CFS Syms

[xlynx]

Hi All,

I new to the forum but it looks like there is lots of great info here.

I am looking for a little advice as I have only had cfs for 8 months.

I am interested as I dont know anyone with CFS if others have similar symptoms.

My symptoms of fatigue, difficulty sleeping and staying asleep and muscle pain and fog are normal I think but a symptom that really bothers is heart pounding and palpitations and I also get really wired like my nervous system assumes that I need to be aware of a danger that isnt there and I just cant relax and am on serious edge.

Is heart pounding and palpitations and this nervousness all cfs issues or do I need to be concerned with anything else? All these symptoms are worse while crashing and reduce with all the others.

Also if it is any suggestions to reduce these issues. Many thanks

 

[Jody]

Hi xlynx,

Welcome to the forums.

The palpitations and anxiety attacks can be really distressing, I know. They are very common symptoms that many of us run into. I know that doesn't make them any easier to live with, but perhaps you'll be a little reassured to know they are not unusual.

Lots of guesswork as to what causes this.

Here's the one I lean toward.

Seems we have a glitch in our sympathetic / parasympathetic nervous systems -- we experience the physical symptoms of panic when there shouldn't be any.

What helps me -- I remind myself that there is no danger, it is just a malfunction, and try to get into my parasympathetic nervous system (the calm one, as opposed to fight or flight). Anything that helps you physically relax is good -- get in a quiet place; meditate; slow your breathing; alternate nostril breathing helps some folks.

Also, check your diet, some foods prompt weird reactions -- for me, gluten can cause a full-fledged panic attack where I could curl in a ball and weep, and not know why ... so try eliminating common allergens -- grains, dairy, corn, potatoes ...

Weakened adrenals can be a factor -- look into getting supplements for adrenal support (info on this forum for this).

A natural liquid called Rescue Remedy can lessen panic with just a few drops at a time.

As you say, when other symptoms recede, so does this. So, take the steps that help you to regenerate. Usually extra rest, getting away from noise and too much activity, extra sleep perhaps.

There is probably more, but this is what comes to me right now.

I hope you will get all the information you need here with us.

 

[xlynx]

Hi Jody,

Thank you for explaining that, I cant tell you how good that is to hear.

When I wake up in the morning I get racing palps and enough adrenaline to shake the bed and then on top of it have been worrying if it is normal which gets me into a furious sweat lol.

I am going to give that Rescue Remedy a try.

I have tried natural adrenals and somedays they really, really help me and some days they send me over the top, will have a search in the forums. I am just beginning to appreciating what a balancing act cfs is.

I love this forum already!

Thank you.

 

[Jody]

xlynx,

It is a balancing act for sure. And for each of us it's different. Fortunately there are enough similarities that we can offer each other suggestions, which helps.

Only for 8 months so far? That means you are just learning how to deal with this illness. That is hard.

But there is more information and treatments available these days than there were even a few years ago.

As to the adrenal supports -- sometimes the dosage can cause a sense of nervous energy, for instance I can take Ashwaghanda once, but not two days in a row. I will feel like I'm on speed and I can't keep up (cfs style, so not very fast speed). But one every other day works for me.

Then again my husband can take 4 Siberian ginseng in a day and it works well for him.

Each of us are so different. Feel free to experiment to find what may work for you.

Oh and one other thing, some of us can only handle very small dosages on alot of things, and can get bad reactions to what is considered a normal amount. Don't worry about "normal", just look for what works for you.

 

[Marylib]

Xlynx,

Yes the heart stuff can be scary, especially at first.

Love all your suggestions Jody.

My doc told me that the thing to look out for would be if there is pain associated with all the palpitations. Then it would be time to get checked out.

But I am assuming you have had your heart checked out as a process in your diagnosis?

 

[alice1]

Definitely had the heart racing and wired sensation in the beginning of EBV.After waking up from a nap my body would be shaking the sofa and I could feel my spine vibrate.
Great advice above and hang in there xlynx.

