I am a singer. I have developed Sjogren's disease, which has significantly dried out my throat and my entire airway. I can't sing without cracking and it sounds awful. I'm super pitchy. My throat dries out so fast. I have tried throat spray. It doesn't last very long. I do sinus rinses daily. I haven't tried a steamer or a nebulizer yet. Any recommendations? I don't want to lose this part of my life.
Does anyone have personal experience taking estrogen during perimenopause to try to help ME symptoms? I know most health problems get worse during perimenopause. I'm in my mid-40s and in moderate-severe ME. I also have MCAS, POTS, 4 autoimmune disorders, and chronic migraines. I'm wondering if I should be on estrogen to see if that helps the ME at all, but I have been told that being on estrogen can make MCAS worse. I already take progesterone. I was on estrogen for a while, and my mood and periods were a lot better, but migraines were worse.
This was in a pretty extreme flareup of Sjogren's, which can cause migraines, and insurance kept denying my migraine meds so I had no meds. It's hard to say what was causing what. I went off the estrogen to err on the side of caution. Wondering if I should try to go back on it. I have fairly good migraine control now with meds, so I could try estrogen again and see what happens.
If you have ME and MCAS and are taking estrogen, have you noticed any obvious changes? Better, worse? Do you think estrogen ever flared up your MCAS?
If you are on HRT and have ME, did it help at all?
Thank you!
Aloha, I'm relocating to Hawaii Island later this year from Maui. I'll be in Waimea/Honokaa area. Any good PCP or specialist recommendations? Or, advice on who to avoid? It's been rough on Maui. Very limited services. Is it any better on HI, or do you have to go to Oahu for specialists? Mahalo.
I am undiagnosed due to not being able to find a doctor in my state, but I meet the criteria for either hEDS or HSD (I have enough positive Beighton's signs) and have several of the accompanying illnesses- POTS, MCAS, multiple autoimmune disorders, complex chronic illness, etc.
The weird thing is that I'm the only person in my family who is hypermobile. There are autoimmune disorders and other chronic illness, but nobody is anywhere near as sick as me. Nobody else has POTS (although I got that after Lyme, and MCAS after black mold). I used to show off my hypermobility with tricks as a child but nobody else could do what I could do. I only have half-siblings, so maybe I got some weird genes that nobody else in the family got.
Has anyone seen this before? Or was I switched at birth?
Unfortunately the only way to get diagnosed would be to move to another state, which I'm not going to do. So it's a mystery for now.
TL/DR: medical neglect due to having ME/CFS
Do you ever just get worn down by gaslighting medical doctors? I know we've all dealt with it. I've been sick since 2009. I've dealt with it A LOT. I was going through my medical records recently and saw that my new PCP, who I've had for about a year, wrote in my chart that he didn't think any of my problems were real, and said I have a "hypochondriacal condition with alleged disability."
I have moderate-severe ME/CFS, POTS, 4 autoimmune disorders, chronic migraines, and about 30-40 other diagnosed things in my chart, which I guess he never bothered to read. I had already won my Social Security disability case and been diagnosed with a serious illness the year before. I have several illnesses that come with positive test results and can't be faked.
I was showing textbook signs of type 1 diabetes earlier this year. I told my PCP my symptoms and asked if he would test me for diabetes. I told him my mom was type 1 and that I came from a family of diabetics. He refused to test me.
I went to another doctor, told her what was going on, and she ran the tests for type 1 diabetes. It was positive. She told me that the official recommendations for doctors are that if there's a relative with type 1 diabetes, they're supposed to test everyone in the family so they don't end up dead or in the hospital. I think my PCP didn't test me because he thinks I'm a hypochondriac.
I asked him if he would be willing to sign some paperwork to help me get my student loans discharged under the total and permanent disability discharge. My former PCP and I already did this, but the Dept of Education lost my paperwork.
My current PCP said he wouldn't do the paperwork because I would actually need to be disabled. I told him that I was on social security and he was shocked. He wanted to know why the judge made that decision and demanded to see paperwork from the judge. I listed off several of the more serious and disabling conditions I have, all of which are in my chart, and he was just stone faced and silent and said he wasn't going to be able to help me.
He has a reputation for being one of the better doctors in my area. "He was at Harvard for years" everybody said. "Choose him, he's such a good doctor with so much experience."
Where does the hypochondriac part fit when there are positive test results? Why would a doctor continue to ignore positive results and stick with the "malingerer" diagnosis?
I think it's medical discrimination due to having ME/CFS. I was told by a neurologist in my area two years ago that ME/CFS is not a real illness. I said, "the CDC says it's real," and he just grumbled about the CDC. He refused to help me (for a different condition than ME) and told me there would not be a follow up.
Having ME/CFS can affect whether or not you get necessary medical care for other, potentially life-threatening illnesses. I'll never be taken seriously by some doctors as long as I have ME/CFS. They should know better by now. If ME/CFS were a psychiatric illness, it would be in the DSM-5. It is not.
I feel defeated by the system. I'm permanently disabled because I didn't get the help I needed at the onset of my illnesses. I had very real physical symptoms for years and was told it just "anxiety and depression." Fainting is a clear sign of depression, right? Must be hysteria.
I am going to look for a new PCP. I don't know whether to recommend to people with complex chronic illness to read your chart notes or not. I guess it's better to know in case you need to fire your doctor, but it's pretty depressing to see that stuff. I don't understand how our medical system is as toxic as it is.
Feel free to share your gaslighting experiences below.
Aloha,
I'm thinking of relocating to Waimea/Kohala area from Maui. How easy is it to find housing in the area? Looks like it might be pretty tight. I was also wondering about vog. I was originally thinking to move to Kona for more community and resources in general, but then realized the vog is bad there. I have trouble on bad vog days here. But it's not that often. Also, how bad is the mold in the area? Waimea dry side vs Honokaa? I am avoiding Hilo for this reason.
I grew up with horses, lived on farms, and used to be in a country two-step band so I thought Waimea might be a good fit. I like small towns. Would love to get back into music again. And working with horses. Just wondering how realistic it would be to move there and meet people (I'm in my 40s). And overall what it's like living there, cost of living, culture. Any advice appreciated! Thank you!
I have chronic migraines. I'm at the point of taking Nurtec nearly every day, or up to the 18 times per 30 day limit. When I'm doing better, I might get down to taking it twice a week. Usually it's every other day.
Because of this, my doctor wants to put me on Emgality. He tried me on Qulipta but I had to stop due to side effects. The side effects were mainly depression, not wanting to get out of bed or talk to anyone. I had nightmares and disturbing intrusive thoughts. I was really sleepy and just wanted to sleep all day. The migraine control was excellent. I was only on it for 10 days. I went off of it because of the mood disturbance. I have had mental health crises caused by more than one medication. I am highly sensitive to meds and they can alter my brain chemistry in unusual ways.
I am concerned that Emgality would cause mood issues and I wouldn't be able to stop it, if it lasts for a month after injection. Every time I have had a mental health issue caused by a med in the past, I've been fine within a week after stopping it. I'm thinking I wouldn't have that option in this case. I also have POTS and I read that Emgality can cause high heart rate.
I don't have any noticeable side effects on Nurtec. I probably am taking it more than is healthy, although I'm staying within the recommended limit. I'm thinking I should probably just stay on that one.
What has your experience been with side effects from Emgality or other CGRP drugs?