CFS Relapse

[stravinsky1]

Hi I'm new to the group so please bear with me. I have been managing my CFS very well for the last few years but after having my Gall bladder removed earlier this year have had a bad relapse. I am having real difficulty getting my pacing right as am exhaused physically and mentally for 99% of the time and suffering chronic pain all the time. When I get an Ok day I of course do too much, yes I know stupid woman. Has anyone got any advice as I seem to be getting worse rather than better and after telling my GP that I was following all the advice I received from excellent the CFS CBT practitioner a few years ago all GP could advise was pacing and ever stronger painkillers. He is a good GP but I wondered if anyone had suffered a relapse and if they could tell me how they managed to get back on track. It took me 5 years to be able to live a somewhat normal life last time.

Thank you

[Willolasgranny]

When living with autoimmune problems life can be an uphill struggle anyway but a noticeable flare up/relapse is demoralising. I can only sympathise with you as I have yet to find the answer.

I have ME, COPD,PA and usual age related symptoms. I can rarely pinpoint which of these is causing me to shut down completely until I recover. For more years than I can remember every time I came out of an episode I was sure I was ‘cured’ and like you made up for lost time, often getting away with it. It’s all very human nature, don’t blame yourself.

All we can do is accept our fate, do what we can to make bad times bearable and keep searching for any proven medical breakthroughs . Although I have sometimes thought I would lick a pigs bottom if it would help.

It took me many months to recover from my gall bladder removal but eventually I did. I hope you will too.

[stravinsky1 in reply to Willolasgranny]

Thank you so much for replying. Another quwstion do you get breathless when climbing stairs and sometimes just around the house? I didn't have this when CFS was bad before. My chests fine so its not that. I am also in constant pain all down my left side with arthritis and awaiting a hospital appointment for awful back pain, plua chronic migraine. Wondering what the heck is going on.

[murtoz in reply to stravinsky1]

Your breathlessness could be a symptom of POTS, which is a common thing for people with ME. Have you checked your heart rate when you are feeling breathless? I've had ME for 5+ years, and POTS for the last two - I think covid gave me pots but who knows. There are some treatments for it. Check potsuk.org/ and see if it matches your symptoms.

[Fleur29 in reply to Willolasgranny]

Thank you all for your comments - I'm relatively new to this site myself, and need all the info I can get. I have CFS as a result of covid. its is really ruling my life and I hate it 😢

[peege]

hi stravinsky1 and a warm welcome to you. I totally sympathise re your relapse. Bear with me, I'm in a knackered phase...............I have CFS diagnosed in 2016. I though it was rubbish at the time so ignored it, that is until June/July 2017 after I'd spent 2 stints in South of France helping a lot with 10 month old whilst my son & fiance were preparing for their wedding and celebrations. When it was all over & I was back home in Gloucestershire i could barely dress, shower, leave the house, get food etc. I caught myself over n over asking myself what the hell was the matter with me. Decided to go to the doc with the awful fatigue then I twigged/remembered that I'd been the previous year & had loads of blood tests only to be dx with cfs 🙄 . What a fool, I thought my life was over . So I rested, & rested bed to sofa to bed, reading when I could, walking the dog round the block when I could. It took about 3 months before I woke up one day & threw the covers back with a bit of gusto.

That seems to be my pattern, massively overstretch myself physically & emotionally then take 2-3 months recouping energy by almost total rest.

I swear by Dr Sarah Myhill's book regarding mitochondria not working efficiently. From her recommended fatigue pack I take a wack load of vitamin B12 and Ubiquinol 100mgs daily - apart from seriously fatigued times like now when I'll take 200mgs of Ubiquinol (the maximum daily dose) for a few weeks. It seems to work for me until I can get back to the normal pacing.

Very best wishes to you and good luck in your recovery, I'm sure an anaesthetic in your system must have knocked you for six - times 100! Peege

[stravinsky1 in reply to peege]

Thank you, yes it was op that caused the relapse, Evidently when suffering from CF you are supposed to be on an intsavenous drip for 24 hrs from beginning of op. Can;t remember what drip sorry. Ill get book you recommenf

[peege in reply to stravinsky1]

it's cheap if you have the kindle app

[doglover1973]

Hi & Welcome. Pacing is the key to living with CFS/ME but don't beat yourself up if you get it wrong . It's not easy. There's a very good book called Fighting Fatigue. It's a bit of a misnomer . It sets out how to manage fatigue. I read it over a decade ago and still refer to it if I'm tempted to overdo it. It's set out well so anyone can read it at their own pace. Take it steady. I hope you feel better soon.

[stravinsky1]

Thank you doglover, I'll try and get that book. I'm just really down at moment as had to go to casualty on Tuesday as back had completely seized up and pain was nearing a 10. I could hardly walk, taking baby steps due to pain, bent double and no wheelchairs. Now on even stronger painkillers and Diazepam. Back very slightly better today so moving in right direction 😊

[doglover1973 in reply to stravinsky1]

Hi there. So sorry. It's not easy when you have other issues on top of CFS/ME. It can feel overwhelming at times. Hopefully your back is getting a bit better every day.

[stravinsky1 in reply to doglover1973]

Asleep most of time now think combination of cocodamol and 5mg Diazepam is causing this but it's good really as can't stand pain when awake. Thank you for your kind message

[stravinsky1]

Can you be tested for Sibo on NHS? If not how do you get the test?If test positive what do you do?

[MattyGroves in reply to stravinsky1]

Hi, I believe it is possible to get tested for SIBO in some areas of the NHS but I certainly didn't manage to. If you can get a test it will be only for hydrogen. I started seeing a functional nutritionist and she arranged tests for both hydrogen and methane. I was diagnosed with the latter. It can take a while to get rid of but with a structured diet plan, various supplements and anti-microbials we did manage to get rid of it. It was not was quite costly but I didn't feel I had any other choice. Initially my abdomen had swelled at an alarming rate over a few days! I was initially told it was trapped wind, then IBS, I went to urgent care who sent me to A&E. They were great but couldn't find any wrong even though my abdomen was sicking out further than my boobs. (Probably too much information 🤣)If hydrogen is the cause I believe that you need antibiotics which would have to be prescribed by the doctor.SIBO can return but it's been about 3 years for me and I'm very careful with my diet so fingers crossed

[stravinsky1 in reply to MattyGroves]

THANK YOU FOR REPLYING, Mary

[theia]

Pre-emptive rest seems to work for me . It is very hard especially when you have a good day and you want to be going on......it has happened to all of us..........bw

[stravinsky1]

Thank you, it's good to know it's not just me