Coming to terms with CFS: Hi, Whilst I... - Myalgic Encephalo...

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Coming to terms with CFS

SimmoMaz profile image

Hi,

Whilst I have not been officially diagnosed (papers sent to the specialist, awaiting appointment) I think it has become clearer and clearer to me that this is what I have been suffering with for the last 20+ years.

I have been treated for anxiety and depression all that time, and ADHD since last year. About 4 times a year I go to the Dr because I am so tired and feel so unwell that I can't do anything. I am on D3 and B12 supplements, I've had iron tablets, CBT, psychiatric treatment etc. but still nothing has really changed in terms of how I feel physically or mentally (depression is manageable through meds but has never been anywhere near 'gone''

Each time I see the Dr bloods are taken and come back fine and I was told last year, in simple terms 'tough, get used to it, there is nothing we can do to help'. There are phases during the year where I end up in bed for a week or more and have to force myself back to work - these weeks are where the way I feel is 100x worse than normal and I sleep all the time, have no desire to do anything including eat. I always thought, and was told, this was my depression but knowing what I do about CFS/ME now it is so obvious to me that these weeks are the ones where my fatigue and aches are too much to bear and I can do nothing but sleep.

I have an appointment with my Dr this week to do my annual meds review and am thinking of asking about upping my dose of anti-depressants (on sertraline, 100mg at present) to see if this might help a little in terms of managing my mood.

Does anyone else have advice (I know we are all unique) on how to cope as I had always been told that the tablets would help make things better but actually they have never been addressing the cause, purely the symptoms.

How do people cope? Anti-depressants? Other ways? I find CBT OK but not great at all. I love swimming, yoga and walking but am worried these (have stopped them for some time now) were triggers as well.

Bit of a ramble but I am going through a really tough period with all this right now and am struggling with work and everyday life so really just need to share this with people who understand.

Thank you

Simon

10 Replies

Hi there, sorry to hear you are suffering so badly... one thing stood out to me when I read your post and that was the anti-depressants. How long have you been taking them?I looked up the side effects of sertraline - and they are everything you are suffering. Personally, I feel anti-depressants are the most horrible medication and cause more symptoms than you had originally.

Whilst I guess they can help, I think its probably alot simpler for a GP to prescribe them than to fully investigating the cause of your problems in the first place and then its a downhill spiral because of the side effects of the drugs you are taking... hope you get some answers.

SimmoMaz profile image
SimmoMaz in reply to Yawn_along

Thanks Yawn_along,

Whilst I know that anti-depressants aren't for everyone they have actually helped me turn my life around. The symptoms I described in my original post are ones I have had since my early 20s. I refused anti-depressants for many years because I didn't want to be on them and only began taking them in my early-30s because I was struggling to function/cope.

The difference they have made means I am able to function on levels previously not available to me and has meant that I have been able to succeed at work and also be well enough to continue on my quest for answers on what the root cause is, not the symptoms.

All medications list a whole ton of side-effects, many that they are there to help with, because the manufacturers have to cover their backsides so any adverse reaction to their meds doesn't end up in a huge law suit.

Yawn_along profile image
Yawn_along in reply to SimmoMaz

Apologies, I hadnt read your previous posts... I only dip in now and again when I have the energy. I hope you get results when you attend your appointment. 🙂

Pacing is the number one thing that helps me. You need to find your baseline and work from there. It will mean you can do things without risking the boom bust cycle that puts you back in bed. I can't find the site I usually recommend but this one looks OK cfsselfhelp.org/pacing-tuto...

I take a low dose SSRI and have found Fluoxetine suits me best. I would recommend trying an alternative SSRI before upping the dose of your current medication. It is amazing how differently each one acts.

You will have found you need to be your own expert doctors are not well versed in the treatment of ME/CFS. There a lot of good websites that can help you. me-pedia.org/wiki/Welcome_t... is a good reference site; healthrising.org/ is great for understanding the latest research.

Once you start managing your symptoms and exploring your limits then you will see where you sit on the scale and can start planning accordingly. We are all different and what works for one person won't necessarily work for another so it is a case of just experimenting to see what is best for you. Good luck.

SimmoMaz profile image
SimmoMaz in reply to Calliepet

HI Calliepet and thank you for this, I will most certainly take a look at the links you posted here.

