Diagnosed with CFS/ME but I have more symptoms of Fibromyalgia

[LolaMerle]

Thanks, JayCS, for clarifying what each is for and when it should be taken. I started on ALA already and will be adding ALC. My doctor had suggested 600 mg of ALA twice a day - what are your comments on that dosage? As soon as I can order the CoQ10 I want to start that too. I’ve also been researching GABA. Boy, I’m ending up taking a load of supplements every day. I assume you do too?

Is it your experience that when you start to take something like ALA, it takes weeks to start making a difference, or is it quicker than that? I know nothing is instantaneous or even guaranteed to work, but I’m in the midst of a 3 week long flare-up and am getting desperate to find something to help with the fatigue, brain fog, and weakness. I can work through pain, but the other just kicks my butt and keeps me down!

 

[LolaMerle]

LolaMerle, I'm so sorry to hear how badly you've been feeling I've been reading (mostly on me/cfs instagram...) about how similar long covid and me/cfs are, and it nust be awful to have both, along with fibro. That feeling you describe of "coming down with something" is how I felt for a long time before being diagnosed (albeit much more mildly than what you describe). I thought I was just very good at fighting off the flu...

The problem arises when I actually have come down with something and don't realize it! I have on more than one occasion ended up in the hospital because I didn't realize I had a serious infection (I just feel feverish and achy all the time), so now as tiring as it is, I try to treat each new symptom as unrelated to my diagnosis at first. I also take my temperature regularly now just to be sure I don't have a fever

Thank you for this advice from the other post!! I do struggle with memory issues, etc. so will have to look into that!

I hope you are able to find things that help you feel a bit better!

Thank you, KrisWark. Yes, I never really know what is hitting me - fibro or long covid or cfs, or all 3 at the same time. I sure wish the long covid wasn’t a factor in all this!

One thing maybe you should be thankful for (?) is that you do get a fever that indicates something more serious. I rarely ever get a fever. I can feel like death warmed over and still not have a fever. I did get a spike up to 104 degrees when I had covid (the dastardly Delta variant!), but it was only for one afternoon.

Oh, well. One day at a time, as they say…

 

[JayCS]

Thanks, JayCS, for clarifying what each is for and when it should be taken. I started on ALA already and will be adding ALC. My doctor had suggested 600 mg of ALA twice a day - what are your comments on that dosage? As soon as I can order the CoQ10 I want to start that too. I’ve also been researching GABA. Boy, I’m ending up taking a load of supplements every day. I assume you do too?

Is it your experience that when you start to take something like ALA, it takes weeks to start making a difference, or is it quicker than that? I know nothing is instantaneous or even guaranteed to work, but I’m in the midst of a 3 week long flare-up and am getting desperate to find something to help with the fatigue, brain fog, and weakness. I can work through pain, but the other just kicks my butt and keeps me down!

You're welcome...
ALA: I forgot to say the "R" enantiomer is more bioavailable, so it's important to watch for that, e.g. ALA-R = RLA, R-lipoic acid
May seem silly, but just for the record: ALA = also alpha linolenic acid, an important omega 3 type... but we are talking about lipoic acid.
Dosages of 300-1800mg/d are recommended.... I haven't concentrated on it yet and have just seen I'm only taking 200mg at the moment...
CoQ10 I started on ubiquinone, but have now changed to ubiquinol and gone pretty high dose since the jab-sfx.

As regards the amount of supps: April 2020 I followed a protocol with quite a lot of these that were sposed to help for FM, but didn't.
So - preferring healthy food to pills - I left most supps be for quite some time, apart from some basics D and when nec. B12
But having no other alternatives I started on rarer ones 2021, one after the other, which made everything worse,
until I discovered GABA in April, which became my game changer. This brought on other amino acids which also worked fast & tangibly.
Due to those I was on to about 15 (I could look it up on my blog, but let's say roughly), then my new problems needed drastic measures,
so I got everything I could get hold of, which got me up to 30. Some of these I left again, but now the severity of the jab has got me to 30.
It was a helluva bit of work getting that sorted, getting the best and value for money and how to arrange them per day.
I take some roughly every two hours (more at night than in the daytime), about 60 pills altogether and need 4x4 compartments to get them sorted, about 15 minutes in the evening to just get the next night's and day's sorted incl. encapsulating the ones that need to be.

