Does anyone else get tired of fighting?

Hi ALL,

Lately, it seems like more and more people are scared or frightened by the fainting spells, and even of the migraines- however, I can hide some of the migraine symptoms. I cannot hide the fainting and I know that it can be disconcerting or scary to see. I am only out for a second or tow and come to quickly. It is hard enough to fight both the migraines and fainting, but it is twice as hard to explain it to others.

I have been doing some weight training/ aerobic excercise at a gym. I have been going for a year now. I told them about the fainting from day one and have had the same trainer through that time. Well, last week, I got a phone call from the manager of the gym who first told me that since she had changed my trainer's hours, he couldn't train me anymore. Then she informed me that my fainting was scaring others. I spoke with her Monday and it was pretty clear that the fainting was the main problem. She suggested that I switch trainers- to one who used to be a nurse. They also wanted a dr's note, which I was happy to provide.

So I worked out with the new trainer today. It did not go well. I brought the letter from my dr and a couple of articles on Neurocardiogenic syncope/ Postural Orthostatic Tachycardia syndrome.

I had some gatorade with me- which is recommended for me due to the electrolytes in it. She then asked why I was drinking gatorade and told me water would be better. The gym is rather bright, so I had sunglasses on and she asked if I would take them off. For the rest of time, she basically treated as if I would break. While I was training, I fainted once- drank some gatorade, and recovered quickly. She kind of freaked out about the whole thing. It was also clear that this is not the way she treats her other clients. All of the excercises she had me do were fairly simple, she did not want me to stand up or even walk around that much. My roomate was with me as well. In many ways, it made me feel horrible. I understand that I have two chronic illnesses, and that one is more visible than the other and that one is more visible than the other. Still, I really hated being treated so carefully or like an invalid. The whole thing was emotionally draining- especially because I was being treated differently- as if she was more worried about the fainting than what works for me.


I am not sure exactly what to do. I am going to get a letter from the cardiologist who oversees my cases, as well as my internist. Right now, the plan is to give her another chance and then ask for a different trainer.

I am so tired of having to fight these battles. I feel like I am fighting the diseases and everything else too. Sometimes I wonder how much fight I have left in me. I know I won't give up, it is just frustrating, Has anyone else experienced anything like this.

Pain free days,
sailing m

No luckily for me I can hide or run away when I don't feel well.
Being in your situation would become a pain in the neck.
Just having to give the explaination every time it happens would be exhausting.
Good on you for your attitude.
Maybe you could get little cards printed and just hand them out?
Or get a t-shirt printed:
"Constant fainter - still dreaming of Elvis"
Substitute your favourite.

Sailing,

This is a tough situation.

Clearly you are a financial risk to the gym. I've been told that actually by a cardiac rehab facility. Frankly they cannot provide the treatment or regimen for you, and you are at risk from falls. There really aren't a lot of gyms that can perform the types of exercises that our cardiologists wants. This needs to be done at a rehab facility, or hospital with a specific methodology.

Only one I've found in my region is CCF.

I wouldn't be too upset. Look at their point of view--they one, don't want you getting hurt, and they don't want the liability.

I don't feel like giving up--never. Just the fact that you are trying is proof that you are not giving up. This is such a difficult issue--why do you think there are so few doctors in this country and throughout the world that specialize in syncope?

A nurse doesn't have the brain power. A cardiologist can't even pull things together. That doesn't mean that things come to a stop.

You do as you can, and not push it too hard. Electrolytes are important, not just water.

Core strengthening is important for syncope. This is very complicated stuff. I wouldn't put high expectations in people that cannot understand the complexities of the problem in the first place.

What you can do is work on the exercises that don't make you pass out. Take things easy. Just like M, you have to try and avoid triggers.

I am going through this right now. No one can really help outsite of a rehab/PT facility..............or my home gym and my dad helping.

I passed out last night, and had some pretty bad angina tonight. So this is not fun.

Orthostatic hypotension is tough. That tic in the CNS that causes pressure to drop is a real bummer.

I don't quite think the migrainuers can really tie in with the specific problem of syncope--the problems are separate. I think no doubt our friends here will show support. Syncope though, is one burden that has all of its own problems that differentiate from M.

With syncope, it's a whole different ball game.

Don't give up--it's obvious that you're not.

hi SM,
Most of my spine is fused making it difficult to exercise without hurting myself.

Years ago, when I had an excellent health plan I got my exercise at a physical therapy clinic so that someone could make sure I was doing the exercises correctly and I also got massage and other passive therapy if I needed it.

I also used to do Pilates. One of the machines is called a reformer, you can get aerobic exercise lying down on it. I had a great instructor in Tucson.

Just two thoughts I had.

NT

SM,

Well first thought is good for you for going and trying to do this. Marc had some really good points though. I can see why the gym is a little freaked out - fainting all of a sudden is a risk for both you and them. They don't want you to get hurt for a number of reasons.

I'm not a gym rat - I don't like others watching me so when I was able to work out I did it at home. I signed up for Jillian Micheals Online and the site provided a weekly workout that you could do from the comfort of home with little investment in equipment (actually was a proponent of using household things and your own body weight).

I don't know what sort of training the doctor wants you to do but perhaps there is something that you could do at home, under supervision of course. Or another thought that has occurred to me is does your health plan have a rehab center in a gym? I know my local hospital (small town) has their rehab center at the fitness center in town. Just thinking that if you need a trainer and can't do it from home, perhaps that would be a solution for you.

Keep it up and if you'd like there's an athletes thread going, keep us posted. Not just for "athletes" but those trying to do any exercise with the dratted M and other issues.

Becky