Newly diagnosed not many tests done ? Is this CFS?

Posted , 5 users are following.

Hi

I’m 26 and in July 2017 I came  down with glandular fever and never recovered if anything I got worse. My symptoms are, swollen neck,armpits and groin, painful to touch constantly, SLEEP, have I even been to sleep? My thoughts every mornings. Constantly exhausted? Actually exhausted isn’t a strong enough word to explain the tiredness I suffer! Constant sore throat, never goes away, pains in arms, back and stomach on and of.  Sore boobs constantly. Very bad anxiety. The tests I have is bloods WBC has been 11.6 for over a year,  Imflammation levels normal. Ultrasound of neck last year, CT scan of stomach and pelvis, ct of sinus? Chest X-rays ( I had phuemonia in November as well) that’s a bout it really? Told it’s probably fibro and m.e? 

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4 Replies

  • Posted

    Yes, sorry to say, the symptoms you list are classic for ME/CFS. I don't know much about fibro, so can't comment on that part. There are no tests or treatments for ME/CFS. The best advice I could give you is to get plenty of rest and don't try to push beyond your energy envelope, as this can make you worse. And, above all, beware of doctors who tell you that graded exercise and cognitive behavioral therapy (CBT) can make you better. It's best to avoid caffeine, alcohol, and sugar. You can get better--you're well within the time frame for possible improvement. I'm so sorry you're having to deal with this.

     

  • Posted

    I'm sorry to say that I agree with Jackie, it sounds classic ME and the way that mine started some twenty years ago. The one huge advantage that you have is your age, Your age means that you have the possibility of making possibly a complete recovery, and if not, at least one that will give you a very good quality of life.

    Again take notice of what Jackie says, you really, really need to study up on the condition, learn to work within your reduced energy levels and rest, as much as you possibly can. The 'Boom and Bust' scenario is one that causes so many sufferers to be ill for a great deal longer than maybe is necessary. So never push yourself to the state that you end up feeling worse.

    You may be in for a bit of a long haul to overcome it and it can be tough, you need to be disciplined, selfish and to educate friends and family, who believe me won't understand how you're feeling, as many of us can testify,

    Having said that, as I said it's not all bad news, you're young and if you do things right, you can do a lot to beat it., so best of luck, we are always here and there are support groups to help .... :-)

  • Posted

    I agree with with all the comments. You sound classic ME. The beginning stages of this illness is very rough. Acceptance is step one. It's helpful to live in the present not what you were or could be. This is life changing hard to wrap your head around that. Don't be your own worst enemy. You have to rest. Our cells don't store energy. It's very limited. We don't get restorative sleep. Diet is crucial...no processed food sugars. You have to find your footing. Find a good natural doctor. Work with organics products. I'm a 20 year veteran of the disease use caution when it comes to the hundreds of prescriptions they want you to try. I did them all injections, pills 20 surgeries. They made things worse. I'm not on any prescriptions anymore. I switched to medical marijuana high in CBD and CNN's. I'm having alot of success. My pain went from a 10 to a 3. I'm not depressed anymore. Being we deal with brain inflammatory disease weed calms inflammation in the brain. I cannot believe the improvement I've had. Oh and real good quality probiotics. I have every inflammatory disease in my organs. Weed has calmed everything down. My side effects are taking a nap, eating a sandwich or falling off the couch laughing. This works for me right now. Keep asking questions. You have to make new rules be brave.

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