ADRENAL FATIGUE, ME, CFS SUPPORT GROUP

[[St...]]

Following

[[Bu...]]

Yes, lets keep this thread going!  I had severe adrenal fatigue before starting benzos but, do worry how tapering off benzos and  will affect the adrenals/central nervous system.  I have recovered quite a bit but, worry that because it can be so hard on the body to get off these drugs that, it could cause an adrenal crash. The doctor who helped me with AFS (Adrenal Fatigue Syndrome), voiced his concern about this, too but, is monitoring my progress.  Have to be very careful with rest, food, supplements, stress and do a very slow taper.

[[Sa...]]

I will try and post here the list of all medicines that are dangerous for ME/CFS and Mito dysfunctional individuals like us. It is super important to be able to have this list and share with family members or even have it pinned to a wall, in my case by the front door.

[[wa...]]

I will try and post here the list of all medicines that are dangerous for ME/CFS and Mito dysfunctional individuals like us. It is super important to be able to have this list and share with family members or even have it pinned to a wall, in my case by the front door.

 

Please do, Sar  and thanks. WBB

[[Sa...]]

Anesthesia recommendation for CFS/ME or anyone with sensitive physiology  &]           

                                  Medicines to watch for

 

http://www.prohealth.com/me-cfs/me-chronic-fatigue-syndrome-anesthesia-recommendations.cfm

[[St...]]

Almost 18 months out and having one of those days where I really feel like I need to be in a psych ward? I'm just not at all functional, and the negative thoughts are just getting louder and louder, even watching TV or talking to a friend on the phone is too much for my nervous system and I know how crazy that sounds. I force myself to do both on occasion as I need the distraction but my nervous system always feels worse for it. Can't even disagree with my negative thoughts because this experience is negative, not being able to go outside when I want, not being able to play with my kids when I want etc. It sucks.

 

Tried taking Omega 3 and Vitamin D supplements earlier in the month (as I was able to tolerate them earlier in withdrawal and know how neuro protective they are) but they rev'd me up to the point of making me shake and are the only thing that I can think of that can justify this downward trajectory I've been on this month, so have obviously stopped taking them.

 

Housebound. Mostly bed bound. It's not anxiety per se that's stopping me from doing things, it's my debilitating fatigue which in turn is anxiety provoking Have forced myself to do a few 5 minute walks over the last couple of weeks as I know all the neurological benefits of exercise but they just put me back in bed in a dark room for two or three days to get over them.

 

18 months of this, no tangible progress to hang on to I JUST WANT TO LIVE!!!!

 

Seen just about every CFS/M.E specialist, tried so many protocols and I'm just no better for it. My personal belief is that CFS/M.E is caused by severe nervous system dysfunction which fatigue is a symptom of, but literally going through benzo withdrawal has got to be the worst and hardest thing you could ever put your nervous system through so even though I believe in my benzo recovery I'm really worried about the negative impact it's having on me making a full recovery from CFS/M.E

 

Not usually this negative, just got fed up with being uber positive today

[[ih...]]

My ME/CFS was triggered by benzo tolerance, cold turkey withdrawal & getting floxed by Cipro, (not that either of my CFS specialists will entirely acknowledge the role of benzos).

 

As such, I can't say whether recovery from pre-existing CFS might be impeded by adding benzo withdrawal, (you are probably aware that at least one of the CFS protocols includes benzos.)

 

I fully understand your frustration. I was effectively bed-bound for the first 18 months & continued to have acute waves which gradually reduced in duration but not severity. It has taken a ridiculously long time to reach a state of being mostly functional again but I do believe that even hard cases will heal completely.

 

I believe that, for me, the syndrome is neurological in origin. In waves, my brain functions in a completely different way; the slightest exercise is too taxing & even the simplest of tasks are exhausting. In windows I can engage in hard core hiking with the fittest of the neuro-normals.

 

I have post-grad bio-chem qualifications & in the absence of anything else to do, researched the heck out of GABA & GLU receptors, plus a lot of alternative therapy personal guinea piggery. I have yet to find anything other than time to be reliably effective.

 

I think that those of us with CFS type withdrawals do benefit from pacing ourselves. I have just come out of a 4 day bad wave which I had not experienced for many many months. I was under stress from caring for my DH who had to have a succession of surgeries, then did back to back strenuous hikes on very little sleep & too much caffeine.

