Possible Chronic Fatigue Syndrome....advice needed

Posted , 8 users are following.

Hello everyone, 

I am looking for some advice regarding me having possible Chronic Fatigue Syndrome.

Prior to April 2014, I led a very full and active life working as a teacher. I used to work 60+ hours a week including most evenings and Sundays. I used to go out every Saturday and would go to the gym for about 4 hours a week completing all different types of activities. 

In April 2014, over the school Easter break, I became ill with an abscess that had to be surgically drained. Unfortunately this left with a complication known as a fistula which required further surgery. However, the following 2 rounds of surgery took place over a period of about 10 months which meant that I was left with an infected fistula track between June 2014 and April 2015 when it was finally sorted. 

During this 10 month period, my immune system didn't cope very well with being left with a permanent infection and I subsequently developed other frequent infections......tonsillitis, UTI's and Chest infections predominantly, all which had to be treated with antibiotics. Throughout my whole illness I had a permanent sore throat, having never suffered with sore throats previously, as well as fatigue from repeated infections and a frequently raised temperature. 

After recovering from the final operation, having physiotherapy and spending some time re-strengthening my leg, back and hip muscles, I was able to return to work part time in October 2015 after having 18 months off work completely. 

I now find myself a year later and still struggling to return to my pre-illness life. 

I have continued to suffer with a persistent/chronic sore throat which has never gone away since I was ill. I have managed to return to work, but only part time, at most the equivalent of 4 days a week but not necessarily 4 full days and definitely no evening or weekend work. At best, 25-30 hours a week has been my limit, so less than half of the hours I used to work before I got ill. 

I experience additional symptoms on top of the sore throat every few weeks or so which seem to go in a cycle, e.g. I have a few weeks feeling okish but by no means up to my pre-illness energy levels and a few weeks with barely any energy at all. I have continued like this for months now.

At first, I thought nothing of it as returning to work part time after 18 months was always going to be difficult but I am now a year down the line and most definitely not back to my normal self. 

The other symptoms I experience are:

- Dizziness

- Swollen lymph nodes

-Achy/painful legs in particular

-Difficulties controlling temperature - one minute I'm boiling hot, next minute freezing cold

- Feel worse after exercise, particularly when all of the above seem to be occurring at the same time

-Fatigue/lack of energy

To give an example, I went swimming on Monday morning, fairly gentle, but I have been unable to that much else this week. I have managed a very small amount of walking around the house but not much else. I haven't been to work this week at all (currently working as a supply teacher) Last night the achy/painful legs woke me up about 3am. I am currently at home resting in bed. 

I have had tests done to look at my throat - endoscopy as my GP thought my throat problem was reflux and I've also seen an ENT who similarly looked at my throat with a camera. All came back normal. The last time I mentioned the fatigue in particular combined with the sore throat I was sent for the usual battery of blood tests which again all came back normal. The ENT doctor did mention post-viral fatigue and that it would probably go away eventually but that's as far as I got. 

That was in June and I'm still not experiencing much of an improvement. 

I've described it as like having flu but without actually having the flu if that makes sense. 

I'm really just looking for people's thoughts as to whether chronic fatigue is a possibilty or not. 

Thanks

Jen

1 like, 32 replies

32 Replies

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  • Posted

    Yes. It sounds to me, from your post, like you have ME/CFS (Chronic Fatigue Syndrome). A sore throat is a very common symptom in this illness. I had it for many months when I first became ill. Your other symptoms also sounds spot-on for ME/CFS. There is no biomarker for this illness. To be diagnosed, you first need to have a blood panel done to check for other illnesses. Any GP can do this. Then you should go to a knowledgeable specialist (like an infectious disease doctor or a rheumatologist) who can look at your symptoms, ask you pertinent questions, and make the diagnosis. I was diagnosed this way after about 3 months of being ill. There is currently no cure for ME/CFS. But people can get better. The key is to pace yourself, staying withing your energy envelope. Going outside of the envelope, crashing, and then needing to recover, can lessen your chances of recovery. Get plenty of rest, avoid caffeine, and if possible, get a good night's sleep. De-stress in whatever way you can, as stress can exacerbate the illness. 

    • Posted

      Hi Jackie,

      Thanks for this. My last blood panel at the beginning of June showed nothing and was completely normal.

      I've had no bloods done since but I haven't been back to the doctors since then and have just been trying to manage how I feel with rest when necessary.

      I think I probably overdid things at the end of last week, hence why I don't feel great this week. Either that or it was the swimming on Monday that triggered me off, although it was a fairly gentle swim.

      I've rested most of today and half of yesterday. Caffeine isn't a huge problem anyway as I really only drink water. Sleep is only a problem when symptoms flare and my throat, leg pain and temperature keep me awake.

