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Completely Confused

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lisa16001
lisa16001

Hello, this is my first post. I have been feeling the extremes of being tired for the past 7-8 months. At first my b12 was slightly low so I have been getting b12 injections every 12 weeks. Then I was diagnosed with underactive thyroid and have slowly been uping the dose since before December. I'm now on 100mg and have felt no improvment even though my levels suggest normality. I take an antidepressant and my GP has upped that 50mg even though I am feeling fine. It wasn't until today he had mentioned CFS. To put you in the picture, I fall asleep all the time, during meals, during nights out. If i do any exercise I am exhausted for the next three days or so and can't move. I spend my life yawning and can become very confused and dazed and believe I have done things when I haven't which can be troubling when you work in accounts. I now generally struggle with every day life, I am late for work on a regular basis, it takes me over 2 hours to get up in the morning for work and at the weekend I just sleep. I am barely in my 20's and can't maintain a normal social life. In general are these symptons? What is CFS? 

Thanks

Lisa 

3 likes, 20 replies

20 Replies

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  • karin65289
    karin65289 lisa16001

    Posted

    Hi Lisa,

    It's not surprising that you feel confused, CFS is a confusing syndrome. I'm not sure what country you live in, so I looked up basic resources for the UK. Using the keywords cfs and UK, Canada, Austraila and USA will yeild loads of information and hopefully provide some support. 

    Chronic Fatigue Syndrome (cfs) is also referred to as ME (Myalgic Encephalomyelitis) and often is written as ME/CFS (depending what country you're in). Britian and Canada tend to use ME more than the USA. This information may be helpful when your are looking for further information and support. To complicate things further, last month the Institute of Medicine [IOM] which I think is US, recommend

  • karin65289
    karin65289 lisa16001

    Posted

    continued...

    The IOM has recommended that cfs be changed to Systemic Exertion Intolerance Disease (SEID). Along with the new name a new set of criteria has been set. In moving cfs from a syndrome to a disease is seen as a positive move by the National ME/CFS in Canada - it is also seen as a positive action by medical researchers in North America.

    You don't need anymore info than that - if four names for an illness isn't confusing enough...  Do some reading and please check out the new criteria for systemic exertion intolerance disease, I think you might be able to relate to that from your posting. For some people just taking a shower means planning the time of day when they have the most energy and then crashing afterward. 

    At my sickest I could barely get out of bed to go to the bathroom. I had a pot next to the bed. I couldn't hold a blowdyer up to dry my hair, or stand for more than a few minutes.  It sounds impossible unless you've been there. AND things do improve for most people. 

    If you can concentrate well enough to browse the web there is a wealth of information and national organizations who can provide information on disability status or whatever else you may need to know.  Cognitive challenges are a common symptom of cfs.  If you can't concentrate to read, know that, that is not uncommon and it will likely pass. (I went to graduate school and couldn't even read a simple children's book for years).

    I use the model of "energy units" to describe ME/CFS/SEID to people - each day one starts with X (unknown) units of energy : 1) they get up and walk to bathroom

    that uses X units, 2) they get a tea/coffee and sit down, using X units of energy

    by 3) they may have a simple breakfast or they may have depleted their energy units for that period of time and need to lay down... and so on. 

    The outstanding characteristic of ME/CSF/SIED is overwhelming exhaustion - the degree of exertion may be extremely minimial but may still yield extreme fatigue.

    The B injections are probably good - my doc told me that I needed a total B complex to better absorb the B12 I was getting a 3 CC injection weekly - it felt like an energy cocktail and lasted 3 days max. After my doctor retired I couldn't find another doc who would even consider such a large dose. Those B injections were the only thing I found that worked and believe me I tried every homopathic, naturopathic, traditonal, medical medication, supplement, diet...for fifteen years.

    Given your age, the prognoisis for recovery is good, so don't get freaked out if you do a lot of reading on this illness. Take good care of yourself. This is a good place to talk to people. 

     

    • lisa16001
      lisa16001 karin65289

      Posted

      Thank you, Managed to print off some leaflets to learn some more. I'm hopeful this passes quickly as its having a massive impact on my life. Thank you for sharing that with me smile 
  • georgeGG
    georgeGG lisa16001

    Posted

    It sounds all too familiar to me on almost all counts. I did eventually get over it. I am alarmed at the antidepressants. More these days is known about recovery so you may manage more quickly than I did. I still have to pace myself.

    I hope you beat this fairly quickly. There is no magic button to press or pill to swallow. I have posted my testimony five times in this group to different discussions. You will find a lot of help already posted.

