What is worth the money?

[Cshell]

I found that once I became partly bedbound that I had more energy. Not from lack of moving around but from lack of being upright. I had no idea that orthostatic intolerance was draining my energy and affecting my mood so much. One of the few upsides of being partly bedbound now is that I am less irritable and don't have anywhere near the crushing fatigue that I used to. Being horizontal more often has benefits in my case since my BP is so low, and gradually lowers the longer I am upright.

Assuming you aren't already bedbound, then you might want to try a day where you stay upright for an hour, then lie down for an hour, and cycle like that throughout the day to see if you feel better when lying down, and overall.



There are two kinds of doctors: those who rely on lack of investigation and ignorance based belief; and those who rely on inquiry, evidence, and reasoned conclusions. Guess which one he is?

I find this to be very true. The more time I spend flat on my back, the better I feel.

 

[Cshell]

My thought was, there are two kinds of doctors: ones who possess a human soul, inquisitive mind, and have a desire to at least try to help their patients and ones that are mean spirited bastards who don't actually care if their patients live or die as long as they get paid.

I wound up telling him that I knew a lot of people didn't believe that it was a physical illness, but that I had always been very positive, happy, and highly motivated to do my best in everything I did, and it had destroyed every aspect of my life. Then he did seemed slightly compassionate and suggested I see a neurologist (tried that 10 years ago) or try B12 shots. Total visit was over in 5-10 minutes.

 

[Cshell]

Yes, they are still doing this testing. "Big brother" doesn't allow 23and me to give medical advice/ interpretation of the results. Considered unproven, specious by the FDA. 23andme trying to work that out...

I vote for cleaning services. Medical qi gong, if you can afford it. Though that gives me only temporary relief. Supplements / docs/ tests/ 23andme all a waste of money for me. I only keep doing it because I can and feel so sick that I should be seeing a doctor, you know what I mean? Hold out for real treatment.

JAH

I will check into medical qi gong but I'm sure it's not offered close to me. What benefits do you see and how long do they last?

 

[Cshell]

I think you've just discovered a simple method for detecting hard-core narcissists. Although, to be fair, some (many?) doctors start out well meaning and compassionate but are ground into apathy by the system they work in.

One thing I respect about my family physician is that even though he has been trying to help me for 20 years and has watched my health decline to the point of disability, he would do anything to help me feel better and is truly compassionate.

 

[KristenSF]

This illness can be expensive. I am trying to decide if a few things are worth the money or not.

3) Is money better spend on things like cleaning service than chasing the elusive "cure" that doesn't happen?

I think this is such a crucial question. I've been bleeding money trying to fix this. I had an appointment scheduled with a CFS specialist in July, but got a call a couple of weeks ago that he had a cancelation so I got into see him sooner. I am talking about the wonderful and venerable Dr. Kaufman.

I've had my initial appointment, and a lot of tests, some of them very expensive. I'd like to say I'm hopeful, but the fact is I'm realistic. I don't see a lot of success stories here or elsewhere on the web where this is discussed.

I'm going to go through my follow-up appointment and do everything thing Dr. K tells me, but if I don't get results after a certain point I'm going to have to focus on going on disability, moving somewhere cheaper and getting help with things like cleaning.

 

[Cshell]

I think this is such a crucial question. I've been bleeding money trying to fix this. I had an appointment scheduled with a CFS specialist in July, but got a call a couple of weeks ago that he had a cancelation so I got into see him sooner. I am talking about the wonderful and venerable Dr. Kaufman.

I've had my initial appointment, and a lot of tests, some of them very expensive. I'd like to say I'm hopeful, but the fact is I'm realistic. I don't see a lot of success stories here or elsewhere on the web where this is discussed.

I'm going to go through my follow-up appointment and do everything thing Dr. K tells me, but if I don't get results after a certain point I'm going to have to focus on going on disability, moving somewhere cheaper and getting help with things like cleaning.

