1. < Autoimmune Diseases

Tired of the gaslighting

Posted by cwitton1 @cwitton1, Jan 5 8:24am

I am done.
No more doctors. They’ve gaslit me, passed me off, placated me with unnecessary tests, tried detrimental drug therapies. No more “specialists” who pass you along to the next because it’s “not my job”. They straight up don’t believe anything I say. I am done. This journey that started in 1989 with a case of mononucleosis has ruined my life. I am done chasing answers and being mentally traumatized by doctors’ lack of empathy or concern. I am tired of reading my after visit notes and finding errors- things we never discussed or blatant lies about being examined. I am sick to death of being told it’s just anxiety manifesting or my brain tricking my body to make it *think*there’s pain when “there isn’t”. There is pain. A lot of pain, and I do not wonder at all why people with autoimmune disorders or chronic conditions- chronic pain patients, take unthinkable measures. News flash:NSAIDS don’t do squat for pain. They only wreck your kidneys and liver. What I have learned in the last 35 years is you can trust no one but yourself. Doctors are not there to help you. Doctors are there to make money and feel important about themselves. Doctors refuse to tell us, “I don’t know.” I’m tired, and it’s become more of a self preservation technique to just walk away. No more visits. No more medications. Whatever will be, will be. Call me a quitter. I don’t care. We were brought up to think if you’re sick, go to a doctor and they will help you get better. If your pain is new or gets worse, go to your doctor. They will figure out the cause. This is bs. No one’s going to help you. No one’s going to believe you. You will begin to question your sanity and eventually come to the conclusion that you’re on your own. The power dynamic in medicine is huge. They may have paid for an education, but I am not stupid and I know my body. This is me, finally defeated, jaded and hopeless. This is me accepting that this is how the rest of my life will be, forever. It’s not an exciting, rosy prospect. This is me, and I am done.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

marye2 | @marye2 | Mar 11 1:09am

I have had autoimmune for 30 years and thought I was an outlier since I still can do most things. Besides the basic Plaquenil, Methotrexate (not on it anymore as dose got really low), and Pantoprozole, I've always paid attention to the integrative things I can do to resolve pain. PT stretches are incredible for generalized pain, as is walking. I also do edema massage (fingers to torso; toes to torso), cold pack/microwaveable warm packs. lidocaine patches and KT patches. For the fibro piece, a 20 minute walk works. I stick to non-processed foods for the most part, hydrate and keep moving. Simply cannot stay in bed. Topical analgesics work: I liked ibuprofen creams before they went off market, but a good quality CBD cream at the "hot" spots is helpful. I have been to the pain doctors for shots, but the deal is to keep up the PT stretches--go to someone who is a sole proprietor with osteopathic experience. Massages work, too. It is trial and error to find your way.

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Janet Sandstrom | @janetsmith | Mar 11 9:00am

Amen, and you are not alone.

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1 reply
marye2 | @marye2 | Mar 11 2:49pm
In reply to @dloos "It’s a shameful thing that the lab tests seem to be parceled out at a glacial..." + (show)
@dloos

It’s a shameful thing that the lab tests seem to be parceled out at a glacial pace.
I had a similar thing with B12 deficiency. I’d suffered for 8 months going to doctor appointments before a young Neurologist finally ordered the test! Extremely low B12! With supplementation I was back to myself in three months.
My regular GP acted flummoxed!
A simple test that most post menopausal women should routinely get took eight months and multiple doctors to prescribe.
Now, I always tell my friends to request the test. They are almost always too low, just like me.

Now, I’m dealing with post Covid(probably), and my ears and eyes are affected. I do have a doctor that is testing extensively to try to help me.

