Monday, 17 February 2014

Frustration of "normal" results and update

Frustration of "normal" results

I remember the appointment in which I was first diagnosed with ME/CFS- the doctor started by saying 'according to your test results you are a very healthy young lady', I remember my heart dropping, thinking I was being disbelieved and I wasn't going to get any answers, but then I received a diagnosis of CFS (it's not currently possible to test 'for CFS', it's a diagnosis of exclusion so everything they test for comes back normal by definition) and remember actually feeling relieved. I didn't know then what it would mean for me, I was just pleased to finally have an answer (of sorts), it felt good to finally have an explanation for why I had been feeling unwell for so many months.

I've had lots of tests come back normal over the years- some I've desperately wanted to come back normal, some I've expected to come back normal, some have been unexpectedly normal and on occasions hearing 'normal' has been frustrating and disappointing.

I have recently had my ultrasounds (abdomen and Doppler ultrasound of liver and portal system) and to my absolute dismay they were normal. I just cannot believe with the severity of my abdominal pain and nausea, my inability to tolerate supplements/some foods, and the amount of weight I have lost, that neither my gastroscopy nor my ultrasounds have shown anything wrong. I just want someone to be able to tell me what's wrong and what they're going to do about it. I really do feel that my weight and nutrition are part of why I'm not improving/am continuing to deteriorate at the moment, so I'm desperate for someone to be able to help!

It's so annoying to hear 'normal' when for once you just want them to find something fixable. I remember when I was found to be iron deficient and severely vitamin D deficient at one point- I was so hopeful treatment would lead to an improvement, sadly it didn't, but it's strange to actually want specific problems to be found, but it's because I want to be fixed, I'm desperate to get better. I've been tested for lots of conditions over the years, as my symptoms have accumulated and morphed; some potential diagnoses have seemed to fit my symptoms really well and I've thought everything was going to fall into place and things were going to be fixable.. Sadly it's never worked out.

It's very difficult to be so broken whilst also currently unfixable. 'Normal' is not always nice.


Well, where do I start...

Last time I did an update I had just had my gastroscopy and was in the process of taking time out from Uni.

I came down with a bad cold/infection soon after my gastroscopy, so got back to my parents home having left Uni and barely left my bed for a week; I felt incredibly unwell. I was meant to be returning to my Uni-home for a few days the following week for a psych appointment and my ultrasounds but wasn't well enough to travel in time for my psych appointment so I asked her to ring me and I updated her on what had happened. I did manage to get to my ultrasounds thankfully.

It made me wonder how ME/CFS sufferers are meant to know whether they have a cold or the flu when I have every symptom of the flu apart from sneezing on a daily basis...?! I'm fairly sure it was just a cold/sinus and throat infection on this occasion, but it did make me wonder.

I have also been in contact with my dietitian. I am simply unable to tolerate any supplements, so am having to attempt to put on weight through food alone. At the moment it's going ok, but I'm not really making much progress. I have to weigh myself weekly and ring my dietitian in 4 weeks time, or earlier if my weight drops at all. I'm not really sure how I'm going to get back to a healthy weight without any supplements to help, but we'll see.. Hopefully things will pick up and I'll start to see some real sustained progress.

The cold has caused a further deterioration in my condition. I'm now spending a lot of days in bed with evenings downstairs on the sofa. I'm requiring a lot of help from my mum who brings me food and drinks regularly. I can no longer shower because of dizziness/problems being upright. Bathing is difficult, exhausting and exacerbates symptoms, but is at least lying down and I can take as long as necessary. Life has got really quite challenging. But I've had a couple of meals out in recent weeks and have had a couple of days where I have spent time with friends.

I 'managed' a trip down to stay with my grandparents and brother (with my mum), which has been nice so far. I say 'managed' because I ended up awake in agony basically all night (<1.5 hours sleep) the night after the journey because of massive overexertion (being sat up on my scooter, without the backrest, for hours and I had a bath before travelling). But it's been nice to see family and have a change of scene, and a friend came to see me yesterday which was really lovely. I have had a day in bed today, partly because I'd had the evening of travel, night awake and then the day with my friend so was in a bad way and in need of rest, but also to rest ready for tomorrow (well technically today..) because I'm going to a spa for a facial and to sit in the hot tub/lie on the loungers which will be nice. I probably won't be able to swim much but I'm sure it'll still be a nice day. I feel in need of some pampering. I've had a bath tonight ready to go out tomorrow but am now lying awake in pain as a result. You just can't win with this illness.

My temperature control is now completely broken which is proving difficult. At home I have a fan by my bed for when I overheat but I don't here. I'm constantly changing from summer pyjamas to fleecy winter ones because one minute I am burning up lying uncovered, the next minute I am freezing cold despite being wrapped in a duvet.. it's all very peculiar.

I'm still waiting to hear about my falls/faints referral and haven't heard back about my PIP claim at all yet (I checked and they have received my form). Things are looking quieter at the moment appointment-wise over the next few weeks which is nice, apart from it means I don't get to see my Uni friends which is a shame.

I can't think of anything else at the moment so take care everyone and I will update again fairly soon!