I think it's important to be both hopeful and realistic. It has brought be some peace to finally file for disability. I might have retained a little more function had I done it sooner, but I worked until I could not work one more minute, and know I did everything in my power to keep going. We sold the house we built and downsized. It wasn't easy but the smaller house is less to keep up.

I would encourage you to financially prepare yourself for a loss of income. I knew it was coming but I thought I would have a few more years in me. I have been without an income since 2013. Also, get a lawyer immediately. I waited a year, hoping I would be able to return to work and trying to file on my own to avoid attorney fees. Then I waited a long time for a hearing. Now I'm waiting for the adjudication decision.

There's no reason you can't be hopeful, yet take care of yourself financially by applying for disability. I'm still hopeful but disability will relieve a ton of financial stress.

 

[KristenSF]

There's no reason you can't be hopeful, yet take care of yourself financially by applying for disability. I'm still hopeful but disability will relieve a ton of financial stress.

Thanks Cshell, I know you're right about this. I've just got to stop equating filing for disability with giving up. I'm almost there.

 

[SickOfSickness]

Almost everyone waits too long, when they legitimately need to be on disability. They don't realize how long the process is, and it's hard to admit you need to get started

 

[Cshell]

Thanks Cshell, I know you're right about this. I've just got to stop equating filing for disability with giving up. I'm almost there.

I loved my job, but pushing through really hurt my health even more. I do not regret filing for disability at all.

 

[PatJ]

I've just got to stop equating filing for disability with giving up. I'm almost there.

Giving up doesn't have to be considered a bad thing. To give up the stress of trying to continue working and instead focus on your health is way to see it positively. I spent several years trying to keep working. Even when I was finally forced by my body to stop, my mind kept trying to think of ways that I could work with such limited abilities. When I finally 'gave up' any thought of working any more, I felt so light ― a burden had lifted. I hadn't realized the weight of that burden until it was gone.

 

[Cshell]

Giving up doesn't have to be considered a bad thing. To give up the stress of trying to continue working and instead focus on your health is way to see it positively. I spent several years trying to keep working. Even when I was finally forced by my body to stop, my mind kept trying to think of ways that I could work with such limited abilities. When I finally 'gave up' any thought of working any more, I felt so light ― a burden had lifted. I hadn't realized the weight of that burden until it was gone.

Yes! Exactly!

 

[JAH]

I will check into medical qi gong but I'm sure it's not offered close to me. What benefits do you see and how long do they last?

Medical qi gong is great, but me, the problem is that you have to do it a lot for the benefits to stick, and don't have the energy for it. I found that it improved my energy, I felt kind of more "clear" (I know that's vague, but if you've ever had acupuncture, maybe you know what I mean) also helps with specific pain. Unfortunately, symptoms creep back sometimes within hours (like pain) or in a day. And the costs add up. But I will take it, just to get temporary relief.

I also really love cupping, and bought my own cups, and moxa, so I can do some of treatments myself, which brings some relief. I've had to cut back on cupping (for obscure reasons) but when was doing it regularly, it was the best day and time of my week.

JAH

 

[Jenny TipsforME]

This is a good question. Things I've spent most money on have been functional nutrition and acupuncture.

With acupuncture I'd feel benefit for a few days then effect wears off, a bit like medication that manages but doesn't cure. After at least a year I called it quits because felt it didn't get to root of problem. On the other hand, I started it at a point I felt I'd have to give up work but maintained working part time all the way through having acupuncture plus about a year after. Then had relapse and now can't get to acupuncture appointments! Probably completely unrelated but who knows?

I was surprised with nutrition how much better I can feel with tweaks but some costs maybe unnecessary. If you have cognitive ability, try the Mendus Diet study for free (recording diet and symptoms in detail for a few weeks then analysed stats and get personal results). www.mendus.org/diet-study-home.html
Experimenting with salt made big improvement for me to but turns out I have POTS too.