Jump to this post

I've had Covid twice--both times before the new vaccine came out. It very much mimics my autoimmune disease. For eyes, I go to an ophthalmologist, and they test pressure, visual field and color contrast and check the retinas. You might do that. I use Systane and Pataday for my eyes, which are very dry. My mouth is dry too so I use Oral B dry mouth wash so I protect my teeth and gums. It is Sjogrens overlap. An ENT might be best for checking your ear health, as well. I get occasional vertigo and Dramamine and the Eppley Maneuver or Foster Somersault help. Tinnitis affects alot of people; I deal with my TMJ and it seems to relieve it. Best of luck. An ENT might be best for checking your ear health, as well. https://www.scientificamerican.com/article/covid-can-cause-strange-eye-and-ear-symptoms/

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1 reply
dloos | @dloos | Mar 11 6:08pm
In reply to @marye2 "I've had Covid twice--both times before the new vaccine came out. It very much mimics my..." + (show)
@marye2

I've had Covid twice--both times before the new vaccine came out. It very much mimics my autoimmune disease. For eyes, I go to an ophthalmologist, and they test pressure, visual field and color contrast and check the retinas. You might do that. I use Systane and Pataday for my eyes, which are very dry. My mouth is dry too so I use Oral B dry mouth wash so I protect my teeth and gums. It is Sjogrens overlap. An ENT might be best for checking your ear health, as well. I get occasional vertigo and Dramamine and the Eppley Maneuver or Foster Somersault help. Tinnitis affects alot of people; I deal with my TMJ and it seems to relieve it. Best of luck. An ENT might be best for checking your ear health, as well. https://www.scientificamerican.com/article/covid-can-cause-strange-eye-and-ear-symptoms/

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Thanks for your comments.
I am on my 7th ENT. He is suggesting balloon inflation of Eustachian tubes. I will try it as it seems low risk with a fairly high success rate.

I also use Systane and Pataday for my eyes. I have seen Optometrist, Ophthalmologist and Retinologist about my eyes. They don’t find anything amiss, but my eyes seem foggy and dry all the time.
I use some overnight lozenges for my dry mouth, and I use Xlear spray for dry nasal passages. I have been tested three times for Sjogrens, and it is always negative.

I went to PT for eight weeks for Vestibular therapy, and it made no difference. I was fitted with a TMJ mouthpiece. It made no difference.
As you can tell it is not for lack of trying that I have had no answers or improvement.
I keep hoping at some point we’ll hit on something to give relief.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 11 7:44pm
In reply to @krisjb1 "If I had a lung tumor I might investigate and find that it is the only..." + (show)
@krisjb1

If I had a lung tumor I might investigate and find that it is the only option or the best option at the very least. But I have been living with my pain as the cervical issues continue to worsen for at least 30 years and it is not life threatening as far as I know. It will probably get worse but I am already 77 so I don't have a lot of time left for it to become completely disabling. On the other hand as it has been described the procedure will have two potential threats-allergic reaction to the dye and also radiation. I have had too much exposure already. I grew up at a time when fluroscoping feet to get the right pair of shoes was the norm. So over the years the exposure adds up especially when you factor in mammogaphy and dental x-rays for nearly every visit since I was 3. The risk that the doctor mentioned of having a spinal headache is disturbing too. He didn't tell me how frequently that happens or what can be done when it does happen, but that is not something I even want to think about. Since I have some kidney issues and because they don't help anyway I am not interested in anything that includes Tylenol such as oxycodone. I have had prescriptions for it in the past and it doesn't do much . I just want the one med I know works. Since there is absolutely no chance of becoming hooked as I would need just a few tablets to ease my severe pain 2X annually there is no real reason for denial. I am not a person who has ever had addictions. I just need to ease my pain without a risky procedure.

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@krisjb1 Your pain sounds awful and so does your frustration with the doctors you’ve seen. Have you been to a pain management clinic? Check with the hospitals in your area to find out if they have one.
Can you think of one thing that would get you to try the medication? What is it?

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 11 9:52pm
In reply to @janetsmith "Amen, and you are not alone." + (show)
@janetsmith

Amen, and you are not alone.

Jump to this post

@janetsmith Welcome to Mayo Clinic Connect! I’m glad you found this autoimmune support
Group. I’m sure you’ll find lots of support here!
Can I ask how you found Connect?

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marye2 | @marye2 | Mar 12 12:45am
In reply to @dloos "Thanks for your comments. I am on my 7th ENT. He is suggesting balloon inflation of..." + (show)
@dloos

Thanks for your comments.
I am on my 7th ENT. He is suggesting balloon inflation of Eustachian tubes. I will try it as it seems low risk with a fairly high success rate.

