is it CFS?

Brain and nerves
1

Dear community

Can anyone help me?

I’ve been living with fatigue now for almost 2 years which started approximately 2 months before I was diagnosed with Cancer, at the time.  I went on to have the tumour removed and received further treatment through chemotherapy which all ended about 14-15 months ago. Since then I’ve continued to live with a mild form of tiredness and fatigue which didn’t affect my life too much as well as short term memory issues, since the chemo.   

Until recently I wasn’t too concerned, believing that it was all part of getting better, however about 5 weeks ago things took a sudden turn for the worst and completely out of nowhere. Every day has become a struggle since. I’m concerned that I may have a form of Chronic Fatigue.

At the moment I am having tests done, the recent blood tests haven’t given any indicators to what this could be.  I believe that they checked the lot, including signs of anaemia, thyroid, diabetes, hormone levels and for cancer markers, as well as cell count and organ function etc.

To describe a new average day would go something like this:

I get up having had 7-8 hours sleep, feeling tiered and exhausted.  By around 8:30 I am sat at my desk at work nursing a cup of coffee and trying to go through my emails. By around mid morning my muscles (arms and legs) start to feel heavy and tingle by lunch time they are aching badly and movement becomes slow and stiff.  On days that I try to push on, the muscles start to burn.  I go home and lay down for a period of 2-3 hours, often I will sleep. I wake up still feeling tiered but my muscles are better and I can do light activities in the evening.

Any form of activities such as house work or walking to the shop has become exhausting and need to rest afterwards.  I try to plan my days and any activities to be completed in the morning, which appears to be where I am at my best due to muscle pains.  Walking a few miles is all I can manage; if I push beyond that I start to feel wobbly and unbalanced.   I do get headaches and I am sometimes sensitive to light. Most daily activities and tasks leave’s me short of breath.  

I’m no longer convinced that the fatigue experienced is part of the natural recovery process.  I don’t understand why the existing symptoms have suddenly become much worst.  Other issues I have is abdominal pains, mostly around the appendix area which if I am honest started several months ago, which was checked out back then and no cause was established.  Until recently the pain although came on sharp became a dull ache and I put it down to pulled muscles. The pain is back and has been for several weeks.

Other issues is concentration, even with activities and tasks that I enjoy.  Reading is becoming problematic as I cannot recall what I’ve just read.

Does anyone have a similar story to me?

could this be CFS?

Thank you for reading

Andy

2

Hi Andrew.

Sorry to hear you are having a bad time.

Some of what you say does sound familiar. I was diagnosed with CFS/ME just recently and my symptoms are quite similar.

I'm a mum of 32, with two young boys under 4, who wake me every day at about 4-4.30am. From the moment I wake I feel extremely tired and as soon as I start to move, I feel as if I'm carrying a massive weight, followed by pain deep within my muscles and joints. My brain is slow-I cannot read because I Forget what has just been read. Conversation is difficult and I avoid most social interaction. I am constantly irritated and wish I could just sleep the day away. But sleep does not come easy, and I get little benefit from rest.

I also have IBS, low ferritin and low Vit D.

Please ask your doctor to refer you to a specialist or rhumetologist. I only got diagnosed because my doctor had referred me. For years I had been told it was either depression or side effects from the antidepressants. I still live in a state of denial because this Illness is so debilitating that I find it hard to believe. I am yet to get any help from my GP as there is no M.E specialist in my area and I rely on strong painkillers with little effect. Amitripyline has been prescribed, but yet to feel any benefit.

I am grateful of forums like these that allow me to discuss my illness with others that understand. I have no family or friends nearby for support and my partner works long hours.

Take care

3

Hi Andy,

I was involved In a car crash and was Injured, my exhaustion was put down To physical and psychological trauma caused by this. I've had the same symptoms since and was told that I have signs of cfs/me 18 months ago after 18 months of symptoms. It could be that you have cfs/me too yes, similar symptoms to me but, I can't work. I wonder If you could reduce your hours? You sound like your days are exhausting balancing sleep and work.

B

4

It seems that some people do go on to suffer from serious problems with post-cancer fatigue, and we don't really know why, or have good treatments for them. It could be that this could be considered a form of 'CFS', and I'm afraid that a lot of similarly poor quality research has being carried out for both.

I would expect that 'post-cancer fatigue' is likely to be a label which causes you less trouble than 'CFS' - a condition which is still rather stigmatised. There are times when a CFS diagnosis can be needed though.

