patient and doctor experiences

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Community Voices

Three good days

About six weeks ago, I finally confronted my doctor about his poor listening and how very unsafe I had begun to feel with his caring for my mental health. He was (predictably) not terribly receptive, but he did finally agree to decrease my anti-depressant dosage. The high dosage had led to my inability to accomplish almost anything because I couldn't think or move or understand things. It was bad.

So tapering off was a painful period with physical, emotional, and psychological symptoms. But then I woke up last Sunday at 8:30am without an alarm clock and started thinking (with positive motivation) about the things I could do with my day. I had three days with this calmness and positivity. (Then things went a bit downhill again today.)

It makes me angry to think that I thought I was just super depressed when it was actually my medication making everything worse - and my doctor didn't do a thing to make sure to understand my experience. Even when I told him I had increased thoughts of suicide, had to contact a crisis line several times, and had to take time off work, he just responded with "ok, so I'll give you another three month prescription."

I am currently on a wait list to see a psychiatrist and another wait list to try to get a new doctor (big shortage of both around here). I see a therapist every two weeks (as often as I can afford) and I am so thankful that she was the one who helped me to see how overmedicated my brain was. Hopefully better things are coming.

#MentalHealth #Gooddays #Depression #Anxiety #Trauma #SuicidalThoughts #Medication #PatientAndDoctorExperiences

8 people are talking about this
Community Voices

You can see this group is about anything. I wish it wasn't! I didn't put Childbirth, as I don't think it applies! lol. But one thing is...you can't get well or better if your doctor doesn't understand. You know that! Don't be afraid to search for one who does! I AM NOT A DOCTOR, but I've been in the medical field 20 years before disability. I've never stopped. Advocacy because of my love. While I am weary and have shut down many sites, I love Mighty so here I am.

If you have questions, I beg you to be as specific as your comfort level allows. (regarding the relationships) There are ways to make your visits rewarding and helpful for getting better. I can attest to this. I've lived through things that are a bit shocking, but having the right doctors and mind set, is what saved my life. I am recovering from something now, so thanks for your patience.

Something we have known for a long time, but it's not spoken about. Again, I do not "bash", but I urge you to go with your gut. Harvard found (as if it was new) the 3rd leading cause of death. And many believe it is higher, as most are unreported. This is not to scare, but to inform you in all honesty, you must be involved in your care. Trust, transparency etc... is a must. I will do a video to show what is needed for doctor visits at another time. Please, it's your life, and make it worth getting better!

Community Voices

Who to Contact when hospice says they’re coming to evaluate while patient organs maybe failing and never show up. Hospice said they were coming and just never showed up. Told us they were doing us charity. I don’t even know how to fathom or handle this#neglect

2 people are talking about this
Community Voices

World Diabetes Day Reflection

<p>World <a href="https://themighty.com/topic/diabetes/?label=Diabetes" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7700553f33fe99129c" data-name="Diabetes" title="Diabetes" target="_blank">Diabetes</a> Day Reflection</p>
6 people are talking about this
Community Voices

Just need someone to hear me and understand

I am sitting in my chair at the house with my loving loyal dogs with tears streaming down my face. I don’t think I even can explain all the emotions I am feelingrifht now. I am just home from another doctor appointment who was very pleased with themselves when they told me (one of so many) how healthy I am and how fortunate I am because all of their tests and questions lead to finding nothing. I am happy yet also furious. No one wants to help me figure out what’s going on with me. Just tell me to exercise more and things would be oh so much better. I have had the same basic symptoms come and go for 10+ years with the last 2 years getting so bad I have had to give up teaching and wasn’t even able to do it part time or anything else I trieed. Physically and mentally, I guess I just feel broken. The symptoms get worse and new ones add on. And I am so emotionally exhausted from the pain and the fact that I can’t do the things I want to that I am constantly angry at the people around me and feel worthless. I am seeing a therapist but haven’t found one who’s been able to help me cope with this part of my depression. My family loves me and provides the only support they k ow how. But I can’t take another well that’s wonderful they didn’t find anything wrong. I am screaming silently with frustration and pain and the agony of people’s expectations of me because everything’s “ok” me you look great this is the first time I posted and This is probably rambling but I just needed to get some of this out of me. Thanks for listening to my rant.
#FibroFog
#Depression
#HemiplegicMigraine
#Not understood
#angry
#PatientAndDoctorExperiences
#invisibledisabilities
#ADHD
#alonebutnotalone

19 people are talking about this
Community Voices

Just found out after two years that I have Lyme Disease!