I also use Systane and Pataday for my eyes. I have seen Optometrist, Ophthalmologist and Retinologist about my eyes. They don’t find anything amiss, but my eyes seem foggy and dry all the time.
I use some overnight lozenges for my dry mouth, and I use Xlear spray for dry nasal passages. I have been tested three times for Sjogrens, and it is always negative.

I went to PT for eight weeks for Vestibular therapy, and it made no difference. I was fitted with a TMJ mouthpiece. It made no difference.
As you can tell it is not for lack of trying that I have had no answers or improvement.
I keep hoping at some point we’ll hit on something to give relief.

Jump to this post

I have MCTD, an overlap disease. I end up chasing the symptoms rather than the diagnosis.

I use the Systane ointment at night and a eyemask at night helps a lot. I have a cpap machine and so the eye mask doesn't really help. Xiidra was prescribed, but it really stings, so I use it at night along with another drop of Systane. Husband has Refresh. Foggy and dry eyes are also affected by general hydration--still lots of days my mind tells me I am sleepy due to the blurr.

The Oral B Dry Mouth is good for about 3-4 hours. But, I have the gum and hard candies in my purse. I brush 2X day with electric toothbrush: my teeth were cracking and gums were acting up until I started doing this.

TMJ stretches: https://www.youtube.com/watch?v=Vrz25x3qnTY Cool Pack or heat helps and I massage the cheeks to keep the salivary glands/eustachian tubes clear--lemon drops help keep them all functioning. If you are ever in severe pain, get to the PCP as infections are a horrid experience. Take care.

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1 reply
krisjb1 | @krisjb1 | Mar 12 6:33am
In reply to @becsbuddy "@krisjb1 Your pain sounds awful and so does your frustration with the doctors you’ve seen. Have..." + (show)
@becsbuddy

@krisjb1 Your pain sounds awful and so does your frustration with the doctors you’ve seen. Have you been to a pain management clinic? Check with the hospitals in your area to find out if they have one.
Can you think of one thing that would get you to try the medication? What is it?

Jump to this post

Medication is not being offered at the pain management office although I have previously used oxycodone to no avail. Epidural type injection in my neck with fluroscopy guidance and injected dye is suggested. I am not presently interested- not only because of the risk involved but also because there is no guarantee of pain relief for my headaches or for the annoying shoulder tingling caused by the compressed nerves. It would probably make my neck feel better, I'd guess. I deal with the neck pain with heated neck wraps and some traction which is helpful.

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1 reply
dloos | @dloos | Mar 12 10:55am
In reply to @marye2 "I have MCTD, an overlap disease. I end up chasing the symptoms rather than the diagnosis...." + (show)
@marye2

I have MCTD, an overlap disease. I end up chasing the symptoms rather than the diagnosis.

I use the Systane ointment at night and a eyemask at night helps a lot. I have a cpap machine and so the eye mask doesn't really help. Xiidra was prescribed, but it really stings, so I use it at night along with another drop of Systane. Husband has Refresh. Foggy and dry eyes are also affected by general hydration--still lots of days my mind tells me I am sleepy due to the blurr.

The Oral B Dry Mouth is good for about 3-4 hours. But, I have the gum and hard candies in my purse. I brush 2X day with electric toothbrush: my teeth were cracking and gums were acting up until I started doing this.

TMJ stretches: https://www.youtube.com/watch?v=Vrz25x3qnTY Cool Pack or heat helps and I massage the cheeks to keep the salivary glands/eustachian tubes clear--lemon drops help keep them all functioning. If you are ever in severe pain, get to the PCP as infections are a horrid experience. Take care.

Jump to this post

Thanks again for suggestions.
I use Xylimelts dry mouth stick on melts for night-time dryness. They get me through the night. If you have not tried already, you might find them more lasting.

Yes, oral hygiene is so important when dealing with this dryness.
Good luck to you❤️

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 15 7:46pm

@cwitton1 @dlydailyhope @larak @jkm54 @pfbacon. @gigi4 and everyone on this discussion: You all might like this upcoming discussion on medical gaslighting! It’s by the Autoimmune Assoc. You will need to join the Assoc to get access to the questions and answers.
https://www.inspire.com/resources/mental-health/how-have-you-been-affected-by-medical-gaslighting/
It’s a great opportunity!
What questions on gaslighting would you like to ask or hear answered?

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