The King of Self Medicating

[Live And Let Die]

I don't know who the king is, but I'm in the royal court somewhere.

I didn't know I had CFS until about 9 months ago. Previous I always pushed through as hard as I could as I am, as the saying goes, a gluton for punishment.

Throughout the past 10+ I look back at the cycles I would go through and I have now learned from them. Pacing and accepting this condition for what it is has help eased my mental well being (unless you catch me on a particularly bad day).

I have an addictive personality, which, coupled with a type A personality I can see that I have been self medicating for years. I still do to some extent. Now that I have a handle on CFS I will share some things that actually help my symptoms for some reason. I will also share little idiosyncrasies (mostly unhealthy and I do not recommend) that I find strange.

Who knows what doctors may read these forums and maybe little things will help them think of something they didn't already. This website and forums are extremely important!

Things that have a noticable effect on my symptoms:

DayQuil - or anything that has a nasal decongestant. Dayquil has been the best of them all. During times where I need to do taxing physical or mental work this works. I had one of those daily crashes the other day and I took some and while I wasn't back at baseline, it stopped the crash in it's track (Does not work in the abyss). Now keep in mind while it does increase my energy, I'm more prone to overdoing it and crashing harder.

Viagra - I won't get into too much detail here (I hear the booing), but for about 4 hours after I take it I feel overall better. It helps with the PEM associated to sex. If I do not have sex it seems to clear up my mind a bit and makes my body overall feel a bit less crummy.

Caffiene - I drink a TON of it on a daily basis. Just helps me push through on a daily basis.

Diet - The worse I eat, the better my baseline is. Fast food, snacks, beer ect. Don't ask me why.


Please don't go out and do this, it is NOT good for you. These are just my experiences. Ironically enough, the worst crash I ever had was when I had quit everything bad, smoking, drinking alcohol and caffine and was eating perfectly plus exercising 3-4 days a week for 30 mins a day. Then one day BOOM, the biggest crash ever. Lasted a couple weeks at least. Just doesn't make sense.

Idiosyncrasies

The more "hungover" I feel the the morning, the better my day will turn out.

I can get more accomplished in the day by doing things a little at a time. If I have 3 tasks for the day, I'll bounce around doing a little of each with breaks in between. I can do a lot of things, just not for a long time or consistently.

I drink a ton, always have. Doesn't matter what it is, I'm drinking all day long, water, juice, soda (diet). I've been this way since my early teen years.

I pee a lot, but not in relation to what I drink. I had a manual lymphatic drainage massage last week and probably peed 20 times that day after it.

My appetite is always good (Its a mental appetite, not a feeling of being hungry). But some days I have strange thoughts about food. Sometimes I crave carbs for days, other days it sugar (I'm really not a big sweets fan) but when those days come, I feel like I need to constantly eat candy. I've also had days where the thought of vegetables was actually repulsive to me. Strange.


Just things to chew on. I don't recommend any of my vices or bad habits, just taking an unbiased look at things and sharing them.

 

[Esther12]

I think finding what's right for you as an individual is the best approach. You've mentioned having an addictive personality, and realise that this could play in to your response to things.... it's important to stay aware and cautious of that. Are all the drugs you're using suitable for these levels of use?

Personally, I'm not on any medication. With food, I think I need to eat more. I've found that eating junk is better, so long as it doesn't lead to me eating less healthy food (ie: the more the better, regardless of quality... there are limits though eg: If I eat too much sugary stuff that makes things worse). Everyone's amazed at how much I eat, as I do so little and am so skinny. I must have a crazy metabolism.

 

[ukxmrv]

I've had ME for over 25 years and the list of things that I have tried could fill a book.

You have a long way to you before getting close to a title for self-medicating!

 

[Live And Let Die]

I do not take those medications on a regular basis by any means. You are correct, in times past it has played in my response to things. It has taken me years to become aware and cautious of it. As far as the amount I would take, just a normal dose.

I eat a ton as well.


UKXMRV - So you're telling me I'm almost half way there?

 

[Live And Let Die]

As far as daily medications I take a multivitamin, low dose of blood pressure medication (this has helped my heart beating greatly) and 1 gram of Valtrex. I've been on the Valtrex for 3-4 months and so far it has helped my sensitivity to light and sound.

 

[laura]

Eating a lot

Everyone's amazed at how much I eat, as I do so little and am so skinny. I must have a crazy metabolism.

I didn't know other people had the same experience with food, eating a lot. I have wondered why I can always eat and yet my weight is maintained, when my activity level is so low!

Up until now I have attributed it to my history of being hyperthyroid; though now my tests come back normal, I have always wondered if I was still a little hyperthyroid, what they call "subacute." But if others experience it too, maybe it has more to do with the overactive immune system and multiple systems working overtime...?

 

[Live And Let Die]

I went to an ID doctor before going to a CFS specialist. That doctor said he didn't think I had CFS because I had a good appetite and didn't have a constant sore throat. He kept mentioning that his CFS patients have to be carried in.

When I was working, I couldn't eat until I was done for the day. If I ate any more than a few bites, I'd crash.

 

[Esther12]

I think I've had some real improvements in fatigue levels since I started stuffing myself.... eating more than I want and much more than everyone else. Not too sure though.... it's coincided with having more disability money, which has made things easier in a number of ways (ready meals!).

I occasionally fantasise about a full recovery based upon massive food consumption... but I've got to admit that the improvements are still fairly limited. It is a tricky one. Best of luck with it all everyone.