M.E flare up

I was diagnosed with ME/CFS 5 years ago after numerous visits to hospitals for rheumatology neurology and God knows what else investigations. I was passed round from pillar to post and was eventually diagnosed by the neurologist as having ME. I had not really heard of it and found it hard to accept because I felt so bad and had such joint pain I assumed it would be arthritis as the cause. I was referred to the Liverpool CFS clinic where I was taught coping techniques and help with accepting the diagnosis. Since then I have worked hard at pacing myself and also reluctantly gave up work. Things definitely have improved.

However the last few weeks I have started to feel really bad again and all the old symptoms have returned. My question is should I go back to the GP and get blood tests or assume it's the ME rearing its horrible head again. My G P was sick of the sight of me before I was diagnosed. I find it hard to accept that the pain is fibromyalgia when the rheumatologist said he didn't think I did have and said it was the start of osteoarthritis as I had just gone into the menopause. All very confusing. Any advice appreciated.

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  • please go and research yeastinfectionadviser.com..... also you may also find the finchley clinic online , all symtoms can be candida albicans , as a nation we are devolving more and more people getting diagnosed with M E / CFS just as i was and past to every doctor and specialist it ended up i had a bad yeast over growth along with toxins being released into blood stream .... all blood test were negative with doctors...... do the spit test on a morning first thing after getting up before food and drink collect as much spit as you can in your mouth, sounds revolting i know but it tells you alot about your health ..... spit it into a clear glass of still water.....get your results and understanding from the internet just type in the candida spit test and look at image results ..... we are not made to eat at what makes paper mashe at school fact this is flour and water and gluten nice word for glue. happy healing up and onwards to a healthy well being take care and if it helps spread the words of your knowledge to others because doctors dont believe in this condition maybe because they cant do a perscription hence money is not being made by the pharmacy bussiness thank you Sylvia xx

  • Hi Patdoyle

    Sorry to hear you are more ill again. If there were proper ME clinics, as in MS, then we could be reassured when having a flare-up. Probably unless you have a new symptom it will be ME as it's episodic and relapsing in nature, but if in doubt I go to the doc. I well know how it feels to be yet again in the surgery but this is the fault of the NHS that fails to provide dedicated services for ME/CFS. The older I get the less fazed I am about it, not having wanted to become ill, especially with an illness that's so poorly understood as ME.

    Sometimes symptoms are put down to ME when it is something else. Sometimes we're referred to as "heart sink" patients - ie the doc doesn't know what to do with us, but that's no excuse for not being sympathetic and helpful.

    Can you find a more helpful doctor maybe ?

  • Hi Patdoyle. Sorry to hear about your relapse. If you have been feeling rough for more than 4 weeks I would definitely go back to your doctor for blood tests. It's tempting for busy doctors to put everything down to the ME but sometimes it can be something like a bit of aneamia. This happened to me. Although my doctor brushed it off saying it was only a bit on the low side, after some iron tablets (tummy friendly iron citrate), I got back to my as-good-as-it-gets level. I also take vitamin B12 (which is helpful for improving energy levels) even though blood tests say it's within the "normal" range as I feel better for it. I have found along with many other MEers that we often need higher levels of nutrients than so-called normal levels.

    If there's no change in your blood status then it's probably a horrible relapse and the only thing to do is give in and pace really strictly until you pick up again.

    As for the pain in your joints and muscles, I can assure you that ME is that painful. I have to take quite strong prescribed painkillers and sometimes even these are not strong enough.

    Hope this helps.

    Best of luck.

  • Yes all replies help . Sometimes you feel so on your own thankyou xx

  • Hope you feel a bit better soon. The M.E. people I support all go up and down, sadly. It is a wretched and painful illness. I don't have it myself but I get a lot of exhaustion, fatigue, and that helps me to understand a little of what they are feeling (but only a little, for sure)!

    I notice that one professional who had M.E. and recovered, went home to her mother and had bed rest for three months. Pushing one's self to try and get over the problem is not on! All the very best!

  • please can i ask how can the Drs know that a patient have me,i have a grand/daughter who has been poorly and have many of the problems that goes hand in hand with me,all they have done is a blood test and that showed high white cells and something showing in her liver,Dr said she has a chest infection and gave her antibiotic,my grand/daughters Dr put her on antidepressants but wont address her other problems,she is at uni but had to take a year out as couldnt cope with her illness,any advice would be appreciated.Thankyou Linda.xx

  • ME/CFS is diagnosed by exclusion of other conditions. If your grand daughter is showing high white cell count then that would not be normal in ME/CFS i don't think. I think it would be best to eradicate the chest infection before challenging the doctor about other problems, so long as the infection clears up pretty soon. Hope that helps. It can be difficult but the doctors don't have X-ray specs for diagnosis and a lot of what they do is ruling things out unfortunately, which can take time.

    As a student myself, I would reassure your granddaughter that skipping a year of uni is not the end of the world, although it may seem like it at the time, lots of people have to do it for different reasons.

    Hope that helps, L : )

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