Could this be CFS?

[mckay]

Hello, I am looking for a little advice. I am new to all this CFS stuff and at this point am not even sure I have it, but with no answers from my doctors, my research as lead me in this direction. I will try to keep it short. I am a 36 year old healthy female and typically an energetic person. I live fairly healthy with the exception of many years of binge drinking on the weekends and such. In the spring of 2008, I came down with what I thought may be Swine Flu (never found out for sure) as I was sick as I had ever been and Swine Flu was going around at the time. I was sick for almost a week but slowly recovered. After that, every 3-6 weeks, I started having recurring boutsI called them my fluish episodes. The episodes would be mild and as short as a day or as long as 4-5 days and put me in bed for a couple of days. I can not stress how sick I feel during these episodes, there is a reason I call them my FLUish episodesI feel like I just want to die. I take motrin which helps a little with my symptoms, but I can only take so much motrin. My symptoms with these episodes are always the same and come on suddenly:

- Often starts with a sore throat
- Severe brain fog, head feels heavy
- Fatigue
- Muscle aches (mild and usually just the first day)
- Weakness
- Headaches
- On and off nausea
- Dizzy spells
- Hot and cold spells
- Feel like I need to pass outSO TIRED!
- Often IBS issues


I just feel extremely out of it and not right. At times I will go 3-4 months without any severe episodes, just mild bad days that never turn into a full blown episode. That went on for 3 years until this Feb. In Feb I started having panic attack type episodes. I didnt know what was going on and went to the ER 3 times. I had many tests done and have always been told they cant find anything and that it was probably panic attacks. I was confused because I was not panicky but I was told (and read) your body can set off panic attacks from illnesses, stress, and viruses. For 4 months I was having these recurring attacks that often would afterwards put me in bed for several days. I was told it was my body recovering from the panic attacks, but now I realize it was the fluish episodes maybe set off from the stress on my body from the panic attacks. Right now I am in the midst of a 4 day episode after a panic attack 4 nights ago and have been in bed for most of it. In between episodes I often forget how bad I feel and how scared it makes me. Even when I am not in an episode, I dont feel real greatI still seem to have symptoms but at a muted level. I am not really sure and like I said, just looking for direction. I have been to the cardiologist, endocrinologist, and internal medicine. I have a follow up appt at internal medicine and I am considering bringing up with my Dr the possibility of this being CFS. Looking back, I really didnt feel the best for a lot of years, but I was drinking so much and running myself into the ground so much so I just thought it was that. For those wondering, I have cut my drinking to an occasional glass of wine, so I know now for the first time in my life that feeling like crap all the time is not a result of drinking. This really has taken a toll on my lifeI am grumpy all the time because I dont feel well and I have had to quit my job. I am trying to think positive, but it is hard when you are suddenly sick with no answers as to why. Thanks to anyone who has read this and can offer any insight.

 

[Valentijn]

Welcome to the club! It sounds similar to how I was before I became a chronic case ... just getting sick ALL THE TIME, which in retrospect correlated to trying to exercise and being extra active.

I think anxiety isn't too unusual in ME/CFS either. Did anyone check your neurotransmitter levels? They get funky for at least some of us, and some are capable of causing depression, anxiety, etc.

With regular heavy drinking, B12 deficiency (and maybe others too), are a likely factor. Most of us (I think a poll here said 90%) can't drink at all, and you might start feeling better if you avoid even that little bit of wine :-/

Fish oil (omega 3) may help with the head pain, and B12 at a high dose (1-10mg) usually helps with the muscle symptoms somewhat. But the best thing to do, if it is ME/CFS or "pre"-ME/CFS, is to find your threshold for too much exertion, and don't try to push it. That can make things a lot worse.

