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Losing me!

Posted , 12 users are following.

chrissyboo
chrissyboo

Hi everyone,

Sorry this is a depressing post :-(

I just feel like I've lost myself completely to this (swear word) illness!

They call it a pain and fatigue illness but it is SO much more!

I have changed so much.

I get angry really easily,

cannot multitask,

can't even follow the story of a TV programme let alone a book.

I used to play piano, now I can't even read music!

I've lost big chunks of childhood memories

I can't remember what people say to me so have to have a chaperone.

I have no idea of the passage of time.

ETC. Etc etc

Why is none treating me for these other very scarey symptoms! They don't even seem concerned by them at all but I really can't go on living like this! I'm only 35 yet I feel older than my 84 year old grandmother. Does anyone else get these kind of symptoms? Have I been misdiagnosed? I hope not it took 5 years to get here.

Krissy

1 like, 27 replies

27 Replies

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  • sally_14743
    sally_14743 chrissyboo

    Posted

    Hi Krissy 

    they are m.e. /cfs symptoms ...

    have you been referred by your GP to your nearest cfs/ m.e. Clinic in hospital ..  These clinics diagnose you and offer you a occupational therapist trained in the illness.. Absolutely invaluable as they can come to your home once a month and tailor a whole treatment (although no drugs) specifically to you .. They basically teach you how to recover ... It will be slow but gradual .. They really are good and so understanding .. And just having someone who understands offers solutions but is honest too ..not a charleton making money out of you on dreams .. It has helped my hubby mentally and physically and he is slowly improving ..

    • chrissyboo
      chrissyboo sally_14743

      Posted

      Hi Sally,

      Is this in UK? it was a neuro who diagnosed me and my doc says he can treat me and won't refer me anywhere else.

    • sally_14743
      sally_14743 chrissyboo

      Posted

      Hi 

      yes in uk ...we are in Cornwall so Truro hospital has a m.e. Clinic .. Worth checking if your local hospitals have a clinic ..hope they do .. 

    • andrew22534
      andrew22534 sally_14743

      Posted

      Hi Sally are they good in Truro? i know your post previously was impressive, but... My GP hasnt referred me back since my relapse so... just wondering if it really is worth a try?
    • sally_14743
      sally_14743 andrew22534

      Posted

      They are good . Apparently Cornwall has excellent occupational therapist working from the m.e. Clinic ... There's no instant magic cure but my hubby is improving slowly and he found his OT encouraged him to do things he wanted to do ... When I was going no you will relapse 😱 She would say how can you adapt things so you can do it .. Make it less stressful, sit down while doing it have time out ..plan an escape, a quiet room etc ... He has done things and not relapsed and that gives you self worth and confidence that u can gradually pull out of this horrific illness ...

      i reccomend .. 

    • andrew22534
      andrew22534 sally_14743

      Posted

      Thank you, i was doing ok and improving but then after three years of progress made a big step backwards, a very big step... held for a while and now and still drifitng down. so will see my GP and get referred... thank you
    • sally_14743
      sally_14743 andrew22534

      Posted

      Hi 

      my husband relapsed 2 years ago he started to feel it lifting and got a job after two weeks he was finding it hard to climb the stairs ... A relapse knocks your confidence makes you apprehensive to do things ... He then got referred and the OT explained how much you should increase activity weekly 10 percent if you feel your energy increasing .. That supervision from the OT gave him the confidence to start doing things again... They do a lot of cognitive behavioural therapy too and he has discovered by talking stuff through he uses excessive amounts of energy emotionally ...he finds talking to strangers exhausting because he is shy and he stresses .. Although he is loud and outgoing this is a front and putting on this loud personality uses more energy than physically .. All this has helped him to pinpoint how to manage his m.e and enable is body to improve .... Hope that encourages you ...view a relapse as a learning curve to analyse it and then work out your personal plan to improve and recover ..

  • anna41347
    anna41347 chrissyboo

    Posted

    Hi Krissy, I am sorry to hear how you're feeling. I am 36 and I keep saying exactly the same thing to everyone, that I feel like an old lady. My joints are sore and doing any physical activity exhausts me. I have given up socialising as I cannot focus on conversations. I also have no concentration and terrible memory. It's very depressing, I feel like because I am young and I don't look particularly ill, everyone thinks I am making it up or exaggerating. I am living in Germany at the moment and trying to learn German grammar - I keep breaking down crying in class as everyone else is getting it and I cannot even understand what's going on - complete mental confusion (although a lot of people would experience a nervous breakdown trying to understand German grammar!). I am going to see my GP again tomorrow to get a referral to see a neuro as I think that might get me a step closer to diagnosis.I have an appointment with a rheumatlogist in October. I am sure you are doing this already, but I have cut out alcohol, cigarettes and completely cleaned up my diet, no sweets, no red meat, no processed foods and I have also cut out wheat. I am drinking 2.5 liters of water a day and eating lots of fresh veg and fruits, fish and chicken..  totally boring, I know. I used to be out all the time, partying and having fun. I am a totally different woman nowadays.  I wish you all the best with getting better - I hope you get some good advice from the more experienced people on here. 
    • sylvia17461
      sylvia17461 anna41347