I was 15 when I had woke up one morning with severe pain all in my stomach and back. After a few days this pain just kept spreading and eventually got to pretty much every part of my body! To sum it up it’s easier to name what doesn’t hurt!! I had many other things like headaches, swelling, poor circulation, brain fog etc... I went to so many paediatricians, speacialist, my family doctor, naturopaths, iredologist, physiotherapy all after I was diagnosed with Fibromyalgia by the second paediatrician. I had a doctor tell me it was in my head, i had another one who was in her 60’s compare her back pain to my full body pain and other symptoms and actually believed it was the same thing, and I had doctors ignore my words just because they believed it was from my mental health issues! After I was diagnosed I did excercises, physio, took medication keep in mind i could barely move from the pain and stiffness!! I started going to naturopaths after a while because medical doctors just weren’t doing anything. I asked my family doctor to test me for lyme disease after naturopaths, friends, and family had all said it sounded like Lyme. So months went by after my family doctor said no to testing me and I finally decide to start looking for more naturopaths and my mom discovers a family friend of ours has a sister who’s a naturopath she set me up with another naturopath who speacializes in viruses which is what she thought it was! I finally started to get answers after going to her. I just yesterday found out I have Chronic Immune Supression, Lyme disease, and two co infections with the lyme disease! It has been such a frustrating journey but I am finally on the right path to getting better!!! #LymeDisease #PatientAndDoctorExperiences #doctorsdontlisten #DoctorsAreDickheads #doctorsdontlisten

18 people are talking about this
Community Voices

Have you been dropped as a patient since January 2020? If so, what was their reasoning? It's a pandemic. It's not OK.

<p>Have you been dropped as a patient since January 2020? If so, what was their reasoning? It's a pandemic. It's not OK.</p>
4 people are talking about this
Community Voices

Have you ever been to a pain specialist who does random drug testing, and who won't let family back with you – regardless of COVID-19?

I recently moved across the country, and had a pain management doctor in California. Now, I'm getting more and more established in Nashville, where I currently live – which means finding newer doctors. Yesterday, I tried a new pain specialist...Where I was told I would be randomly tested for drugs, and no family would be allowed back with me in any situation.

Have any of you experienced this before? Is this normal where you live?

I didn't experience these rules in California, so I'm wondering if they're a norm elsewhere?

#ChronicPain #P  #Medication #PatientAndDoctorExperiences

3 people are talking about this
Community Voices

Rare COVID-19 Symptom - Only 2 other cases of it

I was diagnosed with COVID-19 and have multiple rare underlying conditions. With the conditions I have, I often have atypical symptoms with even the most common things. So when I was finally diagnosed with COVID-19, I began at home treatment for it of just resting, intake of fluids, and that's really it except for Tylenol to keep fevers in check. After a few days, I began to get a weird rash. At first I thought it was a return of Shingles as it was only on one side but then within an hour or two it began to spread across my entire back, arms, legs, and forehead. We tried Shingrix which seems to slightly repress it but then it just kept going regardless.

According to the New England Journal of Medicine only two other cases are documented that have displayed this atypical response to the virus. I am now the third I've heard of countless others out there with similar symptomology through various support groups etc. #COVID19 #PatientAndDoctorExperiences #symptoms #RareDiseases #ChronicIllness #ComplexUnspecifiedNeuromuscularDisease #Rash #pandemic #COVID19

3 people are talking about this