I don't know too much about the prognosis of post-cancer fatigue, but two years does seem a long time, and there is a danger that your doctors may not be entirely honest with you about the liklihood of recovery, as some believe (based on no good evidence) that the contuing fatigue is made worse by a lack of positivity from patients. I think that I would try talking to a cancer specialist, and maybe be clear from the start that you just want honesty, even if they're not able to offer any help, rather than to have your expectations managed?

I would also try to have other alternative diagnoses explored, as it could be that there is another identifiable cause of your fatigue, and that it's association with your cancer meant that these symptpoms weren't properly investigated.

It could be that there is not much you can do about your fatigue problems, and that it is other social matters which affect how you should proceed? Sorry not to have better advice for you.

5

Thank you all so much for your supportive comets and advice thus far. Possibly I'm not insane after all.

@fidd. My next cancer review is in January and I definitely will be asking them for honesty. I'm not sure if post cancer fatigue gets worse without any underlined reasons. Through the macmillan site I've spoken to a few people whose fatigue increased a couple of months after treatment and was due to either hormone levels or developing anaemia. Been tested for both and I'm fine.

@Beverly 01. I run my own business and kept my clients informed since day one. There are helping as much as they can so I'm lucky to be in a position to take time out. Trouble is if I don't work I don't get paid :-(

@pipsniff. Saved the best for last. I'm 37 and also a father. My little girl turns 4 in January and has been a good reason to get better for. She has no idea what's going on in my world other than daddies a little poorly.

I can share your comment of having very few people to turn too. My wife thinks I'm either burnt out or that I've got a bug. 5 weeks on she's coming around to the idea now that it might not be. In fact my mother in law was quick to suggest CFS ME. And she's a therapist. No figure

Back to fidd. I am a little worried about being incorrectly labelled/ diagnosed. But I need help regardless.

Many thanks Andy

6

Hi Andy,

I too was self employed and loved my job and it was hard to give it up. The CAB is a good first port of call to ask for advice. I also have children, 4 of them, and its been hard asking for help from them.

Am glad you're having support from the cancer specialists and Macmillan site. My granny in law had cancer this last year and although she has the all clear, she still has the fatigue.

Hope things improve for you soon

Best wishes

B

7

Hi Andy.

i'm so sorry to hear of your double whammy health dilemmas. my deepest sympathies are with you & your family.

firstly, it's important to rule out  a ''grumbling appendix'' with the right sided pain. your GP should be able to help you with this diagnosis.

the symptoms you describe certainly fit into the ME/CFS category. however, they overlap with a number of similar conditions from rheumatological conditions to Coeliac disease, thyroid problems, hashimotos disease, b12 deficiency & folate deficiency, pernicous anaemia, severe iron deficiency anaemia  etc. the list goes on.

the most important thing right now, is to get a ''proper'' diagnosis.  this can only be done by a process of elimination i.e. ruiling out other causes of fatigue especially fatigue caused by the above conditions.  your GP should have completed tests to rule out the fore mentioned ones.  

its  very important to rule out Pernicous Anaemia (b12 deficiency) as this is a treatable condition, the symptoms of which are often mis-diagnosed as ME or/and MS. undiagnosed and untreated b12 deficiency was my pathway to infection & subsequently ME. my sister also succumed to B12 deficiency & then ME post chemotherapy theatment for cancer.  she was v. young - mid 30's.  

a conclusive  b12  diagnosis by blood test is difficult as there's no ''gold standard'' blood test.  however, a series of blood  tests can help rule it out.  these include:  1) serum b12 blood test 2) the MMA test, 3) an ''active b12 blood test.

the results of these tests need to be collaborated by the clinical  symptom presentation.  see 1) b12org. 2)the Pernicous Anaemia Association (PAS).  there's a telephone no. in PAS  web site, 3) Healthunlocked PAS. 

one of the defining features of ME is delayed fatigue post exertion. for ME/CFS diagnostic purposes the following web sites will help:  1)ME Asssociation.  in the section ''Abouit ME''  you will find a drop down on ''Symptoms & Diagnosis''.

In the ''Support'' section, you will find, by alphabetical  order, a list of the support groups in the UK.  Also, as far as i know you will get a list of the ME/CFS clinics in the UK. they run 6-8 week ME management courses.  

other useful websites: include: 1) ''Action for ME'', 2) ME Research UK. 