 

I can get a psychological boost from pushing myself but my CNS let me know in no uncertain terms that there are limits. I well remember when walking to the end of the driveway was an achievement & I'm not sure that it is beneficial to push through when you can see a clear connection between the exertion & feeling worse.

 

Even with a prolonged period of being completely bed-bound, I have been able to recover my pre-benzo fitness levels, even though I'm now mid 50s. I know you want so much more at 18 months off but it seems that our CNS will not be dictated a time frame for recovery in this business.

 

Saraa thanks for the link to anaesthesia recommendations. Hoping to avoid surgery but useful info to have, just in case.

 

[[...]]

Hi Stuckindoors, Hi iHope 

 

I also call my fatigue/exhaustion debilitating. It seems to have taken my life away  :'(

 

It's crept in sneakily while I was on my cocktail of drugs but it took me a long time to put two and two together. I thought I had CFS/ME, but never got a medical diagnosis. Doctors would tell me that I was on so much psych meds that I was bound to feel "drowsy" - oh how frustrating I was not drowsy I was plain exhausted!!!

Is my body physically fatigued/depleted? I don't know, nothing that shows up on tests. I eat a varied balanced diet including "healthy fats" and believe this is the best way to get the nutrients we need.

I do take supplements but I wouldn't spend all my money on them. As you've pointed out, some can rev sxs up, Ashton claims they don't help the healing process.

 

My point is that I agree with you: I also believe any type of exhaustion is much more likely to be caused by withdrawal (and long term benzo use leading to tolerance  ), you posted before me iHope, I think we agree!! 

 

So yes, it sucks. But hang in there and you will get your life back, we all will   

[[Sa...]]

Almost 18 months out and having one of those days where I really feel like I need to be in a psych ward? I'm just not at all functional, and the negative thoughts are just getting louder and louder, even watching TV or talking to a friend on the phone is too much for my nervous system and I know how crazy that sounds. I force myself to do both on occasion as I need the distraction but my nervous system always feels worse for it. Can't even disagree with my negative thoughts because this experience is negative, not being able to go outside when I want, not being able to play with my kids when I want etc. It sucks.

 

Tried taking Omega 3 and Vitamin D supplements earlier in the month (as I was able to tolerate them earlier in withdrawal and know how neuro protective they are) but they rev'd me up to the point of making me shake and are the only thing that I can think of that can justify this downward trajectory I've been on this month, so have obviously stopped taking them.

 

Housebound. Mostly bed bound. It's not anxiety per se that's stopping me from doing things, it's my debilitating fatigue which in turn is anxiety provoking Have forced myself to do a few 5 minute walks over the last couple of weeks as I know all the neurological benefits of exercise but they just put me back in bed in a dark room for two or three days to get over them.

 

18 months of this, no tangible progress to hang on to I JUST WANT TO LIVE!!!!

 

Seen just about every CFS/M.E specialist, tried so many protocols and I'm just no better for it. My personal belief is that CFS/M.E is caused by severe nervous system dysfunction which fatigue is a symptom of, but literally going through benzo withdrawal has got to be the worst and hardest thing you could ever put your nervous system through so even though I believe in my benzo recovery I'm really worried about the negative impact it's having on me making a full recovery from CFS/M.E

 

Not usually this negative, just got fed up with being uber positive today

 

Hi Stuckindoors,

Did you ever do a genetic testing? If so did you have a MTHFR mutation?  I did do this test for $100 and i do have the mutation and wondering if that's one of the causes of CFS.  I've lived with this issue for about 30 years now and wonder if the difficulty i had with withdrawal and its continuation has something to do with it.

 

Omega 3 supplements- you'll find literature that says it can have paradoxical effect as it lowers blood pressure.  Vitamin D not sure.

 

Today i am also getting up in the withdrawal calander and is actually my anniversary of jumping off this horrific drug. Starting my 16th today. I am spending the majority of my time in bed and would remain here would not be for sheer terror of loosing more muscle and my mind.  Hence i push as we all do. 

Wishing you a better Sunday

Saraa

 

[[ol...]]

Just bumping this up. Its a really good thread. Maybe someone will have some new input 

[[ca...]]

