Do my symptoms sound like CFS to you?

Brain and nerves
1

I was diagnosed with CFS about 11 years ago, but to be honest I have never really accepted the diagnosis for various reasons and although my doctors have found various things wrong with me them seem convinced that CFS is causing most of my problems. 

My symptoms are:

Severely reduced mobility, I can walk around the house using 2 walking sticks and only make very slow progress. I use a wheelchair whenever I leave the house. I can climb the stairs but I normally go up on my hands and knees and limit how often I need to go up the stairs as much as possible. Luckily we have a downstairs toilet. 

Cognitive problems, I have very reduced concentration, I can only concentrate on a task for a limited period of time and find any intense concentration very tiring. I suffer from brain fog, very bad working memory and often forget things from medium to long term memory. 

I get dizzy very easily and quickly if I have to bend over even for short periods of time and often suffer with motion sickness so simple tasks like filling the dishwasher make me feel ill. 

I have trouble regulating my body temperature, I nearly always feel either too hot or too cold. Frequently my feet feel so cold as to be painful particularly in winter. My top half is generally too hot and I sweat a lot even when not moving around. A the worse my head feels really hot like I have a fever and want to put a cold flannel on my head although my temperature remains normal. 

I have shaky & jerky movements in my leg and occasionally in my arms .these are particularly bad at night. 

I have seen numerous consultants across a number of disciplines including hormones, blood, gastro, liver and lungs. Although they have diagnosed a number of conditions none of these is considered to the cause on my ongoing problems. 

So do my symptoms sound consistent with CFS to you people. 

2

Certainly consistent with ME?CFS as many experience it, but could still be something else.

The only advice is rest as much as you can.

3

Yes. Uncannily. Check out the following:

The classic symptom of M.E. is the 'delayed reaction to exertion'. You wake up one morning and its like the mother of all hangovers combined with flu and wonder where it came from? 

The other classic symptom is that the fatigue is not 'substantially alleviated by rest': it is mitigated, but not solved by rest.

If we compare energy to money you find that your daily allowance is insufficient to do all you used to be able to do. The more you ignore this uncomfortable truth, the worse your symptoms get, just as someone living beyond their means gets into debt. Then its payback time!

These two observations also sort out the genuine fatigue illness:

If M.E. sufferers use a wheelchair they are NOT self-propelling, because the exertion to the arms and upper torso outweighs the rest given to the legs.

For an ME sufferer both joy and sorrow are equally exhausting. Laughter does not give you endorphins it just drains your adrenals.

Finally Steve if you have been diagnosed by doctors who as a tribe do not readily make this diagnosis, then isn't it a bit counterintuitive at this stage to be asking you have got the illness? You should be asking how to get better.

Philip

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4

I agree with Solsikke and philsey - what you describe follows closely the CFS that i've had to varying degrees for the last 30 years, even down to the jerky movements and sweating with normal body temperature. I wonder if your doubt is caused by anxiety and/ or depression (understandable under the circumstances) which can be treated. I am on antidepressants which help my outlook on my somewhat restricted life - but i have had several bouts of major depressive illness which may or may not be connected to the CFS. Like you I have also had other medical issues over the years but i've found that the strain of other illnesses has often exacerbated the CFS.

5

Hi strvetrov,

I have the walking issues, brain fog, memory issues etc. Shakey jerky body sometimes too. But, I only get one cold foot! It's baffling. No specialist can tell me why it is like that. I don't need a wheelchair when out unless I have to go somewhere and don't have the energy. My son pushes me. Otherwise I don't go out when bad, like today. Spent it on the settee and feel pretty ill but feel that taking a vitamin supplement recently has helped as well as speaking to a physio who understands cfs/me too. I am trying to pull back on activity but, my situation is complicated by having four children and the youngest is struggling at school.

The condition manifests itself differently for each of us. How did yours begin? And has anything helped at all? I've been given some small exercises to do to work on the muscles in my back and this will help my legs I've been told. Also, I've been reading how calcium, magnesium and other minerals help muscles to work and help with spasms and tremors.

Beverley

6

"The classic symptom of M.E. is the 'delayed reaction to exertion'. You wake up one morning and its like the mother of all hangovers combined with flu and wonder where it came from? 

The other classic symptom is that the fatigue is not 'substantially alleviated by rest': it is mitigated, but not solved by rest."

Well put! That is indeed the common factor.

"For an ME sufferer both joy and sorrow are equally exhausting. Laughter does not give you endorphins it just drains your adrenals."

That is news to me. Any links?

"isn't it a bit counterintuitive at this stage to be asking you have got the illness?"

