ME

[Whosinwhoville]

Hi

I have been quite unwell for several weeks and was wondering if any mumsnetters can advise me.
My GP thinks I have ME. Blood tests have come back normal.

I usually work full time in a very demanding job. I am also a carer to two children with Autism. I have been on sick leave for three weeks after becoming ill and this period of sickness has made me look at the cycle I have been stuck in. There is a clear pattern of me working full pelt and then all of a sudden I get so poorly and can’t function. It usually takes me several weeks and then I return to work and back into the cycle until the next time I get Ill.

I have already built some things into my routine over the years to try and compensate for work. This includes not having late nights, not going out on Sundays so I can manage work the next day, not really having a life, but I need to do more to try and get my health better.

My mental health is good although I feel frustrated as my body won’t work the way I want it to.
I really want to continue working full time but I need to adjust things so I get out of this cycle.

Any advice about how I can improve things would be great.

It is incredibly hard to just solider on and hope you can catch up later with M.E., you really need to look at 'pacing' instead of 'boom and bust'.

Here is a good guide (long but there are shorter ones out there too):

www.actionforme.org.uk/get-information/managing-your-symptoms/pacing-and-energy-management/

For me (also with DC with autism) it has meant I have had to give up work and really change everything about how I live, and it is still very much a work in progress! However, once I have a better structure and a proper baseline of activity/exertion, I think I can go back to work but I have to make work 'fit' with me rather than the other way around.

I am also doing lots of stuff with nutrition and diet, but this is partly due to auto-immune issues that have arisen at the same time. My ME (and other issues) were very, very clearly post-viral but that isn't always the case.

I also have ASD it seems and it has been one of my coping mechanisms to push myself and then keel over and there is some (emerging) evidence that this strategy can begin to fail at midlife/menopause and lead to autistic burnout. So slightly unsure where the boundary is between my ME and probable autistic burnout.

Thank you Grimbelina. I will have a look at the link.

Good non-flakey books

Fighting Fatigue by Sue Pemberton and Catherine Berry
Classic pacing for a better life with ME by Ingebjorg Midsem Dahl

Avoid graded exercise.
Use CBT only as a support, not a cure.

Meditate every day.

Maybe look into Heart Rate monitoring for ME. (I say maybe because this is often done by people with moderate or severe ME and I think you would be classed as mild as you can still work).

The best UK support group is ME Association. There is also Action for ME.

Research your local ME/CFS clinic before asking for a referral. One or two are good, but most are not worth the effort.

NEVER go beyond the boundary at which you do too much and make yourself feel worse. If you want to carry on working full time you are going to have to cut back on energy use elsewhere. (Social life, hobbies, housework.) Get a cleaner if you can. If this sounds joyless and virtually impossible...it is.

Willdoitlater (brilliant name!) also want to thank you for those links and your posts - I haven't had it that long so still learning...

Most people with chronic fatigue get better within 6 months to two years, so do stay optimistic.

I really urge you to get the Pemberton book. It's a little out of date but still a good place to start. Its basically about pacing your physical and mental activities. She now runs one of the best fatigue clinics in UK. (Not the Leeds Clinic who own the copyright to the book).

There are alternative regimes involving diet and supplements but none that are proven and they are often time and energy (and money) consuming in themselves.

I said you were in 'mild' category, but I absolutely know it doesn't feel 'mild' to you.

@Grimbelina thanks for the compliment on my name. If you have not been ill for long and not too badly affected the statistics I've seen suggest you have every right to be optimistic. I'm glad you have the ability to put a diet approach into practice as well as pacing. I know different diets can help people, sometimes they help a lot. I'm a bit too tired for that approach, so I had oven chips for lunch (sigh).

Hi there Willdoitlater. I have been ill for 3 years but got back to about 70-80% so was pretty happy with that. In Feb (coinciding with my Covid vaccine...) I got much, much worse (20-30% functioning) with new issues. The diet stuff is more about the auto-immune problems that also arose at the same time (AIP with some changes) and does seem to help the inflammation... and I am back to 50-60%. Who knows... I do feel it helps. I am meditating (nearly!) every day too. For a long time I was running around and fixing everything else, but not stress... in hindsight this is where is I should have started.

Thanks so much everyone. I would definitely say I am in the mild category. I have been ill for quite a few years on and off and suspected ME but was never taken seriously until now. So I just carried on.