Just joining this thread. Thank you for it. I have adrenal issues and the methyfolate mutation. The drugs were horrendous for me but at the time I didn't know I had either. I've been off all meds for almost 20 month and still suffering from debilitating sleep issues. I'm so exhausted but have been able to increase my walking some. I'm now able to take some supplements and eat a lot more foods than in the past but still I wake every few hours or less each night with terrible sx. Does anyone else have anything like that?

[[Bl...]]

Just joining this thread. Thank you for it. I have adrenal issues and the methyfolate mutation. The drugs were horrendous for me but at the time I didn't know I had either. I've been off all meds for almost 20 month and still suffering from debilitating sleep issues. I'm so exhausted but have been able to increase my walking some. I'm now able to take some supplements and eat a lot more foods than in the past but still I wake every few hours or less each night with terrible sx. Does anyone else have anything like that?

I have high cortisol issues I am sure related to the stress of withdrawal. I am almost at 28 months and I still get waves of symptoms especially when stressed and it does not take much. I also suffer from sleep issues--trouble falling to sleep, waking up usually between 3-5 AM. Some of my other symptoms have either gone away or are minimal now. The cortisol surges and panic attacks in the middle of the night have gone away--So there is hope!

[[Bu...]]

Glad to see this thread active again-it's a great idea.  One thing I have taken away from having adrenal fatigue and then going through  benzo withdrawal is;  how hard my body is working to try to balance everything in order to recover from all this!  I read somewhere that our bodies are always trying to maintain balance/homeostasis because, that's where it functions most efficiently.  It is quite the challenge to keep everything in life balanced and I think back to how I used to eat too much sugar, be on the go all they time without breaks, not get enough sleep and worry about everything!  All that plus a couple of sudden health crisis and some serious life crises, seemed to tip me over the edge as far as my CNS was concerned.  I kept getting sicker and sicker but, still wouldn't slow down and listen to what my body was telling me...ugh!  The doctor who helped me said that the body will keep down regulating itself in order to get us to slow down and pay attention.  Boy, did I learn that lesson the hard way   

[[ca...]]

The cortisol/adrenalins surges that wake me are the unbearable part. They are always worse between 3-5 am. Why is that? I've having such a hard time dealing with those. I have extremely low cortisol in the morning and mid day but regular the rest of the time. When did the surges improve for you. This has been going on so long for me. I'm wondering if my body can ever heal...

[[Bl...]]

The cortisol/adrenalins surges that wake me are the unbearable part. They are always worse between 3-5 am. Why is that? I've having such a hard time dealing with those. I have extremely low cortisol in the morning and mid day but regular the rest of the time. When did the surges improve for you. This has been going on so long for me. I'm wondering if my body can ever heal...

The night time cortisol surges were one of my worst symptoms as well. I think part of the problem is that our Circadian rhythm gets out of whack in withdrawal. Our normal cortisol production gets off-schedule and the stress causes our adrenals to produce too much cortisol at times--the fight or flight thing. I have read that it is actually a part of the hypothalamus that is overactive and sends out chemical messages to the pituitary which in turn messages the adrenals which produce too much cortisol.

There are a lot of posts on BB about HPA dysfunction caused by benzos--some really good ones that can explain it way better than I can. Neurotransmitters get affected by benzos--melatonin, etc. it takes time for that all to heal and regulate again.

I had a really bad wave last Dec thru about the spring. So I have had the cortisol surge problem twice-in acute and then again in the second year. But the second time I know I was over-doing it by running and training for 10K races. It caused me a major setback. It caused too much stress on my body at the time. I just remember getting on Benzo Buddies to calm me down and distract me. Often I would have to pace a while. Usually within 2-3 hours I could fall back to sleep.

It has gotten better for me--I have been taking a supplement for it for almost 9 months. There has been a lot of improvement, no more surges or panic attacks. I still have insomnia sometimes, but no surges anymore. I still often wake up early in the morning,  but I am usually able to fall back to sleep. So it isn't perfect, but it is better than it was.

You will heal. I know it is hard not to worry about it, but your body will heal.

[[St...]]

Thanks i'm 20 months out and POTS type symptoms just really caught me by surprise so i was really intrigued by your signature. I just can't understand why if so many of my original symptoms have gone away that i would be struggling with a new symptom like this. Dizziness on standing, a floaty boat feeling and what used to be a wired tired is now more of a heavy tired did you find anything that helped your POTS type symptoms other than time? 

