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Thought I had recovered- now what

AlwaysTired

Senior Member
Messages
174
I began getting better (from CFS) when I moved to Phoenix in August, and continued to improve in the coming months. By November my CFS began being replaced by anxiety, as my nervous system suddenly came back to life. The anxiety became unbearably severe as the fatigue disappeared, and I had so much nervous energy that I could only discharge it by hard exercise and activity. There were days I would work out hard at the gym then come home and labor in the garden under the hot sun, and still be ok a day or two later (and no fatigue, just normal tiredness if anything the following day).

I went on hikes, sometimes upwards of 3 hours, running on the trails for most of the time to get the ridiculous amount of nervous energy out and relax.

So, I was sure that the CFS was gone and done with, as I was now at the complete opposite of the spectrum. I did expect that I would end up with less superhuman energy as the anxiety got under control, which it finally has.

That brings me to the past week. I began volunteering at an animal shelter at the beginning on February, and was ok energy wise with that. Then last Friday, after a moderate work out (wasn't needing to push myself as hard since the nervous energy wasn't as severe) I spent 2.5 hours at the shelter and had to leave because I began to crash. It was very busy and I was running around doing a lot, including carrying large puppies back and forth.

Spent the rest of that day mostly in bed, was in bed all day the next day (last Saturday, exactly a week ago), then able to sit on couch and watch tv and such by Sunday.

By Monday I felt OK again but the anxiety was back, so I went for a strenuous hike that was very rocky and all uphill (well in one direction. Was downhill and hard on knees with lots of loose small gravel that made the way down nearly as challenging)

I've managed to do a few errands since (this past week) but have begun feeling a level of fatigue I haven't experienced for about a year now. I struggle just to sit on the couch and watch tv or even write in my journal. I was making plans to work again, but now that this has happened I'm worried and feeling like that simply won't be possible.

Obviously I triggered a relapse, but what I am questioning is whether this past 7 days activity (most notably the hike) was too much too soon, or if it's going to be too much ever. Is it possible this is just a setback or is it more likely that CFS is never really going away and I will have to limit my activities forever. That I'll never be able to return to work, even if it's part time and sedentary?

I know no one can tell me for sure, so I'm just looking for probabilities here, and experiences of others.

Although the trails I was running on were much more level than the one I hiked on Monday (which I walked the entire way...nearly impossible to run it) I thought it was the same level of activity.

Now I don't know what to do moving forward, especially w/r/t working again...
 

Cort

Phoenix Rising Founder
I began getting better (from CFS) when I moved to Phoenix in August, and continued to improve in the coming months. By November my CFS began being replaced by anxiety, as my nervous system suddenly came back to life. The anxiety became unbearably severe as the fatigue disappeared, and I had so much nervous energy that I could only discharge it by hard exercise and activity. There were days I would work out hard at the gym then come home and labor in the garden under the hot sun, and still be ok a day or two later (and no fatigue, just normal tiredness if anything the following day).

I went on hikes, sometimes upwards of 3 hours, running on the trails for most of the time to get the ridiculous amount of nervous energy out and relax.

So, I was sure that the CFS was gone and done with, as I was now at the complete opposite of the spectrum. I did expect that I would end up with less superhuman energy as the anxiety got under control, which it finally has.

That brings me to the past week. I began volunteering at an animal shelter at the beginning on February, and was ok energy wise with that. Then last Friday, after a moderate work out (wasn't needing to push myself as hard since the nervous energy wasn't as severe) I spent 2.5 hours at the shelter and had to leave because I began to crash. It was very busy and I was running around doing a lot, including carrying large puppies back and forth.

Spent the rest of that day mostly in bed, was in bed all day the next day (last Saturday, exactly a week ago), then able to sit on couch and watch tv and such by Sunday.

