What Can I Say To My Fibro Doctor?

[starryeyes]

I'm mostly bedridden with moderate to severe ME and Fibro plus the worst case of endometriosis the lab at Cedars Sinai has ever seen.

My Fibro doctor who I have to see for disability tells me like you would talk to a kid that I just need to make up my mind to start exercising. I've been trying to explain for decades that I want to exercise but it makes me extremely sick, and causes me exorbitant pain that lasts for days – I know you all know what I mean. I have told him verbally and in writing that I can't even do most activities of daily living or exertion of any kind without torturous consequences. He agrees that I'm disabled (thank God) but he sees me as someone who can still exercise.

A decade or so ago when I could exercise some it was still never enough for him. I've tried explaining to him that I used to really enjoy exercising and that I want to now but I can't and round and round we go. He is correct that exercise helps Fibro patients, but not if they also have ME of course, but he thinks I'm just trying to make up excuses.

Does anyone have any idea of what I could possibly say to him to make him understand that exercise is contraindicated for ME and could make me worse? I can't change doctors, I've tried and my other choices are way worse for me than he is.

I know this issue is universal for us and I already know the consequences of pushing and crashing but what can I say to him when he starts in on me about this so that maybe he can understand my plight? I'm so mad and frustrated about this situation I'm afraid I might just start yelling at him or worse.

 

[valentinelynx]

I understand that money may be a limiting factor for you, but if you live in the Bay Area, you are near to the Center for Complex Diseases in Mountain View, where Dr. Kaufman, Dr. Chheda, and a new doctor (sorry I'm blanking on the name) are providing some of the best care for ME/CFS available. You really need a doctor with experience in ME/CFS not just fibromyalgia. The accepted wisdom regarding fibromyalgia is that the best treatment is aerobic exercise. This is odd, given the similarities between fibromyalgia and ME/CFS, because aerobic exercise is contraindicated in the latter. I have not sat down with the research to analyze how this paradox came to be, but I believe there must be some key difference between those with fibromyalgia and ME/CFS and those with "only" fibromyalgia that are improving with exercise. Probably they have very different diseases.

I do not know any sure way to convince stubborn doctors they are wrong. Does your doctor know you have ME/CFS not just fibromyalgia? Whether or not he does, you could try referring him to the new CDC pages on ME/CFS which provide diagnostic criteria and a discussion of symptoms, emphasizing post-exertional malaise, and thus the need to avoid exertion that causes harm. There's a good discussion of the new CDC pages in Medscape (you need to establish a free account to read it), or you can go straight to the CDC pages here. Unfortunately, however, some doctors are threatened by patients referring them to sources of information. I hope that's not true of yours. Best of luck.

 

[starryeyes]

Thanks, Valentine. I haven't been able to handle the drive to the peninsula so I may just be stuck with my doctor, but I might be able to try it again. It's too bad the traffic has gotten so much worse here, I can't be in the car that long, not even as just a passenger.

I've given him papers on ME in the past but it's been awhile. Maybe he'll freak out on me if I try to give him the latest info from the CDC but then again he may not so it's worth a try. I think I'm a scapegoat for him on his bad days because he can be very compassionate sometimes too. Thanks for the Medscape suggestion, I haven't seen that yet, that sounds like a good possibility.

Yes, people with only Fibro often respond well to exercise and most of them can also work and I've had that rubbed in my face by them too.

ETA: I just read the first two visits to the CCD cost 1K each! That's highway robbery - especially since there are no real tx for ME. Well, now I'm more thankful for my doctor afterall. This is such a sad world we're living in.

Also, I don't need an ME specialist, been there, spent thousands on that and look where it's gotten me.

But, I very much appreciate you taking the time to try to help me and the links you gave me, Valentine.

 

[Judee]

I do sometimes try to give doctors info on ME/CFS. Most of the time they are not open but sometimes if I only give them a small amount to read (like one page) with somethings highlighted, they will at least look it over.

Below near the are a couple of good papers from Workwell Foundation. Many of the people on staff have a strong educational background regarding exercise and extensive experience with ME/CFS.

For instance for Staci Stevens it says, "Staci Stevens holds a bachelor’s degree in Sports Medicine from the University of the Pacific and a master’s degree from Pacific in Exercise Physiology."

For another staff member J. Mark Van Ness' it "He teaches classes at the University of the Pacific in the College of the Pacific and College of Engineering in the areas of exercise science, nutrition and biology. You can see more on their About Us page here: http://www.workwellfoundation.org/about-us/

So my suggestion would be to relate some of that to him and then give him this: http://www.workwellfoundation.org/w...March-26-2019-CI-press-release_finalfinal.pdf (Just one page)

OR this: http://www.workwellfoundation.org/w...T-Letter-to-Health-Care-Providers-v4-30-2.pdf (I especially like this last one because it is addressed directly to Healthcare Providers and states these exercise professionals' opposition to GET (graded exercise therapy) for ME/CFS patients.
(two pages but the 2nd page gives references).

Hope something will work for you.

Edit: If you were to use that second letter I would highlight the third paragraph where it says:

Scientific studies have demonstrated that even mild exercise can provoke ME/CFS symptoms [6] . This low tolerance for physical activity is typified by an abnormally early transition to anaerobic metabolism [7]. In ME/CFS the aerobic energy system does not function normally.

 

[Judee]

I found another website that also helps with additional links (some that double back to Healthrising.com) but they sound good as well.

Here it is: https://howtogeton.wordpress.com/20...cise-is-dangerous-for-people-with-me-and-cfs/