Do i have fibromyalgia/CFS

[cynthiagreen]

Hi, i'm 26 year old female i'm new here hoping to talk to others and get some advice.
for the last few years i have not had great health, i get sick all the time, everything fromcols to viruses to pneumonia to mono
the last 6 months it has been just about everyweek. i feel better for a few days (like now) then i get sick all over again.
my symptoms are
tired (constantly)
stuffy nose(almost constantly)
weakness(constantly)
pain all over body, thighs, arms, hips, back, neck ( constantly - comes and goes)
headaches
no energy(almost constantly)

I have been to the doctors heaps i just get told i have a virus or whatever and that it is going around and i am just proned to getting sick and it's normal.

I'm not too sure what to do, if my doctor is right i must be on sickly person and i did not realise that getting sick weekly was normal

hopefully someone might be able to help me, i have listed everything(i think) i really am at my wits end

[raerae0027]

Not at all,,I completely understand how you feel,,and hope that you get the answers you need,,and quick.  :)  have a good 4th

[cynthiagreen]

Sorry if i seemed smart, it's just taking it's toll on me

Hugs

[PlateletGal]

You do have plenty of support here. I can relate.... and I think your symptoms are CFS, rather than fibro. I hope the link that I sent you was helpful (physicians in NZ)

Hugs,

PlateletGal

[raerae0027]

sorry my MSG was not clear I meant I know it ***** being told,,sorry :)

[raerae0027]

Hi,,,,you know about your body more than anyone if you feel its not because of a virus mos def get to a doc and have them test you for the Fibro. Do you have the typical tender points,,I know it ***** being told one thing when you feel its something else.  I hope you can find the help you need and get better soon.

[kitonthemoon]

There is a ME/CXFS support group in Christchurch you may want to contact....so they can direct you to a proper doctor for your symptoms.  Like others who responded, I suspect that you may be on the road to ME/CFS.  If not, they should be able to refer you to a doctor who understands

http://canterbury.cyberplace.co.nz/community/MECFS

I had few bouts of pneumonia prior to my diagnosis too.    Take care.  You have plenty support here.  Hugs,

Kit

[cynthiagreen]

Thanks for the comment but if it is a virus, then i have had it for around 8 months, you get mono  when you have the epstein Barr virus, and i caught phneumonia after having mono, i have been doing some reaserch, and they say you are more likley to have fibro after having a really bad infection ex: epstein barr - mono - pnemonia

[raerae0027]

I hate to say this but it does sound like a virus.  By your symptoms I dont get the feeling you have Fibro especially if you have had pheno,,mono and such others it sounds like your body was deprived of so much being sick so often and your immunity is down which make you even more suseptible to virusis.  I would find a good Intenal Medicine doc they are really good at diagnosing so many differnt types of diseases,,viruses so on.  I hope that you can get feeling better soon,,its no fun being sick everyday.  Good luck :)

[droopy56]

The first thing you have to do is find a doctor who isn't a total idiot (yes, there are lots of them out there). I suggest seeing a neurologist or a rheumatologist. Rheumatologists are the ones who (supposedly) are the most qualified to treat fibro. My fibro dr. knows her stuff about my condition and the first thing she did was identify my tender points. if you don't know what those are, any fibro website can describe them. A neurologist did a series of tests to rule out all of the other conditions (i.e. MS, stroke, seizures, etc.), and then sent me to my fibro dr. It certainly felt so much better when I found out that I wasn't imagining my pain and fatigue (the idiot VA dr told me it was just stress and said I should take up stress-relieving activities). The main thing is, hang in there and don't give up!

[kitonthemoon]

Welcome, Cyhthia.

That's was the begining of my ME/CFS as well.  I wasn't diagnosed until my total collapse.  

If you can.....try and take a long vacation and just rest up (if you can afford to).   You're very young and will recvoer if you can nip this thingy in the butt.  Even with ME/CFS, your age and early diagnosis will be a definate advantage.

Hugs,
Kit

[cynthiagreen]

Thank you so much for your help

[PlateletGal]

It sounds like CFS and exactly what I went through. I'm going to send you some information, including labs that I've had done to help rule out other conditions.

The CFS experts say the sooner you treat CFS... the better off you are. I'm also going to send you some information on various treatments.

[cynthiagreen]

I have also found that i can't do much physical activities, as it makes me worse
ex: if i do housework, i get exhausted quickly and once that happens i'm, stuffec for the rest of the day.

Daily routine (What i can manage at the moment)

get out of bed (Wake up tired)
go to work 9am to 5pm (get more tired throughout the day)

get home around 5.30 have to go lye down cause my body feels exhausted, after an hour i feel like i got a bit more energy so i get up and try to do a few things, but then i lose my energy quickly and end up back in  bed, i get 8-10 hours sleep daily i think i'm sleeping alright, but i always wake up tired the next day

[cynthiagreen]

Unfortunatley i'm not being treated - my doctor doesn't seem to be able to put 2 & 2 together, the way it's coming across to me is that i'm just catching viruses every week.
I did get a second opinion, she thought CFS was a definate possibility, she did a blood test to rule stuff out and it came back with EBV, she said i had glangular fever in the past and she left it at that.
I have not been diagnosed yet, i have given up on doctors as i can not get a straight forward answer.

[PlateletGal]

It very well sounds like you could have CFS. I've posted the CDC's symptoms of CFS (of course there are other symptoms such as ringing in the ears, dizziness, etc. etc.)

I hope your physicians have ruled out other possible conditions, including lyme disease and autoimmune illnesses.

Remember if your physicians diagnose you with CFS, it will stay in your medical records for life. It is important to keep continuous healthcare coverage after you have a diagnosis.

So how are you being treated ????



Defining CFS Symptoms

CFS is marked by extreme fatigue that has lasted at least six months; is not the result of ongoing effort; is not substantially relieved by rest; and causes a substantial reduction in daily activities.

In addition to fatigue, CFS includes eight characteristic symptoms:

postexertional malaise (relapse of symptoms after physical or mental exertion);
unrefreshing sleep;
substantial impairment in memory/concentration;
muscle pain;
pain in multiple joints;
headaches of a new type, pattern or severity;
sore throat; and
tender neck or armpit lymph nodes.
Symptoms and their consequences can be severe. CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, congestive heart failure and similar chronic conditions. Symptom severity varies from patient to patient and may vary over time for an individual

source:  http://www.cdc.gov/cfs/cfsbasicfacts.htm