and that I would have to live like that for the rest of my life I too thought that I was giving up by looking at that reality. But in the end it brought me acceptance - and with that came finding a way to live not only WITH dysautonomia but also DESPITE of it.

Once I realized that there were not only things I could NOT do but also many things I COULD do,, and I found that fighting POTS had taken so much energy and sheer Will that facing my limits was almost a relief. And I continued my research but now it was less for answers but rather for ways to get better. And I stopped looking for the miracle that someone would provide and started to find ways to go on with my life and not think of myself as UNable - just DISabled. 

5 hours ago, MTRJ75 said:

God bless the man because he tries and I must overwhelm him, but at this point, I feel like he's trying to find a way to make me as comfortable as possible as I live out the rest of my life attached to the couch.

That's pretty much typical POTS treatment for most of us - once the docs ( if you are lucky enough to have found one that knows even what treatments to try ) tried everything they have heard of and nothing works they cannot do anyting more but either refer us to an autonomic specialist that has more experience than them - or simply treat symptoms. It is well known that POTS etc is extremely difficult and frustrating to treat - one reason most docs won't touch it with a ten foot pole! 

 

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I know that type of mindset helps, but I'm not at a stage in life where I can just accept this is what it is and I'm going to be mostly couch ridden for the rest of life otherwise that couch is going to be in the middle of the street somewhere and that life isn't going to be very long without food. Even if I am lucky enough to get disability, it's not enough to live on. I know I'm never going to get my previous life back, but I need to be somewhat functional at some point in order to survive. Once I lose hope, I've lost everything. 

 

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@MTRJ75 - I am sorry if I caused confusion. The whole point of my response was: acceptance is NOT giving up, NOT envisioning a life on the couch. It is to stop fighting POTS in a way that is unproductive and overwhelming - but rather realizing that symptomatic treatment may be what we need to go on. There ARE many meds that will help for specific symptoms but not CURE us. Being stuck on the couch means you are giving up - acceptance means you get back up and look for ways to go on. I don't know what meds you have tried so far, or why you stopped them. There are many meds that help, we just have to try them and understand that one pill will not give us our life back. 

Being inactive is the enemy of POTS, so it is important that you exercise, even if initially you have to do it on the couch. We can recondition ourselves - we dont need a pill for that - just patience. When I was in your shoes I had a PT come to my house and show me exercises that strengthen me, and I could do them in all positions. I started to exercise several days for a few minutes every day and then graduated to exercising sitting, standing and eventually walking. Going outside for even just a moment helps tremendously - there is something triggered within the body when we get hit by cold air or sun hits the pupil. 

I am glad you have a physician that has been there for you. Maybe at this point it is necessary to simply treat certain symptoms to get you active again and then, once you regained some of your strength and stamina, go back to introducing - and maybe even re-introducing - therapeutic meds. I have found that what was ineffective at my worst can be therapeutic once the body is stronger again. 

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Hmm...I guess I did misunderstand a bit @Pistol 

It's just that the people I know on these types of medications (especially pain) are often zombie like. My goal is to resume some type of workout program at some point, but any type of physical exertion is still setting me off. 

It seems even things that are supposed to help make things worse. The last few times I've been outside for longer than it takes the dog to do his thing, I've ended up in a flare. Same thing with hotter weather or even sunlight. 

It just feels like the goal of the direction we're going in now is to basically have me sedated enough to not feel much of anything and that's what really concerns me. 

Ironically though, I've just read about two new experimental treatments on faim.org (Foundation for Alternative and Integrative Medicine), not specifically for POTS, but for neurological issues. One concerning the vagus nerve and the other is PEMF. 

I've also just started a protocol of D-Ribose and Ubiquinol mentioned in a recent Health Rising blog. Hopeful this will help with pain and exhaustion. 

I've met resistance from all doctors (neuro) as well with LDN. I wonder if there's a better way to reintroduce it into the conversation again. 

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17 minutes ago, MTRJ75 said:

My goal is to resume some type of workout program at some point, but any type of physical exertion is still setting me off. 