 

[[Bl...]]

Thanks i'm 20 months out and POTS type symptoms just really caught me by surprise so i was really intrigued by your signature. I just can't understand why if so many of my original symptoms have gone away that i would be struggling with a new symptom like this. Dizziness on standing, a floaty boat feeling and what used to be a wired tired is now more of a heavy tired did you find anything that helped your POTS type symptoms other than time?

I find that staying well hydrated helped a lot. For a while I was drinking salt water when I felt lightheaded or floaty-boaty. My blood pressure would drop so low I would get very light headed. But my blood pressure was all over the place for a few months--spiking high and then dropping low. I would only drink the sea salt water when dizzy.

I also eliminated as much stress from my life as I could--stress would trigger POTS symptoms for me. I work outside in the heat (taking an AC break right now) so I drink electrolyte water that I make with Nuun tablets. I use half a tablet dissolved in 2 cups of water. I like them a lot better than Gatorade because they do not contain sugar.

I also was eating every 3 hours or so because I was having blood sugar issues. I think it helped keep some stress off my adrenals. I don't have to eat so often any more--and the POTS symptoms are much much better. If I overdo it, my pulse rate gets a little high and it takes a while to recover. But overall, it has improved. Those are the few things that I think helped me, other than time. I hope you feel better really soon.

[[ih...]]

Thanks i'm 20 months out and POTS type symptoms just really caught me by surprise so i was really intrigued by your signature. I just can't understand why if so many of my original symptoms have gone away that i would be struggling with a new symptom like this. Dizziness on standing, a floaty boat feeling and what used to be a wired tired is now more of a heavy tired did you find anything that helped your POTS type symptoms other than time?

 

I had very bad POTS in earlier withdrawal with extremely low BP.  I did find that clonidine helped a lot with both issues. Although it is generally rxd for high BP, its also a glutamate blocker. I had no real side effects & was able to just stop the med when no longer required.

 

Although I can still get acute waves of extreme fatigue & benzo flu, the POTS has never returned.

[[ca...]]

My saliva test shows my cortisol is extremely low at night and morning.... way below normal low. Is there anything that can help with that?

[[wa...]]

My saliva test shows my cortisol is extremely low at night and morning.... way below normal low. Is there anything that can help with that?

 

What time did you take the saliva tests?  (Were there 4 or 8 vials?)  WBB

[[az...]]

Hi I believe I suffer from adrenal fatigue as a result of benzos. I have swollen lymph nodes and an enlarged thyroid as well as other disturbing developments I feel I can attribute to being on them.

 

Just wanted to post briefly so that I can follow and join in and remember you're here.

 

Thanks-

a.

[[Se...]]

You know, the saliva tests are not terribly accurate.  I did mine about 3 years ago, they showed a pretty normal distribution, a tad low but the daily rhythm looked absolutely spot on.

 

Not so my Meridian Valley 24-hour urine panel.  Year after year through withdrawal my absolute cortisol and cortisone levels have been in the toilet.  Until this year, 3 years into withdrawal.  It has taken this long for them to recover to about 70%.

 

Had I been working off the saliva test, I'd be hooped.  The Meridian Valley test was critical to determining my treatment protocol and is the reason why I'm still alive.  I test yearly and it has guided our treatment approach.  Saliva can tell you some things but I do not feel it is a very good measure of the "absolute" values given my experience.  The Meridian Valley test results this year matched how I felt qualitatively.  I told my doctor I felt I was about 70% healed before we looked at the numbers - so amazing that they were pretty spot on.  Prior to this point, I felt pretty roadkillish and the numbers reflected that.  I know that Chris Kresser is not using the saliva tests anymore, he has moved on to another test protocol.

 

Food for thought.

 

 

Ali

[[ca...]]

My saliva test was a 5 vial test. Where do you get that Meridian test??

[[Bl...]]

My experience with the ZRT Lab 24 hour cortisol test was that is is accurate. I took a sample during the times when I was revved up, especially at 3 AM, and my cortisol was high during those times. I took 5 separate samples throughout 24 hours. I go to a really good functional medicine doctor and she ordered the test.

[[re...]]

 

 

Good Morning,

 

I'm new to this group.... Been classified stage 3C AFS

 

Working with a nautropath but no supplements yet as I'm "fragile" (I feel that way too)

 

How is everyone doing on their AF journey