  1. With you on the 'normal/not normal' dilema. I want to be normal, but when I feel so crappy and want results to come back not normal so I can fix them and feel a bit better! HATE being told 'apart from the ME/CFS you are a perfectly normal healthy young lady - cos that makes a lot of sense!? xx Hayley-Eszti @

    1. That is exactly how I feel. Yep, that's a pretty stupid thing for them to say..! It may only be '1 thing wrong' but with the number of symptoms it causes it may as well be 100.. Take care Xx

  2. Hi Jess

    Thank you for posting so openly. This really strikes a chord with me, especially being told constantly by the health profession how 'healthy' and 'normal' you are.

    I'm currently in the middle of deciding whether I have to defer my uni course because I am feeling so bad. It's that struggle between pushing through and resting.

    Thank you again :)

    1. Thanks- it's nice to hear that others can empathise :)
      I'm sorry to hear you're having to decide whether to defer your Uni course, I know how hard those decisions are (I assume you've seen my recent blog post- I'm taking time out). I hope you're coping ok and you come to the decision that is right for you.. Do you have ME/CFS too? Feel free to message me on Facebook or twitter if you'd like to chat. Take care xx

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  4. Hi Jess, my wife has had Fibro/CFIDS/M.E. for 18 years and she went thru most of what you describe until we moved to Florida in October 2011. She found a doctor who has CFIDS himself and there were three specific tests he uses to diagnose CFIDS: No Delta sleep, no stage 3 or 4 sleep on a sleep study. High viral load; she tested positive for four different Herpes, Epstein Barr and Human Parvo virus all with high Titer and little or no antibodies found. The last was a blood test for food allergies. He provided a report that showed several dozen foods and ingredients and the allergy severity. These allergies were not the usual ones where you itch and have hives. These allergies just make you feel crappy and fatigued. He recommended avoiding all those foods for six weeks and then slowly introducing them into the diet and see how you feel.
    Dr Dantini is mainly a ENT and allergy doctor who even has worked with the US Space program and astronauts returning from space. He's had CFIDS about 20 years and still manages to practice.
    He started Char on anti-viral medication three times a day. When she has a Herpes flair (she can feel it) she takes it every seven hours because her replication cycle is 7.5 hours. She has had a lung biopsy that shows she has Herpes Simplex in her lungs. They don't know how it got there but Dantini said she has to be vigilant and stay on top of the replication cycle because if it makes it to her brain it will begin eating lobes of the brain much like M.S.
    After my wife saw him a couple of times I decided to see him for severe seasonal allergies. My wife noticed that my sleep studies also showed no Delta sleep and she suspected I had also developed CFIDS when we were living in Oregon in 2009.
    Dr Dantini ordered the lab work and sure enough, I tested high on viral load with few or no antibodies and had fifteen food allergies. He started me on anti-viral (Famcyclovir) three times daily and diagnosed CFIDS in 2012. We both had our viral loads retested in December 2013 and are still showing very high viral loads.
    My wife now has daily pain and naseua and is seltzer water seems to help with the naseua. She also takes a prescription drug for naseua but I don't have the name of it handy. If you want the name reply back and I'll ask my wife when she wakes up.
    One thing we have found that helps boost our immune system and get our gut flora working is we use Bovine or Goat Colostrum and good probiotics. I'm currently taking it four times a day (with food) for six weeks.
    There is also good evidence of parasites being a part of the whole CFIDS/M.E. thing so after I get my immune system up I will begin using a teapsoon of Food Grade Diatomaceous Earth mixed with 8 oz of water or juice. Also known as DE, Diatomaceous Earth is a form of sedimentary rock that builds the plankton in oceans and ponds. It will kill parasites in your body. If you are having a bad time after you begin taking it try backing off and taking every other day or so until your body tolerates it.
    I hope this gives you some hope and help.

    1. Sorry for the delayed response- I did read your comment at the time! I just wanted to say thank you so, so much for using your limited energy to write this comment- much appreciated. I hope you and your wife are as well as possible. Take care!

  5. I also have me/cfs and i got told to take Vegepa tablets and Spirullina and chlorella supplements.

  6. Hi Jess, I forgot to mention that Dr Dantini also has me taking 4 capsules of Megahydrate daily. Look it up. It has medical studies behind it and I ordered it off the Internet for about $50 US for a months worth.

  7. I totally understand you. I think we've all gone through this and it's so very frustrating. How can nothing show that something is wrong? I've been around and around with Fibro, with headaches, with abdominal stuff. You name it. This morning I woke up feeling like crap and when I told hubby I felt crappy his first response was "call the Dr". My response... "Why? What am I going to tell him. I feel achy." Healthy people have no concept of this.

    1. (Sorry for delayed response) I so know this feeling! It's so frustrating to have nowhere to run when things get bad. What can my doctor do- shrug his shoulders and say it's one of those things?! My doctors are great, but when I flare, there is simply no answer.. Sorry you have all similar rubbish to deal with- it makes every day a struggle, and healthy people simply don't know what that's like.. Take care x

  8. I could not agree with you more about how frustrating is to be constantly told by medical professionals how healthy and normal you are. I want something diagnosable? Anything to make sense of my CFS. I am happy to have found your blog because it makes me feel less alone. I hope we can be friends through our struggles.

    1. It is so, so frustrating. Getting normal results when you feel ridiculously ill feels invalidating. Nice to 'meet' you, and I'm so pleased to hear you've found my blog comforting! We're in this together ;) Take care x