Not sure if I have cfs please help

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Hi everyonesmile new here hoping for some help.  Im due to have bloods taken tomorrow to rule out anemia or thyroid  problems etc before dr will look into cfs. Basically for the last year I haven't felt myself and have been up and down the drs and hospitals for numerous tests..I kept passing out at first so had an ecg heart monitor and blood pressure monitor. .that shows I have low blood pressure o also had a tilt table test and I passed out. Was just told I had hypotension.  Also went to the drs to say my legs ache all the time.  Sometimes feel like im walking in thick mud.i was told I had sciatica! ! Over the last six months or so I have been so exhausted.   I finish work at 3pm go home exhausted have a nap and wake not feeling particularly refreshed. My legs still ache. I  have headaches.  My elbows hurt. My eyes get sore and my throat and I feel like I am getting the flu although I don't have cold symptoms.  My memory isnt what it used to be and I sometimes struggle with what I want to say. The dr has asked me to write a diary of how I feel daily whilst I wait two weeks for blood results.  Ive also had insomnia whilst that is ok now im still tired in the afternoons.  But sometimes still find it hard to get to sleep.  Oh I was also diagnosed with depression a year ago.  I feel so lazy and a bit like a hypochondriac it is getting me down.  Sorry to go on I would just like some advice from people that are in the no..thanks allsmile sam x

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  • Posted

    Hi Sam,

    First off you are not being a hypochondriac! your symptoms sound like CFS/ME to me, but make sure your doctor does all the tests he or she can to rule out everything else. CFS/ME has a physical cause or causes, so take heart, there are things you can do to help yourself if it is CFS.

    I have had a similar experience since last Christmas, inclusing passing out a couple of timeso, palpitations, horrible exhaustion, feeling like a zombie, sore eyes and throat - oh and the mud-walking! Turned out I had low iron and B12, and correcting these helped a bit but the tiredness never went away. I am quite a bit better now,still working (six weeks off in the summer definitely helped though - I work in a college). What helped me was to supplement with minerals and vitamins, and changing what I eat to exclude grains and pulses. This won't help everyone, I believe as there are multiple causes of this disorder, so we all have to find what works for us. Look into pacing (which means only doing things which will not push you into extreme fatigue so you "crash".) I have a colleague who was diagnosed ten years ago, she was so bad she had to give up work and move back in with her parents. She found homeopathy and some allergy testing helped her - she has made nearly a full recovery and seems full of energy to me!

    So there is hope for the future. If you look under Professional Reference on this website and search for Chronic Fatigue Syndrome, there is a list of tests doctors should be doing to rule out other diseases. It also says NICE recommends

    " that the 'tilt table test' (laying the patient horizontally on a table, then tilting the table upright to 70° for 45 mins while measuring pulse and blood pressure) should NOT be routinely performed."  But that is in the UK - are you in UK or elsewhere?

     

    Take care, and let us know how you get on.

    Jean

     

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    • Posted

      Hi Jean  thank you so much for your reply.  Sometimes I think im going nuts imagining my achy legs and tiredness.  Sometimes I even think perhaps im just lazy! ! I used to run kick box socialise a lot more o just haven't the energy anymore.  Im sick of sitting on this sofa. Sorry Jean im feeling sorry for myself today.  Normally the life and soul but it's too tiring lol. Although I did go to a wedding over the weekend had a wAil of a time.   Im paying for it now lol. Ive had to have a nap every day and my legs are sore. Anyway im going on again lol.. I've read about pacing and thats what im trying to do ..it does helpsmile if im tired I rest. Which is easy at the moment as I've been signed off work.   Oh yes im in the uk ..I ddidn't know its not recommended. .all I know is it made me feel awful.  Thanks again for your reply smile sam
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    • Posted

      It is so easy to think it you are imagining things or at least thinking they are worse than they are. But only you can know your body and what feels normal and what feels painful and wrong. Trust your instincts, mostly. I know when I am feeling a bit sorry for myself or down generally, it always make any pain worse.

      It doesn't help that doctors don't seem to understand too much about chronic fatigue, and give you lots of different possible diagnoses.It is good that your doctor is doing all the tests.  In the past CFS was even seen as all in the mind. It really isn't!  There are definitely physical causes. And it does get you down, I know, so don't be frightened of coming on here and having a bit of a moan as lots of us are in the same position.

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  • Posted

    Your descriptions of symptoms include mine which I have never thought were connected.  Three years ago I just kept pushing through (especially after I was told that it was probably deppression).    I got to a point where I just collapsed and spent nearly a year either in bed or sitting in a chair.  I can emphasise with all that you say.  I have felt guilty at not doing even when there was no choice. Over the last 8 months there seeme to be a lot of improvement, I had days without feeling exhausted  but I have not been careful enough to pace recently and have begun to feel exhausted again. 

    I can't offer you much advice as I am still wrangling with it.   But I do know that you cant just push through.  you have to learn to pace yourself and accept that you cannot do as much at the moment.  (Easier said than done I know)

    My own way of coping has been to try and see the glass as half full rather than half empty.  When I could not move much at all, I would sit in the garden and give thanks for the birds and the sunshine.   

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    • Posted

      Hi pat thanks for your replysmile im definitely going to start pacing myself.  I've just got to learn not to feel guilty.  There is definitely something wrong I know my body.  Im going to wait till the results come back then go see the dr if nothing comes up in the bloods then I am pushing it further I dont want to be fobbed off anymore.  I hope you feel a bit better soon pat. Thanks for your help xx
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  • Posted

    How is your diet? are you getting the right nutrition for your body? Maybe that would start a bit of a recovery.

    Richard

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    • Posted

      Hi Richard.  Im pretty good with my diet I always try to eat healthy and have a lot of fruit and veg.  Xx
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  • Posted

    Hi Sam, So sorry you're having the run around with your GP - Here is a very useful medical info pamphlet you could take to show your GP and other health professionals - I hope the moderators will allow this to be shown- if you see page 9- it shows how our bodies are affected by CFS/M.E. http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf 

    Your hypotension could be due to CFS and also maybe POTS? One day, someone with CFS will be be able to walk in to a GP and be accurately and sympathetically diagnosed, at the moment some of the medical profession dont seem to have a good grasp of it. Heres an updated verison of the above document showing you a  checklist for CFS see page 12. http://www.iacfsme.org/LinkClick.aspx?fileticket=Pil0KeDIc2M%3d&tabid=509. Hope that helps xx

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    • Posted

      Hello flower pot ladysmile thanks so much for your reply and help. I shall have a look at the link now. I should have my blood results by Friday so will print some information off to show the gp. Im still doing my diary and I just feel like im just moaning about aches and pains lol. But im being honest. I have had 2 quite good days so that was nicesmile im so glad I found this forum every one is so helpful.  I shall keep you updated take care xx
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  • Posted

    Glad to be of help Sam-remember to stand your ground with all Health Professionals regarding getting the correct care for your condition- just because they dont understand it, doesnt mean you are not suffering. Best of luck to you :-) xx
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