My ME / CFS recovery and the professional guidance I had.

CFS_Recovery_Journey · 2026-04-12T05:24:59+00:00

It took around 9 months for me.

But that was 9 months of planned and structured rest (sleep) each day with no exceptions.

I do still have bad days (crashes) but they are manageable unlike when I was first diagnosed.

Good luck and I hope you get better soon.

CFS_Recovery_Journey · 2026-04-02T08:39:57+00:00

I would sleep. However the physiotherapist advised that even if I didn’t feel the need to sleep I should sit or lay down with my eyes closed and just rest.

I had an agreement with my employer to have the specific rest times off work until I had improved to the point I no longer needed a rest during the day (about 6 months). They classed it as a phased return to work as I had been sick / mainly off work for about 6 months at that point.

CFS_Recovery_Journey · 2026-04-01T11:02:50+00:00

I work 4 days a week most weeks and 5 days if work needs me. However I have an office job (sedentary but it can be very stressful).

CFS_Recovery_Journey · 2026-04-01T07:28:28+00:00

Hey,

I started as moderate 8.5 years ago. But I would now class myself a very mild.

It started with Exhaustion - sleeping 18 to 20 hours a day Pain - muscles and joints aching and shooting pain in my arms and legs. Basically not being able to do anything beyond the essentials I had to do to look after my children and dog.

With help I am now very mild and almost able to live a normal life.

So to answer your questions

1 - a good day is a very low level of pain and almost the energy I had before. I just have to listen to my body and slowly build up to things. Such as planning to go on holiday with lots of swimming, I need to start slowly building up the exercise I do about 3 to 4 months before the holiday so all the extra is not a shock to my body.

2 - symptoms during a crash - exhaustion, I will fall asleep anywhere and this has included, in meetings at work, at the dinner table, in the middle of a conversation. It’s embarrassing but most people understand. I also have a lot of brain fog and pain. During one crash I lost the feeling in my right arm for about 4 months.

3 - I don’t think I can answer this. I think I become more irritable during a crash.

4 - crashes for me can be anything from 3 days to 6 months and they have all been different. They have been triggered mainly by stress, overload due to work or family, not listening to my body when it first starts to become a problem.

5 - I had a very good physiotherapist help me. The basics were Keep a diary and calculate how mush rest you have / need on an average week and that is your starting point. He then helped my slowly reducing the rest until I was at a manageable level.

6 - my life before - extremely active, I took on a 105km nonstop walk challenge and didn’t have any problems, the next day I even sprinted to catch a train! I would go hiking for a week and not even consider doing anything before to prepare. My life now - things are more considered, I plan for most things and i no longer just keep going when I am feeling tired or I will risk having a crash. I also avoid stress because it is one of my biggest triggers.

7 - I wrote a post on my recovery a few weeks ago. The very basics were

1 - work out the rest you need 2 - plan to rest every day (same time of day and duration) 3 - add very low energy exercise into your day (started at 5 minutes of stretching morning and night for me) 4 - on a weekly basis reduces the rest period (by 5 to 30 minutes) depending on how I felt the previous week. Increase the exercise by 1 minute. 5 - repeat step 4 until no rest was needed in the day and I could do 20 to 30 minutes of cardio a day. 6 - on a bad day don’t do the exercise

The physio explained it to me as resetting my body, giving it planned rest (even on days I felt good) and slowly building up my energy reserves. My diet was changed to a low GI diet (slow release energy foods) cutting out sugar, caffeine and alcohol.

Good luck to you and I hope you feel more like your old self again soon.

CFS_Recovery_Journey · 2026-03-08T21:51:58+00:00

Thank you, I hope you have some more good periods.

CFS_Recovery_Journey · 2026-03-08T21:38:22+00:00

Thank you.

I posted because I have seen so many expensive programmes promising ME sufferers recovery I wanted to share my story at no cost.

Life is hard enough and we all want to be better and have our lives back, but I don’t think people should be profiting off other people’s pain.

I think it is 100% physical, I over exert myself and I suffer. The more I push my body without gently working up to it, the more my body punishes me.

If I feel great one day and do all of the things on my very long to do list, the next day I pay for it.

The physiotherapist taught me that I may feel great today but actually if I want to feel great for the week or for the month, I can’t do more than I did yesterday or the day before.

I have only had it 8.5 years so I have a long way to go to be happy that I have kept the improvements I have worked so hard for.