 

[xlynx]

Hi Guys,

Yeah 8 months and have just got my head around accepting there is no instant fix miracle cure (I was living that day dream for the first 4 months).

I felt dizzy and tired for a few months before I got ill but pushed through it. Then out the blue one day i felt really wired and tired and left me 6 months flat in bed, couldnt get up.

My first doctor got so upset with me that she told me I was wasting medical resources and she actually made me debate if it was all in my mind. She also told me that the only people that get cfs are rich older women that are bored with their husbands (the cheek of it!) That changed my perspective on the medical system alot. I was hospitalized for Pneumonia and given antibiotics and steroids and then they told me that it was a mistake and released me, I didnt even have it. Then they gave me beta blockers for the palps, I couldnt take side effects so I stopped.

I finally managed to get a reasonable doc who treats quite a few pwc and he has got me going on lots of vits etc and magnesium anti candida etc which has been a real help for the pain.

I tend to get a lot of pain around my chest and back area and is more painful when I get the palps but I think it is costocongitis and the muscles around my spine near my heart as applying pressure to these areas makes it hurt externally. My doctor also told me that heart pain is usually a bit more wide spread. I have had a ultrasound and ecg and all was normal even though I was on a beta blocker at the time.

I bet most people with cfs get mis diagnosed.

Someone told me that the beginning of cfs can be the worst, is that true? I really hope so.

How long has everyone else been balancing cfs for?

Sorry to ramble away, just dont get out much

So great to meet you all, how did pwc cope pre internet?

 

[Frickly]

Welcome

I used to get the heart thing all the time. I still get it sometimes but it seems that the treatment I am on for mycoplasmal infection and EBV have helped. It was the most disturbing as i could not help but wonder if I was going to drop dead of a heart attack at any minute. I have been sick for about 7 years. Most of that was relapsing remitting sort. The last two years it hit me pretty hard but treatment is getting me out of bed, although, no cure to date.

Welcome to the forum and I am sure you will find a wealth of knowledge here to help you on your journey to good health.

 

[fresh_eyes]

Hi xlynx, welcome. Yes, they say only 16% of PWC are accurately diagnosed.

I've had it for 6 yrs. and in my case it's definitely gotten better. My symptoms are somewhat less, but mostly I've just learned how to pace myself and see crashes coming and avoid them (mostly ). The heart palpitations only seem to happen when I'm on the brink of a crash.

 

[Wayne]

Bizarre Doctor Experience

My first doctor got so upset with me that she told me I was wasting medical resources and she actually made me debate if it was all in my mind. She also told me that the only people that get cfs are rich older women that are bored with their husbands (the cheek of it!) That changed my perspective on the medical system alot.

Hi Xlynx,

Welcome! Thanks for sharing your story. Just when I think I've heard it all, I hear another bizarre doctor story like the one you share above.

I went to a clinic once where my regular nurse practitioner was unable to see me, so a doctor (and head of the clinic) filled in for her. He scanned my chart for a few seconds, looked up, and asked me what I did for a living. I said that I wasn't working because of my health circumstances (which my chart would have shown). Anyway, he immediately launched into a lecture on how you need to work to have self-respect.

Seems most of us have a good ol' bizarre doctor story to tell. Thanks for sharing. Good to have you aboard!

Wayne

 

[xlynx]

Thanks everyone for replying and nice to meet you all, I am feeling far more comforted and am hoping that will have some influence.

Hi Frickly can I ask you what is the treatment for EBV? I have high EBV antibodies and one doc suggested that I might be having a recurring issue with that?

Hi Wayne, Thats terrible, doctor definitely didnt take in to account your symptoms properly before making judgments on you. I am sure that most doctors dont even listen to the symptoms we talk about, they just look at the chart and say blood test looks go and everything fine. Then you say what about all my symptoms and they point at the chart and say look everything is fine.