Your post captured things really well for me especially the boom and bust because it is a cycle I have experienced for many years that I thought was just my depression hitting me at different times of the year. Having ADHD doesn't help because the hyperfocus, when it kicks in, can lead to me completely overdoing it in and out of work to the extent where I end up in bed for at least a week (I worry that were I to stay in bed any longer I would end up off work for months which is what has happened in the past)

Finding a baseline is key and I have spoken to my HR department at work about all this and they have been hugely supportive. One of the things they discussed with me the other day is a support plan that I can use, in agreement with my manager, depending on where I am physically and mentally each week. I am so exhausted pushing and pushing myself through fear that whatever is 'wrong' with me will lead to trouble at work that I push so hard I end up completely out of action - finding that balance and being able to make adjustments as needed will be a huge help as I can begin to stop pretending everything is OK when I can barely think or act.

You are right too that we do need to be our own experts; I am only here now due to my refusal to give up or be told, subtley, to 'bugger off and stop thinking you are ill' by that Dr. In terms of meds I used to be on fluoxetine but wasn't convinced it was working due to the episodes of being wiped out, exhausted, tearful etc. that I thought was depression and I couldn't understand that tablets that were helping so much could allow me to get into a state where I couldn't do anything. Sertraline have worked in a similar way so I began to wonder if it was just depression that was making me this way. Some of the others made me feel like a zombie so I got off them straight away!

Speaking to the GP tomorrow and my CFS/ME referral paperwork (8 pages!) will be with the specialist service now so I just need to sit back, wait......and look after myself!

Thank you once again

S

Calliepet profile image
Calliepet in reply to SimmoMaz

Great news about work, well done for taking that step it was a brave thing to do. I very much recognize your story. If you are not fed up with me brain dumping about ME/CFS I have 3 other things I think are important. 1)If you do have ME/CFS your body is not making energy properly so save it for the important stuff. Save energy whenever you can, if you are watching TV lay down to do it, if you are cleaning your teeth sit on the edge of the bath. 2) When you stop pushing you might feel very low and very tired, this does not mean you are doing anything wrong it is just a stage you will go through before things start getting better 3) It really helped me when I started to understand the role of adrenaline plays. Releasing adrenaline is the last way your body can make energy when all other means have run out. When you release the adrenaline you feel great so you think "I am doing really well today" when in fact your body is actually telling you, you are on your last legs and you will be back in bed if you don't stop. Oh and you will have raging post adrenaline depression which makes you think you are the worst person in the world. How confusing is that! I feel good = I am doing badly, I feel tired and low = I am doing really well. This site explains the adrenaline issues well hfme.org/adrenalinesurgetip...

PS I get hyper focused now and I don't even have ADHD.

SimmoMaz profile image
SimmoMaz in reply to Calliepet

Thank you Calliepet, you are are describing things perfectly and I get it all - I can push myself so hard thinking that I am doing brilliantly then, as you say, the crash kicks in and I spend the next few weeks apologising to everyone for what a horrible person I am........something which none of them believe or will accept and I get told to stop apologising. To which I say sorry of course ;)

It is so very true that the moment you stop pushing it all comes crashing down.

I wonder if the hyperfocus thing is all part of it and not just ADHD - as you say, feeling that buzz of being 'on top of the world' is just that, a buzz and not a true reflection of where we are. It is always after these phases (which can sometimes last for months when I 'have' to be performing to a certain level) that the biggest crashes come that properly wipe me out for full bed rest.

Thank you so much again, you've been really helpful

S

SimmoMaz profile image
SimmoMaz in reply to Calliepet

Calliepet, this article on adrenaline is unreal - I could put that in front of my family and my boss and be totally happy that this can explain things far more simply than I ever could!

This is so unbelievably helpful and even covers the areas in my personal life where I am seen as being difficult in how I respond to certain things at certain times. Thank you so much

S

Calliepet profile image
Calliepet in reply to SimmoMaz

Yes seeing it written down for the first time, when you have been living it and thinking it just you, is something isn't it. I thought I had made a scientific breakthrough and then found everyone knew but me :)

Hi SimmoMaz. Are you in the UK? If so, I’m extremely impressed with your employer. I’m new to this, have not had a diagnosis but don’t expect much to happen any time soon. Yes, you definitely have to be your own expert, especially these days when you can’t get appointments with GP’s (& they really can’t be bothered anyway). Good luck. TofD 🙂

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