@MTRJ75 this is what happens to someone who is deconditioned. The body is no longer asked to do anything, so the slightest movement is perceived as unsurmountable and therefore causes exhaustion and fatigue But the way to get back on your feet from that is - well .. get back on your feet! If 3 minutes upright are too much for you do 1 minute a day, then one minute twice a day, then 2 minutes twice a day and so on .. you have to gently coax your body to be able to tolerate the slightest activity again. And also - avoiding doing things that are too much is just as important. So if you take the dog out to do his business - that' your exercise, rest afterwards. But don't get stuck on the couch then - after a long rest get back up for a minute or so. 

For me deconditioning also caused bad joint and muscle pains. Exercising made that better - a lot better! But initially it hurt more because I had not used my muscles and joints in a while. 

My PCP does not prescribe pain pills for me b/c they make me sleepy and keep me being from being active. I use Turmeric and a muscle relaxer ( at night only ) an sometimes Motrin. But really I have found that mild exercise is effective for me. 

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I still stretch as much as possible and use these new age massagers for neck and leg muscles to keep the blood flowing, but the muscle issues (thankfully no join pain) doesn't feel like deconditioning. It's really more of the same stuff that stopped my workouts in the first place. It's very different from the aches you get after using a muscle or group of muscles you haven't used in a while. That's more of an expected soreness. This is just debilitating and occurs after such minimal activity. 

I think the issue with getting physical therapy for me is age. I'm probably still too young to be considered in the type of condition I am. I really could use a supervised exercise plan (though maybe not yet), where at least a trained professional can detail the reactions my body has as well. 

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3 hours ago, MTRJ75 said:

I think the issue with getting physical therapy for me is age. I'm probably still too young to be considered in the type of condition I am. I really could use a supervised exercise plan (though maybe not yet), where at least a trained professional can detail the reactions my body has as well.

I am declared homebound by my PCP, since I can no longer drive or shop, and Dr appointments are very difficult for me. That's why I am able to get in-home PT. Your PCP should be able to order home PT if the notes that you currently are unable to travel. I would chock with your insurance what their requirements are for in home PT and then ask your PCP. 

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1 hour ago, KiminOrlando said:

Do you think you have small fiber neuropathy?

Very likely. Not something I got a chance to cover with the neuro yesterday. I had to prioritize and figured we couldn't test until after the pandemic anyway. 

My PCP is useless @Pistolfor this condition. I haven't even seen him in over a year. There are a few several PT facilities nearly within walking distance. Also something that will have to wait until after the pandemic though. 

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  • 2 weeks later...
On 1/13/2021 at 2:06 PM, MTRJ75 said:

Hmm...I guess I did misunderstand a bit @Pistol 

It's just that the people I know on these types of medications (especially pain) are often zombie like. My goal is to resume some type of workout program at some point, but any type of physical exertion is still setting me off. 

It seems even things that are supposed to help make things worse. The last few times I've been outside for longer than it takes the dog to do his thing, I've ended up in a flare. Same thing with hotter weather or even sunlight. 

It just feels like the goal of the direction we're going in now is to basically have me sedated enough to not feel much of anything and that's what really concerns me. 

Ironically though, I've just read about two new experimental treatments on faim.org (Foundation for Alternative and Integrative Medicine), not specifically for POTS, but for neurological issues. One concerning the vagus nerve and the other is PEMF. 

I've also just started a protocol of D-Ribose and Ubiquinol mentioned in a recent Health Rising blog. Hopeful this will help with pain and exhaustion. 

I've met resistance from all doctors (neuro) as well with LDN. I wonder if there's a better way to reintroduce it into the conversation again. 

Protocol in the bolded part may be moving the needle somewhat. I started two and a half weeks ago and feel like I may have been a bit less exhausted with fewer aches about four or five days in. After two weeks (this past Saturday), I decreased the dosage as prescribed in the article and although today has been, by far, my worst day since with extreme aching and exhaustion, I'm hoping it has more to do with the weather than anything else. I may revert to the starting dosage again for another week or two if this keeps up, but don't think the dosage (or expenses) would be viable long term. 

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