 

[AndrewB]

There's quite a few things this could be, and before rushing to get an ME/CFS diagnosis, insist your GP run a complete course of tests on you.
Heres some links that might help explain some of what your going through as an alternative to ME ;

http://www.stopthethyroidmadness.com/hashimotos/ ...............Tyroid
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome ..........Postural orthostatic tachycardia syndrome
http://www.gilbertssyndrome.com/symptoms.php .......Gilberts Syndrome (causes toxins to build up,makes you feel terrible)
http://www.nlm.nih.gov/medlineplus/ency/article/000358.htm ........Autoimmune disorder (causes Flu symptoms you describe)
http://www.webmd.com/diet/vitamin-b12-deficiency-symptoms-causes .....B12 (lacking this will make you feel horrible, heavy drinking can be the root of it)
http://en.wikipedia.org/wiki/Multiple_sclerosis .....MS (can cause symptoms very similer to ME/CFS)
http://www.webmd.com/brain/understanding-myasthenia-gravis-basics .....Myasthenia Gravis (muscle weakness, very important to rule this one out)

Hope these links help.
Its taken me a year to get a diagnosis and its not the news i wanted. Depending on what country you live in will determine how well, if at all, your treatment and diagnosis goes.
I do hope you havent got ME/CFS, but its not all doom and gloom, some people can carry on woking and lead semi normal lives, heres a link to Cher's battle with the illness,
her onset was viral too, like mine ;

http://www.celebrities-with-diseases.com/celebrities/cher-suffers-from-epstein-barr-virus-6792.html

My personal advice is get plenty rest, take Vitimin C (1000mg) a day, and take fish oil for joint pain and headaches, try to avoid heavy pain killers if possible, they can be a great help in the short term, but if Gilberts Syndrome is present, medication makes you worse over time.
Good luck and best wishes.

Andrew

 

[Wonko]

It could be a lot of things but it is similar to how I was for several years after onset, before my first major crash. I'd advise you invest what resources you can muster into rulling out other things at the moment, as trying to maintain a normal life will just perpetuate the rollercoaster you've been experiencing.

 

[richvank]

Hi, mckay.

It does sound as though ME/CFS is a likely possibility in your case. Alcohol produces oxidative stress, and over time the binge drinking could have pulled down your glutathione levels, which is the front door to ME/CFS in the Glutathione Depletion--Methylation Cycle Block hypothesis that I have proposed and that seems to fit most cases of ME/CFS. Your symptoms match ME/CFS well.

I would suggest that you cut to the chase and run the methylation pathways panel. It costs $295 in the U.S., which I'm guessing is where you are located, since you write like an American! It requires an order from a physician or a chiropractor. The contact information is pasted below. You can find an interpretive guide as well as background on the hypothesis in my documents, which are posted in the Wiki section of these forums (under General Wiki).

If it turns out that you have a partial methylation cycle block and glutathione depletion, over-the-counter targeted supplement treatment is available which is fairly inexpensive and has been helping quite a few people. This type of treatment is discussed in the Detox and Methylation section of these forums.

I hope this is helpful.

Best regards,

Rich


Methylation Pathways Panel

This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

The panel requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinicians letterhead.


Available from:

Health Diagnostics and Research Institute
540 Bordentown Avenue, Suite 2300
South Amboy, NJ 08879
USA
Phone: (732) 721-1234
Fax: (732) 525-3288

Lab Director: Elizabeth Valentine, M.D.

Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone.

 

[mckay]

Thanks so much everyone for your replies...Yes, I am in the US, currently Nebraska. Right after posting this I called my doctor to see if they could get me in and I was shocked, but they just had a cancellation 10 seconds prior and could get me in. Normally it takes weeks. Of course my doctor said he has nothing, but since I have had increased dizziness and balance here and there, he is going to do an MRI. I dont anticipate it showing much, but it will be a piece of mind and you never know. After that he mentioned it may be physiological things in my brain at which we could start trying different medications by trial and error, but I am not ready to just jump on the medication wagon yet and definitely want to be more informed before I do. I brought up CFS and he said I could be having CF symptoms but kind of brushed it off saying that even if it was, there is no test for it to know for sure. I am going to start taking my B12 again (cant remember why I stopped), and stay away from alcohol. Andrew, thanks for the links...I was diagnosed with Gilberts syndrome a few years ago and was told by my doc in Feb when all this started that I was having POTS symptoms and to eat salt. I also have low heart rate and low blood pressure increasing my sale intake seems to have helped a little. I am new in all of this and while it is still very confusing, every little bit that I learn is important. Rich, I will do some research and look into your test depending on the outcome of MRI and how the next couple of weeks go. Again, thanks everyone, I am sure you will see more of me!