GP's often deliberate in giving a diagnosis of ME/CFS & often (in my experience)  need a bit of ''pushing'' & firm handling.  

do go easy with yourself Andy as pushing can  complicate matters and delay recovery if you have ME/CFS. 

all good luck on the diagnostic journey. 

and be kind to yourself.

C

 

8

Thank you Beverly.

Im sure your granny in law (love that btw) will say that the fatigue is at a constant level. Similar to what mine had been until 5 weeks ago. before it developed into whatever it is now. now it's just horrific.

I read an article online daily mail. Caught my attention it was titled I'd rather have cancer then chronic fatigue. I find myself conflicted and actually agreeing with the headline. It was a different pain that was managed this isn't managed which as I think you may well understand is rather tough going.

Andy

9

Unless your granny in laws fatigue has gotten worst like mine. Sorry I naturally assumed otherwise

10

Hi Andy,

Your first assumption was correct, Granny in laws fatigue has plateaud which I think is hard for her as, like most of us here, she was pretty active previously. She's taking It very easy these days so maybe this could be helping her stay at this level?

If it is cfs/me you have then it can be fluctuating and can have, in my own experience, times where things worsen for no apparent reason. Pain, shivers, twitching, all kinds of unexplained phenomenon pop up with this. In honesty, I get sick of resting : )

Lots of people get better from this strange condition and some quite quickly sometimes. And people get the condition from a variety of places, but, the common trait appears to be trauma, even if that trauma (eg from a virus) doesn't appear significantly greater than previous experiences. Its like somehow your system has been knocked for six invisibly.

Being kind and gentle to yourself is my advice. I know I was quite harsh to myself to begin with because I wanted to get better and pushed myself physically to somehow get back to normal. We learn by our mistakes and ignore them at our peril it is said. With this condition, it seems a really important thing to learn.hope yoir day goes ok.

B

11

Thank you Beverley 

I can be harsh on myself and I do push every day, and get frustrated for not being able to carryout simple tasks. (both mental and physical) 

over the last 5 weeks I've had days which feel better then others, and indeed Sunday and yesterday were two prime examples of that, although still very much tiered and exhausted my muscles didnt ache as much.  Last night after walking up the stairs I experienced something new, perhaps it had always been there but my heart beat shot up I counted easily 120 beats per minute and I felt extremely light headed. went away after about 10 minutes.  Not sure if that's normal either. im usually a 64-70 beat a minute guy. 

today im aching a little so see how it goes.  

the tierdness feels like its remaining the same at a high level regardless of how my body aches or not.  is that also normal if it is a form of chronic fatigue. at the moment I am measuring good days, by movement and muscle pains. 

thank you for your support

Andy

 

12

Thank you ever so much Caitlin 

I know the list of blood tests were very long and that they touched upon nutrion but not sure how indepth they were. I recall Iron was one and maybe b12 but I'll make certain when I see them next. I definatly know they tested for aneamia and testosterone levels which were my number one and two thoughts at the time. apprently they were normal. they also did thyroid, liver, kidney, protiene, white and red blood cell, electroylites, magnisum levels and the cancer markers. I know there were a few others thrown in and my GP was kind to emplain what they were looking for. 

as for symptoms CFS pretty much reads like a good close match at present, but like you said there are so many others out there with similar sounding issues, its crucial to be correctly diagnosed.  

there are some symptoms of CFS that I dont currently have or have expereinced them often *insomnia, sore throat and swallen lymth nodes/glands. 

*insomnia - I checked out the ME association website and found this line. 

..."Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night’s sleep) "....

That is a good comment - before this started I was a regular 7 hours a night sleep type of guy. now with the addition of during the day (+2-3 hours) its more like 9-10 hours a day. some nights I go to bed earlier and I've difficulty getting out of bed.   A good tipe if you find the same is to move your alarm clock to the other side of the room and set it to annoying level. or set to play justin beaber - that will get you out of bed regardless.  I've had a couple of recent nights where I've found it hard to sleep dispite being tiered and i've gotton up a few times during the night recently too... I've put that down to getting too much sleep, but will keep an eye on that.

Another thing I saw on the ME website was the cognitive issues and difficulities regulating tempeture. Cognitve issues have been present since chemo and details perfectly the issues I have.  I cannot with confidence say its a new sysmptom or one which runs alongside.  Unusualy the cold does get to me but I cannot say for certain when that started.  I know the summer months I was still cold, autom I was freezing much like today, that could also be down to the tierdness couldnt it?  didnt think it was a symptom. 

last night was my first elevated heart beat episode that I noticed. I cam down stairs sat in my lazy chair and felt mychest punding.  so I counted the beats on my wrist.  You could actually see the pulses but that is another thing to keep an eye on I guess. 

