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Possible CFS

Posted , 6 users are following.

becky80409
becky80409

Hello,

At the end of august 2016 I developed a rash all over my body that I was hospitalised for and treated with steroids, along with this I was really tired, muscle pain and joint pain and a sore throat, I just accepted this after a viral infection, 6 weeks later I was struck down again with tonsillitis and again hospitalised as I was unable to swollow, I as later told that I had had Glandular fever and that was why I was still feeling so unwell. In January 2017 I went to my GP with a lump in my neck, night sweat, itchyness of my skin, weightloss and extreme tiredness the tiredness.

I was again hospitalised as they wanted to rule out lymphoma.

The tiredness I experiencing isn't helped by sleep and if I do something today I will feel is awfull the next day. My joints are so painful, sore throat, and only wht I can describe as brain fog, I'm really struggling to find the words when talking, I will have 9 hoirse sleep and I wake up with night sweats and wake up in the morning unrefreshed.

I have been back and forth to the doctor and my latest admission to hospital the doctor was really abrupt and said I was depressed. I have descussed this with my GP.

This is where doctor has mentioned chronic fatigue.

Previous to this I was running every other day and was fit.

Hope someone may be able to relate to this and give me some advice.

Thanks

0 likes, 12 replies

12 Replies

  • richardowenplc
    richardowenplc becky80409

    Posted

    Hi Becky, I had glandular fever 2 years ago. My body has never been the same since. After numerous infections and antibiotics I realised something wasn't right. My doctor never suggested that it could be cfs/me. I reasearched it and went to my doctor. They suggested I was depressed. I knew I was depressed but tried to explain that I was depressed because I couldn't do what a 36 yr old should be doing. I tried antidepressants but nothing changed. I decided to change my doctor and that was the best move I made. I have now been diagnosed with cfs/me and am awaiting to start a treatment programme. My advise would be listen to your body don't push through it

    • becky80409
      becky80409 richardowenplc

      Posted

      Thank you for your reply, I would say I'm fed up of not feeling right but no-one listening to me, I'm seeing my GP this week who suggested CFS, I have also been told that there isn't a treatment in the form of medication, is this correct it's jut about learning to manage ??

  • KPD
    KPD becky80409

    Posted

    I'm so sorry to hear about how bad you are feeling, Becky! Many of the symptoms you are describing do sound like those experienced by people with CFS. Unfortunately, there is no one treatment that works for everyone. I've had CFS for 25 years and have had many ups and downs during the course of my illness. 

    I do best when I pace myelf, get the right amount of sleep/rest, exercise in moderation (approx. 20-30 minutes of aerobic exercise 3 times a week). Some people prefer yoga and meditation. 

    I also take a trycylclic anti-depressant at bedtime (Doxepin) which promotes REM sleep. This may also help with the pain you are experiencing.  I've added Vitamin B-12 and D to my diet.

    As I'm sure you know, stress can make symptoms flare up, so it is important that you find ways to reduce the amount of stress in your life. Hope these things help and you begin feeling better. KPD

    • becky80409
      becky80409 KPD

      Posted

      Thank you smile

      I think the fact that I haven't been to work since December doesn't help and also not been able to do normal 22 year old things rolleyes

      Thank you for you reply smile

    • dawn94288
      dawn94288 becky80409

      Posted

      Hi Becky,

      Every time I hear of someone else who is experiencing this i feel so badly for them. I'm sorry. Great news, though!  If you are only 22 then there is suppose to be a much greater chance of recovery for you as long as you pace yourself and treat your body well!  So don't push to0 hard right now.  If there is any way that you can, get plenty of rest and try to be patient with the "getting well" process.

    • becky80409
      becky80409 dawn94288

      Posted

      Hello,

      I haven't had the deffinate diagnoses yet but it has been mentioned several times, it's been going on for 6 months 😑😑

    • dawn94288
      dawn94288 becky80409

      Posted

      Good point.  The docs will have to rule out many other conditions through tests before they will give you a CFS diagnosis.  Best Wishes and God Bless.
    • becky80409
      becky80409 dawn94288

      Posted

      I do have a slight underactive thyroid which I take 50mg of levothyroxine, this has been checked several times and they have ruled that out as not the reason.

      I've also have had test for

      HIV

      lupus

      TB

      Cat Scratch fever

    • dawn94288
      dawn94288 becky80409

      Posted

      Oh!  I too don't have enough thyroid and have to take prescription thyroid medicine. According to some CFS/ME experts  there are many with CFS who have thyroid issues and don't even know it.  The thyroid issues are an added stress on the body.   As I'm sure you know, a whole lot more needs to be learned about CFS, but both of the doctors that have helped me regain function the most, believe that what happens to our bodies is kind of like what happens when we have an electrical overload in our homes.  You know how when you  plug in too many  things at once in a certain area of  our home and the power goes out? Well, usually people get CFS after their body or possibly psyche has been assaulted by some major stresses.    It sounds like your body has taken on a lot--thyroid problems, glandular fever, a pervasive rash etc.  So I would not be shocked if you get diagnosed with CFS, if they rule out everything they need to.

    • becky80409
      becky80409 dawn94288

      Posted

      I only found out I had an underactive thyroid when I was in hospital and had a blood test to see what the rash was etc

      Hopefully my GP may be able to shed some more info next week.

      I wish there was a treatment rolleyes

  • jackie00198
    jackie00198 becky80409

    Posted

    Becky--Sorry you're dealing with all these symptoms. Unfortunately, they sound spot-on for ME/CFS. Go to the "solve me/cfs initiative website" for more information. You do need a diagnosis, though. The first step is to get bloodwork done to rule out other illnesses. Then go to an infectious disease specialist or a rheumatologist familiar with ME/CFS. There is no specific test for this illness, but by asking you appropriate questions about how you're feeling, they should be able to diagnose you. There is no cure for ME/CFS, but people can get better. To maximize your chances for improving, get plenty of rest, pace yourself, and don't try to push through the fatigue. Stay within your energy envelope. And don't believe ignorant doctors who tell you depression is the cause of your illness. This is an old story I see again and again on this forum. 

    • becky80409
      becky80409 jackie00198

      Posted

      Hello Jackie,

      Thank you for your reply, I have had nemerous amounts of bloodwork done to rule out all other possibilities, I am at the doctor this week so hopefully may be abit further forward.

      Thanks again

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