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Really scared - when will there be an effective treatment?

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
That helps most people regain functionality? Honestly

Thought this was normal post viral fatigue but it's getting worse

My story: http://forums.phoenixrising.me/index.php?threads/prolonged-post-viral-fatigue-or-cfs.48993/

Was walking, talking, watching movies. Now bed/couch bound 99% of the time

Everything I read seems so bleak

Do I have hope to get better? Should I try a Dr Goldstein treatment like nitroglycerin or Equilibriant to try to stop the progression before it gets worse? Should I find a ketamine injection clinic? So depressed but worried about damage from antidepressants

Scheduled to see Chia in May, should I Skype with Dr Enlander in the meantime?

Please help
 

caledonia

Senior Member
It's possible you're experiencing a set back from the walking. 1+ miles a day is a lot if you're in some kind of fatigue state.

I agree with the others on doing aggressive resting.

The vast majority of people with postviral fatigue recover, so even if it's taking a long time, the odds are in your favor. So my suggestion would be to hang onto the thought that you're going to be one of the ones who do recover.

I think the main things to work on now would be getting good sleep and alleviating your anxiety and depression.

My suggestion would be to start with gentler non-aggressive interventions first - just in case you do have ME/CFS it's easy to make yourself worse because you may be sensitive to meds and supplements. Then if those don't help, try something stronger, but try a low dose first to test your reaction. Then if it's tolerated, you can try increasing the dose.

So my overall suggestion would be magnesium which is calming, and may help with sleep and anxiety. It's usually well tolerated. Any form except magnesium oxide, which doesn't absorb well. So something like, magnesium citrate, taurate, glycinate, etc.

The rule of thumb for magnesium is to gradually increase the dose over a number of days until you get diarrhea, then back off a bit, and that is "your" dose.

An Epsom salt bath would do the same thing (that's magnesium sulfate).

Then talking to a professional psychologist (cognitive behavioral therapist) can be very helpful. I had one while I was getting sick with ME/CFS (I had a gradual onset). She diagnosed me with "adjustment disorder" - basically it means you're experiencing anxiety and depression because life has thrown you for a loop. This is a natural reaction to what is happening to you.

She helped me deal with the uncertainty of not knowing what was going on, if I would ever get better, finding a doctor who could diagnose me, and eventually when it became evident I was going to be disabled, applying for disability and finding a disability lawyer. Therapists often have connections to doctors and lawyers they can suggest, so that was very helpful.

A therapist can help you learn various relaxation techniques such as progressive relaxation or meditation and help you get out of the thought spiral that causes you to have more anxiety.

If you can't get out of the house, there are therapists at DoctorOnDemand.com, who you can talk to via Skype.

If you have more than mild to moderate situational anxiety or depression, they will let you know it's time for medication.

There are some alternatives to SSRI medication, such as the inositol Hip mentioned. 5htp is another option. They both increase serotonin. PharmaGABA is another - it raises GABA, which is calming.

It might not be a bad idea to see if you have adrenal fatigue. You can have both sleep issues and anxiety from that. You can do a 24 hour cortisol saliva test for that. You can get a combination test that tests both your neurotransmitter metabolites and adrenals called a neuroadrenal test.

This is the one I got last time - http://www.integrativepsychiatry.net/neuroadrenal_profile.html. The nurse practitioner there was very nice to talk to and had some good suggestions for me for both neurotransmitters and adrenals.

Based on my experience, I would suggest trying things like that first, before trying an SSRI.
 

BruceInOz

Senior Member
Messages
172
Location
Tasmania
Everything I read seems so bleak

Do I have hope to get better?
Please remember that on this forum you are only hearing anecdotal stories from those that DIDN'T get better from where you are now. From talking with us you might conclude your probability of recovering is non-existent but that is definitely not the case. Take from here the advice on resting etc., but don't give up hope just because you only hear from long-time sufferers. This site has selected us. The many who recovered early just aren't here.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Please remember that on this forum you are only hearing anecdotal stories from those that DIDN'T get better from where you are now. From talking with us you might conclude your probability of recovering is non-existent but that is definitely not the case. Take from here the advice on resting etc., but don't give up hope just because you only hear from long-time sufferers. This site has selected us. The many who recovered early just aren't here.

Thank you, that makes a lot of sense, so I can still recover even though I seem to be getting worse?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
That helps most people regain functionality? Honestly
Well, we don't know when but things are looking more optimistic than they ever have in the history of this illness. Dr. Ron Davis said that there would be a break through by the end of the year.
Everything I read seems so bleak
You are reading the wrong stuff. Our stories can be bleak because the history of the illness has been bleak. Read the research section instead--it is anything but bleak.
Do I have hope to get better? Should I try a Dr Goldstein treatment like nitroglycerin or Equilibriant to try to stop the progression before it gets worse? Should I find a ketamine injection clinic? So depressed but worried about damage from antidepressants
Yes, have hope. As far as what you should try, we can't give input there but you can read what people have reported about what they have tried.
Scheduled to see Chia in May, should I Skype with Dr Enlander in the meantime?
You can read here about the protocol that Dr Enlander usually prescribes and people's response to it. Dr. Englander is mostly retired and that may affect your decision to work with him or not.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
May 19`th this year there will come incredible treatment :snigger::woot::whistle:
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
bad-joke-great-sense-of-humor_o_356767.jpg
 

perrier

Senior Member
Messages
1,254
I am also sitting on the edge of my chair waiting for real treatment,not just symptom relief.....

Is there going to be a real breakthrough soon? I really need to hear.....
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I am also sitting on the edge of my chair waiting for real treatment,not just symptom relief.....

Is there going to be a real breakthrough soon? I really need to hear.....

A breakthrough for me would simply be if e.g cyclo and rtx got through phase 3, cause then maybe doctors could start experimenting a bit more with immunomodulators/immunosuppressives without losing their license.