the way im being treated

[SaveMe]

this sux, im being treated like sh** from all these doctors and doctors offices when im sick as a dog, like ive done something wrong.


this is unreal. somebody wake me up from this scary nightmare, please


who do i go see? who has the best success rate?


how can these bastards be so quick to dismiss us?

 

[SaveMe]

I demand to know whats wrong with me and I demand to know what is going to make me healthy again.


I dont have all day to ponder these questions, I need answers NOW.




cold hands/ feet explanation: Raynaud phenomenon refers to vascular insufficiency of the extremities secondary to arterial disease caused by other entities including SLE, scleroderma, Buerger disease, or even atherosclerosis.

Me: Damn it doctor, you have GOT to help me, I am sick. Doctor: I don't appreciate that language, and your blood tests are normal.

 

[WillowJ]

I'm sorry to tell you this, but that's pretty normal. fatigue patients (CF as well as ME/CFS) are routinely ignored, patronized, and even abused (mistreated and verbally/emotionally abused and snide comments made in charts) by physicians.

If you don't have something that shows up in a routine physical (and this disease is not included in the normal screening tests on a routine physical), it takes a lot of patience and persistance to get any help.

Be firm about needing medical assistance, and keep looking for a good doctor (there are some out there--other than one of the actual ME/CFS experts, your best bet for a specialist is usually a research physician, but for a primary care doctor it's hard to tell ahead of time... ask the staff, get referrals, read about them on the clinic's website and make your best guess before showing up in the office, but you'll still probably have to try several before finding a cooperative one)... but remember that doctors have feelings, too. The pleasanter you are about it, the more likely they will cooperate.

I don't know Enlander in particular, but it does usually help to go to an ME/CFS specialist. I thought you were already seeing Klimas, however. I don't think you need both, since I think Klimas is unusually thorough. Some of the other specialists you might need to see several in order to get all aspects of the disease covered, but I would not think that to be the case with Klimas.

You will still need some kind of doctor in your own area. However most of the ME/CFS specialists do not act as primary care physicians (they are too busy just taking care of the one disease in all of their patients).

It helps if you can bring some research to show what tests they can run to find out what's wrong with you (the Canadian clinical guideline, which you can find here on PR, and the Pain Practitioner cover story which you can print, it's hosted at CAA, are both good resources), or ask Dr. Klimas to call and explain.

Good luck.

 

[markmc20001]

Hey saveme. Hate to bring you bad news, but no doctors can fix you. You have to actively participate in finding what works for you personally. Took me a long time to figure that out.

I would suggest seeing alternative doctors. They are all different, and you may have to try a couple to find a style that works for you. It's a generally safe route, although some vitamins can screw you up too.(watch for chelators)

I have a regular medical doctor, but all the treatments I take are vitamins. I have to help him help me, if that makes sense. He give me something I give him feedback, I try something and give him feedback.

The basic idea is to try and strenghthen your immune system so your body can heal itself.

One of the best things you can learn is to avoid what toxic stuff you put in your body. Avoid bad stuff. Eat good food. Sounds simple, but requires learning how to cook. eat whole foods, not stuff out of box with tons of lab created ingredients that aren't food.

Good luck.

 

[justy]

I'm with Markmc 100%

 

[glenp]

With Mark

As my CFS physician says " ou have to be your own doctor". There are no experts!!

Find caring physicians who you can run things by and will give you pointers, thats all you can do. Make sure you get your routine tests making sure you are not causing further damage

 

[SaveMe]

discouraging statements from most of you. unreal

im going to get healthy again, you watch and see.

 

[WillowJ]

I don't think anyone meant to be discouraging. If you look more closely, you'll see that several of us acknowledged reality (doctors can have a bad attitude and don't know about ME/CFS) but mentioned some things that you could do or know:

*there are some good doctors out there (in addition to the ME/CFS specialists); it just takes patience to find them
*alternative (complimentary and alternative practitioners like ND, for instance) practitioners can help
*you yourself can learn about your disease
*you yourself can participate in improving your health-related quality of life by having a good diet, using vitamins, etc.
*you yourself can educate your own physicians (some resources were suggested for this)

all that is encouraging and boils down to: yes, you can likely improve your health! That message is in every post on this thread--we all agree with you

 

[hope]

Maybe the Breakspear Hosptal UK? www.breakspearmedical.com

 

[*GG*]

discouraging statements from most of you. unreal

im going to get healthy again, you watch and see.

I thought the comments were good. It's discouraging if you just wish you could take a pill and it all went away, but unfortunately this disease does not work that way! I think you are still in the angry stage of this disease, it steals a lot from you, and unfortunately you need to be your own advocate (usually) and even though we feel like hell, it takes some effort on our part to get better. Trying different modalities and doing research.

Hang in there SaveMe!

GG

 

[*GG*]

The basic idea is to try and strenghthen your immune system so your body can heal itself.

Good luck.

This made me think of Mike Dessin's story. He was on his death bed, (I believe) and is much better now!

 

[markmc20001]

discouraging statements from most of you. unreal

im going to get healthy again, you watch and see.

Believing is good, and remission can happen!

 

[markmc20001]

This made me think of Mike Dessin's story. He was on his death bed, (I believe) and is much better now!

That's a pretty picture of recovery right there. Amazing.

 

[garcia]

Maybe the Breakspear Hosptal UK? www.breakspearmedical.com

I think he is in the US, no?

 

[hope]

Hi garcia, the address is at the bottom of the opening page.