Is This Chronic Fatigue Syndrome

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I have been sick for over 6 months now, have seen many doctors, and really still have no answers.  I have been told by 3 doctors that it is possible that I could have PVS/ME, but really no diagnosis has been made.  I fell ill back in Feb 2016, with a bad cold and flu and have not been the same since.  It started with pain in my calves, and moved to a weak face, arms and legs.  Extreme fatigue, brain fog, loss of concentration, and a general unwell feeling.  I have been tested for MS, MD, thyroid issues, RA, vitamin deficiency, and all blood work comes back fine.  I recently saw a rheumatologist who said he could only be about 60 percent sure that I could have RA or a form of lupus, but nothing comes back in the blood and I have no joint damage.  It is hard to go with a diagnosis when there is no proof, and the doctor is not even sure.  I have had bad night sweats, anxiety; depression is starting to set in, joint pain, stiffness in the hands and legs.  The symptoms just keep coming.  Has anyone else experienced this?

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  • Posted

    Hi Jessica  I would be 99% sure you have fibromyalgia/chronic fatigue/ME/ - there's such a huge crossover of symptoms that if you stuck a pin in the list you will prob find you have one or all of the above.  do you also have lactose and gluten intolerance all of a sudden?  hot flushes/flashes?  unable to tolerate even a smallest amount of aclohol?  unable to control you body temperature? over the top emotionally - my husband just has to look atmewrong and im either in tears cos im angry or in tears cos he made me sad??  about the only peoplei can bring myself tobecivil with are my daughters and grandchildren!

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    • Posted

      Hi Peta, thanks for your response. I don't have issues with dairy, but as of a week ago decided to go gluten free. Since I have been sick I can't drink alcohol at all I get very I'll if I do. My biggest fear is being diagnosed with something I don't have.

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  • Posted

    Oh yeah. There are currently no biomarkers for ME/CFS. However, a qualified specialist should be able to make a diagnosis. I was diagnosed after my bloodwork came back normal. I went to a specialist who asked a bunch of questions. On the basis of my bloodwork, a physical examination, and these questions, he determined that I had ME/CFS. I'd only had the illness for 3 or 4 months at that time. I mentioned to him that some of the literature suggested you had to wait 6 months for a diagnosis, but he was totally firm in his diagnosis. There is no cure for ME/CFS, however sometimes symptoms can be treated. For example, I found that meditation greatly helped my anxiety and depression. To maximize your chances for a recovery (and people can recover), get plenty of rest and pace yourself. If you keep pushing through the fatigue, going outside of your energy envelope and crashing, you may lessen your chances to recover. Get a good night's sleep if you can. And de-stress in whatever way you can. Recently, my rheumatologist thought I might have developed lupus, but did a very specific blood test that ruled it out. 

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    • Posted

      Thanks for your response Jackie, all very helpful information. Unfortunately the rheumatologist I have been seeing really brushes off me/cfs I got the feeling he was not a believer of it. Which in my mind was completely rediculous!! I do have a great GP that has now referred me to a new doctor, so I have hope that this will eventually be resolved. Have you experienced pain or weakness in your face?
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  • Posted

    I have! Same symptoms as yours same doctors and same tests, after a viral infection on side of the mouth I got treated with regular amoxicillin, about 10 days later I started experiencing exactly what you have. I felt like you do for 6 months plus, knowing I would have never felt normal again! After 8 months I can say that my muscles are way better and I don't feel as tired as before I recovered about 95% now, the diagnose:Post viral syndrome! I promise you will get better!

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  • Posted

    Are you in the UK? If so, google who is the CFS specialist in your area, it will be a Rheumatologist and try and get a referral to that person. I had to go privately and travel some 50 miles but with all the tests already done and answering his questions he confirmed that I had CFS. 

    The good news is that I am well on the road to recovery but I had to do it all myself, no help from anyone. I did it with pacing on the basis that I was trying to run a marathon but I hadn't learnt to walk yet! Sounds impossible, but after 2 yrs I can now cycle 40 miles....... 

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  • Posted

    Oh dear!  Jessica, you seem to be dealing with the whole enchilada of Me/CFS complaints!  I'm so sorry.  And, in answer to your question, yes, I have experienced most of the yucks  you listed.  This illness is a challenge, and I wish you strength and a sense of humor.

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