 

 

13

Hi Andy,

I too find the inconsistency can be frustrating. The unrefreshing sleep, intermittent pain etc its confusing for us with it as well as those around us.

Re the heart beat, get it checked out as that could be a different issue. Although a friend of mine with cfs/me gets it and I get it because I have positional cardiac arrhythmia. The heart races and then goes back to normal its an unusual issue to have. But, it could be POTS? Or another condition that could cause fatigue so, strongly advice the trip to the docs. Its all very individual in some ways? I rarely get lack of sleep either. good days the same -Individual. Sometimes, not falling to one side and appearing drunk is a good day even If I have mind fog. Other days can be laying In bed exhausted but with no pain, and very rarely, I can feel relatively ok, maybe a bit giddy even. Mostly, my days are a mixture of all sorts. Am kind of getting towards acceptance. Not towards accepting defeat, just that this is where I'm at at present and I need to deal with that as it is.

Hope your day has less pain than you've been having.

B

14

I've just had a couple of good days, still very tiered but a little more human, and not so much muscle pain.  Today however isnt a good day, despite plenty of rest. 

taking some of the advise I've had to email a leading specalist in the type of cancer and treatment I had and asked him the specific question to find out if this could be even remotely possibly so far since treatement ended nearly 1.5 years ago. 

I'll let you know what he says. 

in the meantime I've got to make another GP appointment and I'll be asking about the b12 test recomended by Caitlin.  

hope eveyone is doing well today 

love 

Andy

15

Hi Andy,

Glad you've had a couple of good days and that you're checking things out to eliminate any other causes. I don't know about you but it feels better for me to know that its nothing else. Cfs/me is enough to handle : )

B

16

But, am sorry today hasn't Been good for you. Resting doesn't always give me results that day. hope tomorrow brings the benefit of it.

B

17

Thanks Beverely 

I agree resting doesnt make me feel any less tiered, but when your this tiered whatelse is there you can do? :-(  im trying to ignore the tierdness and pains now and cant..  frustration and general snappyness is setteling. although I've read thats normal, its doesnt make it any easier. 

at this stage a lable could only help to give it a name, maybe I'd feel a little better knowing its not somewho fabricated by the subcontious 

18

I've heard back from my Oncologist specalist. 

he doesnt believe that the symptoms are related to the treatement which I received over 1.5 years ago.  he is aware that I've been living with Fatigue and has asked if I have had a full blood count, hormone level check and cancer marker test, which I've replied yes recently.   He wants to see me on christmas eve bringing my appointment forward by 3 weeks.  I think on top of the stresses of christmas that I will decline, afterall its only 3 weeks until I would be seeing him anyway and he's confident that its not related. 

When I got cancer I was very lucky to have been appointed a leading specalist in the type of cancer I had.  he's a highly respected Oncologist who has written many papers over his 30 year career and supports all the major charities as well as chairing international conferances.  

I'm confident that is now not related to the previous condition and can be crossed off the list.  - still need to find what it is. 

xXx

19

Hi Andy,

I agree, it doesn't make anything feel less by labelling it. I've just been to physio and they made me feel like somehow my body is pretending to be in more severe pain than it is? Which stops me being active? Interesting theory that ...as I'm sure you'll agree! I hate the idea that I'm seen as somehow embellishing what's going on. I never really went to the doctors before all this started. Still, I'm hoping something changes. Of course its abit catch 22 when half the time yr resting and when you do things it causes pain and physio says the pain is due to inactivity. ... mmm..

Glad you got a quick response from the oncologist. I think you're right to say no to Christmas eve, so much more to think about at this time of year, especially with the cfs/me cherry on the cake : 0 and, as he says, he sees no link between symptoms and the proceedure you had.

Hoping your day isnt too painful

B

20

That's just awful. Why don't people just understand that it's not the want of not doing something but the ability of CAN'T do it.

Everyday I force myself out of bed and off to work. I have my own business and I'm not employed don't have any sick pay benefit.

I work until the point where it becomes unbarable and then go home. I have to then go to bed lay down not able to do anything. It not like I'm skiving off watching a bit of telly or Christmas shopping or anything.

Wouldn't be so bad if you can actually do something with the time off. It sucks

I won't ask if pyshio helped with a comment like that.

I do force myself to be mobile when at home. And if I can try at least get out for a walk. It's frustrating isn't it

XXx