I want to look at reducing my hours as I just don’t think it’s sustainable to carry on like this. I wanted to stay full time because financially I need to but being ill like this over the last few weeks has made me realise I have cut back on so much already something has to give.

The advice about pacing usually given would say if you want to work half time (for example) do five half days rather than 2 full days and a half. Of course this may not be practical, but the principle is that you should avoid getting over tired and making your symptoms worse. Because it takes much, much longer to recover if you have overdone it, rather than stopping before things flare up. I'm so sorry you are having to learn this stuff.

I suggest reading "spoon theory" it's a good way to explain the fatigue and pacing.

butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Thanks everyone.
I have not been able to go back to work yet.

I’m struggling with quite bad leg cramps at the moment. Just wondering if anyone has any advice on this. I’ve been drinking lots of water, eating healthily, taking vitamins, resting but staying as active as I can manage. the cramps happen day and night but mostly in the day and they are painful. It is affecting my walking and my legs are giving way but only every so often.

Mean by legs are only giving way every so often. My walking is poor at the moment

Better You magnesium lotion. Cheaper from amazon than direct from Better You. And rest, rest, rest.

Have your potassium checked. Low can cause bad cramps. In the meantime eat bananas as they are high potassium.

Regular Epsom Salt Baths (Magnesium Sulphate). For at least 30 minutes.

Leg pains may mean you're over-exerting. YOU won't think so, but you probably are. Stay inside your energy envelope.

Whatever you're aiming for, do half. Be super strict with your rest & pacing!!! Employ or get people to do things for you.

I was you once. NHS encouraged me to do Graded Exercise & get back to work. Now I'm medically retired, need a wheelchair & rarely get out of bed as my M E. became severe. For seven years. It's hell

NOTHING is more important than your health, believe me.

I just wanted to say thank you for all the advice. I managed to go back to work after 5 weeks off. Last week I worked 4 half days, by the fourth day I was exhausted.I’ve been in bed after work every afternoon and Friday I was in bed almost all day.
I’m still on phased return but really worried about how I’m going to cope building up to full time. I am feeling so unwell.

Have you actually seen your blood test results? If not, you are entitled to a copy. Do you know what has been tested?

The reason I ask is that ten or so years ago, I was mentally and physically exhausted, gaining weight despite a good diet, I had no tolerance for any sort of exercise and was in so much pain from head to foot that at times I could not sit or stand unsupported. I was diagnosed by a consultant with CFS/ME, then the same again by a GP and then by another consultant over a two year period. All that was on offer was anti-depressants, which I refused. I knew I was not depressed. I was very frustrated and seriously unwell.

They had all actually missed secondary hypothyroidism, low levels of vitamin B12 and folate, and critically low levels of ferritin and vitamin D. Once the vitamin levels were sorted out and I was given thyroxine, I was fine, but I had to research and fight the medical establishment every step of the way.

I always worry when I see posts like yours that something similar may be happening to you.

Wishing you well OP.

Please please dont push yourself back to work. I know bills need paying but doing so is how people end up bedbound or with ME for their rest of their life, pacing really is key and rest

@NaToth I haven’t seen my blood test results. I know they checked thyroid, potassium, iron levels. I think I need an mri scan. I don’t know why I feel like I need one, I just keep thinking I should have one.

@DaisyDreaming that’s what I am so worried about. I’ve told my husband that I don’t think I can cope with full time but he is worried about finances. My job is very demanding and there is a lot of pressure. I feel trapped because I look okay but I am not. I am also a carer to two children with Autism and one son who does not have Autism. I feel like everything is too much.

Thank you for all the replies. It is really helping me

I think you should get a print out of your blood test results and see exactly what was tested. There will be a reason why you are having to pace yourself like this and, with the greatest of respect to those living with a diagnosis of CFS/ME, it is quite possible that there is a treatable cause.

CFS/ME is a diagnosis of exclusion, so you owe it to yourself to be thorough in excluding other causes.

Hi

Its the OP here. Im going to ask my GP for a copy of my blood test results.
Im off work again. Ive over done it, pushed myself too far. Spent all day in bed today , but only slept for a few hours in the morning.
I told my husband last week that i dont think i can continue working full-time but he doesn't get this illness. He is worried about money as we have only just started having proper financial security so i get where he is coming from but i really am struggling.
I just dont know what to do.
Ive called the me clinic and my referral has been received and they will be in touch with an appointment.