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CFS/ME

Posted , 8 users are following.

louise39274
louise39274

I was diagnosed with M.E in 2010.  One doc says it M.E. and another says it's CFS. I'm confused !

0 likes, 18 replies

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  • david59662
    david59662 louise39274

    Posted

    Hi Louise, what about PVF, post viral fatigue ? LOL You could have have that as well. Joking aside i know what you mean. PVF is my official diagnosis.

    I've been confused with it all (CFS/ME/PVF) since my 10 months of this as they all come under the same bracket but they are ALL different in my view. I believe ME means you would have provable (MRI) inflammation of the brain and also pain in some area/s of the body, ie;Myalgic encephalomyelitis myalgia means pain ,encephalomyelitis means inflammation, whereas CFS is generally just from the diagnosis of the patients description of how they are feeling ie;fatigue maybe other symptoms. Anyway you will want to get better, for me i am convinced my issue is adrenal fatigue coupled with mild gut dysbiosis. and this is overlooked by standard medical doctors. I've had tests to prove my gut healh is not good and my adrenals are nto optimal which is why traditional docs don't find anything as our bodies are not fully sick (life threatening) just a mild form of sickness. You might want to look into private testing  of your adrenals (24hr saliva test) or just skip the tests and buy some adrenal products to try for a few months to see if you improve. Prior to my diagnosis i was a very fit triathlete 8+years, now i am reduced to 30mins walking most days andgenerally feeling lifeless at 34. If i do too much (maybe 60-90mins walking/day total) i suffer the next. People with adrenal fatigue can recover 100%.

    Good luck !

    • louise39274
      louise39274 david59662

      Posted

      Thank you David. PVF that's new one for me.  I get aches and pains, total exhaustion etc and brain-fog which I've got right now.

      I will certainly be looking up on the book you reccomended.

    • david59662
      david59662 louise39274

      Posted

      I've been researching my PVF for at least 6 months full-time as i had to stop working because of my health. It's been a nightmare and i have been tested for everyhting under the sun from lyme disease to lupus.

      I'm living off the life savings in the HOPE within the next 6-12 months i can recover to an acceptable level. Adrenal Fatigue book when i read it and when i correlated it to my own set of symptoms made perfect sense. I'm now taking some supplements to help, feeling better should be within one month of course the adrenals take a long time to heal properly so it can be upto 2 years (worst case scenario). Good news according to the book is that the adrenals can heal even stronger than they were to begin with with appropriate supplementation and essential is plenty of rest and good nutrition.

    • jeanp
      jeanp david59662

      Posted

      Thanks David, hadn't heard of that book, but sound informative.

      I hope you find a way forward, at your age to be struggling with walking too far is tough, especially as you used to do triathlons. I haven't got an official label so I am just saying it is CFS to myself as symptoms correspond. It does seem to me that most GPs seem to be trained to diagnose and treat with pharmacological products, or else CBT, rather than a holistic approach with diet, activities and lifestyle. Our best chance of recovery, I believe, is to find out as much as we can about the way our bodies work and try and live in such a way that they heal themselves as much as possible.

      Jean

    • david59662
      david59662 jeanp

      Posted

      Absolutely Jean. All the GP offers me is prozac !!!!! I find it sad how diet, lifestyle and potential supplements are not even mentioned as possibilities to help.

      ' I believe, is to find out as much as we can about the way our bodies work and try and live in such a way that they heal themselves as much as possible.'

    • jeanp
      jeanp david59662

      Posted

      Yep, I'm with you on supplements, but not some of the weird and wonderful ones in the health food shops (apologies to anyone who finds them helpful, not trying to diss your choices, it's just I could spend a fortune which I haven't got!)
  • JulieBadger
    JulieBadger louise39274

    Posted

    Hi Louise, CFS and ME are the same thing, they are just different names for exactly the same condition. PVF is I believe if you have suffered after an operation where as CFS/ME can be after an illness or just start.  ME is a prefered name by many of us  who are suffers because we believe having just fatigue in the title is too limiting re all our symtoms.  Therefore maybe down playing the overall difficulty of living with ME/CFS. 

    I've been a sufferer for 21yrs now and mine we believe (although I was 14yrs old so can't really remember) maybe came from me having Fibromyalgia.

    Those who got it after an infection have more of a chance of recovering fully I believe.  As I have had mine so long it is believed I will never recover. 

    Although I have ME I do not have any inflamation of the brain or spine.  I have been diagnosed properly by the ME/CFS department.