Mckay

 

[mellster]

Hi mckay, the swine flu appeared 1st time in spring 2009, so it's unlikely unless you got the year wrong. Other than that the viral infection onset is fairly typical for CFS/ME. Get as much rest as possible and pace yourself until you get more clarity

 

[Tony Mach]

Sounds like ME/CFS to me.

BUT.

You should check out some of the differential diagnosis' AndrewB mentioned, especially the thyroid (unless you have already done that).

And do you fluish episodes come after something that is demanding physically or cognitive? That would indicate ME/CFS.

And POTS is common in ME/CFS (about 40% according to Alan Light).

Regarding the panic attacks:
While I'm not sure what helped me, I think it was getting rid of grains and milk products. And I eat very little potatoes (once a week at max.). I started with a Atkins diet, but now I eat Paleo/Primal.

One more tip:
Learn to pace (break every longer task down in smaller bits and make rests in between), minimize the time standing (or make make breaks, sit down) and try to keep your heart-rate down (no anaerobic tasks, better slower than fast).

 

[Tony Mach]

One more thing:

It usually isn't swine flu. Most commonly "flu" (or "influenza-like illness") is caused by enteroviruses, rhinoviruses, metapneumovirus, respiratory syncytial virus, adenoviruses, parainfluenza virus or influenza (only to name a few)

And enteroviruses are suspected by some (e.g. by John Chia, Melvin Ramsay, James F. Mowbray) to cause ME/CFS.

 

[Boule de feu]

SO FAMILIAR

Everything you are describing sounds very familiar. It is what I am experiencing every day. You have FLUish episodes, I call those "Head over the garbage can" days. I get so sick, I can't function.
I did not get the panic attacks, but at the beginning I got shortness of breath, extreme vertigo, dizziness, and extreme pain in my head and chest.

You might be interested in Dr. David Bell's on-line book. See if some of the cases are similar to yours:
http://www.davidsbell.com/Faces_of_CFS.pdf
I really enjoyed this book. I hope it helps.

Take care and good luck in your search.
BDF

P.S. This part of the disease is not fun and it is a long process to go through.
Don't despair. You will get the answer. =-)

 

[*GG*]

here are a couple of links to perhaps find a better dr?:

http://www.co-cure.org/USA_NE.htm

http://www.acamnet.org/site/c.ltJWJ...nk__18005323688_/apps/kb/cs/contactsearch.asp

GG

 

[Julie Curtis]

Could I have CFS?

Hello, I'm searching for an answer to my health problems. I've not hardly been sick a day in my life before this year. I am a 51 yr female. I have chest pressure, sore throats, fatigue (to where rest does not help) coughing, breathing difficulties, dizziness, shakiness and shortness of breath. (especially while talking) I've been to the Dr's 5 times this summer with no results. I've had a chest xray, blood work, scope of throat and ekg. Do these sound like they could be CFS symptoms and what kind of a Dr would I go to? Thank you to anyone who could give me some advice.
Blessings

 

[richvank]

Hello, I'm searching for an answer to my health problems. I've not hardly been sick a day in my life before this year. I am a 51 yr female. I have chest pressure, sore throats, fatigue (to where rest does not help) coughing, breathing difficulties, dizziness, shakiness and shortness of breath. (especially while talking) I've been to the Dr's 5 times this summer with no results. I've had a chest xray, blood work, scope of throat and ekg. Do these sound like they could be CFS symptoms and what kind of a Dr would I go to? Thank you to anyone who could give me some advice.
Blessings

Hi, Julie.

This sounds like a respiratory disorder to me, maybe an infectious one. You might try a pulmonologist or an infectious disease specialist.

Best regards,

Rich

 

[Vitalic]

the onset of your illness almost exactly mirrors my own although it was summer 2008 and i also thought i had caught swine flu, it kept coming back etc. very weird to hear someone report exactly the same circumstances

the key question is do you suffer from PEM (post-exertional malaise), if you have that then given your description it's almost certainly CFS/ME.

 

[Valentijn]

the key question is do you suffer from PEM (post-exertional malaise), if you have that then given your description it's almost certainly CFS/ME.

