Coping strategies please

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Not diagnosed but being pointed towards cfs possibility, had anaemia sorted and very low vit d sorted. Currently off work waiting more appointments, as i can no lnger cope with my work load. As not diagnosed not sure what to do, so extremely fatigued, tend to do what i can whe i can, but people just don't seem to understand,  joint pain and muscles paracetmol and ibruprofen don't really do anything. Fibro myralgia seems to have been ruled out. Any advice as just don't feel coping very well. Thankyou for reading this.... Here's hoping for some replies.

 

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  • Posted

    I know it sounds like a cliche, but taking one day at a time helps. Otherwise, it's easy to feel overwhelmed. First you need a diagnosis. To get a diagnosis, you need a complete blood panel done to rule out other diseases. Once this is done, assuming results are negative, go to an infectious disease doctor or rheumatologist knowledgeable about ME/CFS. They'll ask you a bunch of questions about symptoms and should be able to diagnose you on the spot. This is how I got diagnosed. It should be a relatively easy, straightforward process, but because of all the ignorance on the part of medical professionals, getting a diagnosis can take time. If any doctor tells you you're just depressed or it's all in your head, run the other way. You don't mention much about your symptoms in your post. But to see if ME/CFS symptoms resonate with you, go to the "solve ME/CFS initiative" website. They have a lot of good information. While waiting for a diagnosis, in case you do have this illness, take it real easy and pace yourself. Don't try to push through the fatigue. It can make you a lot worse and lessen the chance of a recovery. De-stress in any way you can, because stress can make symptoms a lot worse. One coping mechanism that has helped me is meditation. I practice a strictly secular form of meditation every day. Please feel free to post any other questions/concerns.
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    • Posted

      Jackie shared some great information and resources already. Just wanted to add that Mayo Clinic offers a checklist to prepare for a CFS appointment along with specific questions to ask your doctor. That might be helpful to have for your upcoming appointment. Wishing you the best, Sharron!!

      -M

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  • Posted

    Wondering why theyve rules out fibro, as like cfs, its not diagnosed in any conventional way. l,m, also waiting for rheumy appt, due to worsening fatigue aches and pains, other symptoms and feeling very unwell at times. Like you, and most l guess, we do what we can when we can, somethings are essential, much has to be left, if your lucky youve a good partner who helps practically and emotionally. Many people dont understand, or often empathise, some drs dont either

    My worst  pain is usually pelvic area, and general, but last two days lve really bad shoulder into uppper arm wrist pain, came as a suprise just how acute the pain is. l dont like using pain killers, as lve gastritus and often react badly to them, but do use ibuproften pain gel and heat patches, which l find do help a bit, dulls it at least, worth a try, some use tens machines, some sad lamps to help with some aspects of it and feeling down. l think considering the level of debility and disabling at times for many, the response from some medics, who are quite casual about it, with little advice verbally or in literature is poor. Even when l was diagnosed with intersticial cystitus l was given literature on condiion with advice and support group contacts. For those not on the net l guess they get no advice or support.  l hope you get to see specialist soon and support with it.  best wishes

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  • Posted

    If you do have CFS then you will need to learn how much you can do without making yourself worse. I was told this countless times, especially by my GP but ignored what they said. So I continually went through boom and bust cycles. Several years ago I learnt to pace myself and say no. Result!! 

    I gave up hoping that I would get some help via either the NHS or the people I saw privately. Sorry to say I fixed myself. 

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  • Posted

    Hi Sharron,

    How long have you felt like this and how long have the anemia and vitamin d issues been resolved? also, are you In UK? Each country seems to have a different slant on things is why I ask.

    Beverley

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