Advice wanted - relatively new here

[Tiredtwinmum20]

Hi all,

I’m writing after a recent ME diagnosis, after being ill approx 2- 3 years. When I first got symptoms, I started having acupuncture and taking various supplements and I noticed an improvement in my energy levels.

In December, I moved house and it triggered a crash where I basically became the worst I had ever been. I rested up, took time off work and started to improve slightly. I didn’t get back to where I had been, but I felt positive at slight improvements.

Now, I went away for the weekend for a special family occasion and I just feel like my body has pushed too far. I’ve got heaviness in my legs which is now in my arms and also in tongue. It is hard to hold a glass of water. I am so so worried that I’m not going to bounce back from this. I just don’t know what to do. Is this PEM? Or have I done too much and permanently made myself worse?

I had a job interview planned for tomorrow and I’ve had to cancel it. Trying not to feel like my life is just over.

[ButterflyPrincess1]

Hello,

You'll find that this page can be pretty quiet and sometimes replies can take a day or two; due to the nature and impact of ME/CFS.

Also, it's important to note that nobody here is medically qualified and so we can only speak from our own experience, obviously.

What you're describing sounds like it could be a flare, or relapse as a consequence of having done more than your body can cope with.

It sounds like you're doing everything right in terms of managing things, generally (although we're all individuals and there's no one size fits all approach, unfortunately).

Pacing is a very effective strategy-simple to understand but very difficult to master, especially when life gets in the way, I know.

Sadly, nobody can know for sure whether it's just a temporary setback or it'll lead to more lasting changes in your general level of functioning; so it's very much a case of managing as best you can, resting when you need to, etc.

I'm happy to try and help, if you have any other questions or worries.

If it helps at all, you aren't alone

[Tiredtwinmum20 in reply to ButterflyPrincess1]

Thank you, that’s really kind. It’s just so daunting to get my head around. I’m worried that I’m going to get worse and never better and I wish I just knew what to do.

[ButterflyPrincess1 in reply to Tiredtwinmum20]

I can certainly relate to that.

In my experience, once you're given the diagnosis, you're pretty much left to get on with it and it can feel very lonely.

Personally, I had lots of tests (mainly blood tests) to rule out other conditions, before the diagnosis was given (I have CFS).

There are charities out there, like the ME Association. They have a number of useful resources, particularly if you're new to M.E.

The updated NICE guidelines (the NHS follow these) might also be worth a look.

Just type the key words into your search engine.

[peege]

Hi there, I can totally understand where you are. You are describing just how I feel after a week with my offspring & their wonderful families. I have an appointment at 2.20pm so if its OK, I'll pop back in a bit. In the meantime, please feel free to to look up my (very few) posts and replies to others by clicking on my photo.

Later ×

[peege in reply to peege]

Hi again, so sorry not to get back to you, a bit knackered at the moment & attempting to conserve some energy for a weekend with 3 little'uns for mother's day and my birthday (the birthday I couldn't really give a toss about but it gives such joy to the g'children)!

I can thoroughly recommend Dr Sarah Myhill's book. I have a paperback (somewhere) and a kindle copy. If you have the free kindle app you can download it. Mine was about £3.50. A really worthwhile read to help you understand what's going on. One way she describes pacing is imagining you start the day with an envelope full of energy, when its gone it's gone and takes some time to replenish. End the day with a great deficit and it throws everything out for days or weeks. IE when I'm back from my family visit I know it'll take over a week of sofa/bed/sofa. Thankfully my daughter understands and won't let them come leaping on my bed at 6am.....I try to join them for the school & nursery run. I find the din really zaps me, which is deeply sad because they are adorable.

I do hope you find something that helps you. At someone's recommendation on here I bought Solgar's Astaxanthin 5mg (the maximum dose, I've found a cheaper 4mg one) and that’s helped somewhat (on top of the other suppsupplements).

Best, Peege (dx CFS in 2016).

[Troilus in reply to peege]

Hi peege. I have just bought some Astaxanthin. It also reduces inflammation in asthma according to studies I have seen.