By Monday I felt OK again but the anxiety was back, so I went for a strenuous hike that was very rocky and all uphill (well in one direction. Was downhill and hard on knees with lots of loose small gravel that made the way down nearly as challenging)

I've managed to do a few errands since (this past week) but have begun feeling a level of fatigue I haven't experienced for about a year now. I struggle just to sit on the couch and watch tv or even write in my journal. I was making plans to work again, but now that this has happened I'm worried and feeling like that simply won't be possible.

Obviously I triggered a relapse, but what I am questioning is whether this past 7 days activity (most notably the hike) was too much too soon, or if it's going to be too much ever. Is it possible this is just a setback or is it more likely that CFS is never really going away and I will have to limit my activities forever. That I'll never be able to return to work, even if it's part time and sedentary?

I know no one can tell me for sure, so I'm just looking for probabilities here, and experiences of others.

Although the trails I was running on were much more level than the one I hiked on Monday (which I walked the entire way...nearly impossible to run it) I thought it was the same level of activity.

Now I don't know what to do moving forward, especially w/r/t working again...
I've never had ups and downs like that.

Was there anything you specifically did to get better?

I don't think it was the activity you did necessarily. It seems like you're on a pendulum and it began swinging back?

Are there any good ME/CFS pracititoners in Phoenix?
 

AlwaysTired

Senior Member
Messages
174
Rest and time were/have been the only things that helped. I visited Phoenix for stem cell therapy at the 2 year mark and noticed I felt better in this city, so I expected I would get better once I lived here, and that has proven to be true so far, as my recovery accelerated once I moved here (I was inching upward before, with a relapsing and remitting pattern but generally moving upward). I did start making lots of fresh fruit smoothies too, though I can't say for sure if they were part of the key to my improvement/recovery.

I don't know any CFS practitioners here, though just got a lead from someone on this forum who may be able to help. I am on Medicaid since I can't work, and that limits who I can see. No one will treat me for this long term though- specialists (rheum, infectious disease) acknowledge I have it but say there's not much to be done and that a GP is the one who would help me manage it. The GPs I've seen don't seem to be of much help (I have found more insight on these forums and my own research). This is part of the reason I can't get SSDI either.

Could you clarify what you mean by it just being the pendulum swinging back, rather than the physical activity?

I've never had ups and downs like that.

Was there anything you specifically did to get better?

I don't think it was the activity you did necessarily. It seems like you're on a pendulum and it began swinging back rather than being the physical activity?

Are there any good ME/CFS pracititoners in Phoenix?
 
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Seven7

Seven
Messages
3,444
Location
USA
Me personally think there is some of us relapsing remitting types, I get good periods where I could swear I have no CFS then comes back. Nothing I do differently, I do get remissions with other Viruses and I know that will get me into remissions, then other times were different things I tried. I am again in a kind of remission / relapsing in a same day type of situation going on. Very frustrating.
 

lafarfelue

Senior Member
Messages
433
Location
Australia
It does not sound healthy (experiencing such anxiety in the first place and how you're dealing with the anxiety), even for a non-ME/CFS person. (Example; a non-ME/CFS friend of mine over-exercised due to tension and anxiety, and they needed to figure out ways to find more balance because they were damaging their standard health considerably.)

Can you figure out if there's some kind of imbalance in your system that's causing such massive spikes in anxiety? In the same vein, do you see a psychologist/psychiatrist/counsellor for your anxiety? Or take any anti-anxiety medications? Or take any of the supplements ppl here advocate for anxiety?
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
When I first got sick I was sick for about a year. Then I started getting these uncomfortable bursts of energy--I just had to move, particularly my legs. I was living in a 9-story dormitory at that time, so I remember just running up and down the stairs over and over again to get rid of that energy. I don't remember having severe anxiety, but it's possible that I did have an increase in anxiety at that time.

Slowly the bursts of energy subsided and I just started feeling more normal. I wasn't back to 100%, but I'd say that I was at about 85% of my pre-illness energy level. I was able to attend college full time during the school year and work full time during the summer. And I stayed that way for about a year--I considered myself recovered.