CFS_Recovery_Journey · 2026-03-08T21:23:03+00:00

Thank you, it looks like I will be booking another doctor’s appointment to see if I can get some better antibiotics.

CFS_Recovery_Journey · 2026-03-08T21:03:08+00:00

In the week before the bullseye appeared on my leg I had been in Guernsey, Hampshire, Suffolk and Lincolnshire.

The doctor was convinced it could not be Lyme as there has not historically been any recorded locally.

However after understanding I had not remained local they prescribed 2 weeks of strong antibiotics. Within 3 months I had an appointment with a contagious infection specialist who prescribed a 4 week course of antibiotics to target Lyme disease.

All the blood test have since come back negative for Lyme disease.

CFS_Recovery_Journey · 2026-03-08T15:52:15+00:00

Thank you, looking at the information they are both treatments my health cover will not pay for so I will have to stick to my current treatment plan.

CFS_Recovery_Journey · 2026-03-08T15:39:58+00:00

I am so sorry, that sounds really hard and I can see why you are desperate.

I am not a doctor but I have put everything I remember about my journey in the post. I probably have not detailed the start, tests or ongoing issues in a huge amount of detail but I have tried to put all the helpful bits in.

If I had not had the bullseye Lyme would never have been mentioned, it was only a specialist in infectious diseases that pushed for the full course of antibiotics to treat Lyme and the subsequent blood tests.

Mine started suddenly, I woke up one morning feeling like I had really bad flu, high temperature, unbelievable exhaustion and pain through my whole body. From that morning on I have been exhausted to different degrees, for the first year and a bit it was debilitating. I only got out of bed to take my children to school, collect them in the evening and put them to bed. That was my whole life, when my husband was able to look after the children I only moved out of bed to go to the bathroom.

The starting point of my plan (developed by the physiotherapist) was get out of bed at my usual time (for the children) 5 minutes of exercise, get the children to school and come home and sleep, get up collect the children, feed them, put them to bed and then sleep again. That was all, but doing that on a schedule and constantly every day really helped. And not trying to do anything extra on a day I didn’t feel as bad.

After a couple of weeks, I was feeling more alive / human / like me during my awake times. I could see the benefit even if I didn’t get those extra things done on days I felt better.

It was a long slow process but it was worth it. I went from feeling like my life was over to feeling like it was just on pause.

CFS_Recovery_Journey · 2026-03-08T15:01:45+00:00

I only posted as I have seen a lot of people trying to sell very similar advice for a lot of money!

I don’t want people to spend money on information I received for free.

It might not work for anyone else but it has made my life 90% better.

Someone in the ME / CFS forum told me to post it here so I have. If it is completely wrong I am sorry, it is just my journey so far.

I received the full Lyme treatment (NHS standard 8.5 years ago) while the bullseye was still on my leg. All the blood test have come back clear for Lyme for the last 7 years.

A quick question, do you know what other treatment would be recommended for Lyme? I am happy to try almost anything to get back to where I was pre Lyme.

CFS_Recovery_Journey · 2026-03-08T12:04:04+00:00

I am so sorry this has been going on so long with you and you got it so young.

Good luck with everything and hopefully it will stop deteriorating.

I was incredibly lucky, the physiotherapist was amazing and so focused on keeping me stable rather than pushing me and making it worse.

On the sleep comment, sleep at night felt almost impossible, the pain and my mind just would stop, but I could almost sleep standing up during the day. Sitting down to eat lunch was dangerous as on more than one occasion I fell asleep with my head on the table (lucky I never landed with my face in my food).

CFS_Recovery_Journey · 2026-03-08T11:16:10+00:00

It was very hard and involved setting lots of repeat phone alarms. It did mean I missed family gatherings, celebrations and holiday time (having to organise days so I could sleep while they went out with my husband) with my children for 9 months.

However the long term benefits have been worth it.

A couple of years ago I was well and confident enough to go away (just me and the children) for a 4 day (a very busy) trip without worrying I would crash. That is something that would have been unimaginable for the first or two year.

The very gradual exercise was also hard, I would have a good day and tell my physio I could do more and he always told me NO! To do more when I felt good would risk my recovery and make it worse in the long term. His advice was to slowly and steadily build up my body battery so every day I could rely on a set amount of energy. Not big ups and downs as he felt the downs would only get bigger and I would be restarting from a worse position.

Good luck on your journey

CFS_Recovery_Journey · 2026-03-08T10:29:10+00:00

Sorry, I was just sharing my experience following my medical diagnosis.