Liquid valerian eg Salus helped sleep and in turn everything else

I've started a thread about interpreting 23andme data if you go down that route too http://forums.phoenixrising.me/index.php?posts/717683/

On my blog I try to recommend cheap and free ideas that may help (no illusion these are cures!): tipsforme.wordpress.com select category Resource

In all honesty alternative treatments help somewhat but pale into insignificance compared to appropriate medication eg for me bisoprolol and ivabradine.

 

[Jenny TipsforME]

See above. At the moment my benefit money is being spent more on lifestyle accessibility stuff. I didn't consciously make that shift but your question made me realise I have. We have luxury of my partner having permanent job after many years of financial insecurity so benefits not necessary for bills atm. Money being spent on cleaners, getting me a lighter electric wheelchair, organic food, netflix, Spotify. Wonder also about tech to save energy eg wifi controlled light bulbs, robot vacuum. Dishwasher definitely worth the money. We didn't make these choices while money was tight, except for organic veg.

 

[Jenny TipsforME]

Sorry @Cshell my full answer is taking 7 hours!

I also want to add that I previously got to 95% better without spending any money. This is individual and I don't understand why, but you don't necessarily need to throw loads of money at the problem. Thought it was worth adding here to reassure people that it is possible to improve without being rich or in debt.

If I could tell you what happened I'd be repeating it and not housebound now but it did happen! I do have ME. I also have POTS. One of my theories is that POTS went into remission randomly (this can happen with POTS) and this enabled my body to gradually recover ME wise without added tachycardia, BP stresses. The ME definitely wasn't a sudden remission.

I wasn't paying for any therapies or magic treatment. I didn't do CBT or GET. I didn't even take any supplements or restrict my diet. I did take part in a study with a sort of sham control for CBT but don't think that helped. I took 10mg amitriptyline to regulate my body clock. I did intuitive, gentle Pacing. I gradually walked more but as I improved, not forcing it. I started back to work in a low stress role.

Viruses and work demands undid it all but that is a different part of my story.

 

[Cshell]

Sorry @Cshell my full answer is taking 7 hours!

I also want to add that I previously got to 95% better without spending any money. This is individual and I don't understand why, but you don't necessarily need to throw loads of money at the problem. Thought it was worth adding here to reassure people that it is possible to improve without

This is a good question. Things I've spent most money on have been functional nutrition and acupuncture.

With acupuncture I'd feel benefit for a few days then effect wears off, a bit like medication that manages but doesn't cure. After at least a year I called it quits because felt it didn't get to root of problem. On the other hand, I started it at a point I felt I'd have to give up work but maintained working part time all the way through having acupuncture plus about a year after. Then had relapse and now can't get to acupuncture appointments! Probably completely unrelated but who knows?

I was surprised with nutrition how much better I can feel with tweaks but some costs maybe unnecessary. If you have cognitive ability, try the Mendus Diet study for free (recording diet and symptoms in detail for a few weeks then analysed stats and get personal results). www.mendus.org/diet-study-home.html
Experimenting with salt made big improvement for me to but turns out I have POTS too.

Liquid valerian eg Salus helped sleep and in turn everything else

I've started a thread about interpreting 23andme data if you go down that route too http://forums.phoenixrising.me/index.php?posts/717683/

On my blog I try to recommend cheap and free ideas that may help (no illusion these are cures!): tipsforme.wordpress.com select category Resource

In all honesty alternative treatments help somewhat but pale into insignificance compared to appropriate medication eg for me bisoprolol and ivabradine.

Thanks for all of the info! I see some improvement with diet but find that diet falls apart when I feel my worst. I crave high carb, sugary foods, and eat them knowing they will make me feel worse because I'm too tired to make a meal. I also crave salt (lay's potato chips usually which are high in sodium and potassium). Sleep is key! I will check salus out! Thanks for the links to your thread and blog and all the information!