After a year of almost-recovery I crashed again. I remember that nothing precipitated the crash. I just woke up one morning and I felt exhausted again. That was in the winter of 2007, and I've been sick ever since. I currently work half time (20 hours per week), and about 3/4 of that time is spent working from bed. So, like you, I have had periods of illness and recovery. I wish I knew what caused them, and what to expect in the future. All I can say is that this illness is always an adventure, and you never know what to expect!
 

AlwaysTired

Senior Member
Messages
174
It does not sound healthy (experiencing such anxiety in the first place and how you're dealing with the anxiety), even for a non-ME/CFS person. (Example; a non-ME/CFS friend of mine over-exercised due to tension and anxiety, and they needed to figure out ways to find more balance because they were damaging their standard health considerably.)

Can you figure out if there's some kind of imbalance in your system that's causing such massive spikes in anxiety? In the same vein, do you see a psychologist/psychiatrist/counsellor for your anxiety? Or take any anti-anxiety medications? Or take any of the supplements ppl here advocate for anxiety?

I have dealt with anxiety (and depression) most of my life. With CFS I didn't have enough energy to feel them, in fact was more positive than I've ever been in my life. Anyhow, I have taken medication for both for many years. When I emerged from CFS after almost 3 years, I found much to my dismay that my medication no longer worked.

I think also that suddenly going from having a massively desensitized nervous system back to my normal sensitive self, coupled with coming to terms with everything I had lost in my life due to this illness made for a perfect storm of terribleness. I turned to exercise because the anxiety was so severe it was threatening not only my health but my life- I couldn't eat and lost a bunch of weight, had diahrrea every day, was suicidal (I did have a plan), and of course all the cortisol that was being released into my body every day for months.

I did start seeing a psychiatrist again to find new meds as supplements werent even helping a little, but psych drugs take weeks (sometimes up to six) to even take effect and you usually have to try several, and play with doses (or in the case of the one I take now, slowly work up to therapeutic dose so you don't get a life threatening rash) meaning often months before something helps.

I began seeing a therapist again but that takes time too before you see improvement.

I was certain that it (the phyiscal damage from anxiety) would kick me back into CFS if I didn't resolve it ASAP, so I couldn't afford to wait who knows how long for psych meds that worked and for the therapy to start helping.

So I had to take matters into my own hands. I ordered CBD oil, which took the edge off, and given what severe anxiety was doing to my body and my mind exercise was a much healthier option and it went a long way in restoring my health (chronic diahrrea stopped, weight stablized, cortisol release came under control, etc...)

Literally it was so bad I would have done anything for relief (and was ready to even end my life in order to get it).

I remember now that I had that awful flu bug that's gone around this year (in the U.S.) just last month, which I think may have set the stage for this relapse
 

AlwaysTired

Senior Member
Messages
174
When I first got sick I was sick for about a year. Then I started getting these uncomfortable bursts of energy--I just had to move, particularly my legs. I was living in a 9-story dormitory at that time, so I remember just running up and down the stairs over and over again to get rid of that energy. I don't remember having severe anxiety, but it's possible that I did have an increase in anxiety at that time.

Slowly the bursts of energy subsided and I just started feeling more normal. I wasn't back to 100%, but I'd say that I was at about 85% of my pre-illness energy level. I was able to attend college full time during the school year and work full time during the summer. And I stayed that way for about a year--I considered myself recovered.

After a year of almost-recovery I crashed again. I remember that nothing precipitated the crash. I just woke up one morning and I felt exhausted again. That was in the winter of 2007, and I've been sick ever since. I currently work half time (20 hours per week), and about 3/4 of that time is spent working from bed. So, like you, I have had periods of illness and recovery. I wish I knew what caused them, and what to expect in the future. All I can say is that this illness is always an adventure, and you never know what to expect!

