Advice need around ME/Fibro

[Dozymoo42]

Earlier this year I was diagnosed with ME and Fibromyalgia, stupidly I tried to carry on mostly as normal and put myself into a full crash around 3 weeks ago. Stuck in bed fully for around 2 weeks and am at the moment still going slowly slowly to recover.

Does anyone have any tips for me as to things I can work into a daily routine that will A) Help recovery and B) potentially improve quality of life going forward without overdoing it.

I am working on pacing have got the visible tracker and that is being quite helpful in identifying things that I would not have thought of as energy zapping previously. Some days I am a little wobbly so I think I may eventually have to concede and get myself a mobility aid.

been trying to research but there’s a lot of info so wanted input from people that understand and are living with the conditions. Are electrolytes worth looking into? I know full exercise is a no-no but is there any gentle exercises I could do to keep movement etc? Can already feel weakness in my legs and don’t want to have to deal with any mobility issues that could have been avoided where possible.

Hi OP. ME diagnosis in 2013 and now manage to live relatively normally after finding my new normal.

First, id say dont overwhelm your body with supplements they may do more harm than good. Definitelt take good care of your gut health and try to get good sleep. What triggered the ME do you know? Its a broad diagnosis for many things and there isnt one treatment for all.

I just walked on level ground and tried to do x amount of steps to begin with. I kept it very simple. I just kept moving.

Not really sure what triggered it originally to be honest the nurse I spoke with said some of the history I have given would point to me having it for a while and pushing through it for years and just had hit a wall where I could not anymore around December then diagnosed in February.

Id say, for me, i had to learn that you cant cheat at pacing. You may feel good one day and overdo it and then pay the price a day or two later. Its the delayed onset that always tricked me. But you have to find your limit through trial and error and be patient with the setbacks. I think acceptance is key without resignation. Its hard, its complicated and it takes longer than you want it to. Listen to thr energy tracker and your body. Keep hydrated, i take magnesium glycinate at night and i make sure i have optimal vitamin d levels as they help the immune syatem but are also anti inflammatory. A nice turmeric rub for the legs and massaging them has helped me but again in moderation as i found too intense a massage would release too much lactic acid in my legs. Asoitin i found was good for this but the gastro resistant one.

Finally, i went on sertraline to help manage anxiety around it as stress is very bad for ME.

Thank you @Hillsmakeyoustrong I am surprising myself that I am not pushing too much at the minute . I’ve accepted time off work to get myself as much on track as I can. They’ve popped me on Amytriptlyne to help with the pain and it has improved 🤞

my main worry is knowing when I am resting too much don’t want to go too much to the other way if that makes sense. That’s my biggest worry I think losing to much mobility and strength.

I hear you. Its really individual so i can only tell you how it was for me. In the beginning i felt ill in that i ran a mild temperature non stop for several months and i had pain, weakness, heat in my legs and arms. Couldnt wash my hair at one point, couldnt walk far and standing was awful. I even couldnt sing. I thoight i had a degenerative illness like MS, i was tested for everything. I felt like that for 12 months. Gradually i was able to build up my strength but i was on the sofa alot at first, i gained 3 stone as i felt i needed to eat more calories just to get through the day. After 2 years, i had started kickboxing, lost the weight and became the fittest i ever have been but my body can still relapse if i dont protect myself. Its very hard to explain. Suffice to say, you may go down before you go back up and thats ok.

Are you keeping your nervous system calm? Deep breathing, gentle walking, swimming or just floating if you cant swim. Just keep moving for now whilst in the acute phase.

They put me on pregablin and amitriptiline. The first didnt touch me, the second made me low mood. I was so glad to find sertraline. Meds wise its trial and error and you find what works for you.

Thank you ,what you have put has given me hope for the future.

Feel free to PM me anytime. Expect it to take longer, dont compromise the pacing even to get back to work. You will have to adopt a new normal and be patient. Try and relax as muxh as you can yoga nidra is great as it requires zero energy and it brilliant for your nervous system. Finally it forced me to face the unresolved trauma in my life as this had been a contributing factor. Take care x

I’m sorry you’re going through a crash. It took me a long time to figure out what helps, but pacing has honestly been the biggest thing for me. I still crash sometimes if I overdo it, but I’ve learned to pay close attention to my body and notice the early signs that I’m doing too much.
One thing that really helps me is making sure I have at least one full rest day each week where I do absolutely nothing. If I skip that, I can end up crashing quite hard. It takes time to learn your limits and recognise your warning signs, so try to be gentle with yourself while you figure it out.

Thank you @Hillsmakeyoustrong I will have a look into yoga nidra hopefully it can be something for me to try in the coming months.

@Moon30 I’m trying to stick with the pacing so far and I’ve definitely been doing 100%less than I would usually do.The one day a week is interesting I might factor that in going forward.

Just found out about ‘central sensitisation’ as a possible mechanism in ME/fibromyalgia (my dd has Long Covid).

Apparently Plymouth hospitals do a ‘body reprogramming’ course to address this - you might find their webpage interesting:

readingwww.plymouthhospitals.nhs.uk/download.cfm?doc=docm93jijm4n17065.pdf&ver=25395

Great advice already.

I was diagnosed about a year ago after several years of becoming more ill. More recently I have been diagnosed with rheumatoid arthritis also.

I find magnesium has made a huge difference to my muscle spasms. Vitamin D also. I also have other inflammatory auto immune diseases and have found I am very susceptible to dairy as a cause for inflammation. If I cut it out completely I have good results, bring it back in for even a few days and I then flare.

I am experimenting with diet alot and currently feel that animal products generally cause me problems. But currently it's all a work in progress.

Good luck. I was first relived to finally have a diagnosis and then the full limitations of it all hit me and I had a period of real anger and grief.

Thank you @DeposedPresident I was very lucky to be able to use my works private health insurance so got a diagnosis pretty swiftly. I definitely feel what you are saying with anger/ grief and I can throw a bit of denial in there also at the minute. Some days I am fully onboard and understand my limits other days whilst I stay within my limits I’m frustrated and feel like I don't understand why my body is not working. I take vitamin D daily will look into magnesium though.

@Nature1nurture thank you so much will have a look over the web page. 😊

I hear you. I get so frustrated with my limits.... before I sort of got to grips with the concept of pacing, when I felt well I used to try and do all the things all at once, because I was missing out on so much. Then would collapse.

I feel real anger at times at just how life limiting fibro really is. I have just picked up my DS1 from an exam, it's not even 1 pm and I am considering going to bed for a nap. I feel shattered. The house is a tip. It's quite debilitaing and depressing.

I am not on any medication. I was on ibuprofen but then was taken off it due to having asthma. I am trying to avoid medication if possible because i also have kidney issues and liver issues and I want to try and keep any pressure on them at a minimum. I echo other posters who say trying to work out pacing and triggers is key- and for me certainly it's a bit hit or miss. I'm lucky though that DH is incredibly supportive and my DCS have basically only known me as 'ill' for the past 6 years or so so they are used to it and see it as their normal. That last bit isn't 'lucky' but hopefully you know what I mean.