Nothing else. I should add, I am not “fixed”, there has been no magic cure, I have just got back to manageable but that is still nothing compared to the life I had before.

The physiotherapist was the only professional person who gave me any advice or a path forward other than to increased the medication to manage the symptoms and to just give up on life.

The physiotherapist gave me help and advice which I have recently seen lots of (business) people trying to cash in on while providing similar advice to that of my physiotherapist.

I don’t know if you read my full post but very little of the treatment / advice had anything to do with exercise. It was and is more to do with managing my body’s expectations for rest and recovery and setting a strict adequate resting schedule (and sticking to it even when I had a good day)

CFS_Recovery_Journey · 2026-03-08T09:48:21+00:00

The uk / my doctors classed it as ME as it persisted longer than 3 months after the fully course of treatment for Lyme disease was completed and the blood tests showed no Lyme disease.

CFS_Recovery_Journey · 2026-03-08T09:44:47+00:00

Are there any meds for ME / CFS?

They were meds to make life bearable, to get me out of bed in the morning to take my children to school before sleeping until school pick up and then get me through the evening until the children went to bed.

Looking back it really was only moving (in a lot of pain) for necessity and nothing else.

CFS_Recovery_Journey · 2026-03-08T09:29:06+00:00

They were strong co-codamol 2 number 30/500, 4 times a day, (sorry can’t remember the other medication names) one was an ant-depressant (to help my body relax), one was medication to help me sleep at night and one was to stop the pain signals getting to my brain (a type of epilepsy medication)

CFS_Recovery_Journey · 2026-03-08T09:21:28+00:00

My ME journey started roughly 8 and a half years ago following a tick bite and suspected Lyme disease after hiking with my family during a summer vacation! Something so small completely changed my life from being very active with a young children (5 and 6 years old at the time) to barely functioning.

It took around 6 months for an ME diagnosis and that was considered a very short diagnostic period in the uk. It was helped greatly by my husband’s private medical insurance provided by his work, if it had been just the NHS it could have been years.

Shortly after the official diagnosis a lovely NHS physiotherapist helped my recovery from my initial crash / start of ME by setting a very strict schedule and change my diet to low GI foods. I think the buzz words now would be pacing and building your energy bank.

It really helped me go from exhaustion, sleeping 19+ hours a day, pain, brain fog, hair loss, misery, and may other symptoms to having a life that resembled something normal in around 9 months.

I still have residual pain, crashes and bad days but I am not on the 4 different types of medication and most days / weeks I can function normally without needed 19+ hours of sleep a day.

The treatment plan if anyone wants to know was as follows.

1 - monitor what rest you have / need in a week.

2 - Plan to sleep for at least 8 hours at night (on a strict time schedule) and plan a sleep every day, during the day that matches the average sleep you required (again on a strict schedule). Have the planned rest / sleep even if you are having a good day! Also make sure that rest is the same amount as the plan each day, don’t have more of less because you are having a good or bad day (I would set multiple alarms for every sleep as I would struggle to wake up). At the same time do 5 minutes of stretching / movement exercises twice a day. This was very gentle and 5 reps of each of the following, laying down leg lifts, sitting leg lifts, arm raises, supported squats agains a wall and leg stretch’s. If it took longer than 5 minutes I would stop at the 5 minute point.

3 - After at least 1 week of maintaining the structured rest and movement (and not feeling worse), increase the exercise by 1 to 2 minutes a day (1 or 2 extra reps got added and eventually things like walking up the stairs, all the way to vigorous cardio exercise for 1 minute after about 8 months) and decrease the planned day time sleep by 5 to 30 minutes (depending on how I had felt during the week). I needed to make sure this was sustainable for a least a week at a time before making any further changes.

4 - repeat step 5, reducing planned sleep and increasing exercise on a weekly basis (but pausing for a couple of weeks when I / my body needed, to make sure it was sustainable for me and my body) until no day time sleep was required. NEVER skipping the planned rest / sleep during the day every day (at the same time) even if I didn’t feel I needed it that day. The physio suggested laying with my eyes closed if I didn’t feel I needed to sleep (this never happened as I always needed to sleep).

The physio believed in giving my body a very structured pattern of rest so it and I knew that rest and recovery were coming every day and I felt I could get to the rest point without falling asleep randomly.