    Bascially they are just titles of things that are very similar.  Because they don't know what causes it fully they can't properly separate the titles. That's my thoughts anyway.

    • david59662
      david59662 JulieBadger

      Posted

      Hi Julie, have you ever had your adrenals tested ? Have you ever had your gut health properly looked at ?
    • JulieBadger
      JulieBadger david59662

      Posted

      To be honest I really wouldn't know. I get blood taken and then hear it's clear all the time for whatever they are testing. My short term memory can't hold new information very well. So I just nod and smile. When the doc changes my medicine I don't know what it's supposed to improve cos I can't remember by the time I leave the docs room.

      I miss my memory!

  • OliverTatlow
    OliverTatlow louise39274

    Posted

    Hi Louise. I know what you mean. I find a lot of the terminology quite confusing as well. As far as I know CFS and ME are just 2 different names for the same thing although exactly what that thing is is a bit vague and not very clearly defined. It often means that a person is chronically unwell but the doctors can't find anything physically wrong with them so I'm inclined to think that a lot of people with ME may have simply been mis-diagnosed.

    I was diagnosed with ME/CFS in 2009 and have been suffering with gradually worsening symptoms for 5 years. I recently had an MRI scan that found a brain tumor. Now the neurologist says that it's probably a slow growing tumor that has been there for a long time and has very likely been the cause of my illness all along.

    If you haven't yet had an MRI scan then I would advise you to do so to rule out the possibility of any neurological abnormalities. You may have to push the GP to refer you as I asked about it several times and was always fobbed off and told that I didn't need one.

    I wish you all the best and hope you kind find a way to get well again.

    • louise39274
      louise39274 OliverTatlow

      Posted

      Yes, I thought ME and CFS were the same thing.  Sorry to hear about your tumour Oliver sad

      Julie, I had a hysterectomy in 1991, cervical cancer, could of been the start then.  I didn't need chemo or anything like that, just an op.

       

    • JulieBadger
      JulieBadger louise39274

      Posted

      I know a person who got ME after a tooth was removed (it was a really bad one involving breaking the jaw etc). 

      If it's because of having the operation it might be emotionally easier for you to accept ME/CFS. If you hade to choose between ME or Cancer I know which one I would choose.  Which is strange to think as you wouldn't wish ME on anyone.  (Well, maube just a few months of it for all those none believers of MElol) xx

    • louise39274
      louise39274 OliverTatlow

      Posted

      Oliver, I also have an underactive thyroid, which just complicates everything.  Seeing the endochronologist on Thurs, see what my bloomin levels are doing then !eek
    • lynne69494
      lynne69494 OliverTatlow

      Posted

      hi oliver, think l could write a book about all the people l know or hear of whove had chronic health probs or pain for years and going into the surgery asking for help support regularly, and been fobbed off by a gp, re its allergy, phycalogical, etc.  l think with some gps youve to push it for all its worth to get referral, scans.  l also had cancer, but that was fairly quickly diagnosed through blood test indicating abnormal platelets, oo platelets l thought. Thankfully l responded well to good treatment.  It was intersticial cystitus that went undiagnosed for many years, just for the want of a scope, which quickly diagnosed it, if only we could get these tests sooner, within months at least, save years with  a lot of poor health and affects on your life of it.  Anyway hope your treatment is as successful as mine, which was also a slow growing type, big cell l was told slower growing for me at least.

      Like Julie,s sentiments, wouldnt we all at times wish disbelievers, sceptics, cynics, could experience just a bit of others conditions, maybe we could say, its not phycalogical is it?, wink

      Good luck. 

  • scooper
    scooper louise39274

    Posted

    Hi Louise i too have drs calling it by these names my understanding is that the symptoms are basically the same. ive noticed though if i were to say i had ME i would get more understanding than if i said i had CFS, i always say i have CFS and the lack of understanding is frustrating grrrr
    • JulieBadger
      JulieBadger scooper

      Posted

      Yeh, totally agree.  I always use ME because it portrays have bad it is.  If you use the CFS title and have to explain it's Fatigue, people dismiss it more as oh you're tired? Like when they are tired and need to sit down for hour an hour for a rest then they're back on their feet again - if only!

      I'm all for scrapping the CFS title - I personally think it is downgrading the difficulty of living with this conditionexclaim

    • JulieBadger
      JulieBadger

      Posted

      Sorry for the bad typing above - looks like the brain and the fingers are not running at the same speed today - great.lol
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