@Jemima is more of an expert on ALA - she (re. her partner) realized an improvement in alertness after about 3 weeks,
and I'd guess that's the sort of time for quite a few supps.
Amino acids like GABA work immediately - I take them and get effects inside of hours, positive and occasionally negative.
I have symptoms and know I need to take my next dose to get them down. If I'm distracted and don't the don't go down.
That's much more fun than the typical ones, cos you can move faster and it's a cool experience.
So the ones that work(ed) immediately are:
the amino acids: GABA, glutamine, theanine, NAC, and for me negatively taurine, 5-HTP, L-tryptophan,
for alertness/energy: ginkgo (used to at least), D-ribose (sugary energy flash, but also GI problems),
and the enzymes: NADH and serrapeptase worked immediate miracles a few times and then never again.
for sleep: positively GABA and a high dose of passiflora, negatively: 5-HTP- tryptophan, CBD oil & melatonin (zombified immediately).
Typical herbs for sleep like hops and valerian don't do anything at all for me.

So I'd say most of these ones for my fibro symptoms work quickly, whether with negative or positive effects.
also I must say all the antihistamine supps now have also worked for that pretty quickly, inside of about 10 days.
whilst the ones that are generally anti-inflammatory or for my lipids I can only judge by whether my the x-ray if my tooth can stay in and the lipid levels, so I have to wait for those results. (Tooth was to be decided inside of 5 weeks, but the jab stopped that plan.)

Bottom line: If something isn't working inside of 3 weeks, I'd consider moving on.
And concentrating on fast working ones is much more fun, but you have to be on your toes to react.
And if I'm desperate (like with jaw, lipids & jab) I consider jumping on everything and separating the wheat from the chaff after.

 

[LolaMerle]

KrisWark: I read a very interesting article recently from VeryWellHealth that has to do with Long Haulers (Covid) and the possibility that reactivated viruses may be to blame. If you've had ME/CFS, Epstein Barr (which can trigger MONO), or herpes simplex, these viruses can remain dormant. If you're infected with another virus (Covid), that’s a stress to the body and immune system and that may be enough of a stress to trigger replication of these dormant viruses. The extreme fatigue I (and many other long haulers) have experienced for over six months is so similar to symptoms of CFS, MONO and EBV that this makes a lot of sense to me. Add fibromyalgia into the mix and geez! The fatigue part is so debilitating for me that I'm only good for about two hours working at my desk and then I have to go back to bed for a few hours. I'm trying different approaches (stopped Lyrica due to weight gain, started CoQ10 recently, going to try Acetyl-L-carnitine again). Really hoping something works because this is horrible!

 

[LolaMerle]

Well, my doctor responded that if I've had CFS/EBV, MONO in the past, my body has the antibodies to fight them off so I wouldn't be having any of them now. This doesn't quite fall in line with articles on how they can be re-triggered by Covid, or why there are blood tests to determine both whether or not you have had those viruses, AND if you have a current flare-up. I don't think she is correct, but right now it isn't worth trying to have a conversation with her about it, since messages take 2-5 days to get a response. By the time they get Long Covid figured out, hopefully I'll be over that and just dealing with fibromyalgia ( "Just"??). I've had high blood pressure recently too - dandy!

Naptime!

 

[Jemima]

Well, my doctor responded that if I've had CFS/EBV, MONO in the past, my body has the antibodies to fight them off so I wouldn't be having any of them now. This doesn't quite fall in line with articles on how they can be re-triggered by Covid, or why there are blood tests to determine both whether or not you have had those viruses, AND if you have a current flare-up. I don't think she is correct, but right now it isn't worth trying to have a conversation with her about it, since messages take 2-5 days to get a response. By the time they get Long Covid figured out, hopefully I'll be over that and just dealing with fibromyalgia ( "Just"??). I've had high blood pressure recently too - dandy!

Naptime!

Ugh, doesn't sound like the most engaged doctor I'm so sorry you're dealing with that!

You're totally right that the issue with EBV (Epstein Barr Virus, which is responsible for the infection known as Mono(nucleosis) in the US and Glandular Fever in the UK) is that while our immune systems can usually fight the virus into dormancy within the body, the virus stays with us for life - it's estimated 95% of the global population carry EBV. So, if something knocks our immune system off balance in the future - like another infection or a trauma - there's a small chance that the virus can become reactivated. This in turn, may cause long term systemic problems that manifest as a diagnosable syndrome. That's the theory as far as I understand it, at least!

