Losing me!

Brain and nerves
1

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

2

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 ..

3

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.

4

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. 

5

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 .. 

6

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?

7

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 .. 

8

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

9

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

10

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 . 

11

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

12

Hi Chrissy,

Yes, like a lot of other people with this, I completely Empathize with the symptoms you describe. It can be so distressing and difficult to see ourselves as so unable to do the things we want or could do previously.

Its so hard to accept these other parts of cfs/me. Sometimes it makes me miserable too but mostly just frustrated. I've stopped getting annoyed with myself though. Tonight, I told someone I lived in London when I live nowhere near and was nowhere near at the time! I corrected myself and wasn't bothered that it may have seemed foolish. We have to be our own best friend on bad days with this condition. Be gentle with yourself. Rest as much as you feel you can/need to and if you can, surround yourself with things you like.

Hope this helps

B

13

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

14

Hej to Chrissyboo - just a short one as I am in a bad state after a journey, but to say hang in there! A lot of adjustment is needed to live with this illness, but my experience is that even the best one sometimes breaks down and you have a relaps of grief and frustration and fear over it all. They can be violent.

Be nice to yourself, it will likely pass.

 

15

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

16

Hello, just wanted to add my comments as I feel your pain on this one.  I was diagnosed with CFS four years ago, after a zillion blood tests, trips to various specialist etc etc.  As others have said this debilitating illness is barely recognised by doctors and it can become very emotionally draining trying to convince both everyone around you, doctors, family, friends, work colleagues etc that you feel so unwell when there is no evidence.  I've lost count of how many friends ive lost, how many dates ive not turned up for, how many good times ive missed, the holidays ive been on and not enjoyed, the list is endless and makes me feel like ive wasted the best years of my life.

 The only advice I can offer is push and push your doctors, get your thyroid, adrenals, pituatary, hormones checked.  Don't let them fob you off with anti depressants (here in the UK its the doctors answer to everything....prescription (money making) drugs that really don't help (so you return to the doc for more prescriptions....more money making) Anti depressants whilst may help in some cases, the main reason your feeling blue when you have CFS isn't because your depressed it's because your fed up of feeling so ghastly day in day out.  

Once all other processes of elimination have been addressed and your once again left with a blank faced bored looking doctor (standard) then you have to become a doctor of the Internet....a Google Phd and trawl every bit of information you can find and join sites like this for support and guidance.

I strongly believe now after all these years suffering, stress is the biggest factor and can only be resolved by diet change, lifestyle change, including high quality supplements, amino acids, vitamin b12, vitamin D, omega 3...read up as much as you can on these things.  I also believe ridding your body of toxins would be beneficial, mould, yeast, candida, parasites all need to be addressed, quit taking anti biotics (again overly prescribed) if you do have to take anti biotics, then back up with pro biotics.  Try extra virgin coconut oil it's full of probiotic and can really get to work quickly in killing of the bad bacteria.  The Gut and the digestive system if out of whack can really bring a persons health down over time... "You are what you eat"  as the saying goes.

CFS/ME is a horrible illness and no one knows how to get rid of it, it's all a process of elimination. Maybe one day those big get rich quick pharmaceutical industries will come up with a vaccine/drug/intervention make us all better and we will all be free of this debilitating soul destroying sickness...but I somehow doubt that given healthy people aren't good for economy and such! 

I sincerely  hope you feel better soon, enjoy the good days and relish the rest where you have to.  Best wishes to all of you suffering 

 

17

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 ..

18

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

19

Krissy ,

I have been there and often get there on the list by the end of the day even on a good day. My RA is the one who diagnosed me with FIBRO after he pulled and tugged on me. No test beyond that . He gave me my meds and explained that my daily intake should be less than 2000 calaories a day. He also asked if I could take a few days off. I laughed at the moment not knowing what the future was going to hold. I see him on a regular basis, but each time he increases my meds , I get worse and he gives a higher dose.I am now trying to get into pain management and having several test done. I firmly believe it is thyroid related. Although my new GP has one of the test for LUPUS , my hubby and I explained this to the RA and he got insulted. He made the comment that 1 in 5000 have Lupus and it was absurd, as my hubby puts it chances are if it could be whycouldn't it be me. All of the medicines that I ever take I am the 1 percent who face the side effects of the medicine.

How I see it we get angry for many reasons , one being the pain that we are trying to keep to ourself or we would start biting , kicking and hitting people for not making us better or knowing the answers. Secondly, I think we get mad at our selves for allowing this to take over how we live. I can't say much more on that as I always thought God and I was in control of mylife. Thirdly this label name , able to have a name with no cause , no cure and it taking over people's lives, families, jobs, memories, ect.

In the terms of multitask , I think I still can but I am not sure if I have had the possibility since I had to withdraw from my last semester of college this semester.

I often stare at the t.v. and don't really watch , but I did that before . I never had time to watch t.v. , I can say that I was finishing a semester of college as this "Fibro" entered my life and I managed.

I often share life memories with my children as I never now when I will be called to heaven , so I share as much as I can.

Yes, I deffinitely need a chaparone especially for doctor's appointments and driving. I don't trust myself on Lyrica , I can't see clearly lately , my heelas feel like I am standing on razors, I have this horrible metal taste since I took the first pill I took and it never left. It makes me sick to take it. I am becoming so weak , I can barely open the front door . I am cramping ,and much more.

I never had a presence of time , I woke up and went until I couldn't go no more and then did it again the next day, now 8 pm is my bedtime most nights .

I walk around like I am 90 at times, I have a walker it helps. I have found accupuncture helps just as much as the meds. I have to have hand and bladder surgery and can't till the pain subsides , really this is going to happen. At this point I am ready to call the news crew when it does because I have felt like I got either thrown by a ride at the fair over and over or I got in a major vehichle accident.

Some days are better than others , and I am thankful for it. I too am becoming deeply depressed, frustrated and annoyed that I am not doing the things that I need to or that I once did. Good Luck ! I am at the point I realize that we all have different symptoms and different treatments will help different ones. I have tried the Guaffessian Protocol , either I didn't do it correctly or it didn't work for me. I am researching the next treatment .

20

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