Thank you everyone for what you wrote. I feel so much clearer in understanding, and that a foggy veil has been lifted in regards to many aspects of this and how I need to proceed. Thank you! Thank you!
(I wrote this after a visit with my PCP, so I'm struggling with words and a little discouraged by how the appointment went. More situations to figure out.)
Most doctors are not likely to know about or take these things very seriously. There are exceptions of course.
I think that there is a recent thread on what to tell a new doctor. Generally, I think most of us find that describing our symptoms without telling the new doctor our ideas about them, works best. Unless you know the doctor and how they work.
Foggy, is sort of ME/CFS-speak--might not be understood. You might rather say something like "problems with concentration, memory," or however you could objectively describe it.
Thank you,
@Sushi!
This is very helpful. I need to do a better job at describing my symptoms. I've been so hesitant, after going through a 7 year fight for SSDI and dealing doctors who would prescribe antidepressants or a gym membership. I'm always concerned they are going to prescribe something that is contraindicated and I'll be considered non-compliant or write something in my chart out of context that I don't have the energy to correct. Both cause more problems. I feel like a tight rope walker during my few doctor visits. Then there's the times I foggily say too much. I'll get better at this, hopefully past this, and find a doctor I can build a trusting relationship with.
Methylation and its protocols: alternative medicine, not mainstream, not proven
Detox: alternative, not medicine concept.
molybdenum and manganese supplements: a general multi-vitamin is what's recommended in mainstream medicine.
Supplements in general: not proven, money spent for the toilet
Enteroviruses: real but there is no proven treatments in mainstream medicine.
Physicians will be able to help you for specific symptoms: sleep, diagnosis, hormones, disability.
It is best that you develop a good relationship with a local physician, and if able to consult with ME expert for Me related issues
@Kati, thank you, too!
I'm learning, better late than never. Thank you for helping me understand this better. I need to work on developing a better/good relationship with a local doctor and being able to see a ME expert. Probably like many of us, I'm having a hard time with being able to trust and feel comfortable in a medical setting with all that I've been through these last 15 years and how much of this seems to be. Also, there's so much at stake.
How you get treated when you mention things you have, often all will depend on what that individual dr you are doing with thinks on the subject. eg even telling many doctors you have CFS can get a shocking response. MCS should like CFS be a recognised illness and in fact MCS is a recognised symptom of CFS....
All those other things you mentioned "methylation, detox, molybdenum and manganese supplements," I wouldn't bring up to an ordinary dr as they aren't very recognised..
Any doctor you hope to have a good ongoing relationship with, you should feel comfortable sharing your symptoms with that dr in whatever is the best way you can put it. ....
generally it is usually helpful to have a CFS doctor but then also have a normal general dr who you don't have the expectation to know much about CFS or to advise much around this and if you have CFS issues go to the CFS doctor.
@taniaaust1, thank you!
I wish doctors recognized MCS and the extent that it is health and life limiting (for me it may cause any of these: angioedema, swelling, pain and coughing). I had to bring it up today with a doctor because I may have to have an endoscopy. So I need to check out the facilities and make sure the facility and the staff who will be with me during the procedure isn't scented in anyway.
My experience with having to bring it up in these situations, if they even seem fine with it, their treatment of me, words, or the chart seems that they have me suspect something being up psychologically with me. It causes me more distress and complicates me getting treatment.
After seeing my doctor today, I'm wondering how she understood what I said about my scent sensitivities and how she perceives me.
The CDC itself acknowledges that nearly all doctors consider "CFS" to be "psychological", and my personal experience certainly confirms that. My illness includes POTS, and I get better results from doctors when I can focus on those symptoms, especially in the Emergency Room. When dealing with a new primary care physician, it is not so easy to gloss over the non-POTS symptoms.
I suspect that patients with a lot of pain get the worst treatment. Where I live I don't dare mention pain, because I will automatically be labeled a drug seeker and treated badly. In fact, most doctors here will not accept chronic pain patients or if they have a prescription for opiates - it's the first thing the receptionists asked when I was looking for a new primary care physician a few years ago. This is a blatant violation of the ADA, but nobody worries overmuch about that.
Thank you
@jimells. All these years, I kept thinking that doctors would know or understand this illness. So each doctor I would tell them mainly cause I thought I needed to because of all the complications involved in my health and ability, and I was hoping they could help me.
I'm sorry for your personal experience of doctors psychologicalising CFS. It seems to be the case for me and most of us. Thank you CDC (and other that went into and goes into this kind of thinking)! If I had the energy to pursue things, I need to have other things going on with me diagnosed. Then I can have the diagnoses charted so I can bring them up, and leave out CFS and MCS.
I know, I feel bad for you and people I know that are in pain, and needing prescriptions for it. That's awful, that the receptionist asked that and that doctors won't accept chronic pain patients. It seems to be the struggle of what are you to do, you need help but many of the people you need to help you won't because they won't see you or help you - they look at you with suspect.
Thank you for writing what you did.
It helps.
I've never gotten anywhere mentioning ME/CFS or any of the so-called alternative medicine treatments we deal with here in PR. That will almost always work against you. But it's funny because if I merely mention various components of ME/CFS, they take me very seriously.
For instance, when I mention that I'm "immune comprimised" and I refer to the blood tests that prove it, I get taken seriously. When I mention chronic low blood pressure and autonomic nervous dysfunction, I get taken seriously. All these things that make up ME/CFS get taken seriously when they're mentioned as isolated conditions, but so help you God if you attempt to tie them all together under the ME/CFS umbrella, suddenly you're a nuisance and a joke.
@Patrick*, thank you!
Well, said and so true what you wrote. I feel so much clearer as I read what you wrote, and everyone else shared. You think I would have understood this before now. It's so interesting or frightening that they aren't putting it all together. I think I've been hitting my head against a wall thinking the doctors I've seen would, I had thought at least one of them would know some of the ins and out of our illness. I guess a lot of that has to do with how it has been presented by the CDC and other and the news. I long for the day, as we all do, that this will not be the case. In the mean time, from reading what you wrote and others, it's best to share my symptoms, the diagnosis I have that they know and will take seriously, and hopefully can treat, and try to see an ME specialist.
Thank you everyone for sharing with me, it helps a lot.
