Possible Chronic Fatigue Syndrome....advice needed

Brain and nerves
1

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

2

Your description of the history of your problems and your list of symptoms sounds very much like CFS/ME to me. Unfortunately there are no definitive tests for Chronic Fatigue Syndrome so diagnosis involves discounting everything else it could be, but it sounds like you've had most of those tests already. You could suggest it to your GP. Are you in the UK? The ME Association can give you more information to show your doctor if necessary.

3

Oh dear Jen, that sounds so depressingly familiar. There are websites which suggest what symptoms to look for so you can discuss this with your GP and get at a diagnosis.  However, even if you get a diagnosis of ME/CFS it won't get you very far in my opinion as the current state of affairs is to treat the symptoms but that doesn't cure you.

I take a lot of supplements and vitamins which I believe help me a lot.

I think you need to rest a lot and pace yourself, easier said than done and don't try and push through it,  but if you stick around on this forum, you'll get some good advice.

Good luck!

Liz

4

Hi Pixie,

Thanks for your reply. I'm not sure what else could be done test wise except the bloods and those for my throat. 

I regular bloods done when I was ill and the only thing that ever showed up then was raised CRP understandably with all the infections. That had gone back to normal at my last blood test in June and nothing else showed up either. 

I had to move back in with my parents when I got ill so they are able to see how I'm feeling etc. They are trying to get me to go back to see the GP at the moment but I'm reluctant, partly because there isn't much they can do and partly because I think they'll probably fob me off as it being down to me being overweight even though I'm 2 stone lighter than I was before I got ill. 

I am in the UK so will have a look at the ME Association and will consider booking a GP appointment. 

Jen

5

Hi Liz, 

Thanks for your message. I am beginning to think it is more and more likely. Don't get me wrong I have had some good days and some ok days, but then I get hit this week with feeling like I've been hit by a double decker bus. My leg weakness this week is ridiculous and at 6ft tall, I'm not finding it easy to get about as my legs are so painful. 

I first looked at the symptoms several months ago as I wasn't feeling like myself still. The GP that referred me for the endoscopy and last bloods said my body would take a while to recover after being so ill. It is now 18 months since my last operation and 12 months since I went back to work part time and whilst I'm not in my bed/asleep every 5 mins like I was when I was ill, I'm definitely not doing the things I was before and don't feel like myself at all. 

I have a history of depression too so I know that not being able to work as much as I want or do all of the other things I want is proving frustrating,

I take a strong multi-vitamin and strong probiotic (have done for a year) on the advice of a friend who had also been really ill at the same time as me. The probiotic is to help with my IBS (diagnosed 2009) and combat the damage done from a ridiculous amount of antibiotics. 

Another thing I have noticed when everything flares up is that I have really dry lips/dehydrated alot of the time which I have figured is down to my temperature spikes. 

I do as much as I can diet wise - no junk, no alcohol, only water and tea, lots of fresh fruit and veg etc.

I'm tussling with going back to the GP or not at the moment.

I will try and rest as much as I can. 

Thanks for your advice

Jen

6

Ooh you used the same 2 phrases to describe how you feel that I do! You feel like you have flu when you don't and you feel like you've been hit by a double decker bus, you must be reading my mind!

leg pains tick

IBS tick

depression - I work hard at not succumbing to it

As I said, depressingly familiar. I know how you feel about going back to your Dr too, but that's the only way you'll get a diagnosis.

7

Sounds like I'm not imagining it afterall!!!

IBS was diagnosed years ago, then I discovered I had food intolerances etc. 

Depression was properly diagnosed in 2009, I know it's getting worse through my sheer frustration but trying to manage it.

Leg pains, feel awful today!!! 

Knowing the doctors at my surgery, they will probably say, 6ft tall, overweight so your legs will hurt. They don't like to look outside of the box very much I've found. 2 stone lighter post illness and still don't feel right at all. I used to bounce around all over the place, now on my worst days, hoovering leaves me exhausted,

8

Food intolerances tick!

You might like to try a magnesium spray for your legs, over the years I have worn away countless pairs of trousers thro rubbing the pain away!

hoovering, what's that? :-D

9

I'll have a look into magnesium spray, do you know where the best place is to get it?

Hoovering, my attempt to do something today. I did it, albeit slowly and I was sweating buckets doing it. It was only one room!!!

My parents had to stop me going swimming today as well, I thought I'd be able to manage it. How wrong was I?

After 18 months off work , I really do hate not being able to do stuff when I feel like I have this week. 

No pre-bookable appointments at |GP for 2 weeks so I will have to see if I can get an on te day appointment next week. 

Jen

10

I'll private message you about the spray if that's ok as don't think the moderators like people hawking stuff.

swimming is strenuous, I find that if I do go with my daughter it's best for me simply to do leg stretching, walking, squats etc, rather than try swimming.Also, listen to your parents when they try and stop you, my daughter in particular can read my illness often much better than I can.

I had to take ill health retirement 3 years ago which was hard for me as I enjoyed my job so don't be hard on yourself. If it is ME you'll have to adjust your lifestyle and do what you can do on that day. I think it was Artist Mike who recently suggested that in some ways we are more disabled than say an amputee, it's only they look disabled and we frequently do not.