[peege in reply to Troilus]

Helloooo my dear 👋 , fancy seeing you here and brilliant that it can reduce the inflammation of asthma! Was it just asthma or all round inflammation?

The same person who reccomended the Astaxanthin swore by it and also swore by pomegranate juice, said I'd never look back. I went straight down to the health food shop & bought a glass bottle of organic p. juice. It was pretty disgusting, did almost 7 days of a small glass daily. It was a case of holding my nose & knocking it back. The use by date was short so it was an expensive experiment. Just mentioning it in case you want to give it a go.

I'm pretty sure that the Astaxanthin makes a difference and I might now take the 5mg & cheaper 4mg on alternate days, I think it's better to take the optimum dose if poss . Fingers crossed it works for you. ××× P

[Troilus in reply to peege]

I pop on from time to time but I’m always 2weeks after the latest post! I came across Astaxanthin when searching cfs/me to see if there was anything new. I only researched it in relation to asthma not really thinking it would throw anything up - I was pleasantly surprised when it did.

I’ll give the pomegranate juice a miss thank you. 😁

[Maya_83 in reply to peege]

Hi. What does Astaxanthin actually do?

I'm new here. Been diagnosed with cfs last 6yrs..

[peege in reply to Maya_83]

I'm afraid you'll have to Google, I did after it was recommended by a member here. I do only Google UK sites. I do recall that it's highly recommended not to exceed 5mg daily.

I'd recommend that you read Dr Sarah Myhill's book if you've not come across it before

I'm not with it at the moment but will come back when I've some energy

[Maya_83 in reply to peege]

Thank you..I've found at 8mg for £12 not sure it if a god move?

What benefits have you found for yourself please x... (come back when your ready x)

[peege in reply to Maya_83]

I wish I could find the information I originally read before ordering it for my self (I will try again later). It's an antioxidant taken from a particular algae

I overdid it yesterday walking 2 mile round trip to balance class of an hour which seemed such hard work then my older neighbour needed support . I really should have said no but find that so difficult. I think she gave me a caffeinated coffee because I was awake until 5am. The info re the maximum daily dose has really stuck with me so I'd not recommend going over it in case its actually dangerous .

Last night I found Solgar Astaxanthin 5mg @ £12.09 on Medino Pharmacy Supplies (spent nearly an hour searching 😳 & seems a reputablecompany). Ordered 3 bottles for free postage. The original Solgar I got was nearly £30 hence trying the cheaper Vegavero Astaxanthin 4mg, 90 capsules

[strongmouse]

Hi there, it takes time to work out how to manage ME.

A relapse or flare doesn't necessarily mean that you won't improve, but it does mean you need to allow your body time to recover. Each person is different. I was very ill with ME when I first developed it over 30 years ago, but I improved enough to return to work, mostly part-time and found I relapsed if I did too much. Also stress like moving or infections meant I needed time to recover (weeks rather than days). It is like someone with ME has less charge in their batteries and they then take longer to recharge especially if you have gone way over your limit.

I can recommend Dr. Myhill's book on ME / CFS and Dr. Charles Shepherd's book on ME (he writes for the ME Association). Another book which helps to understand about pacing and managing is Dr. Darrell Ho Yen's book 'Better Recovery from Viral Illness'

What helps one person doesn't always work for everyone. I have found supplements and managing allergies has helped me.

Rest is one of the best ways to recover. Learning to listen to your body and not push through when you have used up your limit. It is hard to say 'Sorry I need to go and rest now' when other people can carry on, but it is in your own best interests and means overall you will manage better. I try to have some frozen meals so that if I have a bad day I don't have to cook. My husband also does cooking some days and we have a cleaner. I am retired now but did eventually need to take ill health retirement. Try to find ways to manage your days using less energy. It does take time.

The ME Association has a telephone support line and Action for ME provides support too.

ME Association - meassociation.org.uk/me-con...

Action for ME - actionforme.org.uk/get-supp...

I have used acupuncture in the past and it did help with pain, but wasn't long lasting.

I hope you begin to feel better soon.