I think I'm ready for this adventure to end. What sort of work are you doing?
 

lafarfelue

Senior Member
Messages
433
Location
Australia
That sounds very difficult to deal with. What a rough time. :(

I can't relate to such very strong anxiety, but can sort of relate to dealing with everything 'coming back online' when feeling healthier. Part of my road to recovery (if there is one for me) is dealing with anxiety and its flow on effects damaging my health and life overall.

Is there any evidence that inflammation could be playing into your anxiety in any way... of the gut or of the brain? Have you tried anything (like Hip's supplements list) to help reduce inflammation that might help cause anxiety? Or things that help with others' 'tired but wired' experiences?

CBD is quite good for taking the edge off, helping to recalibrate the brain/body processes towards anxiety. I really wish we had access to it in Australia. :meh:

In terms of work, what kind of work could you tolerate? Such as a data entry one where you could work from home if and when you wanted/needed. That sort of thing could help with avoiding stressors (like that highly physical day you mentioned) and also help with letting you have necessary down time if/when going through relapse. (Might also help you to avoid too much contact with viruses going around! :confused:)
 

AlwaysTired

Senior Member
Messages
174
That sounds very difficult to deal with. What a rough time. :(

I can't relate to such very strong anxiety, but can sort of relate to dealing with everything 'coming back online' when feeling healthier. Part of my road to recovery (if there is one for me) is dealing with anxiety and its flow on effects damaging my health and life overall.

Is there any evidence that inflammation could be playing into your anxiety in any way... of the gut or of the brain? Have you tried anything (like Hip's supplements list) to help reduce inflammation that might help cause anxiety? Or things that help with others' 'tired but wired' experiences?

CBD is quite good for taking the edge off, helping to recalibrate the brain/body processes towards anxiety. I really wish we had access to it in Australia. :meh:

In terms of work, what kind of work could you tolerate? Such as a data entry one where you could work from home if and when you wanted/needed. That sort of thing could help with avoiding stressors (like that highly physical day you mentioned) and also help with letting you have necessary down time if/when going through relapse. (Might also help you to avoid too much contact with viruses going around! :confused:)

Well up until this relapse, I thought part time sedentary work would be doable, but in the state that I'm in right now, I can't even do that. It seems my health is just too unpredictable to commit to any kind of job. This definitely plays into my anxiety, as I can't get disability and therefore have no source of income.

I'm surprised CBD isn't available in Australia.

The only inflammation I can say I have with any certainty happens when my neck and shoulders tighten and stiffen up, which started happening 5 years ago. I actually had very little anxiety from 2013-2017 (until October), partly due to medication, CFS for latter two years and ideal life circumstances the former two
 

Hip

Senior Member
Messages
17,824
Thanks, I'll give it a try.

You can use that anti-anxiety protocol as and when you need it. NAG is the strongest anti-anxiety supplement in the protocol, and I found its effects kick in within an hour or two of taking it. Similarly for the turmeric and flaxseed oil. But if you only buy one supplement, then I'd go for NAG, as it has the strongest effect.
 

AlwaysTired

Senior Member
Messages
174
Anxiety or not, I'm losing hope (for the first time) that I can not only get but stay well enough to take care of myself and have any semblance of a life. It seems that even those who are symptom free and able to return to their lives for years relapse and end up incapacitated indefinitely. I don't want you all to lie to me, but I really need something to give me hope that this can be beaten...
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
I think I'm ready for this adventure to end. What sort of work are you doing?
I'm a special education teacher. Right now I teach Sunday school classes for students with special needs, which is exhausting. But for the rest of the week I do administrative work for my organization, plan curricula, and do all sorts of interesting projects from bed (including writing two books). It's hard on days when my brain isn't working very well, or my fingers are too tired to type, but I feel fortunate that I'm still able to do something I enjoy.

I don't know if full and permanent recovery is possible right now (thankfully medical science moves forward each day, albeit slowly, so hopefully it will eventually be possible). But I do know that it is possible to live a good and fulfilling life within the limits of this illness.
 
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