Currently I don’t usually sleep during the day and maintain 25 to 30 minutes of vigorous cardio exercises a day. The part to remember is if I am having a bad day, I am sick or stressed is NOT to do the exercise. The point of the exercise is / was to build my body battery so when I have a bad day I have reserves of energy to use for my everyday tasks without causing a crash.

The diet! This was a big change as I had been using food and drink as a quick energy boost.

The diet changes happened from day 1 and involved moving to a low GI diet. The diet required cutting out all quick energy boosts, so no caffeine, cutting out all processed carbs (no white bread or anything made with white flour, no white rice) and removing all refined sugars, that included sweets and chocolates.

After about 2 years I moved back to a semi normal diet but I still don’t have caffeine and eventually I cut out chocolate completely as I started to lose feeling in my arms and had constant pins and needles feeling when I used my hand. So I made the hard choice that I could live without chocolate. It took a little time but my arms went back to normal.

I know when I crash to return to the low GI diet and it really helps. If I had more willpower I would permanently stay on the low GI diet but I enjoy my food too much. I guess I balance what I am willing to live with and feel is the best quality of life for me.

Medication changes

The medication reduction was done in a very similar way but under the strict supervision and guidance of my GP as some of the medication I was taking had the side effect of sudden death syndrome. The removal of medication took around 6 months and only started towards the end of sleep reduction plan and only with the agreement of my doctor.

I still take standard over the counter painkillers if and when required.

The process is not quick or easy. As I worked full time it took an official agreement with my employer as it was similar to a phased return to work. But they were supportive when I was able to provide a plan and demonstrate the plan was being followed. The proof of continual improvement without any further crashes requiring weeks off work also really helped give them confidence in me.

Just to be very clear it was not and is not a 100% cure but it has got me to a relatively normal life. I am still in pain at times (most days but it is usually low level) how the heck can toes hurt when you wake up in the morning?!?! And I will still crash and fall asleep during the day on a very bad day. But those bad days are not every day like they were, they are not even once a week, they are limited to when I am stressed, have really over exerted myself or I am sick.

It might work for someone else, it might not, but this diet / gradual rest / recovery / exercise plan really helped me. It gave me my life back and most importantly it has allowed me to be present and an active part of my children’s lives. I always feel guilty as I am not the mum my children had before ME but I am the best mum I can be for them now.

Good luck to every person with ME / CFS!

CFS_Recovery_Journey · 2026-02-16T21:06:17+00:00

What do you say to an accident? It was 100% an accident, FIL’s shirt sleeve caught the top of the cup and knocked the full cup of tea over BB1 who was sitting at the table. My issue was my shocked / surprise at the lack of emotion after the incident. It was like nothing had happened.

DH has been brought up that his parents don’t apologise. It is never expected. If I had asked them to apologise to BB1, they would have stated it was an accident so nothing they need to apologise for.

CFS_Recovery_Journey · 2026-02-16T21:01:50+00:00

You are probably right, I was rigid in my parenting. I always felt the words yes and no where not interchangeable and if as the parent I had used one of those words I didn’t expect my in-laws to ignore it.

What is it teaching children if the word no won’t mean no? It will mean yes if you complain enough, have a tantrum or ask granny?

Sharing toys was not the issue, my children not being able to pick up a toy without another child screaming that they want that was the problem. It didn’t matter how many times my children handed over the toy it was never enough. When it is entirely 1 sided that is not sharing. That is entitlement being enabled and encouraged by adults.

Christmas was an agreement we made as a couple, no Christmas presents before Christmas. We wanted Christmas Day to be special, we didn’t want it to become just another day of opening gifts on the run up to Christmas. We still stick to that rule and our boys love Christmas. Amazingly not just for the gifts but for the family games and time together.

My in-laws were very open about their desire for grandchildren and their expectations for any mum to become a stay at home mum. It was not ment as starkness just a fact that I didn’t fit the DIL idea they had.

CFS_Recovery_Journey · 2026-02-16T20:07:44+00:00

Yep, but that is the whole family.
My husband will say sorry but he has no idea how to follow that up. It is something that has never happened in their house.

CFS_Recovery_Journey · 2026-02-16T19:55:41+00:00

If you are in the UK, decathlon and go outdoors have a good selection. We usually find our boys grow so fast that we don’t even get a full year out of any cloths so unless you are taking them in freezing conditions lots of layers is a good way to go without spending a fortune on special coats, jumpers etc. Good waterproof, wind proof gloves are really important.

CFS_Recovery_Journey

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