      Posted

      The only way seeing a neuro or rheumatologist will give you a " diagnosis" is if all other tests have been discounted !!!! There is no test for ME/ CFS!! How do we patients know all tests have been carried out , do we know which tests should be done , do we know our GP knows which tests to do, do we know the lab will do tests our GP has asked for , the answer is no!! GP s know a little about a lot specialists know a lot about a  little and even then they can get it wrong .there is a lot of controversy over ME/ CFS / fibro . With the right tests done we will in all probability get a correct diagnosis . 
    • jcnps
      jcnps sylvia17461

      Posted

      CFS/ME is often known as a 'waste paper basket diagnosis' - we all have lots of tests done and they all come back negative - hence the papergoes in the waste pape basket!

      However this is important as it rules out these other illnessess.

      Consultant CFS/ME specialities are usually passionate about their work...its not any easy area to work in as tends to be regarded as a Cinderella speciality - not much time/money invested by the nhs.

      Things have improved a lot in the last 10yrs and will continue to do so..that has to be 'enough' otherwise I risk further sabataging myself.!

      Kind regards

  • jcnps
    jcnps chrissyboo

    Posted

    Hi Krissy,

    Sorry to hear how you are at the moment.

    I can completely empathise as its how I was at one stage - I lost my ability to concentrate, finish any task as I would get soo tired - changing the sheets took ages as had to keep stopping. had to stop work and slept - unrestfully a lot of the time.

    Symptoms are difficult to treat as the cause is unkown but I was and am convinced that it is caused by a virus/viruses which work their way through the body's system.

    I did a 3mth group session wwith the local clinic which I thought would be useless but was actually quite useful. Nothing dramatic - talked about relaxation, yoga, work/life balance - all sorts and it was useful to meet others in a similar position. i also had counselling via the GP surgery, refused anti depressents as I maintain its reactive depression caused by hte illness not clinical depression - in my case anyway.

    I had to let go of everything - job/career, flat, car and accept that I had been taken down by a virus......however never did I lose sight of the fact that I was not going to be beaten by it.

    Dont compare yourself to your Grandmother - or anyone else.   I kept in my mind a picture what I had achieved and how I wanted to be and would be - someday.

    Learning to really relax and rest properly is key - I had to do that and continue to.

    So much of what has been said to me/is said to me is useless...My body no longer reacts in a good way to excercise - I need to keep moving but in a gentle way..sometimes excercises in bed have to be it for the day!  I concentrate on what I need to do on a daily basis which is often not how much I want to do but if I ignore that and let the 'wants' take over I frequently a painful day or more!

    You need to get an official diagnosis frkom an CFS/ME Consultant and if possible go through a progamme with them

    Good luck and you're far from alone in how you feel...keeping in touch with others recovering from this is important...i refuse to say 'suffering' for me 'recovering' is soo much more positive

    • Beverley_01
      Beverley_01 jcnps

      Posted

      Hi jcnps,

      I hear what you are saying about the virus idea and for some this Is true however, mine was definitely brought on by a car accident as I woke feeling like this the very next day and had It since. I get the same fuzzy head, burning ear, feeling like I have flu symptoms etc that my friend who has cfs/me after post viral fatigue but arrived at it on a different path. I think there are different paths to this same destination.

      B

    • jcnps
      jcnps Beverley_01

      Posted

      Hi Beverley

      Interesting.

      Its made me think of a couple of things

      1 what viral infection (s) had you had in the past - even distant past -  that might have left a 'foot print'

      2 did you have any blood tests to check for Epsten barrr, etc

      And I'm intrigued about the destination --where are we??   bit tongue in cheek that!!     Iif we all arrived by different paths does that mean that there are different paths to recovery?  It would seem to be the case as we all try different treatments, etc which work for some and not for others.

      I am laid low at the moment - physically more so than cognitatively hence coming on here lloking for answers - again ...

      The job I'm doing at the moment is very demanding but also soo satisfying and rewarding - well most of the time anyway!  I'm hoping that what has happened this week is just a blip along the way.  Time will tell. Meanwhile I need to keep my spirits up and treat myself well, not push too hard!

      Have a good day

      Kind regards

    • Beverley_01
      Beverley_01 jcnps

      Posted

      Hi again,

      I had the blood tests that the cfs/me clinic here expect to be normal before the will commence with treatment. The senior nurse there is ok with the idea of root cause being the crash?

      I recently saw another cfs/me specialist who said the same. Saying I have cfs/me with fibromyalgia. On the nhs info it says there are many possible root causes.