Thought, too, to clarify that CFS (Chronic Fatigue Syndrome, otherwise known as Myalgic Encephalomyelitis) isn't a virus - it is a cluster of symptoms, quite similar in nature to fibromyalgia, that has been associated with viruses in a number of studies, but not in a conclusive way. Unfortunately, not all people with CFS or Fibromyalgia have been infected with the implicated viruses, so rather like fibro, CFS is a bit more of a mystery! Sorry if you're well aware - just thought that other readers might get a bit confused.

Can you switch to another doctor or is that a total nightmare? I really hope you get the support you need, and manage to tease apart the various issues with success in the future! Hope your nap was at least a little refreshing too

 

[LolaMerle]

Can you switch to another doctor or is that a total nightmare? I really hope you get the support you need, and manage to tease apart the various issues with success in the future! Hope your nap was at least a little refreshing too

Thank you, Jemima, for the kind and supportive words. As you know, that in itself helps so much. I switched to this doctor a few months ago, and she is the first one who even mentioned fibromyalgia. She's been open to any blood tests I've requested and seemed quite supportive, so I was surprised at her response to this. I feel I am getting a bit of the attitude that doctors can get when you are more proactive and suggest different ideas, which most of us with fibromyalgia have had to do for years. I hope not. I will have to tell her I don't feel her answer was correct, in between naps!

I am just biding my time at this point, going back to bed when I have to, and doing what I can while feeling so rundown. I've always known that in life, most things ebb and flow and change will come if you're patient, but of course this situation is more challenging and lasting a lot longer than other challenges have in my life. Trying anything new is so time-consuming too. After stopping Lyrica because of the weight gain, and trying a few blood pressure medications and having to wean off of them because of side effects, I've just added Co-Q10 and I've been on that for about a week. As it's been mentioned here in the forums, it sometimes takes weeks to see if anything is helping, and I'm attempting to just add one thing at a time. I had tried ALC, but backed off on that until I could deal with the Lyrica issue. I'm deciding whether or not to try GABA before ALC again. SO many possibilities! Any input on trying GABA vs ALC for extreme fatigue and feeling constantly like I have a horrible hangover?

 

[JayCS]

SO many possibilities! Any input on trying GABA vs ALC for extreme fatigue and feeling constantly like I have a horrible hangover?

Studies show that ALC = Acetyl-L-carnitine is more for mental fog (and inflammation), whilst LC = L-carnitine (or PLC if you can get hold of it) is more for physical energy/fatigue, and these don't work together, so I've long stopped my ALC and gone over to L-carnitine. Can't say that either work for me, but I take it (/them) to try to lower my lipids too.
Now GABA as I say is brilliant for me, I seem to have low serotonin and is helping me for many things, but wouldn't say for fatigue, it's for sleep, fog, pains, Ache, stiffness (and anxiety), so more relaxation, esp. muscles. Which might make you more fatigued, esp. if you don't counteract that with theanine and/or glutamine.
So "GABA or ALC for fatigue"? No. ;-P Carnitine first! (?)
But if hangover means mental fog, rather than physical, I'm not sure: LC or ALC. But not GABA first.
Before GABA or even before LC/ALC, I'd actually try 1-2 good magnesiums first (weeks) and then either NAC or D-ribose (work pretty fast/immediately).

To make sure I've just had a look at my fibro blog on May 6th 2021 after "3 good GABA weeks" and it does sound a bit better than I've said above:

• "6) Exhaustibility is quite a bit better & less, but still distinctly there. No longer problems with staircases. Rest after exertion definitely necessary, but not quite as soon and not quite as long, e.g. 30’ after 2h of exertion instead of 1h after 1h of exertion.
• 7) Energy is quite a bit better & [edit: more], but still not considerably better."

10 positive effects, which all remained, and 10 side effects which were tolerable and decreased to zero inside of 7-10 days.

(My L-carnitine (6€/m) is a lot cheaper than the ALC (20€/m), cos I can get it as powder and self-encapsulate.)
(On perhaps not starting too much at the same time, I'd say it's also a question of side effects, but these can be sorted out quicker than the main effects, often after 2-3 days.)
(Bit depressing looking back a year to see how much table tennis I could play pre-jab, despite fibro. But OTOH my local pains at "zero" now is great. My sleep is good now. I've got so much to be thankful for.)