Well, yes and no. It is not logical. But there are commonly stages in this: disbelief, anger, accept and grief - new lifestyle. In various grades and overlaps and re-occurrences. Each stage can take years, in my case step one - denial - lasted me about 2 years. It sounds like Stevetrov did not get past denial, which is very common. But Steve - you have to adapt. Get through the anger, and the grief over loosing the person you were. At the other end lies the possibilities of another way of living.

7

Thanks for all the replies so far.

My issue with CFS as a diagnosis is that its a diagnosis of exclusion. And so many people have said to me things like "oh yea I seem to be tired all the time too" or "everyone has fatigue these days". Although as understanding grows this has been less of a problem. I guess using a wheelchair also makes people realise that its sometime significantly different from their experience. 

I have been through GET and CBT programs with mixed results. I am currently undergoing another round of CBT that is focusing on coming to terms with my illness and realizing my illness does not mean I cannot be happy.

Over the years I have been diagnosed with 4 different conditions that were treatable and that "I would feel much better after treatment", each time treatment has nothing to significantly improve my fatigue. 

Slowly over time I am coming to accept the various aspects of my illness, but at the age of 40 being forced into medical retirement and having to spend the vast majority of my time resting, is hard to come to terms with. 

8

Hi solsikke,

Yes, I agree that there's a grieving process with cfs/me and sometimes people don't go through the process in a linear way. Saying that, Steve seems to be saying he's not sure he has cfs/me in the first place and yes that could be denial or it could be he has something that gives the same symptoms and he's not satisfied with the 'diagnosis'.

My entry into cfs/me was a car crash and thus my symptoms really can't be that I maybe could have lymes or lupus or liver /heart problems or vitamin deficiency etc that came that day.

I think acceptance is the most difficult step in the process when you have a condition like this. On one level I accept I have cfs/me but, in other ways I truly don't. Luckily for me I'm not thinking, have the doctors missed something? I've had several mri's now, x rays etc etc etc all my symptoms match the me society guidelines, a trauma was my "way in". The loss aspect of this condition is huge, and I believe is a constant challenge to myself personally. My brain forgets and I'll do something that then knocks me for several days. On saturday, I met with my sister, I stayed out too long and am still resting because of it. At the time, my walking was bad but while we were sat down, enjoying our time together, my brain 'forgot' that there's consequences for this. The loss of ability, loss of being able to share time with others, loss of memory etc the list goes on!

We all have our story of who we were before cfs/me. I was a spontaneous, independent, self employed, busy woman with two new contracts coming my way in a job I loved, who also walked 30 miles a week. A loving daughter who visited her mum a couple of times a week and took her shopping, a busy mum running her kids here, there and everywhere and then literally bang! Forget that life. Welcome to whatever you do now could totally knock you for days/weeks/months. Expect to slur your speech, forget what your saying, walk into things, appear drunk. Give up spontaneity, independence and being busy and manage your life around the rest and activity balance.

I agree that for me doing enjoyable things gives the same response as doing anything else, a need to rest and recover. The body doesn't distinguish but I think we still get some endorphins from laughter.

I wasn't expecting to write that much!

Hope that people are managing ok today and those who have found things harder in the hot weather are feeling less ill with the cooler temperatures here in the UK and those further a field are managing ok.

Beverley

9

Hi again Stevetrov,

It's really hard for people to get what cfs/me is if they've never had it. The lack of empathy seems another thing we have to come to terms with. I have also had people say they are exhausted in their jobs/lives and I agree-they are but, this isn't exhaustion. It's far more than that.

I had a friend who told me I just needed to get back to work/do voluntary work. Amazingly but unfortunately for them, they too got cfs/me. They couldn't work either now and they finally "got it" that their suggestions were ridiculous when I was so unable to do things. Now that they had it, there seemed no way they could invalidate my experience any longer.

Hope the CBT is helpful for you.

Beverley

10

Hi stevetrov,

I don't have much to add to this discussion that others haven't already said, however I wanted to comment on this part: "I get dizzy very easily and quickly if I have to bend over even for short periods of time and often suffer with motion sickness so simple tasks like filling the dishwasher make me feel ill"

I find this really interesting because I get motion sick EXTREMELY easily. I always have but it's been much worse since the onset of my CFS a year ago. I can't be in any kind of vehicle where I'm too close to the ground, I can't look at anything inside a moving vehicle for even a few seconds, and I have never been able to play most types of computer game.

I also get the dizziness, not only when standing up after bending down (which is standard orthostatic hypotension) but also when craning my neck upwards to look at something above me. In fact the latter is even worse than the former - I so reliably start to pass out if I try to look at the top shelf of my pantry that I have to always have a step ladder nearby!

Activities like hanging up washing or putting dishes away, which involve a lot of bending and standing up over and over, make me dizzy. Not motion sick, I'd say, but they trigger my orthostatic hypotension for sure.