      This is what it says-Fibromyalgia is often triggered by a stressful event, including physical stress or emotional (psychological) stress. Possible triggers for the condition include:

      an injury

      a viral infection

      giving birth

      having an operation

      the breakdown of a relationship

      being in an abusive relationship

      the death of a loved one

      Different paths as I say. Same symptoms was what i meant by destination : )

      Currently, like you i am needing rest but cognitively not as foggy. Still run out of cognitive battery if social too long though! am presently watching comic strip presents. Seen before so hopefully won't be draining.

      Hope you're right and yours is just just blip for you.

      B

    • jcnps
      jcnps Beverley_01

      Posted

      Hi Beverley

      Thanks for that...prior to the viral infection that flattened me 12yrs ago I had experieinced several of the triggers on the list so probably explains why the virus has had such a devastating effect. A body can only take so much!

      One of the things that is helping me in my recovery is the fact that in the last few yrs there have been a lot of positive things happening in the family - marriages and births - although of course they bring stresses too!

      I have been through so much - its keeping a positive spin on it that helps - having the ability to laugh and cry about it all!

      Lots still to do and see - not all in one day though!!

      I think the far reaching effects of stress on the body are still being unearthed as is how to treat/prevent them. 

      Kind regards

       

    • Beverley_01
      Beverley_01 jcnps

      Posted

      Hi again,

      Today isn't good for me as I did too much yesterday! Balancing is so hard to do. Am totally flat today so far. I just wanted to say about laughing and crying with this. I find I cry alot more and others seem to think its through sadness but, often its as if my eyes just need to do this? Do you ever get that?

      B

    • olivetree
      olivetree Beverley_01

      Posted

      Hi Beverley

      I found your posts with jcnps very interesting. I also believe that CFS/ME can be 'set off' by a variety of events; in fact i have been wondering whether the cause is actually a kind of chain of events - some way back in the past (leaving a footprint) when the right (or should I say wrong) kinds of ingredients are in the mixing pot could it then trigger the illness?  eg.

      Accident / trauma / shock

      Emotional / spiritual damage or distress

      illness / infection

      Loss / grief

      Stress

      If so, does it mean each 'ingredient' also needs to be addressed or treated to fully recover? Just resting & pacing and learning how to live with this is not the same as recovery but for many of us it does at least bring partial recovery.

      So many thoughts about this but few answers. If only this could be researched more deeply.

       

    • jcnps
      jcnps olivetree

      Posted

      Hi

      For me it has meant investiging the ' ingredients' by various different methods - such as counselling, craniosacral therapy, physio therapy, often the results have been surprising and holisitically very beneficial.

      not alway easy and often very tiring which is difficult when you're already tired but looking back over the years I believe it has all certainly helped.

      I dont consider myslef to be cured but I am certainly continuing to recover and cope with  minor set backs more easily and quickly.

    • olivetree
      olivetree jcnps

      Posted

      Thanks, that's encouraging to know I may be on the right track then.  Hope your recovery journey continues. x
    • Beverley_01
      Beverley_01 olivetree

      Posted

      Hi Olive tree,

      I think you are right, there isn't enough research. Sadly, the medical model has only two paths, its made In the mind or made in the body. Environment, life events,socialization aren't actually that far up the scale but are they in many conditions? I wish I had the energy to do a study on it! There are so many of us with this. I think that the rest and guided activity is the best the nhs can offer and does work for some. I just find It impossible to carry out. How do you do with it?

      B

    • olivetree
      olivetree Beverley_01

      Posted

      Hi Beverley

      Like Krissy I feel I have lost a big chunk of my life to this illness and it's not just the pain and fatigue, it is so much more. NO ONE really understands unless they have/had this.

      After many years of boom and bust trying to manage the best i could over the last couple of years I have continued to get worse. I find it really difficult to manage the pacing and resting it's hard to get out of that old pattern.I feel embarraced and think people don't believe I can't carry on.  I'm too exhausted to try and do anything else about finding a way out of this.  Trying to hang on to my job, doing only a few hours a week now but seriously I should stop working but I'm afraid of becoming unemployed and unemployable - all the stress of claiming benefits or being made to work because they won't believe me either.

    • Beverley_01
      Beverley_01 olivetree

      Posted

      Hi Olive tree,

      Sorry to hear its so difficult for you to stop working and maybe get some extra rest ? It is so hard to get the right balance. Could you be referred by doctor to cfs/me clinic? Could they help? Also, could the citizens advice bureau help you with regard to cfs/me and benefits?

      Yes, its impossible to get people to understand how utterly awful you can feel with this. How you can get worse whilst looking the same. It can really affect how you feel about yourself when it seems no one believes you.

      I know its hard when you feel exhausted but, plan something good for yourself one day soon. I felt so poorly with it earlier, I had a bath with a fancy bathbomb from a place that only uses fresh herbs,flowers and oils and took myself to a darkened room. I really feel that cutting out as much light and sound when I feel bad really helps. I also had a cry. I don't feel as ill now but, still have no energy. I think the bath treat helped a little.

      Hope this helps

      B

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