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New to CFS

Posted , 4 users are following.

bob1970
bob1970

Hi all,

I've recently been diagnosed with CFS and reading this forum has been really helpful and so I thought I would contribute in the hope it also helps others.

My Doctor diagnosed me this week after only two months which seems to go against the general protocol. I'm 43 and up until 3 months ago was a keen cyclist and weight lifter.

Mine started after a bug, which was treated with very strong antibiotics, and a virus although at the time I think the word virus was used as there was no other real explanation. I can't really link a cause to it but since Christmas I'd had 2 strange episodes where I found myself knocked off of my feet with fatigue for two days both times. I recovered from these fine. The only thing I have is when on holiday in Italy last year I was ill for a couple of days after eating at a restaurant. I wouldn't be at all surprised if the antibiotics played a part as the week taking them and the two weeks after were hell and I couldn't get out of bed for all of that time.

The rest will be familiar to most after reading the forums here. I simply haven't yet recoved from that 3 week period and as my doctor was very good and did a complete health check very early (vitamin D, Thyroid, Calcium, Diabetes and various other things) she was left with CFS and made the diagnosis with no prompting from me. She has also booked me in to see a specialist although the wait is long (I live in Kent in the UK).

Symptoms are fatigue that leave me bed bound for periods, sometimes a day, sometimes longer. Pain that I mostly get in my head, jaw and neck although it can happen anywhere (chest, back, arm joints etc). Dizziness, jelly legs and weak arms, sensitivity to noise, irritable bowls, poor concentration. I'm not really having good days at the moment as my best is being operational so that I can get some hours in at work and spend time with my family. I'm starting up a self-help regime and have already changed my diet (no alchohol, caffeine etc is really hard) but I need to find my energy limits to pace myself so I have more ok days. One of the best bits of advice I have read so far is to not do something strenuous just because you are feeling ok.

Anyway sorry for the ramble. My Doctor so far has been key and its terrible to read some of the experiences you guys have had with your doctors. I still wake up every morning hoping its all gone away but hey ho, what can we do.

1 like, 5 replies

5 Replies

  • ChloeCybil
    ChloeCybil bob1970

    Posted

    I am convinced that my CFS also started with getting a virus first and then after I got over the virus the chronic fatigue sets in. This has happened to me twice. I am surprised you can still work. I have lost two jobs because of this. Just waiting for this last bout to go into remission and it will. The key is to build up your immune system and gentle exercise like a short walk/ stroll until you can build up to more. The key is baby steps in whatever you do. 
  • sally_14743
    sally_14743 bob1970

    Posted

    Hi Bob , so sorry you are at the beginning of a horrible illness .  You have got a lot to get your head round. You will get your head round it in time . Remember everyone is different and because this illness is basically not very well understood by the medical profession the causes etc and treatment really leave it to your body to heal itself...some people in your position of being diagnosed early totally rest and make a quick recovery in less than a year . The key is right now to not push your body because it can get worse ... And set in for years . The most important thing right now is to sort your affairs out so you don't place any pressure on yourself to work .. Stress will hinder recovery ... Sorry no quick cure ... But loads of people out there who have been there done it and got the t shirt and recovered ... 
  • jackie00198
    jackie00198 bob1970

    Posted

    Hi, Bob. Your onset of CFS is exactly like mine. I mean exactly. I had two bouts of extreme fatigue from which I recovered, then I got the flu (no antibiotics), which morphed into full-blown CFS. The first doctor I went to did think it was "all in my head," as did the second doctor. I knew they were wrong, and went to see a specialist at UCLA, who diagnosed me within 15 minutes or so. So it took about 3 months for me to be diagnosed. You sound like you really have a handle on how to proceed. I've had this for quite a while, and want to reinforce what I think you know: pace yourself and do not push yourself, even when you start feeling better. 
  • Deb1982
    Deb1982 bob1970

    Posted

    I too agree small steps, if I have arrangements to go out at the weekend I simply have to rest all week, and when I do go out it takes it out of me and I may spend the next day in bed.  I feel quite low as this is the first time in my life that I have not worked so it can get lonely but then I think some people never get out of bed or need wheel chairs, so if you feel you can not do something don't fret.   I have just started getting bad pains in my leg muscles, but that may be due to me having fibromyalgia as well,so it is rest rest rest.
  • sally_14743
    sally_14743 bob1970

    Posted

    My husband has CFS ... he was sent by the doctor last summer for a medically structured exercise regime .. He had had CFS for 3 years . He went for 20mins 3 times  a week and increased over 3 months to 1 hour 3 times a week ....He started to get energy and recover     smile.  .. This was a much safer option than just doing it on your own ..as your blood pressure is taken each time you go and it's very carefully structured for CFS.  When you reach this point ask your gp if he will refer you. My hubby now has just got diabeties un diagnosed since sept so he is rough... But I know you can recover from extreme CFS but it does require a strong mind it's so depressing and positive attitude and willingness to do that exercise at the right time in your recovery. Several friends of mine have recovered and all of them after a year of rest started using that precious energy to exercise and guess what the body took a few days at first but it made more energy ... Each time they exercised they recovered quicker... It's tough for your family as they want you to use your energy for socialising but physical exercise is the answer to recovery ...at the right moment ...which is individual to all ...
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