I contemplated the best way to zip through this list of health care professional experiences and I think I’ll just list them in alpha order by specialty. I’ve had hundreds of appointments in the past three years and I’m sharing my experiences because I want other chronic illness people to know they aren’t alone, there are lots of us being mistreated, misdiagnosed, misinformed and belittled. You are not alone. I could ramble on and on about my various symptoms, suggested medications & treatment plans and why I’m seeing each type of health care professional, but I’m not going to do that at this time…right now I’m just adding the some of the more memorable moments. You may be wondering why I have all this information, well I’ve filed unsuccessfully for disability four or five times now. Currently waiting on a hearing date.
Feel free to skim. 😁 The specialist types are bolded.
|Cardiologist – I’ve seen four.
The first one told me I was deconditioned as I lasted less than one minute on the treadmill for the stress test and maybe low in magnesium. On a side note – I was not deconditioned. She then offered me some chocolate with added magnesium that of course she sold at the counter. As I’ve noted before I was an avid walker and you wouldn’t lose that strength and endurance that quickly. I literally woke up one morning zapped of energy and it never returned. My employer health insurance ran out and I never saw her again.
The second ran me through test after test, and in the end told me I wasn’t “that sick” and refused to give me my records because he had to “send them to the government…” Wait what?! My son and I just stared at him like you are literally out of your mind!! They said I did have an issue but nothing that needed attending to.
The third one said that I definitely have an issue, but it’s not my heart. (Two minute, 2nd opinion appointment)
The current fourth one told me that postural orthostatic tachycardia (POTS) (common with CFS) is a speculative diagnoses and that he doesn’t believe in it. When I gave him my list of symptoms (I have one list of all my symptoms and one just for him/heart related) he said, “Don’t give this to people they will think you are crazy. It’s overwhelming.” I just looked at him and said, “Yes, having all those symptoms is overwhelming.” Grrrrr
|ENT – He initially told me I walk like an 80-year-old woman, but was much nicer the second appointment after my vestibular testing showed central nervous system and inner ear vestibular dysfunctions.|
|Gastroenterologist – He told me my stomach issues weren’t concerning. Really, because I’m here because I find them concerning. I’m eating ant-acids like a kid in a candy store. (This problem was mostly solved by homeopath incidentally.) He ran zero tests and offered to do an upper GI, with no other testing. Um no I’ll pass.|
|General Practitioner – I saw one in the beginning when I had employer health insurance and he told me he doesn’t believe in CFS. That’s it’s likely just fibromyalgia. Wondering if he keeps current with ANY medical literature because a lot and I do me A LOT has changed since he graduated from medical school.
I also recently saw an ER Dr. That day went something like this. I had been in a bad flare for weeks. I went to the Dr to make sure I wasn’t in fact dying because I couldn’t catch my breath and the fatigue was off the charts. They ran an EKG…six times!! They said it was abnormal and I could either have my son drive me or take an ambulance, but to the head the ER immediately. I asked for a copy of my EKG on the way out, they said I didn’t need it (I thought this was odd). So we arrive at the ER, my son tells them what’s happened, they rush me back and say my EKG looks fine, but do I have a copy of the EKG from the doctors office, of course not. Okay. They put me in a room for observation, run blood work, take me back for x-rays, and I wait. The Dr. comes in a couple hours later and says, “Everything looks fine.” As any chronic illness sufferer will understand, I’m half relieved, half frustrated. I ask him what he would do if I was his sister, what would he recommend and he says….find a therapist and then he recommends lexapro. WHAT?!?!? I’m here because my Dr sent me, I’m not now, nor have I been freaking out. So I asked him what else he would recommend because I have a therapist and he said well a good Dr and a good rheumatologist. With my energy completely zapped I just look at him blankly thinking so you got nothin’. So on my way out I ask the nurse if I can have a copy of labs – you know the ones he said were fine. They were not fine! I was showing all types of abnormal readings, but according to him, I was fine and should see a therapist. Just wow. I was too fatigued to take it up with him, but had I had an ounce of energy I would have handled things differently.
|Hematologist – This one was priceless. He first told me I was just “malnourished” and I needed to “go out for drinks more with my girlfriends” you know have more fun. I left in awe. He did order a pet scan and an EKG, which he said was irregular and landed me back at the cardiologist, but he was so condescending it was shocking. When I pulled my chart for disability filing it was awful. He had written that I had none of the symptoms I actually have. Keep your eyes on your medical records folks. Some of these people don’t care, at all. It took call after call to get them to update my chart correctly.|
|Homeopath – She helped me, she really did. More than all the specialist combined. But she told me my energy was stuck in my head and I needed to will it back down. That I needed to ‘want’ to get better. Um yeah I’m here because I want to get better. That my childhood trauma was holding me back and I needed to get it out. So frustrating. But she did provide some great health advice, basically cured my stomach issues, tested for MTHFR mutations, which came back positive, told my me EKGS were showing very low energy and I learned a lot from her. Just didn’t agree with her energy theory.|
|Neurologist – I’ve seen two.
The first one told me I had vestibular issues only, no CFS. I saw her the first week I got sick, and then once more as a 2nd opinion to the Dr below. She told me these vestibular issues can cause extreme fatigue.
