Basic Stuff
- Name: Megan
- Country: United States
- State: New Jersey
- City: Randolph
- Gender: Female
- Age: 45
- Education: Masters Degree
- Primary Illness: Fibromyalgia
- Diagnosis:
- Chronic Fatigue Syndrome (ME/CFS)
- Fibromyalgia (FM)
- Postural Orthostatic Tachcycardia Syndrome (POTS)
- Irritable bowel syndrome
- Migraine
- Mast Cell Activation Syndrome (MCAS)
- Long COVID
- Year Illness Began: 2003
- Pursuing a bachelor’s degree in the United States when illness began: Yes
- Year of college when illness began:
Functioning Interrupted
Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 40
(Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day, but requires rest periods.)
Work Interrupted
- Former Occupation: Day care worker
- Years of Work Lost: 6
- Current Work Status: On disability
Income Interrupted
-
Minimum Current Annual Income Loss:
$63,864
- Total Projected Economic Losses For Years Not Worked:
$351,470
Other Interruptions
Certified Disabled: Yes
Finances:
- My parents or other family members have provided financial support
- This illness has severely impacted my ability to financially prepare for retirement
Work:
- I reduced my work hours
- I left my job or retired early
Housing:
- I had to move back into my parent’s house
Relationships:
- I have been unable to or found it very difficult to date
- I believe this illness contributed significantly to a divorce or loss of an important relationship
Most Impactful Loss
Losing out on having a family of my own, my own place, missing out on having fun in my 20s and 30s
My Story
https://tinyurl.com/mpabrct7 My blog on my chronic illness story and topics we all go through feel free to read and join if you’d like to.
Hi, just wondering where you went to get diagnosed on all those things? That’s half the battle and so hard to find doctors who recognize these things and treat them. I’m in OK and I can’t find a Dr near me who is literate in these illnesses. Please let me know! Thanks!
Hi, Kim – Health Rising will soon have a “doctors map” where patients can review doctors and hopefully you can find one near you.
I’ll tell you as much as I can. Fibro I was diagnosed at summit health in Millburn NJ 2003 I was very lucky. My pcp at the time suspected I had it and I had also just been at the hospital for special surgery for my knee in nyc which is the top rheumatologist hospital they suggested I be evaluated for fibromyalgia. My original Dr just happened to want to specialize in fibromyalgia patients. He moved to Albany I followed him he helped me however I would not send anyone there now. A few years later I developed cfs and went to the now closed fibromyalgia and fatigue centers in king of Prussia pa led by dr Jacob teitelbaum. I found it by googling online. I also was in a lot of groups online at that time. They closed a year after I began and reopened as Holtorf medical under Dr G he has since passed away but he was an amazing Dr. my parents could no longer afford out of pocket. As these two places took no insurance. I was lucky my parents helped me get to those places as I learned a lot. However after leaving there in 2012, not one Dr would help me stay on all the individualized treatments. Now I have many drs and still can’t get the alternative treatment that helps me.If I had been able to I wonder if I would have gotten so ill again. I was in somewhat of a remission until long covid from the vaccine in 2021.
One thing I can tell you is I research, research and research more. Your diagnoses, symptoms, what meds are they using. For the past 13 years that’s all I’ve done. I also don’t go to a doctor if they give me an indication they can’t help me or won’t. If that means I have to look more I will. Know that this has taken a mental toll on me having to seek all the answers but I’ll tell you you are your own best advocate. I searched for 3 years to find a Dr who would see covid vaccine injured patients. I saw an article in science magazine about long covid and they had a quote from a Dr in nyc. I googled him and called his office to make an appt. He runs the long covid clinic. I had to wait 8 months to see him but it’s the first validation I got. I was then diagnosed with POTS and reactivated ME/CFS and mast cell. Google hospitals in your area, go on us news and world report they rank each states hospitals and then by speciality. Google your condition and specialty center. Check on different websites where they may have directories. It might take awhile but you will come upon someone. Don’t give up!
Thanks so much for your thorough reply, I know that takes a lot of time and energy!
I just learned about a doctor named Dr Pierre Kory who has been helping a lot of people. I know I can’t afford to see him for treatment but if he will just put some diagnoses down on paper for me that would help me maybe get disability and Medicaid. I’m not sure though. I’m waiting to hear back from his office. My brain is so messed up trying to handle all these things is such a struggle. My heart goes out to you for having to deal with these horrible diseases so long. Have you been tested for tick-borne illnesses by a good Dr who uses the correct testing? The standard hospital/medical center testing and the way they are read usually does not show anything so you have to go to the right place. You may have underlying stealth infections that are keeping you broken.
Dr Steven Phillips(wrote the book “Chronic”) went through all this himself and has helped a lot of chronically ill patients. He understands the testing limitations as well. Many people who were mysteriously ill actually got better with his pulsed antibiotics therapy(and some natural things) even though they didn’t know they needed it. It just turned out all their problems were hidden infections the main medical establishment missed. It’s very possible you have viruses/bacteria too that keep your immune system broken. Just a thought worth looking into if you haven’t already!
Your welcome I always try to tell anyone as much as I can as I was diagnosed with fibromyalgia before it was a common condition and you constantly had to prove yourself. I was lucky to have been in the right place and got diagnosed when my symptoms are progressing.
Thank you and my heart goes out to you as well. I was treated for Lyme in 2009, I never tested positive but the alternative dr I was seeing used a different test and said any patient with a high result has always had Lyme with it. I was treated for 3 months. I couldn’t afford the igenex testing. The standard Lyme test isn’t accurate. I tested positive for a coinfection 10 years ago but they wouldn’t treat me. I have so much going on cause of the long covid I have no idea what is causing my symptoms now. When I was diagnosed with CFS in 2009 I had multiple viruses and took antiviral for a year. The long covid Dr tested me for everything and said I have no signs of active viral activity. They took about 50 blood tests. I find it hard to believe but it is what it is. Thank you for mentioning that. The vaccine has deregulated my immune system in some way.
Have you tried Low Dose Naltrexone? I had really bad symptoms for several years, crashed for 5-6 hours in bed after only working for 3 hours doing basic work at my part time job. Started LDN this year and it helped a lot. I work twice as many hours now and don’t feel as tired though I’m still not 100%
Yes I have twice first in 2012 and again in about 2014 or so. I am on pain meds so they debate whether it helps people on them but it’s such a low dose they think it probably doesn’t. But I did not see much of a difference. Hoaxer that was when I had only fibro and CFS. Now I have long covid and RA plus those conditions and mast cell. It may be worth giving it another try as it modulates the immune system.
Thank you for bringing that up for me when I see my long covid dr I think I will ask her about it!