DaBro 2 years, not 2 weeks Pfizer, but finally healed

[DaBro]

Agree completely on the spreadsheet. I found it invaluable to track long term trends because the nature of WD is so variable day to day. In particular on a bad day I was able to go back to the spreadsheet and remember good days and remind myself that I was improving. It would be so easy to panic on bad days otherwise and think about changing things like supplements, when what our body needs is stability and our minds need calm. 
 

I think I kept mine going for 18 months and stopped when my highest ‘bad ‘ score was 5 or 6 out of 10. 

[Farm24]

3 hours ago, DaBro said:

Time for my 6 year update. I’d definitely call this time period the long tail in recovery!

 

So first the good stuff. No sick days from work and generally more energy than previously. I don’t need to use the weekend to rest and recover…though I do need to manage my energy. More energy and spirit for family. Back to normal old me much of the time. 
 

it’s worth clarifying that I think I’m dealing with recovery from both CFS and SSRI’s (which I went on because of the CFS). 
 

main ongoing symptoms are:

 

TD which I’m sure is from SSRI’s. Typically I’m getting facial twitches when I wake up and the odd leg kick when I get into bed. Both are normally 10 mins or less. 

 

Tension headaches and pressure behind my eye which is probably more related to CFS recovery than SSRI but could be both. 
 

wired with insomnia if I overdo things. Overstimulated. Vagus nerve not quite working properly to calm things down yet. Showers, walks, reading, humming and neck massage help. 
 

occasional head fog and difficulty concentrating. Only had this 3 or 4 times all year thankfully. 
 

Overall things are on the up still. As long as I am careful with my energy I can do most things. I’m still on Magnesium Glycinate and  Vit B12 and E. The symptoms are perhaps more painful but less debilitating generally. Definitely less frequent. I know they pass and I can function through them. 
 

wishing you strength in your recovery journeys. 

Have you had TD this entire time?

[DaBro]

Yes, but reducing in intensity and frequency. It seems to be one of the last symptoms to go. 

[SouthernMan]

3 hours ago, DaBro said:

Yes, but reducing in intensity and frequency. It seems to be one of the last symptoms to go. 

Are you referring to like muscle twitches all over the body? 

[DaBro]

For me I get a face palsy and tightening of my neck and lips and legs shake/kick uncontrollably. 

[George969]

Thanks for sharing this @DaBro! I am 25 months off after a fast zoloft taper and still mostly living in waves or neutral days (rarely a good one) I understand you really turned a corner between 24 and 30 months off? 
 

also, are you able to train with weights? I miss my heavy weights workouts instead of the warm-ups I am doing now…

[DaBro]

35 minutes ago, George969 said:

Thanks for sharing this @DaBro! I am 25 months off after a fast zoloft taper and still mostly living in waves or neutral days (rarely a good one) I understand you really turned a corner between 24 and 30 months off? 
 

also, are you able to train with weights? I miss my heavy weights workouts instead of the warm-ups I am doing now…

I’d say I turned the corner when I was able to function and work around the limitations and waves. Before that I was barely able to function. 
 

still get bad days but I’ve been in the Gym for the last 3.5 years, so from 30 months after my CT as I’m 6 years out now. I do sometimes have to go light or skip sessions if I’m in a wave but I make around 80% of sessions. 
 

Hope you get a break soon. 

[Farm24]

50 minutes ago, DaBro said:

I’d say I turned the corner when I was able to function and work around the limitations and waves. Before that I was barely able to function. 
 

still get bad days but I’ve been in the Gym for the last 3.5 years, so from 30 months after my CT as I’m 6 years out now. I do sometimes have to go light or skip sessions if I’m in a wave but I make around 80% of sessions. 
 

Hope you get a break soon. 

Man. You are still having waves?  That is so disheartening 

[DaBro]

Don’t be disheartened. They are more like bad headaches or having a cold.They pass. Nothing like the first 2 years when waves were completely debilitating with a plethora of side effects and symptoms. I do most of what I want when I want. 

[LukeUK]

Do you think that the waves are withdrawal related, or CFS related?

 

It's pretty common that CFS recovery is non-linear (if you recover), and it is also pretty common that rough patches or malaise manifests as cold symptoms or headaches with CFS.

 

You know your body better than anyone on an internet forum can, but I'd suggest that as you had CFS pre-drug and have stated that you think you were recovering from both, it's not unlikely that issues like this are CFS-related. Certainly I think others who did not have CFS should not assume that they'll be getting cold-like symptoms many years out.

 

I'm glad that you're mostly living life.

[DaBro]

I don’t know and I can’t find out, but I suspect the symptoms I am still experiencing are more likely to be CFS related. Good question to clarify things. 

[LukeUK]

I think it's important for others not to get disheartened.

 

I have known people who have recovered from CFS, I hope your health continues to improve!

[JLR96]

Hey, I just wanted to ask, do you still deal with nerve pain, numbness and tingling and tremor issues this far out? Just trying to gauge what's realistic in terms of full recovery for me. I myself still deal with tingling sensations, nerve pain, aches, and I still have drug induced tremors 15 months off. I've seen a lot of improvement in symptoms but I'm also ready to accept that maybe some of these issues could in fact be permanent issues going forward.