The second one – he was…something. He kept me waiting an hour and a half. So by then I was shaking. That’s now my body’s warning sign of collapse. I just start shaking and there’s nothing I can do about it. He kept saying, “Don’t be scared.” I felt like screaming at him I’m not scared you made me wait an hour and half and now I’m EXHAUSTED! He too told me I walk like an old woman and pushed on my back as if to hurry me up as he had me demonstrate my walk in his hallway. He said I seem like I have pre-Parkinson’s disease and wanted to do a spinal tap. Well that scared the bajesus out of me and I never went back and he never followed up.
|Opthamaologist, MD, PhD – He’s been fine. He wouldn’t give me a prescription for my eye, which feels so dry it sometimes sticks to the eyelid in the middle of the night and it tears and tears. Instead he kept pushing me to buy some foam he sold at the counter. I get these terrible sharp pains in the back during flares and it loses focus, which I will be seeing him about again in a couple weeks. He diagnosed me with blepharitis and dry eye and sent me on my way. I will say this though, he never talked down to me, very refreshing.|
|Physical therapist – I have seen two.
The first one was fine and actually very compassionate in helping free my frozen shoulder. He saw me when I was well enough to come in. I was supposed to see him twice weekly for an hour, but ended up not being able to do that because of flares and general lack of energy and saw him for a half hour every two weeks or so. Now the other side is freezing (seriously) but I’m using the stretches he gave me and trying to tackle this one on my own.
The second one for the vestibular function, she’s another story. I have a very painful neck (inverse curvature of the spin) and she was forcing me to move it around and it got so bad I couldn’t move it at all. She told me to correct the dysfunction my neck had to be moved, in ways that hurt, not just ouch but thought the roof nerve pain. Um no I can’t. So I asked to be referred to a different hospital. Waiting on that. On top of all that, the point of each session is to repeatedly make you dizzy, over and over and over again. It’s really awful and unbelievably exhausting in normal circumstances, add CFS to that, it’s like torture.
|Physician Assistant’s and Nurses – I’ve seen five.
This first one, when I had employer insurance and didn’t know what was wrong, was absolutely wonderful. She was compassionate and helpful and referred me out all over the place. Sadly, I lost my insurance and my job and that was the end of her.
The second one, who is the one I still see, is so frustrating. I could write a book about the things she’s done and said that did not fall in line with first do no harm. She’s given me false information repeatedly, refused referrals, misdiagnosed me, it’s just been awful, awful, awful. Why don’t I switch offices? Because there’s no promise it’d be better anywhere else, but mostly I don’t have the energy to deal with all this with someone else. And I did try to switch to someone else in the group and he’s quit, plus he was never there to see.
The third one I saw in place of the one above and he was wonderful but doesn’t normally work at this location. He actually told me there is perhaps a connection between Cipro drugs and this illness (never heard that but my fibromyalgia came about when I had just finished up Cipro).
The fourth one was the one I had tried to switch to in replace of the second one and he was okay. He admitted he knew nothing about the illness and then he recommended CBT and you guessed it GET (graded exercise therapy). I said no, you need to research the latest findings, GET is really harming people. He tried to tell me that that was what was recommended and I just looked at him shaking my head. He said we’d follow up but he ended up quitting.
And the fifth I saw for an off appointment on a side illness and she said we’d follow up and she never did. I ended up back with the second and she told me there was nothing wrong, even though the fifth had said there was. The problem persists but she insists it’s all part of aging. Really?
|Psychologist – She was sweet. I’m not willing to try anti-depressants after anti-depressant to see if maybe by chance one doesn’t make me feel awful so this appointment was lost on me. I tried one and it made me significantly worse. My chemical sensitivity doesn’t allow me to take much of anything without a complete revolt of my system.|
|Rheumatologist – He was great in the beginning. He made the initial CFS diagnoses. He was compassionate and understanding. And then he started acting oddly. I had passed out in the shower and he told me maybe I was hyperventilating. WHAT? I’ve never hyperventilated…ever. He left our last appointment jokingly saying well I’m going to have kick you out, if anything changes let me know. So yes, I’m here because I passed out, that’s new, can we address that?? Nope. So awaiting referral to new rheumatologist. Been waiting since March – it’s now end of June.|
|Therapist – I’ve seen three.
The first one said that I was just stressed and need to work on that… Um no I’m sick. She actually said to me, you seem fatigued. Are you sleeping. Um first of all no and secondly did you not catch that I have CFS? Lost employer insurance didn’t see her again.
Second one tried, she really reinforced self -compassion as I was emotionally beating the crap out of myself for not getting better and for letting every single person in my life down. I believe she thought that CBT could cure me though. She was having me dredge up all this crap in an attempt to release it to cure me. Um so that didn’t work. Can you imagine if therapy cured all viruses? Don’t get me wrong I understand stress makes you sick, but not 100% of the time, nor does releasing it cure you 100% of the time. Then she changed offices and I had to find a new closer therapist.
My third one is going along very nicely. Helping me with being self compassionate and taking it easy on myself. This is a tough illness folks. Just navigating the Drs appointments is cause for therapy. I’m grateful beyond measure to have somewhere to get anything I need off my chest. When your circle gets smaller and smaller and smaller, as people stop checking in on you, the people in your life who graciously choose to stick around get tired of hearing about the same old things and it’s nice/crucial to have someone to take those things to.