CFS/ME sufferers.. please can you help me?

[spookyastronauts]

Hello!

I am currently going through a long battle trying to find what the cause of my extreme tiredness is. It has been going on for about a year now. At first I thought it was B12 deficiency as I had blood tests and it came back low. I had tablets and injections which brought my levels up but still no change. I had the injections weekly for months but didn't help.

I have been back to the doctors a few times and all my blood work comes back normal. I went again today because it is starting to put me in a very bad mental state and feel like I can't live like this any longer.

I have been prescribed a low dose of anti depressants to help with my mood, but the doctor thinks this could be ME/CFS. He has referred me for CBT, however I have since read from other people that this isn't great.

I am not sure what I have and whether it is ME or not. Please could I ask your symptoms and what this condition is like for you? For me, I am not constantly suffering every single day. I do have a few good days, sometimes I can even have a good week. However, the majority of the time I am feeling so exhausted that I can't do normal daily things. If I get up to wash the pots, I have to then go and lie down again. I will have a shower and then have to get back into bed. Sometimes all I can do is lie down all day and it's really really getting to me, it's no way to live my life.

On my good days, I just have to manage my energy. For example if I have something to attend in the evening, like a meal, I can't do anything else during the day. I won't be able to get read and head to the shops or visit my family because that will use up too much energy and then I won't be able to go out for the meal.

I am ignorant on ME and do not know much about it. I always thought that people are pretty much bed bound with this condition. For me it comes in phases. It's much worse on the lead up to my period/during. Then I feel my best a few days after my period ends and then I start struggling again. This month however, it hasn't improved after my period, all weekend I have felt ill I have been that exhausted. It's bone crushing. I had a breakdown sunday evening because I am so sick of it and my boyfriend pushed me to go to the doctors again. I wake up with headaches feeling utterly exhausted even after 8 hours sleep. But then suddenly I will wake up one day and feel fine! Then i'll feel ok for a few days and then back to being exhausted again.

If this does sound like ME, please can someone tell me how I can manage this and feel better? Because I am very depressed now and don't want to live my life like this, I am only 30.

I had ME a long time ago. You’re describing how I felt. My GP gave me antidepressants which did help a bit.
What I found helped me was doing things that made me really happy - I literally blasted myself with positive endorphins.
I’ve had a few relapses over the last couple of decades. Last time I saw a doctor about it he told me I needed to get a dog! I did, constant endorphin boost!

So you don’t have it anymore? What made you overcome it? Would you say it’s just the things you mentioned, like doing things that made you happy and eventually you felt okay?

Have you checked your vitamin D levels? GPS often don’t check them but lots of people are deficient and it’s a relatively easy fix- you can get postal tests for about £30.

My CFS/ME was triggered by a virus and it pretty much felt like I came down with flu and never recovered. Absolutely exhausted, having to lie down after every minor task, much as you describe. Lots of aches and pains, headache, felt groggy- almost hungover? Constantly nauseous too.

The main thing I think is to rest as much as you are able- and I know this is a privilege some people don’t have. When I was first diagnosed it was someone on mumsnet who told me that people who try and push through often end up bed bound. So rest as much as possible.

Part of my recovery was doing very gentle graded exercise therapy (which is a bit controversial in ME communities as many people have had bad experiences). I had to work out what level of activity I could manage without it exhausting me. I think it was about 1000 steps a day, total. So really a few trips between bedroom, kitchen and bathroom. Then I had to increase it by 10% and do that for a couple of weeks. If I didn’t crash, I could increase another 10%. If I did, I had to go back down. The key is taking it very very slow. I gradually started doing small walks down the street and building that up a little too. I managed to get up to a level of basic functioning doing that.

I also did yoga specifically for people with fatigue, a few YouTube videos but also sometimes a live class with Fiona Agombar (you can find her on Facebook). I tried my best to eat well, sleep as much as I could. Basically just nurture my body as far as possible.

Pacing and graded exercise worked for me too- fibromyalgia. Not a complete cure but a massive improvement.

When you feel a little better, don’t try and do everything you have missed out on in the previous low energy days.

You have to reserve your energy, not squander it.

I thought pacing was having a rest after a busy day. It isn’t, it’s avoiding having busy days so the day to day levels gradually improve. No more boom and bust.

ME/CFS is generally diagnosed after they've checked other stuff.

Some people who are diagnosed with it later get another diagnosis. So my DD was diagnosed with it, and a couple of years later bloodwork showed thyroid problems and it turned out she had hashimoto's.

So - try and get bloods done regularly.

Also for a lot of people it's post-viral - often after glandular fever or Covid.

My DD is now better than she was. Some people do recover completely.

First of all (I’m sure this has been said to you before) amazing username!

I haven’t had my Vitamin D checked I don’t think. The doctor in October gave me a full blood count and everything was normal, not sure if vit D was part of that. They do have tests in Tesco though so I think I will buy one of those and test myself.

Thank you for your reply, I will rest as much as I can. It’s just a vicious cycle because I’m basically in the house 24/7 and it’s really affecting me mentally. I don’t want to rest, I want to do things and live my life. But I can’t. And then the depression just makes my symptoms worse

Ah I didn’t realise this. I do try to get everything done on my good days. Otherwise it’s just a miserable existence. I want to go on days out and trips away and shopping with my friends, new experiences with my boyfriend. I don’t want to spend my life doing nothing. If the only way I can feel okay is to sit in the house and do nothing then what’s the point. I’m just existing

Definitely push for more investigation. Doctors can be very quick to decide it must be CF /ME because "blood tests are clear".

