1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Is this chronic fatigue syndrome?

Posted , 13 users are following.

reena56292
reena56292

I am really struggling with coming to terms on what is going on with me, with no help of doctors. I have had severe fatigue for 6 months, which has progressively gotten worse over time. This fatigue is there every single day. I have found that when I feel ok, alcohol and exercise are triggers that set me back at least a week in bed. Besides this, i have difficulty falling asleep, staying asleep, and wake up extremely unrefreshed. I dont have any flu like symptoms or sore muscles. I am feeling pretty lost and down here. Would like to know others experiences and their thoughts. I am a 22 year old female

2 likes, 27 replies

27 Replies

Next
  • reena56292
    reena56292

    Posted

    Ill also had ive had every blood test under the sun which are normal, and this started after end of year exams - a very stressful time for me.
  • toni62403
    toni62403 reena56292

    Posted

    Hi there, 

    I would recommend that you keep seeking help from your GP, it took me a year and 5 different doctors before one took me seriously and i was able to get a diagnosis. 

    I would recommend keeping a record of your appointments (gp visits, blood tests etc.) these will be useful when you go to visit your doctor. It helps the doctor to know what you've been tested for.

    I would also recommend making a symptom list, this is a lot easier than trying to remember your symptoms when you have a new doctors appointment. I also made a note of the symptoms I experienced daily (e.g. fatigue, fogginess, sleep problems) and any I experienced less often (e.g. joint pain) I also wrote a brief description of my symptoms. 

    Finally, I would suggest making a note of things that you cannot do/ struggle to do now that you could do before (e.g. cooking a mean,  going shopping) I found it was important to show the doctor the impact on my life and day-to-day functioning.

    I understand how you feel - I was in a right state, worrying about what was wrong with me and why my tests were coming back normal when I felt so unwell. I'm studying for my PhD at the moment and it's had a massive impact on my studies. What I wish I had done sooner is go and talk to someone about the impact of my health on my live and emotional state. It really helps to air out these anxieties and give yourself time to grieve over the change in your life due to your health. 

    Anyway - best wishes!

  • onebratt08
    onebratt08 reena56292

    Posted

    Have you been tested for mono? Given your age and symptoms, I'm thinking mono is a possibility (but I'm no medical professional).
  • jackie00198
    jackie00198 reena56292

    Posted

    It sounds very much like ME/CFS, especially since your bloodwork has come back negative. Exercising and drinking alcohol are very bad if you have this illness, and can cause worsening symptoms, relapse, and lessen your chances of getting better. So while you're waiting for a diagnosis, get plenty of rest, pace yourself, and don't try to push through the fatigue. In addition to alcohol, avoid sugar and caffeine. You should see a specialist, preferably an infectious disease doctor or a rheumatologist. GP's are notoriously uninformed about ME/CFS. Go to the website for the "Solve ME/CFS Intiative." They have lots of good information. There are many possible symptoms of ME/CFS, and just because you don't have flulike symptoms or sore muscles doesn't mean you don't have the illness. Like you, when I became ill, my only symptom was the unrelenting fatigue. I pushed myself, and then other symptoms appeared as the illness worsened. This happened because I was ill informed, especially by my doctors. You don't want this to happen to you.
  • wknight
    wknight reena56292

    Posted

    If it is CFS don;t expect any miracles from the medical profession. I am well on the road to recovery by learning what I can and can't do. 

    If alcohol is a trigger avoid it, simple. If exercise is a problem stop doing it or learn how much you can do and only do that. That is what I did and very slowly educated my body, like a marathon runner, to learn how to cope with exercise again. 

    Learn to say NO, and listen to your body as to how much you can do without going to bed for a week. 

    Best of luck, its a long, slow road. I boomed and bust for years until I learnt to pace myself. The rewards are worth it.

  • Bunnyhugger
    Bunnyhugger reena56292

    Posted

    All the above advice is appropriate, make sure you are also checked for Lyme disease, low thyroid, low B-12, and hepatitis C.  Cut the PhD to half time,even for a healthy person, doing a PhD is quite a load.  For someone to talk to, cognitive behavioural therapy is recommended for CFS and I have found it very helpful.
  • abot24558
    abot24558 reena56292

    Posted

    You need a sleep test. Maybe more than one. I couldn't get refreshing, restorative sleep without Xyrem, (sodium oxybate). I've been using this for over ten years, and it has made an enormous difference. Sure, I still have fatigue from fibromyalgia, Sjögren's syndrome, aging, but now, I can get the deep levels of sleep, stages 4 & 5....

    Without good sleep I was bedridden with migraines and too many pain pills. Good luck to you in finding a good sleep specialist, neurologist, pain dr., therapist, to help you keep your youthful energy. So sorry you're sick, too.

