To all sarcoidosis sufferers: I'm a doctor myself and was diagnosed with severe stage 2 pulmonary sarcoidosis with lymf glands in my chest the size of ping pong and tennis balls after months of going down hill without knowing why. This was one year ago today. Had severe fatigue, brain fog, could not walk up two flights of stairs without being totally out of breath. I have been on steroids ever since but am now on the lowest dose and about to stop. Today, I do sports again, have mental clarity, my shortness of breath is not noticable anymore in every day life, my chest pain is gone and I feel like a new person again. I can do my job again (hand surgeon) and have a wife and two kids. These are the things that made the biggest difference aside from the steroids (and which frankly will allow me to stop the steroids and hopefully keep it that way): - nutrition is everything: i saw a doctor specialised in nutritional sensitivities and deficiencies and got full blood and stool workup. Quit gluten and dairy completely , ate (and still eat) big amounts of (organic) fruits and veggies and a lot of fatty fish and meats. I quit all inflammatory foods (everything processed, fried....). I had irritable bowel for years, completely dissappeared. Also, no alcohol. I still eat this way to this day. - As soon as this started paying off (after about two months), I started an exercise program and can now play about half an hour of tennis, which is a massive difference compared to where I started. I have no more issues with activities of daily life. Whatever you do, be it walking 5 minutes per day and going from there, keep doing it. - Stress control: took some trial and error, but now I am a big fan of hot baths with epsom salts, deeply relaxing. Also meditation or guided self hypnosis from time to time. Lastly I like the Wim Hof method breathing with a cold shower afterwards. - Remove airway pollutants from your home: if you have a mold problem, definitely get it fixed. Read up on and take measures against dust mites. Make sure you get fresh air in your house every day or have a proper ventilation system. - Finally, do not socially isolate yourself, instead you will need your friends and family more than ever. Engage in (fun) social activities, it's proven to also greatly reduce stress and will give you the support you need. I stopped working for two months at the start, but believe me it took more than six months to figure this all out and implement it bit by bit. If I can do it, so can you. This is not medical advice from me as a doctor, but my experience as a sarcoidosis patient.
Hello Mr.Hall why can't Oxygen Providers Service Sarcoidosis patients with a portable oxygen concentrator goes higher than 5 liters. Why Not the portable oxygen concentrator that goes to 6 liters? There are different models that are out there But the ones that the Oxygen Provider have in service for their lung patients to use ALWAYS goes up to 3-5 liters. Every Lung patient are Not the SAME especially Sarcoidosis. Some might Require 6 liter on a pulse out put. I have been experiencing this Problem. For the 3-5 liters patients have to be put on a wait list. No 6 liter models offered. Why? It would be very helpful if someone could make sure that the Oxygen Providers with Patients that has Sarcoidosis have the Option to Rent a 6 liter portable oxygen concentrator. Thanks
To all sarcoidosis sufferers: I'm a doctor myself and was diagnosed with severe stage 2 pulmonary sarcoidosis with lymf glands in my chest the size of ping pong and tennis balls after months of going down hill without knowing why. This was one year ago today. Had severe fatigue, brain fog, could not walk up two flights of stairs without being totally out of breath. I have been on steroids ever since but am now on the lowest dose and about to stop. Today, I do sports again, have mental clarity, my shortness of breath is not noticable anymore in every day life, my chest pain is gone and I feel like a new person again. I can do my job again (hand surgeon) and have a wife and two kids.
These are the things that made the biggest difference aside from the steroids (and which frankly will allow me to stop the steroids and hopefully keep it that way):
- nutrition is everything: i saw a doctor specialised in nutritional sensitivities and deficiencies and got full blood and stool workup. Quit gluten and dairy completely , ate (and still eat) big amounts of (organic) fruits and veggies and a lot of fatty fish and meats. I quit all inflammatory foods (everything processed, fried....). I had irritable bowel for years, completely dissappeared. Also, no alcohol. I still eat this way to this day.
- As soon as this started paying off (after about two months), I started an exercise program and can now play about half an hour of tennis, which is a massive difference compared to where I started. I have no more issues with activities of daily life. Whatever you do, be it walking 5 minutes per day and going from there, keep doing it.
- Stress control: took some trial and error, but now I am a big fan of hot baths with epsom salts, deeply relaxing. Also meditation or guided self hypnosis from time to time. Lastly I like the Wim Hof method breathing with a cold shower afterwards.
- Remove airway pollutants from your home: if you have a mold problem, definitely get it fixed. Read up on and take measures against dust mites. Make sure you get fresh air in your house every day or have a proper ventilation system.
- Finally, do not socially isolate yourself, instead you will need your friends and family more than ever. Engage in (fun) social activities, it's proven to also greatly reduce stress and will give you the support you need.
I stopped working for two months at the start, but believe me it took more than six months to figure this all out and implement it bit by bit. If I can do it, so can you.
This is not medical advice from me as a doctor, but my experience as a sarcoidosis patient.
Can you help with feeling so Fatigue?
Why hasn't it been More Research for Sarcoidosis?
Cause the government doesn’t really care about people or their health.
Hello Mr.Hall why can't Oxygen Providers Service Sarcoidosis patients with a portable oxygen concentrator goes higher than 5 liters. Why Not the portable oxygen concentrator that goes to 6 liters? There are different models that are out there
But the ones that the Oxygen Provider have in service for their lung patients to use ALWAYS goes up to 3-5 liters. Every Lung patient are Not the SAME especially Sarcoidosis. Some might Require 6 liter on a pulse out put. I have been experiencing this Problem. For the 3-5 liters patients have to be put on a wait list. No 6 liter models offered. Why? It would be very helpful if someone could make sure that the Oxygen Providers with Patients that has Sarcoidosis have the Option to Rent a 6 liter portable oxygen concentrator. Thanks
Why can't they bring the Physical therapy to the Patient home?
Running is Definitely OUT for Me