11

Yes that's fine about the spray. 

I do like swimming, I found that and gentle walking better for me than going back to the gym like I used to do. Attempted it a few times with very undesirable effects. 

I did listen them and promptly put the swimming bag back on the floor and sat down. 

I've gone from full time teaching and living on my own, to getting ill, moving back home and still being here over 2 years later. 

I am hoping that if it is CFS that it is a mild case that will eventally improve. Work and income are also a major worry for me. I worked part time at a college and am now onto supply teaching. I am bit shocked that I've had such bad week as I had been feeling a bit better and thought things were on the up!!! I am desparate to work, I literally go stir crazy when I don't and my depression gets so much worse. My parents are both retired and really cannot support me financially. I'm hoping that I will be able to work although I kind of resigned myself to the fact that full time teaching probably isn't an option now. 

I haven't really got friends as such either so that just compounds the situation. 

I have 2 days of supply work booked in for the end of next week, I am hoping that I feel better to be able to do both as really need the money. 

Jen

12

Hi Jen

Not sure I can offer any more advice than that that has been given, but I was a full time teacher until recently. To cut a long story short they basically got rid of me and since summer I have been jobless. I too don't think I could be a full time teacher again as although I was managing before leaving, I have since realised how much of my life it was taking. I was so exhausted in evenings and weekends (and often working through them) I had nothing left to give anything else. I'm not sure what best to advise as at the moment I'm not in a great place mentally with everything that has happened, but feel free to message me if you want to keep in touch with someone who has been there and was until recently a teacher!

Wishing you lots of luck and remember, put yourself first X

13

Well said!

14

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. 

15

Hi Mazpaz,

Thanks for you message. I can appreciate the situation from a teaching point of view. I got labelled as horrendous teacher after one slightly below par observation and I mean one.

They made my life hell after that, dumped extra classes on me (Teaching 400 kids at one point), 2 trainee teachers on me etc until I eventually got ill. I used up all of my sick pay, a whole year in total and then went 6 months without anything. I wasn't entitled to any benefits as I'd moved back in with my a parents and their pension was too much for me to claim anything.

I eventually decided to leave in Aug 2015 as I couldn't move back to the area on my own after being so ill.

I went back to work at an FE college last Oct but only part time. I actually quite liked it there and wanted to stay but they didn't want to pay me a salary consummate with my 10 years experience. The 16 hours of lessons they had to offer was spread over the 5 days which meant I couldn't top my income up doing supply or anything.

I'm just doing supply now and considering my options but the health issues haven't helped. I really need to be working full time to support myself fully but haven't been able to manage it yet. I totally get where you are coming from and how you are feeling. Even supply teaching is a massive hurdle for me, I feel like I have a complete mental block just getting into a school after my experiences.

Please feel free to stay in touch. Look after yourself.

Jen

16

I can't bring myself to go near a school yet, although financially I need to as I was the main wage earner. I feel so lost at the moment and can't seem to get a grip of things. I was an outstanding teacher and didn't have any bad observations but the Head was new and is pushing the school to outstanding so didn't want anyone or anything to stand in the way. Hence the manipulation of a heavy workload, huge pressure and bullying leading to a massive relapse that I'm not yet out of. I wish I had some advice on how to get back into the job market but I don't know myself what an earth to do. The M.E. clinic did tell me they had suddenly had an influx of teachers in the last year because of the huge pressure and 12 hour days that is expected. It's such a shame, but I am out and probably can't get back in even if I wanted to. I just wish I knew what I could do. 

X

17

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

18

I down-shifted from teaching to joining a temp agency and ended up in a great job in the NHS until had to give up because of this illness. It doesn't pay as much, but so much less stressful, you even get to chat!

19

I totally get the not wanting to go back to a school.

For me it was literally that one observation, I've never had any problems otherwise and the college I was working at had nothing but praise for me as a teacher.

It didn't bother me so much going to the college but when I stated supply in schools I was in a complete panic to be honest. I got through it but it wasn't easy.

What is your specialism? Have you considered something like tutoring? Depending on what your specialism is there is a good market for tuition and is more flexible. Depends on where you live as well as some areas have greater demand.

Heavy workload, pressure, bullying, constant negativity most definitely contributed to me getting ill. I was so stressed out I think my body just gave up and hence I landed myself in hospital.

I'm not surprised that it's becoming more common amongst teachers. I have no idea if there is even an M.E clinic anywhere near me. It took months to just get my throat checked out never mind asking for anything else.

Jen

20

After my experiences of teaching and being ill I am pretty certain that full time teaching isn't an option.

Living at home is great in one way in terms of being closer to my parents but not ideal in lots of other ways. I enjoy being independent and being able to spread my wings and do different things. I cannot move out of home again until I can work full time which I am finding frustrating.

Supply teaching is relatively well paid but unreliable and even more so now that secondaries are moving away from using so many supply teachers.

I think if I could know one way or another whether it's CFS or not it would help. At the moment, I just don't know. I've applied for some full time jobs outside of teaching just because that's what I need to be doing but I can't see me managing a full week, every week not at the moment.

Equally, I can't afford a massive drop pay wise if I'm to support myself. Sooooo frustrating!!!!