I got told that for years only to discover I actually have an autoimmune condition called Myasthenia Gravis and actually my eyelid droop would have been visible at every doctor's appointment!

My condition gets much worse around my period. Often people find using a contraceptive pill helps.

My understanding is that a lot of autoimmune conditions flare around the woman's period (I have a friend who is a diabetes specialist and says the same can happen with diabetes)

I have CFS and fibromyalgia., diagnosed about 10 years ago.
Pacing, ( or spoons) as you are doing is the right thing to do. Gentle exercise when you can, keep moving as much as you are able.

Always get a copy of your blood tests and check them yourself. GPs will often say normal even if they’re very low. GP told me my B12 was “normal” even though it was one point over the lowest in the range. I had all the symptoms of B12 deficiency but he was clueless about it.

I take a raft of vitamins daily — CoQ10, B1, Selenium, folic acid and Vitamin D.
For B12 to be used effectively you need a good supply of folic acid in your body. I do a top up B12 injection every 6 weeks.
Have you seen Health Unlocked, lots of different message boards for different conditions.

This is a really good newspaper feature today about ME CFS and Long Covid

M.E./C.F.S. tends to be given as a dustbin diagnosis, when doctors don't know what's wrong. However some of the same management techniques may be useful across a range of ailments which get dumped in ME/CFS bin.

As PP have said, pacing is absolutely key.

A characteristic of M.E. (not just Chronic Fatigue) is post-exertional malaise, ie exertion triggers the symptoms a day or two afterwards. In my case, it comes on about 48 hours afterwards – a pattern which is difficult to spot unless you're actively looking for it!

So pacing means keeping your activity levels within safe levels, to not trigger the bad day. In practice this means doing less than the max you can on a good day.

I've seen this brilliantly described as having invisible speed cameras: you might not know you were over the limit, but the penalty is in the post.

Pacing and graded exercise are only controversial when they're presented as being an actual treatment for M.E./C.F.S., rather than as a management technique to maintain general fitness despite having M.E/C.F.S. in order to avoid secondary issues caused by deconditioning.

Agree very strongly with PP about vitamin levels. I found I was deficient in Vit D causing bone pain; and eventually deficient in other essentials too. The M.E./C.F.S. impacted on my ability to be outside and prepare/eat healthy meals. A simple multi-vit from Boots has helped a lot.

Finally, the bit you're really waiting for. For me, over-the-counter. antihistamines have made a life-changing difference. I now take 4 tablets daily. They haven't cured me, but they take the edge off it.

Autoimmune conditions have long been on the list of suspects for M.E./C.F.S, so this isn't too surprising. The fact that your symptoms vary with your menstrual cycle (which interacts with your immune system) suggests an autoimmune element for you too.

Re the misery of being stuck at home, it’s not permanent just a recovery phase.

Treat yourself like a baby- lots of self care, regular food, sleep, no wild nights out that leave you overwhelmed.

After a while you can tolerate more and more.

Excitement and stress are the same thing. Aim for a calmer life until you’ve rebuilt your reserves.

Do not squander your energy on things other people want you to do. Don’t go along with the usual. Actively choose what you are going to do because you can’t do everything.

Was coming on to say this! I don’t have CFS/ ME but have worked with those that have. Well done to George Monbiot for raising awareness of something that is so commonly misunderstood. The psychosomatic explanation is enraging & used so much to dismiss women’s health problems.

Do not squander your energy on things other people want you to do. Don’t go along with the usual. Actively choose what you are going to do because you can’t do everything.

Very wise words.

Thanks so much for that article, @quarterofanonion .

I have cfs and my symptoms are just like yours except I never wake up to a normal day, and after doing “a bit too much” I will be extremely ill the following few days.

CBT doesn’t cure cfs at all and is not recommended by the nhs as a “treatment”. However if you’ve been ill for a long time it help you accept and manage your condition better, but that’s all. Cfs is a physiological illness not a mental health condition.

Anti depressants won’t help unless you are clinically depressed. If you’re not sure then I guess those no harm in trying to see if they improve things for you?

The difference between cfs and depression can be hard for outsiders to see. Ask yourself, are you still enthusiastic interested joyful about things you used to be able to do but are just unable to
do them? In other words is the only issue your energy (which is a problem for cfs and depression), or is it also how you feel about doing things (which is more likely depression)?

I have experienced both and honestly they are worlds apart inside but can look the same outside.

OP grades exercise therapy is now discredited for cfs and can be dangerous so please research well before trying it.

Pacing you should be able to download an online chart and instructions. You will need to find your “baseline”, the amount you could do every single day with no post exertional malaise.

Agreed. It makes me very angry. I was well and happy before I got ill. Countless doctors implied it was psychological, and made me doubt myself .

All that time I had a very real physical symptom (fatigable ptosis) of a very real illness (myasthenia) that they could have spotted if they had looked at my face instead of deciding it was all in my head because the handful of blood tests they did came back "clear"

That's assuming op does have "CfS" and it's not just a lazy doctors diagnosis of course.

The fact it ties in with periods does indicate it could be autoimmune

And not all Autoimmune conditions shown up in blood tests (mine doesn't)

True @CassandraWebb, but pacing and recovery are useful whatever the diagnosis.

Neither is a substitute for proper medical care, just a technique for managing poor health.

Agreed @pickledandpuzzled .

Mine turned out to be childhood trauma related, stuck in constant fight or flight mode - or more accurately for me, freeze mode. Being so hyper alert takes a lot of physical and metal energy and erodes your immune system. My advice would be to focus on winding back on stress and get whatever trauma counseling you might need.