I understand not accepting the diagnosis, because after all we don't actually know what causes CFS. It's a diagnosis of a consistent set of symptoms made when no cause can be found, not a cause in its own right. I'm so sorry you've been so sick for so long.

11

Diagnosis of exclusion/other illnesses and a journey of acceptance. Sympathies.

This is because

1. As ME typically lasts a long time, you are living through years which throw up illnesses common to all. Some men get heart issues, many develop diabetes. Maybes you would have got these anyway type thing.

2. Some complaints that we suffer from have labels because they are occur outside of ME e.g. "unrefreshed sleep" - this results in morning fatigue, is associated with snoring and lowered nocturnal oxygenation and is treated with a septoplasty/mandibular advancement splint. So the docs go "Hey! Here's something I CAN do to help this patient," and they can be guilty of overselling it in their desire to do their job. I had the above procedure. I don't think it did anything at all except send my needed dose of Amitriptylene up by 50%. The breathing splint did help. Sounds like you've had a number of these and they've been oversold which leads to confusion and disillusionment.

3. As others have said, coming to terms with the life changes that ME brings about is very hard. Denial is possible, forgive me that it didn't occur to me that diagnosis would be anything but a relief (in my case it legitimized my life to my young family, wife, friends and family, pension and various National Health Service entitlements and unemployment benefits in the UK.)

4. To get to the heart of it: there is a reason ill people are called patients! Before modern medicine, and like this so far incurable illness, the best cure was time, for which you needed patience. This is slipping out of the meaning of the word now, but the etymology is not a fallacy in this case. You can't rest and be impatient, the two are incompatible. So you and the illness have to accommodate to each other. You are fighting to get well, but in order to do so you have to give in to the illness, recognize it for what it is, and find a peace in your heart. You need to be philosophical about it. Then when reconciled to your current condition, you will find reserves of patience and tolerance and frankly a degree of stoicism. In the old days this was called "character" and it is quite rare nowadays. 

5. On the bright side, dropping impatience, anger, frustration etc., learning to forgive yourself and developing 'character', you are going to be a person of some depth. You can have the wisdom of a 70 yr old at 40. This will make you a 'better' person, which won't get you into Heaven wink, but will make you mellow and appreciative of the finer pleasures of life in the slow lane which, anyway, money can't buy:

"What treasures lie on verges, how many miles and minutes pass between our start and finish?"

12

Hi philsey,

Let's not forget people do recover! My friend's partner had ME for 10 years. A year of that was bedbound. He now has his own business, goes to the gym, swimming, cycling etc. Another person on the forum has recovered by themselves and I also know of others. There are people who seem to spontaneously recover as well as people who recover by gently getting back to better health.

The Deliciously Ella books and ready made foods are by a woman who was extremely ill with POTS that has similar symptoms and is again, ok.

Recovery is still possible.

Beverley

13

You are so right Beverley. Unfortunately Stevetrov is not at that point, as I asked him: he  indicated that despite several separate diagnoses he is in denial still. In my experience and that of my friends one of the essential pre-requisites for getting better is to first admit you have the illness. Only then can you alter your behaviour to first accommodate and then fight the dreadful thing. As he does not appear to be spontaneously recovering I offered advice tailored to his particular situation.

Maybe the problem lies in me. Perhaps I find it hard to re-assure people they will get better because I myself have only ever got worse; I had a lot of well-intentioned but false promises that I would recover but 17 years later I am still waiting. Perhaps I don't want to give false hopes.

 

14

I hear you Philsey and yes, it is difficult to remain hopeful when it has stayed so long. It also depends, I feel, on your support network and getting help you need which is a bit of a postcode lottery. Having an understanding doctor and other professionals that hear and validate your experience and don't feel the need to push you past your limit. It's taken me a while to feel heard. I've managed to get back to physio after a few years, the last one was so rude to me and told me I should go to psychological services because I arrived at her office exhausted and upset. She really thought you could seperate physical and mental functioning in this condition?!

So, recently I've been taking liquid feroglobin and I also tried floradix and, of course not cured but, it's done something because I managed to remember to chase up some results at the doctors (turns out it was nearly two years since I'd seen the specialist ) my brain fog has been a bit better, physically not much change. I do remain hopeful, my walking has become worse over time but, my ability to tolerate conversation has increased some recently. Pain fluctuates but, I've not had the visual migraine and neuralgia in a couple of weeks. Such a fluctuating condition.

I'm sorry to hear you have been well intentionally fed wrong information. I've had some very odd specialists assigned to me who just seem on a different planet!

It's been nearly 6 years since I started like this and it's definitely been all over the place symptoms wise.

What do you think helps you, if anything?

Beverley