Is it CFS??

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Hi, I'm hoping someone could advise me on the symptoms I'm feeling at the min. Apologies if this is long winded but I want to make sure I explain in full.

I'm 31 and have been signed off work for 4 years now. Originally I was signed off with exhaustion, but then both my mental health (borderline personality disorder and social anxiety disorder) and my skin condition (hidradenitis supperativa) both flared up and took priority to the doctors and DWP. I've always suffered with things they've never been able to explain, such as:

- unexplainable bowel issues

- random eye twitching and muscle spasms

- continuous sleep issues

Nobody has ever investigated any of these and just dismissed them.

I was diagnosed with fibromyalgia in Jan 2015 following a shoulder injury, but the rheumatologist did say that it was impossible to diagnose anything else because dermatology had me on Infliximab infusions which could be masking other symptoms.

I came off infliximab in September and since then it's been unbearable. I have suffered constant headaches, joint pain, suffered with confusion and struggled with words. I've lost all energy and even a short walk to the local shop has me in bed for all of the following day. I've had to turn the brightness down on my TV and phone and my curtains spend most of the day drawn to help alleviate my headaches. It's like a hangover that just won't go away.

I've been sent for blood tests, ultrasounds and an MRI scan on my brain so far. My GP is unwilling to tell me what she thinks it might be and has just said she's been in contact with my rheumatologist and psychologist regarding the problems and they're using the tests to rule things out. Does this sound like CFS??

I'm hoping to get an official answer and solution from the GP soon, although I don't know what good it will do. I'm not allowed to take any anti inflammatory medication or strong painkillers because of the medication the mental health team have got me on, and I'm allergic to steroids which rules them out too 😔

Sorry for going on for so long but I'm so frustrated with it all.

Thank you in advance x

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4 Replies

  • Posted

    Hi, Nikki. So sorry you're having to deal with all these problems. Yes, it does sound like ME/CFS, assuming your test results come back negative. There is currently no treatment for this illness. I think the best you can do is to learn how to pace yourself and not try to push through the fatigue. If you push, you can crash, and make your symptoms, and the illness in general, a lot worse. If your walks result in having to be in bed the next day, you're doing too much. I've dealt with depression and anxiety in the past. I've found that meditation is very helpful for these issues--much more helpful than any meds I tried to take. It's very important to find a way to de-stress, whether it be meditation, deep breathing, listening to music, etc. Stress can greatly exacerbate the symptoms of ME/CFS. There's currently some research happening by very smart people, including doctors at Stanford University in California. I'm hoping that progress can be made in finding a treatment for this horrible illness.
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  • Posted

    Hi nikki. . It certainly sounds like cfs. I got mine after having glandular fever . It took me 3 years to have it confirmed . I went round the houses. Every department of the hospital . Lots of test scans

    I'm still having different test done !! . 9 years later . I know people can get it through many different reasons . I was told fybromialgia at the start then pvf. Post viral fatigue . Then a doctor explained it's a umbrella term they use and they can all relate to the same thing . It's soul destroying . It's hard to get your head around it . There's so many symptoms . Best thing is just ask doctor to confirm not totally sure but think it has to last 6months or more . . They do need to do lots of test first tho to rule out other stuff sounds like you have done some already. If you do have cf's you need to learn to pace yourself . Hope you get some answers soon . Take care L x

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    • Posted

      I had glandular fever myself. I had it when I was 14 and I was laid up for 18 months with it, sleeping 21 hours a day. It's only now that they're saying that is an unusually chronic reaction to glandular fever and that I should have been warned that I was likely to suffer repercussions throughout my adult life!

      Thank you all for your responses, it's nice to know I'm not on my own x

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  • Posted

    I don't know where you live, but I suggest you research local doctors who treat CFS or a local CFS clinic.  You might ask people on this site if they have any info.
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