Difficulties during Pandemic

[JameDiagonal]

Hi Guys!

I'm doing my research and I would like to know what are the challenges you are facing right now knowing that pandemic is on going and you have a current illness? Excited to hear your stories.

 

[jaminhealth]

It's truly baffling about this forum, so many views here and NO replys....what gives?

My issue is not ME and probably FM and advancing OA and just getting around with my walker. Now I'm working on getting someone to come in to do some light housework...that's a challenge for me.

 

[jaminhealth]

Looks like this Poll was done:

The Coronavirus Vaccine Side Effects Poll for ME/CFS and Fibromyalgia - Health Rising

People with chronic fatigue syndrome and fibromyalgia report how they fared taking the Pfizer, Moderna or AstraZeneca coronavirus vaccines.

www.healthrising.org

 

[JES]

The pandemic hasn't changed my life much, actually made it a little easier in some ways. I can work remotely from home without needing an excuse, all meetings are remote, can do the shopping etc. online as well. Since I couldn't travel much before it started, travel restrictions have made no difference for me. I understand that other people are suffering, so I hope for the worst of it to end, but many practices that came with the pandemic like remote working has made my personal life easier.

 

[Dom]

Well I had a bad reaction for 2 weeks to the az vaccine, but at the end of two weeks it fully resolved.

My life isn't that different either. In fact it's no different. I guess I'm just glad my baseline hasn't slipped. But since I had EBV in 2020 my crashes bring on acute ebv symptoms as well, which is an entirely new thing. However based on how I felt when I first got sick I am hoping that these ebv symptoms will disappear in about 2 or 3 years. But that's a long time to go, so I continue to try different treatments.

Currently looking into Nimotop after reading Dr Orr's book Beating Chronic Fatigue.

https://www.amazon.co.uk/gp/product/B0043VDIJW/ref=ppx_yo_dt_b_d_asin_title_o00?ie=UTF8&psc=1

Cort's write up: https://www.healthrising.org/blog/2019/06/10/nimodipine-beating-chronic-fatigue-guide-downing-orr/

 

[JameDiagonal]

It's truly baffling about this forum, so many views here and NO replys....what gives?

My issue is not ME and probably FM and advancing OA and just getting around with my walker. Now I'm working on getting someone to come in to do some light housework...that's a challenge for me.

Thanks for the reply. But my apologies, I am bad with acronyms...what do FM and OA stand for? Bear with me .

Thanks for the link you have shared. I am just wondering, at the onset of the vaccination roll-out, did they have clinical trials with the different sicknesses? What is the goal of the poll? Is it to verify the by-the-book effects of these vaccines?

 

[JameDiagonal]

The pandemic hasn't changed my life much, actually made it a little easier in some ways. I can work remotely from home without needing an excuse, all meetings are remote, can do the shopping etc. online as well. Since I couldn't travel much before it started, travel restrictions have made no difference for me. I understand that other people are suffering, so I hope for the worst of it to end, but many practices that came with the pandemic like remote working has made my personal life easier.

I do the same, I have been working from home before the pandemic started. I have adjusted to a few changes and nothing much. Working remotely is an advantage, somehow.

Since I am having my research, I wanted to take into account those who are having difficulties or challenges vis-a-vis with their present sicknesses and with this pandemic.

 

[jaminhealth]

FM is Fibromyalgia
OA is Osteoarthritis

 

[Kerfuffle]

Hi Guys!

I'm doing my research and I would like to know what are the challenges you are facing right now knowing that pandemic is on going and you have a current illness? Excited to hear your stories.

My grandmother just died a couple of weeks ago, and she battled cancer during the pandemic. During her confinement, my mom was with her, and Covid protocols are really tight, so we could not visit. It was an adamant one. We found out about my grandma's health condition in 2019 and got into major confinement due to a breathing problem in November 2020. Still, it hurts...;(

 

[JameDiagonal]

My grandmother just died a couple of weeks ago, and she battled cancer during the pandemic. During her confinement, my mom was with her, and Covid protocols are really tight, so we could not visit. It was an adamant one. We found out about my grandma's health condition in 2019 and got into major confinement due to a breathing problem in November 2020. Still, it hurts...;(

Aww sending my condolence. I know its really hard, not to be able to see and say goodbye for the last time to our loved ones. Did your family had counselling? Have you tried one?

 

[SarahTee]

Well I had a bad reaction for 2 weeks to the az vaccine, but at the end of two weeks it fully resolved.

My life isn't that different either. In fact it's no different. I guess I'm just glad my baseline hasn't slipped. But since I had EBV in 2020 my crashes bring on acute ebv symptoms as well, which is an entirely new thing. However based on how I felt when I first got sick I am hoping that these ebv symptoms will disappear in about 2 or 3 years. But that's a long time to go, so I continue to try different treatments.

Currently looking into Nimotop after reading Dr Orr's book Beating Chronic Fatigue.

https://www.amazon.co.uk/gp/product/B0043VDIJW/ref=ppx_yo_dt_b_d_asin_title_o00?ie=UTF8&psc=1

Cort's write up: https://www.healthrising.org/blog/2019/06/10/nimodipine-beating-chronic-fatigue-guide-downing-orr/

Did you end up being able to try nimodipine? I have been reading about calcium-channel blockers (CCBs) and ACE inhibitors being used to restore cerebral blood flow in some dysautonomia patients by Dr Peter Novak. He uses the commonly available ones, i.e. those in everyday use for hypertension rather than brain haemorrhage. I wonder if these more-accessible CCBs and ACEIs could help some people with CFS too. Certainly easier to get a prescription, especially if you have hypertension. They do have side effects, but careful adjustment or use of two classes at a low dose in combination can help with this.