And keep in mind that the delay between the exertion and the PEM can vary quite a bit. I didn't realize I had PEM until the delay was an hour or two between exercise and getting very sick (and even then it took me a couple weeks to put the two together). But for many years prior to that I think I had a delay of a day or more, which prevented me from figuring things out because the trigger and the result were so widely separated.

 

[taniaaust1]

mckay. It sounds like probable early ME/CFS.

Mine was on and off like you described for the first 9mths before it went full time leaving me bed bound for 9mths and then housebound. With my early ME/CFS it wasnt set off by exercise (that came in my case later on in my illness) but rather by things like going out partying all night and hence not getting any sleep or studying for exams etc.

Take care... I suggest to stop all alcohol (most with ME/CFS become completely intollerant to it, its like poison to ME/CFS patients) and it may end up causing the other food intollerances etc which happen with this illness to happen sooner). Up to 90% of ME/CFS patients have POTS, so you having POTS fits with this disorder (panic attacks can be part of ME or POTS). I suggest to check out http://www.dinet.org/symptoms.htm (as POTS itself can cause a ton of different symptoms) and also http://wwcoco.com/cfids/bernesx.html (for a more complete ME/CFS symptom list based on studies)

After that he mentioned it may be physiological things in my brain at which we could start trying different medications by trial and error, but I am not ready to just jump on the medication wagon yet and definitely want to be more informed before I do. I brought up CFS and he said I could be having CF symptoms but kind of brushed it off saying that even if it was, there is no test for it to know for sure. I am going to start taking my B12 again (cant remember why I stopped), and stay away from alcohol. Andrew, thanks for the links...I was diagnosed with Gilberts syndrome a few years ago and was told by my doc in Feb when all this started that I was having POTS symptoms and to eat salt.

I think you'd best start looking for a doctor of some kind (could be any field as there are so many different things which go wrong in ME/CFS) who specialises in ME/CFS. ME/CFS patients commonly get bad reactions to certain kinds of drugs etc and a doctor who is messing around thinking you just have psych issues could be needlessly give you drugs which dont usually help ME/CFS patients and may end up making you worst (depression with this illness can end up happening due to having bad doctors who arent paying attention that you are really sick). Best to find a specialist in it now rather then going into a panic and trying to get one when one finds oneself much sicker.

best luck

 

[taniaaust1]

Hello, I'm searching for an answer to my health problems. I've not hardly been sick a day in my life before this year. I am a 51 yr female. I have chest pressure, sore throats, fatigue (to where rest does not help) coughing, breathing difficulties, dizziness, shakiness and shortness of breath. (especially while talking) I've been to the Dr's 5 times this summer with no results. I've had a chest xray, blood work, scope of throat and ekg. Do these sound like they could be CFS symptoms and what kind of a Dr would I go to? Thank you to anyone who could give me some advice.
Blessings

Those all can be ME/CFS symptoms but you havent said many of the ones which most have which stand out in ME/CFS which arent so respiratory related eg most with ME/CFS get insomina, headaches, muscle pains, IBS, post exertional symptoms, low BP or dysregulated BP etc.. your sore throat thou makes me wonder if you could be a mild or developing case of slow onset.

But on just what you said (unless there is much more you havent said).. I'd think you probably may have something else which the doctors have missed (sometimes its better to see a specialist then keep going to different GPs). If you get more symptoms affecting other areas of your body, I'd then say suspect ME/CFS and then at that point maybe seek out a ME/CFS specialist. Check out http://wwcoco.com/cfids/bernesx.html which will give you more an idea of the larger range of symptoms most ME/CFS patients get.

Seeing you have a sore throat with your respiratory issues so one would think a virus or infection.. maybe you have something like Mycoplasma pneumoniae? (not all with it get actual pneumonia and it can last quite a while) (its one of the things my ME/CFS specialist did a blood test for as he noticed I was coughing one day) http://en.wikipedia.org/wiki/Mycoplasma_pneumonia

See if your doctor can send you to a respiratory/Pulmonology specialist http://en.wikipedia.org/wiki/Pulmonology

 

[taniaaust1]

deleted double post.. sorry.