      Thanks for your advice though

      Jen

    • Posted

      Swimming is a fairly strenuous activity. If your symptoms flare up after a swim, including fatigue, you might consider cutting back. You don't want to jeopardize chances for a recovery.

    • Posted

      Thanks! When I'm having a good period, swimming seems to be ok. It doesn't necessarily give me loads of energy nor leave me unable to keep my eyes open. This week however, is a different story. Swim on Monday then awful rest of the week as of mid morning Tuesday.

    • Posted

      Can I just say it's so lovely to hear you say you can get better.  A lot of the comments on here are getting me down as people are saying they have been ill for decades. I feel so awful for them, but also terrified I will be the same!

    • Posted

      Thanks Katy. Although I'm no doctor but I believe I have either post viral fatigue as suggested by the ENT or a mild case of chronic fatigue. I am able to work albeit I have attempted full time again yet and I am able to do stuff.

      Today, I've had to venture into town for an interview with another teaching agency. I don't feel amazing but I'm out, albeit taking the transport option that requires the least walking..

      I can't imagine what it must be like to be bed bound or able to do very little so from that point of view I am lucky. I still do have good and bad days though.

    • Posted

      I've had it for 33 years Katy but during tthat time I have had many many months of feeling well again. My present condition is I believe as a result of having to take omeprazole and being unable to take up sufficient nutrients from my diet. I don't despair as I know it changes from day to day and I enjoy the good times when they're here.

  • Posted

    Fatigue and lack of energy.  OH my yes.  Add to that, after twenty-some years of having this, no initiative.  Can't get up and get going.  Or, as my dad used to say, "My get-up-and-go got up and went."  I'm finding I need more and more help to run errands.  In fact, yesterday I talked the dog groomer into coming to get the dog and keeping him for the day so he could have his much needed grooming.  Bless her!  She did.  I didn't feel it would be safe for me to drive the distance to her establishment, and it was something that just had to be done.  But driving is only part of the issue:  the main thing I'm saying is that it is very difficult for me to make myself do much of anything.  It's as if there is no more energy available.  I don't feel depressed, and I enjoy visiting with my family and friends, if they come over, but I don't have what it takes to do any more than essential stuff around the house.  I find I am hiring people to help.  Exhaustion?  Yes.  But also a terrible ennui.  (I think that's the word I want.)  Maybe if I could get a decent night's sleep?  Finally, I understand your reluctance to discuss this with  your doctor.  My doctor retired a few years ago, and the new guy is okay, but I don't think he is a bona fide believer in Me/CFS.  I asked him once, and, as I recall, was "Your symptoms could be other things."  Then he dropped the subject.  So did I.

    My thoughts are wandering and this isn't a clear and concise posting, so I'll quit and go back to the sofa. 

  • Posted

    I must apologize.  I began by trying to reassure you that the problems you listed, especially the exhaustion and lack of energy are typical ME/CFS complaints.  So are the other items you mentioned.  Then I started blathering on about my own concerns.  Not nice!  Again, I apologize for not sticking with YOUR subject, your concerns.  
    • Posted

      No worries!! I am likely to need to go to the the doctors tomorrow now as I'm also asthmatic with a possible chest infection. They are unlikely to take me seriously about anything else when I have stinking cold and chest infection.

      Sadly, I have worsening depression at the moment too, but that's a result of a whole heap of things.

    • Posted

      So, 5 weeks after my original you post on here, I still feel going through a rough patch. It has taken me 3.5 weeks to shift a cold and chest infection with one lot of antibiotics topped up with steroids. To say, I feel wiped out would be an understatement.

      Recent bloods taken 2 weeks ago- First line autoummune profile (ANA), ferritin, blood glucose, thyroid, FBC, U&E - ALL Negative/normal

      CRP slightly raised but then it has been raised for 2.5 years with all my surgeries and infections/hammering to my immune system. It is thr lowest it has been in all that time.

      So I am back to my GP saying it is most likely Post Viral Fatigue but that's about as far as I'm going to get.

      Current symptoms still persisting -

      Sore throat - particularly bad at the moment

      Lymph nodes have swollen up today

      Pains in legs

      Fatigue

      Sleeping 10-12 hours most nights

      Resting during the day

      Very little energy

      White as a sheet (zero colour at all)

      So, is there anything else I can do to help myself? I already do the following-

      Take strong probiotics and multivitamins

      No caffeine

      No alcohol

      Diet of fresh food

      Drink 2.5- 3 litres of water a day (but still seem to be constantly dehydrated at the moment)

      Gentle exercise when I can

      Currently having physio on my hip

      Any advice appreciated?

      Jenna

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