    • lisa16001
      lisa16001 georgeGG

      Posted

      I will have a look. The antidepressants have been uped because my GP things I might be tired because i'm depressed even though I am sure I am not. I will have a look in the groups to see your testimony. Thank you. 
  • jackie00198
    jackie00198 lisa16001

    Posted

    Hey, Lisa. So sorry you're feeling ill. As others have mentioned, you can get lots of information from the Internet. Do a Google search on ME/CFS. Your symptoms do sound like you have the illness. But to be sure, you need to get a complete blood panel done to exclude other illnesses. There are no biomarkers for ME/CFS. Rather, it is a diagnosis of exclusion. One thing you should be very careful about is pushing yourself. I wish someone had said that to me when I was first diagnosed. You can greatly worsen your symptoms by doing too much, and hurt your chances for recovery. Also, unfortunately, you have to learn to advocate for yourself, since doctors are often misinformed. If you feel the antidepressant is benefiting you physically or emotionally, fine. Otherwise, I would not stay on a drug just because my doctor thought it would be good for me. If you do decide to get off it, do so very gradually. It would be good if you could get to an ME/CFS specialist, like an infectious disease doctor. 
    • lisa16001
      lisa16001 jackie00198

      Posted

      Hi,

      I've had an necessary blood work done and everything appears normal apart from thyroid and b12 changing depending on dosage and where I am between 12 week injections. I'm struggling with the pushing myself because I am still working a 40 hour week and don't feel my work would be supportive over any time off. If I do get so sleepy that I nod off I just go outside for fresh air and avoid going up the stairs to other departments of possible. I've got some online book so hopefully once I have read these I will have a better idea. I am going back in 4 weeks and see if there is one I can see on the NHS or private as I need to get my life back in order.

    • tina58520
      tina58520 lisa16001

      Posted

      Hi Lisa,

      Sorry to hear that you are so unwell.  I would push your G.P. for a referral to a CFS/ME specialist for a proper diagnosis.  Underactive thyroid apparently is quite common alongside CFS.  I too have an underactive thyroid and had it many years before I was diagnosed with CFS/ME.  I agree with other members on this site, that if you continue to push yourself then you are in danger of making things much worse for yourself.

      Once you have a diagnosis which should be done very quickly if you have had your symptoms for 6 months plus, then you are covered by the Equality Act 2010 because you have a condition which effects you in every day tasks etc, google the equaltiy act.    Your employer by law has to recognise this Act, and once diagnosed you would be best to inform them.  They then have to look at your role and make reasonable adjustments for you anything from changing equipment, working in a quiet area, and installing rest breaks, they can even employ someone to assist you under "Access to Work" (this is all in UK as I know it).  I would strongly recommend that you google also "Action for M.E", which will give you all the information about the condition, recovery, information for carers and families, welfare benefits to name but a few.

      Good luck and I wish you well.

      Tx

    • lisa16001
      lisa16001 tina58520

      Posted

      I live in Scotland and can't seem to find aq CFS/ME specialist but can't seem to see anyone NHS or private. I am trying to take things easy but taking time off work isn't an option as my company aren't to understanding. Hopefully my GP will be able to do something for me so I can take this to my employers. 

      I have been on the Action for ME site and downloaded some booklets so I can invesigate further.

      Thanks for your help x

  • wknight
    wknight lisa16001

    Posted

    Until you have your thyroid under control it can't be excluded from the tiredness. If you do have CFS, pacing is going to be key to working and trying to manage the disease, that was the only way I could do it. I just came home, went to bed and got up again. At weekends I lived in bed for 2 days until Monday came around again.

    Have a read here   http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx    ; and there are many other places 

  • bronwyn97278
    bronwyn97278 lisa16001

    Posted

    Hi Lisa;  I have just read your input and feel very sorry that you are having such a hard time, and at such a young age.  I don't know many answers for what's happening, but your extreme tiredness....even to Falling Asleep while at table etc....is worrying.  I read on another person's site re CFS/ME can also affect the Cardiac Muscle, and from my limited experience of cardiac's, that can be a symptom of decreased cardiac activity....decreased oxygen levels travelling the circulatory system....increasing tiredness....perhaps a mention of this with your GP, and Thorough testing of cardiac muscles/activity....maybe even Mitral Valves etc, as it may not be CFS, but Cardiac....I hope this gives you some direction, for I also noted that you did have Hypothyroidism earlier and being treated for same, which does have wider affects on other body organs....Bron
  • karin65289
    karin65289 lisa16001

    Posted

    Hello again Lisa, 

    I'm back online and see that you've had a number of replies. Hopefully you will find support here and a great deal of personal experience with CFS. Please keep us informed as you traverse this illness. There have been a lot of good suggestions, although that can be overwhelming in itself. Wishing you the very best. And, keep asking questions.

  • lisa16001
    lisa16001

    Posted

    Today my GP has finally referred me to a CFS specialist. Going private so hopefully can get something sorted soon and get some answers!
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