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is it CFS?

Posted , 5 users are following.

andrew_08416
andrew_08416

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

3 likes, 83 replies

83 Replies

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  • andrew_08416
    andrew_08416

    Posted

    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 

    • Beverley_01
      Beverley_01 andrew_08416

      Posted

      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

    • andrew_08416
      andrew_08416 Beverley_01

      Posted

      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

  • andrew_08416
    andrew_08416

    Posted

    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

  • andrew_08416
    andrew_08416

    Posted

    Contacting the specalists. 

    I thought that the group could well benefit knowing that I had recently contacted two specalists following the report from my oncologist team that they do not believe the current issues are related in anyway to my previous treatment.  It was a long shot but well worth the effort. 

    contacting York University (UK)

    Found several interesting publications on the various types of fatigue including CFS/ME.including trials for new medications.  Although many of the articles were 5 plus years old, I thought it would still be worth contacting them.  So I dropped them a carefully structured email.  

    The reply was very polite however they are now purely a research facility on the economic of health. and couldnt really help. 

    Columbia Univeristy Medical Center (USA).    

    like me you may have stumbled across or have heard about the recent potential discovery that CFS/ME is biological and that they believe Cytokines are could well be the cause. 

    This looked like a good avenue to look into which I think could still show some results, all things considered.   I had Chemotherapy, we all know destroys the bodies immune system, and the drug that was given has been known to cause a temporary to Cytokines inbalance - aprrently. although the Oncologists dont believe its connected. so a little confused. 

    Knowning that we cannot name names, I wrote on Friday an email to the lead author of the paper in question and she responded to me yesterday (sunday) 

    again a very polite response but sadly she advises that they are too early in the research to provide any real support.  She has provided several really good suggestions and have highlighted the importance of distinguishing between post treatment and current issues. 

    I think my next step has to be that I ensure a Cytokines check has been done, im a little fuzzy over that test and cannot be sure that it was done, as part of the checkups or at last test. But could be worth finding out. 

    Will report back when I know more.

    regards

    Andy 

     

    • Beverley_01
      Beverley_01 andrew_08416

      Posted

      Hi Andy,

      My Inbox didn't update me on this post at the time. You have been busy! Keep us informed of any progress.

      B

    • andrew_08416
      andrew_08416 Beverley_01

      Posted

      Thanks Beverly.

      Will definitely do so. I'm fortunate to have means to track down people who are of interest and even more fortunate that they take time in responding.

      I'd lover yo get a test done just to either rule it in or out. I cannot get an appointment with my GP as there fully booked for the next 3 weeks. I'm told to call every morning at 8 am.

      Still got my oncologist follow up 2nd week of January so if no joy with GP then I'll get one then

    • Beverley_01
      Beverley_01 andrew_08416

      Posted

      Hi Andy,

      Same problem here re doctors and 8am call, and all prebookable appointments are all full?

      Could do with your ability to track things down. .. paid a bill online earlier and my cashcard is nowhere to be found! Lol

    • andrew_08416
      andrew_08416 Beverley_01

      Posted

      Thanks Beverely 

      Dont you hate it when that happens.  Usually refreshing the browser will show up  your card details but then you will also have to go back into he transaction usually from scratch. 

      Good news tho, after 20 minutes of being advised that I am in a qeue and that I was number 9 waiting- I got an appointment for this morning 

      Yeah :-) 

    • Beverley_01
      Beverley_01 andrew_08416

      Posted

      Hi again,

      It was my actual card that I lost (blush) felt very silly as it went into thin air! It had dropped down and was completely hidden from where I was looking luckily not stuck somewhere I couldn't access : ) it was frustrating because I had It one minute then gone. I was fast forwarding thinking its nearly Christmas, because my local bank closed, its a 40 mins trip to town i don't want to do, arrggh! So glad it turned up

  • andrew_08416
    andrew_08416

    Posted

    GP appointment this morning.

    Sadly nothing showed up in my previous blood tests. So none the wiser.

    Next step is new blood tests checking for enzymes and checks on vitamin levels B12 and D and acids I believe. There also giving me an ECG.

    My GP is a very honest chap. We discussed my diet and daily activities. He doesn't expect to see anything abnormal but says he needs to rule out a few unlikely potentials. If nothing then he says I'll be refered to a specialist.

    I did ask about Cytokines and he's promised to look into it between I see him next.

    Still none the wizer

    So I asked can we treat this like we would an infection and target each symptom. 3 main....

    1. Energy levels.

    2. Muscle pain.

    3. Memory.

    After listing

    • andrew_08416
      andrew_08416

      Posted

      .... after listing all that I'm doing he thinks I'm doing all I can right.

      He said most importantly that they believe something physical is wrong but cannot find the cause that was following a physical exam. Guess that's reassuring to a degree

    • Fidd
      Fidd andrew_08416

      Posted

      Sometimes having people be honest about the fact it's a difficult situation and they don't know what to do is the best outcome available. Fingers-crossed for the future though.
    • Beverley_01
      Beverley_01 andrew_08416

      Posted

      Hi Andy,

      Glad you got in to see the doctor at least : ) it can feel like a medical merry go around. Its good nothing "bad" came back from the blood tests but equally sadly none the wiser rolleyes

      Hope your day has been relatively pain free.

      B

  • andrew_08416
    andrew_08416

    Posted

    Yeah, feels like its going to be another good day. 

    I'm happy to report that the muscle pain has subsided after almost three weeks of agony and burning feelings. Both arms and legs still feel heavy (similar to the aftermath of a dead arm/leg) but I am not in any real pain other then a dull ache. 

    now if I can feel less tiered I will be a happy chappy 

    x

     

    • Beverley_01
      Beverley_01 andrew_08416

      Posted

      Hi Andy,

      Sounds good news : ) hope it continues for you. What do you think helped? I know that sometimes its Impossible to know but, maybe you can pinpoint something.

      I feel so mentally overloaded at the moment and Am resting .....again! Nothing major just the trying to juggle the condition with "normal" activities and the added bonus of it being the run up to Christmas : D which I am looking forward to.

      Hope yr weekend goes well.

      B

    • andrew_08416
      andrew_08416 Beverley_01

      Posted

      Thank you Beverly.

      I had a little word with the local pharmacist who advised me on high strength nurophen and paracetamol. The pains virtually gone. Which is good.

      Still feels heavy and stiff and I wish the twitches and shakes would stop but hay ho can't have 3 very thing I guess

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