  • boni333
    boni333 reena56292

    Posted

    I was so sick with this illness and didn't anything about it, or even existed. I ran from doc to doc all of them doing blood tests and everyone coming normal. CFS has the same symptoms as alot of other illnesses like lupus, mono, MS and a few others. You have to rule out these illnesses to get a DX of CFS. I found that I first had to find a doc that knew about this and believed in it. There wasn't many back then so I found a CFS group and asked them who could I see and they told me. I saw him and then got everything I could about this illness. And I learned what I could and could not do. Do you have a doc that is up on CFS? If you think you have it then more likely you do. Treating this is hard because the doc's that do treat this don't have much to offer. I treat my symptoms, my depression with meds and counselling. I listen to what my body tells me and don't over do.

    Before CFS I was a big partier and drinking. When I got sick I had a violent reaction to it and all I drank was 4 or 5 sips of alcohol. I'm also sensitive to medications. I have to take less a dose then most people. And I get immune to it real fast. The best place to start research is with the CFIDS association.

    Good luck and keep asking questions

    Bonnie

    • jackie00198
      jackie00198 boni333

      Posted

      The CFIDS Association has changed its name to the Solve ME/CFS Initiative. Their website is a very good source of information.
  • reena56292
    reena56292

    Posted

    Thank you so much everyone for replying, it helps - cannot even put into words how hard this has been for me. Ive been tested for mono, and that was negative. I ahave seen a rheumatologist and he put it down to 'bad sleeping habbits' and that i may well be borderline chronic fatigue. I am seeing him again in a few weeks to touch base as nothings improved. I defintely know for a fact that if i push myself things get so much worse. Im also talking to a therapist and that has helped me deal a little with my emotions on this drastic change. I guess what I want to know is whether this gets better and if theres a light at the end of the tunnel. At 22 this is just beyond me and has caused so much distress
    • jackie00198
      jackie00198 reena56292

      Posted

      People can get better with this illness. I know several people who are living normal lives. One was even climbing all over her hillside pulling weeds. You do have age on your side. Since you are young, you have a better chance of recovery. Also, with good information, you can make decisions now that will affect whether you get better. So I'll say to you what I wish someone had said to me when I became ill: don't push yourself. Take it real easy and get lots of rest. Do whatever you can to de-stress, as stress is a big enemy of this illness. Do whatever it takes: meditate, listen to music, learn deep breathing techniques. Avoid sugar, caffeine, and alcohol, and eat healthfully. Get a good night's sleep if you're able. This is the hardest part, because it involves your attitude: accept that for right now, this is what you have to deal with. Try not to think about the future, what ifs, etc. That will only make you crazy. The future is unknowable. Focus on taking each day as it comes and getting the most out of each day, within your energy envelope. I have a very small energy envelope, so I lead a very sedentary lifestyle, but I do read, listen to music, watch movies, eat some great ethnic food. I've also learned to advocate for myself, and not to listen to ignorant people, including doctors, who tell me it's all in my head.
    • KMRC
      KMRC jackie00198

      Posted

      Go Jackie!  It is so tough having chronic illnesses.  So many times, we don't "look sick" and are dismissed out of hand - by docs, friends, family...  I have learned after 28 years that NO is a complete sentence.  I have many auto immune illnesses, migraines, PE, kidney stones fairly regularly and cluster headaches so I have learned that you have to be very proactive in your care, don't be afraid to fire a doc if they minimize your suffering and research, research, research!  Look at your labs and keep them for comparison.  Don't take out your frustration on others but rather lean on a therapist or like me, find friends in the docs office that have similar lives.  Laugh about everything!  That keeps me sane.  I used to be an artist and made jewelry and can barely get out of bed now.  The pain and no sleep go with my life and I don't hesitate to opt out of any social commitments at he last minute.  Has it lost me friends?  Yes.  But the way I look at it, they didn't accept my limitations and their badgering me to do more didn't help my mental status.
    • jackie00198
      jackie00198 KMRC

      Posted

      Have we discussed cluster headaches before? Because I have them too, or rather had them until I got ME/CFS. Someone else on this forum--was it you?--told me they also had clusters until they got this illness. Very strange.
    • KMRC
      KMRC jackie00198

      Posted

      Jackie, yes it was me that had cluster headaches but did not develop them until after a pulmonary embolism (I have had 3, each lasting 65-70 days, only on the left side and get migraines very often on the right.  Sometimes I think Edward Scissorhands is living in my skull!  I am so happy for you that at least you are not suffering from the clusters with the ME/CFS but since they come usually once or twice a year, unfortunately they may not be gone. BUT I HOPE THEY ARE!
    • ChrissyC
      ChrissyC KMRC

      Posted

      Ive just replied to Jackie and Artistmike on the earlier thread about cluster headaches. Jackie you might pick it up here first - I'm late getting involved because my ME has kept me off the computer for a while. My husband has cluster headaches, blooming agonising things but of course you know. Our GP researched and prescribes nasal sprays called Immigran by GSK containing sumatriptan. One spray deals with each individual headache within 10 to 30 minutes, an absolute Godsend! Then he takes the slow release Verapamil pill daily which takes a few days to build up and kick in to stop the whole cluster. He continues the Verapamil until he has gone a good week without a headache at all. Would love this to help you too!

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.