Btw is there any way to auto subscribe to a post here instead of having to select it from the top? Keep forgetting

 

[Frickly]

Hi Xlynx

I have been getting injection of Glutathione/ATP weekly for many months. This is an antioxidant that is also a natural anti viral. I tried a prescription anti viral (cant remember the name right now) but it gave me terrible chest pains. My doc said it many have been an allergic reactiton. She put me on weekly Glycyron plus injections (Glycyrrhizin) about a month and half ago. This is a natural anti viral that is also an immune builder. It is used for CFS, Fibro, auto immune issues and chronic infections. This has helped alot. I have much more energy and the rashes and fevers have lessoned . These two things have helped tremendously with muscle fatigue and fatigue in general. I know it is difficult to find a doc that is familar with the above but I do recommend them. Hope this helps a little.

Take care,

 

[xlynx]

Hey Frickly

I have been taking Glutathione orally as mine was low on bood test but my doc doesnt want to inject me even though I begged him lol.

Glad to hear its working for you, thank you for the info. I might have a go at doing that at some stage.

Take care

 

[Frickly]

I wonder why he won't inject it? Many people think that taking it orally has little benefit. My doctor feels that injections or IV therapy are the way to go. Next time you see him you can give him my docs name as she is known for glutathione/ATP therapy. I wonder if he would feel better about it if he had more information? Good luck.

My doctor is Patricia Salvato in Houston, Tx

 

[kat0465]

Hi Frickly,
i too see Dr Salvato. i read your post and ws interested in the Glycyron plus injections, as she has never brought them up.
she has me on oral inteferon for an antiviral, i was just wondering of you could give me some more info on the shots? what are they made from & do you thnk they make a difference?
thanks, Kat

 

[Sing]

Palpitations

Hi Xlynx!

Thought I'd add my 2 cents about palpitations. The only time I get them is when my blood pressure is too low and not doing the job to get blood to the brain. Example might be trying to walk uphill in the morning or hurrying faster than I should, to stay in balance right then. What a doctor explained to me was that a back up system is kicking in to try to fire up the system more to raise the BP etc. What has helped me, actually, is eating more salt. Salt in the evening is good to set me up for a better moring, in terms of low blood pressure and orthostatic intolerance.


That was a mouthful!

Cecelia

 

[Martlet]

Hi xlynx, and welcome.

I just want to add my own two cents (or two penneth) to this discussion, which is really a question. I'm assuming your doctor checked your heart before prescribing the beta blockers?

 

[xlynx]

Hi Cecilia,

Interesting about higher salt take at night to improve the morning. I will definitely try that as I have low blood pressure and the mornings are worst!

Thanks for that tip.

Hi Martlet, lol two penneth

No my doctor did not check my heart before giving me beta blockers (he was an emergency doctor in the hospital and completely useless) I have had it checked now and am off the beta blockers. I think the palpitations are due to exhaustion, CNS problems and low blood pressure and probably too much time flat in bed.

 

[Sing]

Palpitations as a Back up function

Hi again, Xlynx,

I want to expand my hypothesizing here: Bodies are like musical bands. With ME/CFS, there is a slow down with some key players. These can't effectively be speeded up--that is, without sacrificing good functioning. So then, the need is to slow the other players down enough and integrate the band's playing at a slower tempo. This is pretty much what I have learned about my own body.

As I mentioned, my understanding is that palpitations can be the result of the brain and endocrine system trying to get the slow players to speed up, or at least to compensate for their failure to deliver on something very necessary--blood flow to the brain! Something as important as that won't have just one means to achieve it--there are backups. But these don't work nearly as well and are uncoordinated in their styles. Think, "understudy".

Cecelia

 

[xlynx]

Hi Cecilia,

that a beautiful was of putting it.

Uncoordinated is certainly the correct word for me. My body splutters and chokes to try and keep the orchestra going.

The irony of it all is that I want to slow down but my nervous system wants to go at chaotic speeds.